ON Friday, there was a package when I got to work. It was from a marvelous lady, Gloria. Gloria is over eighty years old and has a healthy quest for knowledge. I met her on my first day back to work after your stroke. She is an inspiration. Last winter, she wanted to learn more about how the brain works. She read many books about various aspects of the brain and it’s functions and abilities.
She sent me two books that she found good: ‘The Healing Power of Neurofeedback’ by Stephen Larsen and ‘A Symphony in the Brain’ by Jim Robbins. With the holiday season and you coming home, I can’t imagine where I’ll find the time to read them. At this point, any insights I can develop to help you will be worth it.
While at work, I felt the excitement of my youth … only six more hours, four, three, two hours. The day got really busy and the time flew by. I made it to the hospital just in time to get your dressed and packed for the wheel chair bus. Darlene, the bus driver is great. You asked her if we could to the A&W drive-thru. She said “No”, with a smile.
Once you were home, life got busy with children and cuddle times, reading and games. There was a little chaos at the beginning, sorting out your medications and the electrical lift and how to operate it. But we got it all down to a science. The lift is a three-person affair. Quinn does the controls to get it into position, we clip you into it then Tara does the lifting with the controls and I provide the muscle to guide and Quinn is on left arm and foot patrol. It goes very smoothly and we can make transitions happen pretty quickly. Bed to chair, chair to sofa, sofa to commode etc. As you promised, you didn’t insist that we take you to a different floor. You stayed in the family room, which was the center of activity.
That night, Tara, Quinn and I were ‘fighting’ over who got to sleep with you. I rigged up an air mattress on the sofa beside the hospital bed. Once I raised up your bed to the same level, it seemed like one large king sized bed. I won the fight. But Quinn, who has been my constant companion in bed since this all began, wanted to sleep with us. I made a spot on the floor beside your bed. Normally, he would sleep between us in our bed but he would fall between the crack in the middle with this arrangement. He was happy with his spot.
Late that night, you admitted that you felt frustrated and angry. Being home had two edges to it. Home is comfortable and you get lots of attention but seeing the house and all the things you used to do but can’t now leaves you with bad feelings. This is a natural result. I plead with you to use the sense of frustration to fuel your determination, and not let it eat away at you. “Acknowledge the frustration, harness it but don’t let it own you. Use it to fuel your recovery.” Words are easy for me to say – much harder for you to heed. “
What is normal? Normal life. Normal feels the same but looks different. We ate dinner that night together. The three of us at the card table that we set up at the foot of your bed. The dinner talk sounded familiar but the picture was different. Is this going to be the theme for us in our quest for our new normal? We got you onto the reclining section of the sofa. You ate lunch and bonded with the children and watched TV. It almost seemed normal. You sat at the computer for a while and read some emails with help to find the words on the screen.
A friend, Heather, who had helped you a few years ago with some health issues, sent an email link to a BBC article about the tendency for people with parietal lobe damage to have trouble ‘attending’ to the opposite side. This is certainly the case with you. The article describes patients with this type of injury to have significant visual filed losses. This also extends to other aspects of your perception of the world. If asked to draw a clock face, the clock may only contain the numbers 12 to 6. The left side of the clock face would be left blank. This article goes on to say that music can make a difference.
http://news.bbc.co.uk/2/hi/health/8393752.stm
When patients, with this type of deficit, listened to their favorite music, their visual field expanded. The improvement was temporary but outlasted the actual music listening time period, some times by hours and days. When music was played that wasn’t favored by the patient, there was no effect. This illustrates how complex the wiring is in the brain.
From time to Quinn would feel sad during the weekend. I think he sensed your frustrations and he was trying to knowledge your losses. He would climb up into the bed and pull at your or my ear lobe. You held him and I think in doing so, you could admit a little of your grief.
Terry and Chris G. come to visit. Another normal, you and Chris hang out and talk and Terry, Fran and I yak in the kitchen. I noticed that although you had the TV within easy viewing, you didn’t watch much TV. I wonder if the visual input is another frustration to you.
Chris tells us of a little family project they are doing this year. They made some prayer flags from cloth. On each of them, they wrote a message, mantra or prayer on each that seems appropriate for the next year. This Tibetan tradition has an ancient origin that predates Buddhism. Five colours are used which represent sky, air, fire, water and earth. The messages promote peace, compassion, strength and wisdom. As the weather frays the cloth and sends tiny pieces to the winds, the prayer will be carried away to spread goodwill and compassion into the pervading space.
This exercise has captured my mind. I think it will be a fitting thing to do on New Year Day.
I made a trip to the drug store the stock up on gut moving products. It’s been a few days since your last productive efforts. At the drugstore the clerk gives me a strange look as I put quite an assortment of products on the counter. I explain the situation. I tell her that I wanted the whole ‘arse’anol for the problem. Not to be out done, when I came home with the stockpile of products, you said “Holy crap, it will feel awesome to get the job done.”
I had hoped to get a lot of things done this weekend, but the days seemed to fly by. We did finally look after Scroggins, the cat who died on the 4th day of your journey. The children and I dug a little grave beside the dogwood bush. It was hard to seen him again after all this time. But we needed to close that chapter of our lives. It seemed fitting that Scroggins would come home again the same day as you did. I had kept him at the animal hospital, frozen, until the time seemed right. This seemed like the right time. We made a grave marker for him with special messages from each of us.
I feel like we did some other timely things done like sort through the winter clothing, decorate the Christmas tree and make up presents for the new friends at the hospital. But getting Scroggins back to his home seemed the most important to me … perhaps because it seemed symbolic of the end of one chapter and the beginning of another.
You are very impressed with the children and how great they are. All the children. Tara’s lift operation skills, Quinn’s cuddles and eagerness to please, Erik’s excellent smoothie making expertise, and Neeson’s brawn.
You are even impressed with my sisters and me. In the past, you had coined and would sing the phrase “Do the Mowbray” in response to extremely clumsy maneuvers that we would manage to do on a regular basis. It was meant as a gentle tease and we all received the comment in that light. Now, you will have to coin another phrase that is a little boastful.
You were especially impressed with Neeson and his adultness that is emerging. Today at the hospital, you give Neeson $30.00 to show him how impressed you are. He tries to refuse it but you insist. Later, Neeson hands me the money, saying he didn’t want it. I try to insist that you really want him to have it because he has been such a good big cousin, but he still won’t take it.
You brag to anyone who will listen about Tara and Quinn’s sling and lift operation skills. You are proud of them. I point out to you that some of the credit goes to you and they still need you to be their Daddy. You nod in agreement.
“I want to feel whole again” you said. I thought you were talking about your lack of left-ness. But you meant you wanted the respect of the children. Being a parent makes you whole. Quinn read his journal to you. He had been writing in regularly since school started. When he got to the Halloween page, you stopped him mid way through and ask “Did I miss Halloween?” It’s still hard for you to comprehend that you missed all that time. I am so glad I have kept my journal going.
You want to contribute to society again in whatever capacity you can. We talk about the label; disabled and what it really means. It’s a definition for others who view you not a label you want for yourself. Who knows how this journey is going to turn out. I think it might be easier for a person born with a disability. There is no sense of loss. To find ‘wholeness’ after an acquired disability is much harder.
The first night home you were quite sore, but once we got your ‘as needed’ medication rationed out, the pain seemed better controlled. You slept at least 8 hours a night, possibly longer. So did I. My first good long sleeps in months. Sleeping by your side, makes our bed seem whole again.
You mood from the first evening to the next day shifted completely. Between better pain management and a very fruitful trip to the commode chair, you had every reason to feel better. When there are only a few things you can control with your body, having a victory at the commode is a boost to the morale.
On Sunday, I made the first family meal … from scratch! I have never loved to cook or even plan a meal. But after a vacation from cooking, for 16 weeks (to the day), I enjoyed the idea and the execution of cooking a meal for ten. It felt good. It felt normal. It’s like that part of my brain, that has been on vacation, is all charged up and ready to create nourishing food for the people I love. While no one said it was the best food, I had ever made, no one found a hair or got food poisoning, so this is definitely another ‘taste’ of normal.
On your return trip back today, Darlene, the driver, reminded you of your wish for A&W food. We had Neeson, Tara, Quinn and their friend Saxon ride with you in the bus. I followed in the car full of our Christmas workshop production. Once we got you established in your room, we went off in search of A&W food for everyone. Wow, fast food is expensive; it was a quarter of our weekly grocery bill!
We see the social worker on the way to A&W. She asks how the weekend went. I felt it went will with only a few low points initially. She is working on getting us a longer pass for the holidays. It might mean that I have to go into the hospital to pick up more medications part way through the holidays. You express interest in this thought. “Maybe I can convinced the others to take me down stairs while you are gone to get my medications.” You said. I tease you and say “You are not so brain damaged that you cannot plan and scheme, but you are going to have to work on keeping secrets!”
As I am writing this tonight, Annie is sleep on your bed. She enjoyed your presence and is savoring your scent on the bed. Being a dog, scent creates vivid memories. She is dreaming about our family weekend together. Having a livestock protection lineage in her family tree means she likes it when her flock is altogether.
Most of your scents don’t do that for me so instead, I took some pictures that I will treasure. At midnight, Tara came downstairs to the family room to where your bed is set up. She can’t sleep. She doesn’t know why. I settle her with the pillow you used last night and she fell asleep within minutes. I guess your scent works for her too.
We are starting to count the days again until Dec 24th.
Tuesday, December 22, 2009
Friday, December 18, 2009
Thursday December 17 – The Real Gifts In Life Are Not Just For Christmas
As your story unfolds, I am constantly amazed at the heart lifting twists that it takes. The human inter-connectiveness emerges every day to reveal another little bit of the beautifully intricate spun web that connects us all.
You are looking forward to tomorrow. You want to cuddle but you were a little messy today with breakfast so I started to clean you up. Your nurse popped her head around the curtain with a brief “Who are you and what are doing to my patient” look. Once I explained that I was me and you were ok with me giving you a sponge bath – she smiled and let me get it done.
Physio came early today. You were up and dressed and ready to go, so they seized the moment. Today is the big day. Today, you are performing your two newest feats: A lying to sit maneuver with the minimal help of one person. This you do quite well. And an assisted sitting to standing maneuver with only two people to assist you. You stand and put your head back and tuck in your butt ... You are standing! It only lasted for a few seconds but your body is reworking the pathways – it takes time. The clonus (tremors in your left leg), which has plagued you in the past, didn’t even appear today.
You acknowledge that the physio team does not cut you any slack. “It’s first thing in the morning, so I expect lots.” She said. She is still glowing about your T-spine extension from the other week. You jokingly mimic her and say “Yeah, but what have you done for me lately?”
After the physio, we get you in the chair and we tour the east wing with the OT. When we go into the dining/ TV room, we meet a couple who have been visiting the woman’s mother. Lorraine recognizes us from the QE2 days. Her mother had broken a hip and is still very ill and awaiting a bed in a long-term care facility. She is amazed at the progress she has seen with you.
Sadly, she has no reason to hope of the same progress for her 90-year-old mother. It’s clearly a difficult time for her and we talk about death of loved ones and how sometimes we are kinder to the pets in our lives then we can be to the people we love. To see your parent slowly fade away is very difficult … sometimes death is welcomed.
As we tour the halls for exercise, your OT says that she will be leaving for another hospital in a few months. You have asked her repeatedly to come for Christmas dinner, but her family is in Halifax. I explained that December 25th is your half birthday. “We will be having a big bash on Chris’ next birthday. You will have to come to that and see how Chris is doing.” She accepts our invite. You are happy. That is the first RSVP for your 46th party on June 25th!
On our way back to the room, we meet Leigh and Nancy, who you know from the church. You greet Leigh like she is long lost friend. Leigh and her mother, Nancy, saw you last when you were in the QE2 at the beginning of October. There is a big difference. Leigh is pregnant with her second child and due in three months. You ask “Let me know when you are in labour, I can cut the cord for you.”
Fonda visits too. She had been to see you last week but it was a short visit because your bodily functions got in the way. She’s back to share an inspired thought or two. Fonda was my friend first. One of the few friends, that we share, who started out as mine first. Our friendship goes back to high school. Our life journeys crisscrossed a few times until she came back to Truro with her family.
Fonda has always challenged my mind to work in ways it’s not used to. Like exerting an underused muscle. Sometimes, my brain would hurt, just trying to keep up to her. I can honestly say that with our every meeting, I have always come away a little richer in the ‘inspired thoughts’ bank account.
Today is no different. We talk about the inter-connectiveness of people and how it’s crucial to being a person. Biologically, we may be individual Homo sapiens, but in another dimension, the interconnectiveness makes us a bigger biological organism … a people. Maybe the inter-connectiveness is the result of each of us seeking a key to unlock the doors to the special gifts that we are all given. God played a trick on us. Rather then giving us the keys to our gifts, we were given the keys to other people’s locked doors. When we make connections to each other, we unlock each other’s special gifts.
You will probably tell me to give my head a shake right now. But I can’t – because somewhere in all that has happened - there is a message, a big message. I am compelled to keep searching for keys to unlock my gifts and help other unlock other people’s gifts.
Today at lunch, a gentleman came into your room. I had seen him many times in the past six weeks in the hallways. He always has a smile and a few happy words to share. He is employed at the hospital as a maintenance worker. As he checks your room’s curtains for stains, he starts up conversation. He has noticed your progress over the past six weeks too. He is very upbeat and shares with us some of his life.
He has defied death on a few occasions. He had open-heart surgery as a baby and about 15 years ago, he dad a significant part of his right side was damaged in a fight with a pickup truck. He is lucky to be alive. “You’ve heard of the 6 million dollar man, will once they put me back together, I’m the six dollar man.” I would have to disagree with his assessment. I would call him the ‘priceless man’. Recognizing a strong sense of survival, you ask “Are you a runner?” “No” he replies, “My wife used to run but now she has MS and is unable to run. “Make her laugh everyday. It’s important to laugh.” He said. I think, his wife thinks that he is a ‘priceless man’ too. I think he has unlocked a lot of his special gifts.
When you settle for your nap, I slip out to pick up your electrical lift and sling. That went quickly and so I stopped by the Mira to see Dad. He was resting quietly and I didn’t disturb him. I just sat there and thought about life and all the interconnections that exist between us. Is this the purpose of life? I cringe to think that I thought that getting through each day and ‘accomplishing’ things was the purpose. I wonder if Dad opened his all his special gifts. The nurses at the Mira say he hasn’t much time left.
I think that I have found several unlocked boxes over the past four months. The keys were given to me by many of the very people who have made your recovery possible. These unlocked boxes have given me a slightly heightened sense of awareness and purpose.
This afternoon, the staff from the church holds a small Christmas staff party in your room. They thought of everything! Marvelous hot apple cider, sandwiches and sweets. You even got a couple of Christmas presents. One was all the makings for a movie-in night or two … more. The other is a penguin cookie jar that Jay had painted. It reminded me of the Emperor penguin, which I think is a great example of how the males of a species can be great fathers. A very fitting present for you.
Tonight we are going to get a Christmas tree. I pick up Neeson and Erik from Juanita’s and head out to pick up Tara and Quinn. As we drive in the car, Neeson wonders, aloud, about (my) Dad’s room. He had just realized that in a long-term care facility, a bed opens up only when a resident dies. I wonder who would get Grandpa’s room” he said half to himself. I think of Lorraine and her 90-year-old mother and wonder that too.
We get up to your room and Juanita and Wayne are there to visit. Juanita gives you a special rock that she carried around for a few years. It has the word ‘Believe’ engraved on it. She carried it with her when she was really working hard to lose weight so her health would improve. She lost weight, enough weight to have two beautiful health babies. This rock gave her two miracles. She wanted you to have it so you can believe in yourself.
The four kids, you, Wayne and me walk and wheel over to the tree lot across from the hospital. I explain to the gentleman, that we have a family tradition that we started last year. We want to give a good home to an ‘ugly’ tree. Tradition may be a strong word to use here but, the children so loved the thought of doing this we started calling it a tradition the day after we started it last year. One year, before it became a tradition to get an imperfect tree, we got a lopsided tree that had a gift of a beautifully intact bird’s nest. I don’t think there are really any ugly trees, but some trees are un-naturally perfect and they seem a little out of place in the real world.
The gentleman smiles and shows us a few trees that are crooked or flat on one side. He even showed us a ‘Charlie Brown’ tree. Tara was quite keen on it. “It’s the type of tree your Dad would have cut down when you were a kid.” He said. He was right. I remember many straggly and slightly crooked trees in my childhood. The thought put a smile in my mind. I pictured my Dad going into the woods with the family to get the tree.
We settle on a tree that is rather crooked but the right size. You are getting cold. It would have to be the coldest day so far this season. When I tried to pay for the tree, the gentleman refused to take anything for it. He identified himself as Amanda’s father. I know Amanda from the animal hospital. She has a good way with animals. Now I know where she got her kind nature.
Tara is upset when we get back to your room. She has noticed that when she is with Neeson and Erik, she feels like she is demoted being one of the youngest. She does not like this feeling. I wouldn’t let her push you across the busy street in the wheel chair. I let Neeson do it. You recognized that she’s upset before I did. You ask if you can spend a minute with her. You talk with her and tell her how proud you are of her and how much she has grown up in the past four months. She beams and hugs you.
Tonight, Richard, a childhood friend, called from Ottawa. He had been following your progress from a distance. Next week he and his family are travelling to Nova Scotia for the holidays. They will be here next week. You will be delighted to see him. He asked how I was doing. I said I think that things will be easy for me now, but your work is just starting. The only hard thing now, is to convince you that you can do it. To believe in yourself and believe that you deserve this gift.
As an adult you have been given the test – the ultimate test to believe in yourself. Perhaps your stroke was one of many keys that you need to open one of your special gifts. The gift of Belief.
There will be no blog tomorrow – I’m going to be busy cuddling with you in our house on our sofa watching a movie or two. I can’t wait …one more sleep.
You are looking forward to tomorrow. You want to cuddle but you were a little messy today with breakfast so I started to clean you up. Your nurse popped her head around the curtain with a brief “Who are you and what are doing to my patient” look. Once I explained that I was me and you were ok with me giving you a sponge bath – she smiled and let me get it done.
Physio came early today. You were up and dressed and ready to go, so they seized the moment. Today is the big day. Today, you are performing your two newest feats: A lying to sit maneuver with the minimal help of one person. This you do quite well. And an assisted sitting to standing maneuver with only two people to assist you. You stand and put your head back and tuck in your butt ... You are standing! It only lasted for a few seconds but your body is reworking the pathways – it takes time. The clonus (tremors in your left leg), which has plagued you in the past, didn’t even appear today.
You acknowledge that the physio team does not cut you any slack. “It’s first thing in the morning, so I expect lots.” She said. She is still glowing about your T-spine extension from the other week. You jokingly mimic her and say “Yeah, but what have you done for me lately?”
After the physio, we get you in the chair and we tour the east wing with the OT. When we go into the dining/ TV room, we meet a couple who have been visiting the woman’s mother. Lorraine recognizes us from the QE2 days. Her mother had broken a hip and is still very ill and awaiting a bed in a long-term care facility. She is amazed at the progress she has seen with you.
Sadly, she has no reason to hope of the same progress for her 90-year-old mother. It’s clearly a difficult time for her and we talk about death of loved ones and how sometimes we are kinder to the pets in our lives then we can be to the people we love. To see your parent slowly fade away is very difficult … sometimes death is welcomed.
As we tour the halls for exercise, your OT says that she will be leaving for another hospital in a few months. You have asked her repeatedly to come for Christmas dinner, but her family is in Halifax. I explained that December 25th is your half birthday. “We will be having a big bash on Chris’ next birthday. You will have to come to that and see how Chris is doing.” She accepts our invite. You are happy. That is the first RSVP for your 46th party on June 25th!
On our way back to the room, we meet Leigh and Nancy, who you know from the church. You greet Leigh like she is long lost friend. Leigh and her mother, Nancy, saw you last when you were in the QE2 at the beginning of October. There is a big difference. Leigh is pregnant with her second child and due in three months. You ask “Let me know when you are in labour, I can cut the cord for you.”
Fonda visits too. She had been to see you last week but it was a short visit because your bodily functions got in the way. She’s back to share an inspired thought or two. Fonda was my friend first. One of the few friends, that we share, who started out as mine first. Our friendship goes back to high school. Our life journeys crisscrossed a few times until she came back to Truro with her family.
Fonda has always challenged my mind to work in ways it’s not used to. Like exerting an underused muscle. Sometimes, my brain would hurt, just trying to keep up to her. I can honestly say that with our every meeting, I have always come away a little richer in the ‘inspired thoughts’ bank account.
Today is no different. We talk about the inter-connectiveness of people and how it’s crucial to being a person. Biologically, we may be individual Homo sapiens, but in another dimension, the interconnectiveness makes us a bigger biological organism … a people. Maybe the inter-connectiveness is the result of each of us seeking a key to unlock the doors to the special gifts that we are all given. God played a trick on us. Rather then giving us the keys to our gifts, we were given the keys to other people’s locked doors. When we make connections to each other, we unlock each other’s special gifts.
You will probably tell me to give my head a shake right now. But I can’t – because somewhere in all that has happened - there is a message, a big message. I am compelled to keep searching for keys to unlock my gifts and help other unlock other people’s gifts.
Today at lunch, a gentleman came into your room. I had seen him many times in the past six weeks in the hallways. He always has a smile and a few happy words to share. He is employed at the hospital as a maintenance worker. As he checks your room’s curtains for stains, he starts up conversation. He has noticed your progress over the past six weeks too. He is very upbeat and shares with us some of his life.
He has defied death on a few occasions. He had open-heart surgery as a baby and about 15 years ago, he dad a significant part of his right side was damaged in a fight with a pickup truck. He is lucky to be alive. “You’ve heard of the 6 million dollar man, will once they put me back together, I’m the six dollar man.” I would have to disagree with his assessment. I would call him the ‘priceless man’. Recognizing a strong sense of survival, you ask “Are you a runner?” “No” he replies, “My wife used to run but now she has MS and is unable to run. “Make her laugh everyday. It’s important to laugh.” He said. I think, his wife thinks that he is a ‘priceless man’ too. I think he has unlocked a lot of his special gifts.
When you settle for your nap, I slip out to pick up your electrical lift and sling. That went quickly and so I stopped by the Mira to see Dad. He was resting quietly and I didn’t disturb him. I just sat there and thought about life and all the interconnections that exist between us. Is this the purpose of life? I cringe to think that I thought that getting through each day and ‘accomplishing’ things was the purpose. I wonder if Dad opened his all his special gifts. The nurses at the Mira say he hasn’t much time left.
I think that I have found several unlocked boxes over the past four months. The keys were given to me by many of the very people who have made your recovery possible. These unlocked boxes have given me a slightly heightened sense of awareness and purpose.
This afternoon, the staff from the church holds a small Christmas staff party in your room. They thought of everything! Marvelous hot apple cider, sandwiches and sweets. You even got a couple of Christmas presents. One was all the makings for a movie-in night or two … more. The other is a penguin cookie jar that Jay had painted. It reminded me of the Emperor penguin, which I think is a great example of how the males of a species can be great fathers. A very fitting present for you.
Tonight we are going to get a Christmas tree. I pick up Neeson and Erik from Juanita’s and head out to pick up Tara and Quinn. As we drive in the car, Neeson wonders, aloud, about (my) Dad’s room. He had just realized that in a long-term care facility, a bed opens up only when a resident dies. I wonder who would get Grandpa’s room” he said half to himself. I think of Lorraine and her 90-year-old mother and wonder that too.
We get up to your room and Juanita and Wayne are there to visit. Juanita gives you a special rock that she carried around for a few years. It has the word ‘Believe’ engraved on it. She carried it with her when she was really working hard to lose weight so her health would improve. She lost weight, enough weight to have two beautiful health babies. This rock gave her two miracles. She wanted you to have it so you can believe in yourself.
The four kids, you, Wayne and me walk and wheel over to the tree lot across from the hospital. I explain to the gentleman, that we have a family tradition that we started last year. We want to give a good home to an ‘ugly’ tree. Tradition may be a strong word to use here but, the children so loved the thought of doing this we started calling it a tradition the day after we started it last year. One year, before it became a tradition to get an imperfect tree, we got a lopsided tree that had a gift of a beautifully intact bird’s nest. I don’t think there are really any ugly trees, but some trees are un-naturally perfect and they seem a little out of place in the real world.
The gentleman smiles and shows us a few trees that are crooked or flat on one side. He even showed us a ‘Charlie Brown’ tree. Tara was quite keen on it. “It’s the type of tree your Dad would have cut down when you were a kid.” He said. He was right. I remember many straggly and slightly crooked trees in my childhood. The thought put a smile in my mind. I pictured my Dad going into the woods with the family to get the tree.
We settle on a tree that is rather crooked but the right size. You are getting cold. It would have to be the coldest day so far this season. When I tried to pay for the tree, the gentleman refused to take anything for it. He identified himself as Amanda’s father. I know Amanda from the animal hospital. She has a good way with animals. Now I know where she got her kind nature.
Tara is upset when we get back to your room. She has noticed that when she is with Neeson and Erik, she feels like she is demoted being one of the youngest. She does not like this feeling. I wouldn’t let her push you across the busy street in the wheel chair. I let Neeson do it. You recognized that she’s upset before I did. You ask if you can spend a minute with her. You talk with her and tell her how proud you are of her and how much she has grown up in the past four months. She beams and hugs you.
Tonight, Richard, a childhood friend, called from Ottawa. He had been following your progress from a distance. Next week he and his family are travelling to Nova Scotia for the holidays. They will be here next week. You will be delighted to see him. He asked how I was doing. I said I think that things will be easy for me now, but your work is just starting. The only hard thing now, is to convince you that you can do it. To believe in yourself and believe that you deserve this gift.
As an adult you have been given the test – the ultimate test to believe in yourself. Perhaps your stroke was one of many keys that you need to open one of your special gifts. The gift of Belief.
There will be no blog tomorrow – I’m going to be busy cuddling with you in our house on our sofa watching a movie or two. I can’t wait …one more sleep.
Wednesday, December 16, 2009
Wednesday December 16 - A New Room - 428
Quinn has always been hard to wake up in the mornings. Except weekend mornings. It’s not because it’s a school day - He loves school. It’s just because it’s a morning and he has a certain degree of inertia – his wakes up slowly and falls asleep slowly. Every morning at 7am, I turn on the radio loudly, tell him it’s time to get up and pull the covers off him. Sometimes I even give him a vigorous back rub to wake him up. None of these tactics really work.
Lately I have been using the Christmas button. “Hey Quinn, how many more days to Christmas?” I’d ask. Initially this worked. Within a few minutes he would shake away the layer of sleep that settled on him and answer me … correctly. Today, I asked “Hey Quinn, how many more days until Daddy is home?” The response was great. He bolted straight up in bed and shouted “Two more days!” Then he jumped out of bed and ran to start the day. You are more important then the big guy, Santa.
Last night I was on call. I have started doing on-call occasionally when I can to help my colleagues who have been courageously ‘carrying the torch’ and I think, they deserve a well-earned break. Today, I learned a lesson. I can not multitask the journal writing with other things. Until now the only time I write is when the children are in bed and asleep or when you were ‘asleep’ in the early days.
Today, it was brought to my attention that I made a mistake – a typo on the entry from last night. I actually quoted your OT to say that you can do stairs in the chair. I clearly didn’t proofread it.
I had started writing the entry, last night, then I got called in to help a cute little chihuahua who thought that she could eat stuff that shouldn’t be eaten … that least not eaten by a 5 pound chihuahua. I examined her and did xrays and sent her home. It was almost eleven when I got home. I thought I’d just finish off the day and go to bed early in case I had more calls over the night. (That is early for me) I finished the writing and proofread … at least I thought I proofread. I forgot to proofread what I had written before the chihuahua call!
As a result, I grossly misrepresented what the OT had said. I have already corrected that on yesterday’s entry. If anyone had read it before 6pm today – you might have guessed that something was off – because a lot of it didn’t make sense. I know my grammar and spelling has been bad in the past – but it only reflects on me, not someone else, so I don’t mind as much. I feel very badly about this mistake.
My deepest apologies go out to her and I will grovel to her tomorrow. In the future, if I’m on call, I either won’t write or at least not post it until the next day when I can be more focused and actually proofread it thoroughly.
We had talked about what we can do to help out my fellow veterinarians at the hospital with the on-call schedule. The past six months or so before your stroke, I did most of the night on-call. Being a bit of a night owl, living close to the hospital and having the children involved with so many things, made this a good solution for me and Julia. I did all the nights and Julia and Melissa shared the weekend days.
The problem with this system is that it requires another grownup in the house to be present incase I’m called away in the middle of the night. Weekends are OK because Tara and Quinn would love to sleep over at Juanita’s. School nights are the problem nights. I had thought about the three of us and Annie camping out at the hospital in the staff room upstairs. We did this before when we had no power, hence, no heat for 4 days, when white Juan had hit. It was fun and we could do this and then I could drive them to school in the morning.
It seems, there are always lots of little logistics that have to be planned for to make anything simple happen these days. The effort to plan and execute our family’s and my work’s needs must be similar to you trying to make new pathways to do the things you used to do without thought before. For both of us, the simple tasks are much more mental then they used to be.
At work I got a call from your social worker. She said that you are moving to anophter bed today. I managed to finish work early and Annie and I walked home. Fran had already visited you today and helped take down the wall of cards we had up in your room.
When I got there the room seemed strangely empty. Janet was visiting you. You had volunteered in her grade primary class every year since Tara had started school. She is the type of teacher who makes school fun. She has a gift of making learning fun. It is fun to watch the little ones soak up the school experience while under her wing. Her enthusiasm spread to you. As a result you loved volunteering for her.
Dr Padmore (?), the urologist, came to visit. He is pleased with your urological control. He wants to do some functional tests to assess your urine capabilities just to be sure things are OK. Next week, you get to pee in a ‘magic’ toilet. It tests your flow dynamics of urine. This may help sort out why you are so prone to bladder infections. The physiotherapist is going to make sure that you can access the ‘magic’ toilet
Your favorite LPN and hospital maintenance lady arrive to help move you to your new room. You are being moved to the east wing. Room 428, bed 2. As I understand it, this floor is for people who are waiting to go somewhere. I feel good about this move. I was feeling a little selfish of wanting you home on passes and yet have the hospital hold a bed space for you. It seemed wrong, like double dipping. An act you can not abide. I imagine that are people in other hospitals who would love to be closer to their home and their loved ones. But they are stuck where they are, waiting for a space to open up.
We pack your things. In four months, you have managed to accumulate a lot of things. As we pack up, the physio and OT team arrives. They look at you with things piled high on top of you on your bed and realize that physio won’t happen today. We talk about your progress because I missed see them yesterday. She were going to try doing a assisted standing without the lift today because she had noticed that you are relying more on the machine to stand you up then to assist you in standing on your own. The difference is subtle but I can appreciate the importance.
We get you settled in the new room. You have a room-mate. I think you will enjoy the company. I look at the bags of things that have been left for you to inspire your spirit and feed your soul. I select some things to leave with you and the rest I will take home. I had thought that I would hang the pictures and inspirational things in a corner of your man room.
Thankfully, your room is big. It already has many themes decorating it. Currently, in one corner, you have a shrine of sorts to the Boston Marathon. Two other corners are taken up with your fish and your TV and you have a wall for your Rod Carew treasures. That leaves only one other corner which I will make into the “Head’ Quarters for Chris’ Addiction to Life Marathon. The children and I will make this space special for you next week. This can be our Christmas present to you.
Lately I have been using the Christmas button. “Hey Quinn, how many more days to Christmas?” I’d ask. Initially this worked. Within a few minutes he would shake away the layer of sleep that settled on him and answer me … correctly. Today, I asked “Hey Quinn, how many more days until Daddy is home?” The response was great. He bolted straight up in bed and shouted “Two more days!” Then he jumped out of bed and ran to start the day. You are more important then the big guy, Santa.
Last night I was on call. I have started doing on-call occasionally when I can to help my colleagues who have been courageously ‘carrying the torch’ and I think, they deserve a well-earned break. Today, I learned a lesson. I can not multitask the journal writing with other things. Until now the only time I write is when the children are in bed and asleep or when you were ‘asleep’ in the early days.
Today, it was brought to my attention that I made a mistake – a typo on the entry from last night. I actually quoted your OT to say that you can do stairs in the chair. I clearly didn’t proofread it.
I had started writing the entry, last night, then I got called in to help a cute little chihuahua who thought that she could eat stuff that shouldn’t be eaten … that least not eaten by a 5 pound chihuahua. I examined her and did xrays and sent her home. It was almost eleven when I got home. I thought I’d just finish off the day and go to bed early in case I had more calls over the night. (That is early for me) I finished the writing and proofread … at least I thought I proofread. I forgot to proofread what I had written before the chihuahua call!
As a result, I grossly misrepresented what the OT had said. I have already corrected that on yesterday’s entry. If anyone had read it before 6pm today – you might have guessed that something was off – because a lot of it didn’t make sense. I know my grammar and spelling has been bad in the past – but it only reflects on me, not someone else, so I don’t mind as much. I feel very badly about this mistake.
My deepest apologies go out to her and I will grovel to her tomorrow. In the future, if I’m on call, I either won’t write or at least not post it until the next day when I can be more focused and actually proofread it thoroughly.
We had talked about what we can do to help out my fellow veterinarians at the hospital with the on-call schedule. The past six months or so before your stroke, I did most of the night on-call. Being a bit of a night owl, living close to the hospital and having the children involved with so many things, made this a good solution for me and Julia. I did all the nights and Julia and Melissa shared the weekend days.
The problem with this system is that it requires another grownup in the house to be present incase I’m called away in the middle of the night. Weekends are OK because Tara and Quinn would love to sleep over at Juanita’s. School nights are the problem nights. I had thought about the three of us and Annie camping out at the hospital in the staff room upstairs. We did this before when we had no power, hence, no heat for 4 days, when white Juan had hit. It was fun and we could do this and then I could drive them to school in the morning.
It seems, there are always lots of little logistics that have to be planned for to make anything simple happen these days. The effort to plan and execute our family’s and my work’s needs must be similar to you trying to make new pathways to do the things you used to do without thought before. For both of us, the simple tasks are much more mental then they used to be.
At work I got a call from your social worker. She said that you are moving to anophter bed today. I managed to finish work early and Annie and I walked home. Fran had already visited you today and helped take down the wall of cards we had up in your room.
When I got there the room seemed strangely empty. Janet was visiting you. You had volunteered in her grade primary class every year since Tara had started school. She is the type of teacher who makes school fun. She has a gift of making learning fun. It is fun to watch the little ones soak up the school experience while under her wing. Her enthusiasm spread to you. As a result you loved volunteering for her.
Dr Padmore (?), the urologist, came to visit. He is pleased with your urological control. He wants to do some functional tests to assess your urine capabilities just to be sure things are OK. Next week, you get to pee in a ‘magic’ toilet. It tests your flow dynamics of urine. This may help sort out why you are so prone to bladder infections. The physiotherapist is going to make sure that you can access the ‘magic’ toilet
Your favorite LPN and hospital maintenance lady arrive to help move you to your new room. You are being moved to the east wing. Room 428, bed 2. As I understand it, this floor is for people who are waiting to go somewhere. I feel good about this move. I was feeling a little selfish of wanting you home on passes and yet have the hospital hold a bed space for you. It seemed wrong, like double dipping. An act you can not abide. I imagine that are people in other hospitals who would love to be closer to their home and their loved ones. But they are stuck where they are, waiting for a space to open up.
We pack your things. In four months, you have managed to accumulate a lot of things. As we pack up, the physio and OT team arrives. They look at you with things piled high on top of you on your bed and realize that physio won’t happen today. We talk about your progress because I missed see them yesterday. She were going to try doing a assisted standing without the lift today because she had noticed that you are relying more on the machine to stand you up then to assist you in standing on your own. The difference is subtle but I can appreciate the importance.
We get you settled in the new room. You have a room-mate. I think you will enjoy the company. I look at the bags of things that have been left for you to inspire your spirit and feed your soul. I select some things to leave with you and the rest I will take home. I had thought that I would hang the pictures and inspirational things in a corner of your man room.
Thankfully, your room is big. It already has many themes decorating it. Currently, in one corner, you have a shrine of sorts to the Boston Marathon. Two other corners are taken up with your fish and your TV and you have a wall for your Rod Carew treasures. That leaves only one other corner which I will make into the “Head’ Quarters for Chris’ Addiction to Life Marathon. The children and I will make this space special for you next week. This can be our Christmas present to you.
Tuesday December 15 - What Does Not Break You, Makes You Stronger.
You are down again today. It’s such a roller coaster. I can hardly keep up. I think that a lot of your malaise is to do with the fact that your bowels haven’t been regular. You are ‘bummed’ out.
The occupational therapist came over to see our house lay out. She wanted to see if there was anything that may pose as a problem or obstacle to you. You wanted her to see your man-cave because you have mentioned several times that you figured that you could slide down the stairs on your bum and crawl to your favorite chair and watch TV! This is a fantasy that, I’m sure, has fueled a little of your enthusiasm to come home. If you could sit in your chair and imagine for even just a minute, that the past four months have been all part of a bad dream, you would be a happy man.
I promised I’d show her the setup, feeling fairly confident that she would say this was a very bad idea. She did. “I can't recommend that you carry Chris down the stairs.” (this initially said 'can '- but I forgot to proof read this well last night - so I am correcting it now - She definitely said 'CAN'T' - and I'm glad she did.- sorry I should have proof read in the morning when I have a fresh mind!). “Of course, you must use your own judgment.” She added, saying there may be a little latitude without using words. When we discuss the house setup in your hospital room, you agree that safety is the first priority. I don’t think you interpreted any latitude in her advise and I didn’t bring it to you attention. Instead, I simply said “Let’s get through this weekend and see how things go before we think about other things to do in the house.
I am secretly glad that the OT said this because, I don’t want to see you isolated in your man cave. You need social interaction not isolation. If you can stay in your chair for longer periods, I can see carrying you down the stairs in your chair so you can explore you special world of treasures in your room. But this should be left for another time.
I plan to set up an air mattress beside your hospital bed and sleep beside you. So if you need something in the middle of the night, I’d be right there. I’m looking forward to that. We start planning things that we can do while you are home. The biggest item on the agenda is to organize little presents for some of the wonderful people who have touched our lives in these past months. We van transform the family room into a little Santa workshop.
You got you flu vaccines today. I am relieved that we don’t have to worry about that risk.
I head out to the Royal Canadian Legion. There, Chris F, set us up with a wheel chair and a commode. As an after thought, I asked if he would have a bedpan. He said he might. We went digging about in a well-organized storage room filled with many wheel chairs and walker and canes, even special comforty lift chairs. He found one and handed it to me while saying, “We don’t want that back.” I joked and said that maybe it could become a flowerpot to commemorate this chapter in your life. Maybe put a prayer plant in it. As we parted, he shook my hand and said “What doesn’t kill you makes you stronger.”
Actually, I believe that the saying is: “What doesn’t break you makes you stronger.”
I remember the first time I heard that saying. It was the year before Tara was born. I was visiting my brother in Banff. I stayed at the hostel where he worked. I had a great time until the third to last day. Bill and I went to Lake Louise to ski. I had never skied in such powdery conditions before. As we climbed to the top of the mountain in the lift, I remember having a feeling that I never had before. The feeling of fear. Fear of getting hurt. Until then I had always had an invincible attitude about life. “Go of it” was my mantra. But that day I felt apprehension. I felt this before I even got off the lift. I made a deal with my self, that if I got down the mountain in one piece, I would stay on the lower slopes. “If I got down the mountain in one piece.” That was a new phrase to my mind. I decided that I was just being silly and over rode my fear and ‘went for it.’
Within five minutes from the top, I was in trouble. I fell and my legs did things that legs shouldn’t do. I heard a tear in my left knee. The pain was mind numbing.
It turns out that I really screwed my knee. The rest of the holiday in ski country was spent in self-pity. The next day at the café, I dined with a fellow hosteler. She was a older woman, maybe late sixties but still full of life and positive energy. She was visiting from Germany.
She dished out some much-appreciated sympathy and a long conversation took over. She had nursed both her husbands through serious chronic disease until their deaths, dealt with cancer twice herself as well as a few other family tragedies. Yet here she was in front of me oozing positive energy. “You must believe that what doesn’t kill you makes you stronger, how else can you get through all that an still see things and life as good” I said. “Actually, she said that is an old German saying and literally translated it is: What does not break you, makes you stronger. Break is a better word then kill don’t you think?”
I have thought a lot about that lady in the recent months. A stranger whose path meandered with mine and left a seed planted in my mind. Of course the statement isn't true. People are usually weakened, not strengthened, by repeated adversity. This is an affirmation. Affirmations start out being untrue. But repetition can make it a self-fulfilling prophecy. It may be self-deception or blind strength that is really at work but the outcome of such thinking tends to be positive. I think I have benefited from it.
Now I think about it. The whole ‘fall down the mountain’ thing was a blessing. When you picked me up at the airport. You went right into nurture mode. Making sure I was as comfortable as I could be. Tending to my every need. I was not used to being treated like that. During those months of recovery, I came to see another side of you that I had never allowed myself to see. This is mostly because, I was always the one that nurtured and tended to things. I think, that in my subconscious mind, I realized that if you could care for me so well, then you could care for our offspring too. Oddly enough within six months of my accident, we were pregnant.
What does not break you, makes you stronger … it really does.
Tonight was Christmas concert number four. We have on more next week then we are done the official Christmas events. Both Tara and Quinn sung. Tara played her ukulele too. It was a good time.
Tonight I am on-call. Julia and Melissa have covered so much on-call time over the past months, I want to give them a break when I can. With Fran in town, I can. She was going to stay with the children, but Neeson, age 13 and very mature, jumped at the chance to babysit! He is growing into a responsible young man. Tara and Quinn both like him and, I think, they may even listen to him.
The occupational therapist came over to see our house lay out. She wanted to see if there was anything that may pose as a problem or obstacle to you. You wanted her to see your man-cave because you have mentioned several times that you figured that you could slide down the stairs on your bum and crawl to your favorite chair and watch TV! This is a fantasy that, I’m sure, has fueled a little of your enthusiasm to come home. If you could sit in your chair and imagine for even just a minute, that the past four months have been all part of a bad dream, you would be a happy man.
I promised I’d show her the setup, feeling fairly confident that she would say this was a very bad idea. She did. “I can't recommend that you carry Chris down the stairs.” (this initially said 'can '- but I forgot to proof read this well last night - so I am correcting it now - She definitely said 'CAN'T' - and I'm glad she did.- sorry I should have proof read in the morning when I have a fresh mind!). “Of course, you must use your own judgment.” She added, saying there may be a little latitude without using words. When we discuss the house setup in your hospital room, you agree that safety is the first priority. I don’t think you interpreted any latitude in her advise and I didn’t bring it to you attention. Instead, I simply said “Let’s get through this weekend and see how things go before we think about other things to do in the house.
I am secretly glad that the OT said this because, I don’t want to see you isolated in your man cave. You need social interaction not isolation. If you can stay in your chair for longer periods, I can see carrying you down the stairs in your chair so you can explore you special world of treasures in your room. But this should be left for another time.
I plan to set up an air mattress beside your hospital bed and sleep beside you. So if you need something in the middle of the night, I’d be right there. I’m looking forward to that. We start planning things that we can do while you are home. The biggest item on the agenda is to organize little presents for some of the wonderful people who have touched our lives in these past months. We van transform the family room into a little Santa workshop.
You got you flu vaccines today. I am relieved that we don’t have to worry about that risk.
I head out to the Royal Canadian Legion. There, Chris F, set us up with a wheel chair and a commode. As an after thought, I asked if he would have a bedpan. He said he might. We went digging about in a well-organized storage room filled with many wheel chairs and walker and canes, even special comforty lift chairs. He found one and handed it to me while saying, “We don’t want that back.” I joked and said that maybe it could become a flowerpot to commemorate this chapter in your life. Maybe put a prayer plant in it. As we parted, he shook my hand and said “What doesn’t kill you makes you stronger.”
Actually, I believe that the saying is: “What doesn’t break you makes you stronger.”
I remember the first time I heard that saying. It was the year before Tara was born. I was visiting my brother in Banff. I stayed at the hostel where he worked. I had a great time until the third to last day. Bill and I went to Lake Louise to ski. I had never skied in such powdery conditions before. As we climbed to the top of the mountain in the lift, I remember having a feeling that I never had before. The feeling of fear. Fear of getting hurt. Until then I had always had an invincible attitude about life. “Go of it” was my mantra. But that day I felt apprehension. I felt this before I even got off the lift. I made a deal with my self, that if I got down the mountain in one piece, I would stay on the lower slopes. “If I got down the mountain in one piece.” That was a new phrase to my mind. I decided that I was just being silly and over rode my fear and ‘went for it.’
Within five minutes from the top, I was in trouble. I fell and my legs did things that legs shouldn’t do. I heard a tear in my left knee. The pain was mind numbing.
It turns out that I really screwed my knee. The rest of the holiday in ski country was spent in self-pity. The next day at the café, I dined with a fellow hosteler. She was a older woman, maybe late sixties but still full of life and positive energy. She was visiting from Germany.
She dished out some much-appreciated sympathy and a long conversation took over. She had nursed both her husbands through serious chronic disease until their deaths, dealt with cancer twice herself as well as a few other family tragedies. Yet here she was in front of me oozing positive energy. “You must believe that what doesn’t kill you makes you stronger, how else can you get through all that an still see things and life as good” I said. “Actually, she said that is an old German saying and literally translated it is: What does not break you, makes you stronger. Break is a better word then kill don’t you think?”
I have thought a lot about that lady in the recent months. A stranger whose path meandered with mine and left a seed planted in my mind. Of course the statement isn't true. People are usually weakened, not strengthened, by repeated adversity. This is an affirmation. Affirmations start out being untrue. But repetition can make it a self-fulfilling prophecy. It may be self-deception or blind strength that is really at work but the outcome of such thinking tends to be positive. I think I have benefited from it.
Now I think about it. The whole ‘fall down the mountain’ thing was a blessing. When you picked me up at the airport. You went right into nurture mode. Making sure I was as comfortable as I could be. Tending to my every need. I was not used to being treated like that. During those months of recovery, I came to see another side of you that I had never allowed myself to see. This is mostly because, I was always the one that nurtured and tended to things. I think, that in my subconscious mind, I realized that if you could care for me so well, then you could care for our offspring too. Oddly enough within six months of my accident, we were pregnant.
What does not break you, makes you stronger … it really does.
Tonight was Christmas concert number four. We have on more next week then we are done the official Christmas events. Both Tara and Quinn sung. Tara played her ukulele too. It was a good time.
Tonight I am on-call. Julia and Melissa have covered so much on-call time over the past months, I want to give them a break when I can. With Fran in town, I can. She was going to stay with the children, but Neeson, age 13 and very mature, jumped at the chance to babysit! He is growing into a responsible young man. Tara and Quinn both like him and, I think, they may even listen to him.
Monday, December 14, 2009
Monday December 14 – Craving a Normal Life.
First thing this morning I called Dr. Feltmate’s office and your social worker. I left a message for the doctor but I got straight through to the social worker. We discussed my concerns about your mental health. I feel that things are a little worse, not better. I ask about a psychological consult. She is going to discuss it with the doctor.
I broach the topic of a weekend pass this coming weekend to see if that helps your emotions. She promises to look into it. I felt much better after the talk. I don’t feel so alone in advocating for you.
We found out last Thursday that you are seventh on the wait list to the NSRC. This translates to about a 6 weeks wait. We were told that if you are discharged from the hospital, you still maintain your position on the list. This is crucial information. We discuss this later in the day. No Christmas is worth the price of delayed rehab for you. We agreed that we both feel very strongly about this. Rehab possibilities take priority over everything else.
I made some calls and arranged for the equipment to come a little earlier and to have it a little longer. It’s all set. We will get most of the things between Tuesday and Thursday and the last item will be the bed, which we will get on Friday. Then all we will need is you to make the picture complete.
The social worker and I discussed the possibility of you being discharged from the hospital. She had said that outpatient physio may be a possibility as long as there can be someone to accompany you to and from the physio appointments. With such a strong supportive circle around us, I think that this could happen. But she cautioned me to “see what this weekend is like”. She is right. I must walk before I run. But I’m just so happy to have you home and have a little more normal in our lives.
We have all been craving some normal and we are going to get it for Christmas!
Last night when we got home, Tara complained of a sore chest. “The bone hurts.” She gestures to her sternum. I take her temperature and her pulse, they are OK. I asked if it hurt to swallow. She said yes. “Do you have a bad taste in your mouth?” Again “Yes.”
I think Tara has heartburn. I explain to her what that is. I suggest that she drink some water and get into bed. This morning, Tara is not any better. She said the pain kept her up most of the night. I decide that she not go to school today. I take her over to Juanita’s house for the day and feed her a TUMS tablet. An hour later, she is still no better, so I call our family doctor and get an appointment for 2:45.
Yesterday, while Tara was cleaning her room, she found a watch that she had forgotten she had. She has been keeping track of time since. First, she was worried we would be late … we were on time. Then she worried “Dr. Bell is late. My appointment was 15 minutes ago.” She keeps checking her watch. The her apple didn’t fall far from the your tree. This is her effort to try and control what she can. Time is a challenging dimension to control. I think this adds to her worries.
I talk to Dr. Bell privately for a few seconds. I suggest to her that anxiety is an issue and that a good physical exam would be good to waylay her fears. She gets a good once over examination. Then, Dr. Bell asks questions about her symptoms and about life in general. She thinks it’s heartburn too and she talks to Tara about how stress can do this to your body. I think Tara gets it. We leave with a script for medication and some advice to try to leave the worrying to others and take time to enjoy life. “Do things that make you happy and remember that Daddy is getting better every day.” If only I can heed this advice too.
As Tara and I go up to your room to visit, we run into the social worker from this morning. I introduce Tara and explain “That this is Daddy’s social worker.” As we climbed the stairs, Tara asks me “What is a social worker?” I am lost for words. After a few seconds thought, I said that a social worker is someone who helps a person get his or her life back to as normal as it can be. I added ,that I thought she was very good at this, because she has helped Daddy a lot.
I haven’t seen you since last night and haven’t talked with you since this morning before work. You look relaxed and pleased. You tell me of the good talk you had with the social worker, and how she is very bright and knew just the right things to say to you. She helped you change your outlook. You are very happy about coming home for the weekend. You are very concerned that coming home for longer then the two-day passes, may endanger your position on the list. We have been reassured that you will stay on the list, but you would like that in writing. You want to stay focused on the goal of rehab.
You are concerned that your presence in the house will “burden” me. There is that word again. I hate the word, burden. “You, at home, would not be a burden … it would easy compared to what I’m doing now. To have our family all together in your home is not a burden, it is a labour of love.” Emotionally, I think it will be easy. This will give us all a little normal.
I think I can hear some of the social worker’s practical advice being echoed by you. I try to stay practical too. For now the two-day pass for this weekend is the smart approach to take. From there, we will see.
We work on your Christmas list. It’s getting long. You want to give big presents to many of the staff in the hospital. “I am really attached to some of the people who work here at the hospital.” I do too, but I have to be practical, and rein you in on the present giving. A small present with a note with some heartfelt words mean more to most people then any big present.
You commented as we left, that you had no tears today. I am so relieved. I think that your brain is on the cusp of depression. It will take very little to push you into the vast dark emptiness of depression. This places a lot of responsibility on us to keep you ‘up’ and charged to go. It seems, if you get the right information on a regular basis, then you can see the light at the end of the tunnel. Today illustrates the relationship that exists between your mood and the environment. I really think, being at home will help you.
To night, when I went to pick up Quinn from gymnastics, he was reviewing the number of days to Christmas. I told him about your day and that you were excited about a different day. When I mentioned that you were coming home this Friday., Quinn said “Oh my gracishes goshishes, that rocks!” He then squeals with glee. Four more sleeps … and we will have a little taste of normal.
I broach the topic of a weekend pass this coming weekend to see if that helps your emotions. She promises to look into it. I felt much better after the talk. I don’t feel so alone in advocating for you.
We found out last Thursday that you are seventh on the wait list to the NSRC. This translates to about a 6 weeks wait. We were told that if you are discharged from the hospital, you still maintain your position on the list. This is crucial information. We discuss this later in the day. No Christmas is worth the price of delayed rehab for you. We agreed that we both feel very strongly about this. Rehab possibilities take priority over everything else.
I made some calls and arranged for the equipment to come a little earlier and to have it a little longer. It’s all set. We will get most of the things between Tuesday and Thursday and the last item will be the bed, which we will get on Friday. Then all we will need is you to make the picture complete.
The social worker and I discussed the possibility of you being discharged from the hospital. She had said that outpatient physio may be a possibility as long as there can be someone to accompany you to and from the physio appointments. With such a strong supportive circle around us, I think that this could happen. But she cautioned me to “see what this weekend is like”. She is right. I must walk before I run. But I’m just so happy to have you home and have a little more normal in our lives.
We have all been craving some normal and we are going to get it for Christmas!
Last night when we got home, Tara complained of a sore chest. “The bone hurts.” She gestures to her sternum. I take her temperature and her pulse, they are OK. I asked if it hurt to swallow. She said yes. “Do you have a bad taste in your mouth?” Again “Yes.”
I think Tara has heartburn. I explain to her what that is. I suggest that she drink some water and get into bed. This morning, Tara is not any better. She said the pain kept her up most of the night. I decide that she not go to school today. I take her over to Juanita’s house for the day and feed her a TUMS tablet. An hour later, she is still no better, so I call our family doctor and get an appointment for 2:45.
Yesterday, while Tara was cleaning her room, she found a watch that she had forgotten she had. She has been keeping track of time since. First, she was worried we would be late … we were on time. Then she worried “Dr. Bell is late. My appointment was 15 minutes ago.” She keeps checking her watch. The her apple didn’t fall far from the your tree. This is her effort to try and control what she can. Time is a challenging dimension to control. I think this adds to her worries.
I talk to Dr. Bell privately for a few seconds. I suggest to her that anxiety is an issue and that a good physical exam would be good to waylay her fears. She gets a good once over examination. Then, Dr. Bell asks questions about her symptoms and about life in general. She thinks it’s heartburn too and she talks to Tara about how stress can do this to your body. I think Tara gets it. We leave with a script for medication and some advice to try to leave the worrying to others and take time to enjoy life. “Do things that make you happy and remember that Daddy is getting better every day.” If only I can heed this advice too.
As Tara and I go up to your room to visit, we run into the social worker from this morning. I introduce Tara and explain “That this is Daddy’s social worker.” As we climbed the stairs, Tara asks me “What is a social worker?” I am lost for words. After a few seconds thought, I said that a social worker is someone who helps a person get his or her life back to as normal as it can be. I added ,that I thought she was very good at this, because she has helped Daddy a lot.
I haven’t seen you since last night and haven’t talked with you since this morning before work. You look relaxed and pleased. You tell me of the good talk you had with the social worker, and how she is very bright and knew just the right things to say to you. She helped you change your outlook. You are very happy about coming home for the weekend. You are very concerned that coming home for longer then the two-day passes, may endanger your position on the list. We have been reassured that you will stay on the list, but you would like that in writing. You want to stay focused on the goal of rehab.
You are concerned that your presence in the house will “burden” me. There is that word again. I hate the word, burden. “You, at home, would not be a burden … it would easy compared to what I’m doing now. To have our family all together in your home is not a burden, it is a labour of love.” Emotionally, I think it will be easy. This will give us all a little normal.
I think I can hear some of the social worker’s practical advice being echoed by you. I try to stay practical too. For now the two-day pass for this weekend is the smart approach to take. From there, we will see.
We work on your Christmas list. It’s getting long. You want to give big presents to many of the staff in the hospital. “I am really attached to some of the people who work here at the hospital.” I do too, but I have to be practical, and rein you in on the present giving. A small present with a note with some heartfelt words mean more to most people then any big present.
You commented as we left, that you had no tears today. I am so relieved. I think that your brain is on the cusp of depression. It will take very little to push you into the vast dark emptiness of depression. This places a lot of responsibility on us to keep you ‘up’ and charged to go. It seems, if you get the right information on a regular basis, then you can see the light at the end of the tunnel. Today illustrates the relationship that exists between your mood and the environment. I really think, being at home will help you.
To night, when I went to pick up Quinn from gymnastics, he was reviewing the number of days to Christmas. I told him about your day and that you were excited about a different day. When I mentioned that you were coming home this Friday., Quinn said “Oh my gracishes goshishes, that rocks!” He then squeals with glee. Four more sleeps … and we will have a little taste of normal.
Sunday December 13 – Master of my Fate and Captain of my Soul.
Invictus by William Ernest Henley
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate:
I am the captain of my soul.
As a young teenager, I was charged with the job of memorizing this poem. At the time, I sensed that it had meaning that would give me strength as an adult. But I didn’t know how it would. The last two lines have been my friends at difficult times in my life and the whole poem inspired perseverance.
I didn’t know, at the time, that it was written by William as a young man from his hospital bed after he recovered from loosing a foot to TB. I wonder if it was the left or right foot.
I can’t sleep in. I have tried different strategies. If I go to bed early, I wake up really early. If I go to bed late I always wake up after 6 to 7 hrs. It’s a good sleep, especially after writing in the journal. I sleep right through the night and my body feels rested in the morning, but I wake up every morning to thoughts of you popping into my head. I can turn off the thoughts for the 6 to 7 hours but no longer.
Reality creeps past my wall of dreams and tears it down, leaving my exposed raw feelings to the elements.
I was up for a couple of hours when you called at eight. I was doing mindless household chores, trying to put my mind in neutral when you called. You were sobbing. You are depressed. I really feel you are depressed. This knowledge brings up many bad feelings for me that I don’t seem to have much control over.
Growing up with a depressed parent was difficult. In my early life, I thought sad Mummies were normal. As a teenager, when I found ‘Invictus’, I realized that it wasn’t normal but it scared me. I knew there was nothing I could do that would help her so I defaulted to avoiding her. I did the things that needed to be done for myself and my sisters and brother. Holding Mum and pep talking her would never help… so I didn’t.
I can’t let this default happen with you. I am a different person now with many other life experiences to draw on. I know that I can hold your hand, hug you and try to give you inspiring pep talks. Although my head is bloody but not unbowed, I am still the master of my fate and captain of my soul. Our family depends on me. I will not let them down.
I made arrangements to take the children over to Juanita’s once they are up, fed and dressed. While I wait for them, I have a shower. During the early days after your stroke, I had a lot of showers. The shower is my safe place. I could cry in the shower and the children won’t hear my sobs. My tears were washed away as fast as they came. At the end of the shower, I felt relieved and somewhat restored.
I needed my safe place today. I needed to cry and reach past my old hurts from my childhood and find the strength that I acquired as an adult. I needed to do this for you, for us. After that shower, not only was I very clean, but I was charged up to be by your side. If this pattern continues, I see some very dry skin in my future.
When I received your call, Quinn was with me. He hear my side of the conversation. When I hung up, he asked how you were. “Daddy is very sad today Quinny. He is like this.” I said as I pulled his ear lobe.
“I am going to eat my breakfast right away so that you can go to him.” Quinn says with concern.
You are sad. You ask me about euthanol, a euthanasia drug that we use in veterinary medicine. I think you are mostly exaggerating your feelings but I do think that a small part of you is serious about wanting to die. I try to change the subject and get you to play the memory game. You aren’t interested. You want me to read emails. I don’t blame you, the four hundred or so emails inspire a lot of strength. This is the right medicine for you today.
We talk to the doctor, who is on-call this weekend, she thinks that the antidepressant dose you are on is low and can be increased. The problem is that it takes some time before a dose change will have an obvious effect. Time is a precious commodity.
We talk about you coming home for the holidays. This helps you rally your feelings. I warn you that you may still be sad even if you come home. The sadness isn’t due to your location, it is due to your injury. We still have six weeks to get through before you get to rehab. I want to ask Dr. Feltmate about a psychiatric consult on Monday. We need to stay ahead of your depression. You say that you can’t even explain to the doctor why you cry. I told you that observation, in itself, is a telling symptom of your depression.
“I don’t want to cry in front of a doctor.” You said.
“I don’t think crying in front of a person makes you less of a person. It makes you more human.” I reply
“It is a sign of weakness.”
“It’s not a sign of weakness, it’s a sign of strength. It’s a sign that you are trying to overcome the hurt in your body. Letting out the pain is a good thing to do.”
Your tears make me cry in front of you. I tell you that I was just thinking this morning that if you had died, this would have been the worst Christmas of my life. But you lived and you are coming home for Christmas. Now it’s the best Christmas of my life. Between my gasps for breath, you comfort me.
You comfort me! For a moment, you abandon your sorrow and comfort me. Gosh, you strength is amazing. This is when I realized that you are the master of your fate and captain of your soul.
To help us get out of our dark hole, we talk about our life together in a few years when the children are grown and we are ‘empty nesters’. “I’ll teach you how to sail and kayak and you can teach me how to work with wood. We will live in our little house by the sea in Cape Breton.” These images help you calm and focus your thoughts.
After lunch, I get you to read the newspaper. An article written by Jason Malloy about provincial over budget health care costs due to poor planning for the costs of H1N1. Out of 60 odd lines of texts, you only missed the left-hand margin about 4 times. By my math, that’s about a 93%. Much better then a few weeks ago. I am happy with this progress.
Today is 105 days. It’s been 105 days of riding the peaks and valleys on this marathon course. I still haven’t figured out how to do it. The momentum of the downhills seems to help us over the peaks. I have been doing this for 105 days and I still don’t understand it. But we are the masters of our fates and the captains of our souls.
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll
I am the master of my fate:
I am the captain of my soul.
As a young teenager, I was charged with the job of memorizing this poem. At the time, I sensed that it had meaning that would give me strength as an adult. But I didn’t know how it would. The last two lines have been my friends at difficult times in my life and the whole poem inspired perseverance.
I didn’t know, at the time, that it was written by William as a young man from his hospital bed after he recovered from loosing a foot to TB. I wonder if it was the left or right foot.
I can’t sleep in. I have tried different strategies. If I go to bed early, I wake up really early. If I go to bed late I always wake up after 6 to 7 hrs. It’s a good sleep, especially after writing in the journal. I sleep right through the night and my body feels rested in the morning, but I wake up every morning to thoughts of you popping into my head. I can turn off the thoughts for the 6 to 7 hours but no longer.
Reality creeps past my wall of dreams and tears it down, leaving my exposed raw feelings to the elements.
I was up for a couple of hours when you called at eight. I was doing mindless household chores, trying to put my mind in neutral when you called. You were sobbing. You are depressed. I really feel you are depressed. This knowledge brings up many bad feelings for me that I don’t seem to have much control over.
Growing up with a depressed parent was difficult. In my early life, I thought sad Mummies were normal. As a teenager, when I found ‘Invictus’, I realized that it wasn’t normal but it scared me. I knew there was nothing I could do that would help her so I defaulted to avoiding her. I did the things that needed to be done for myself and my sisters and brother. Holding Mum and pep talking her would never help… so I didn’t.
I can’t let this default happen with you. I am a different person now with many other life experiences to draw on. I know that I can hold your hand, hug you and try to give you inspiring pep talks. Although my head is bloody but not unbowed, I am still the master of my fate and captain of my soul. Our family depends on me. I will not let them down.
I made arrangements to take the children over to Juanita’s once they are up, fed and dressed. While I wait for them, I have a shower. During the early days after your stroke, I had a lot of showers. The shower is my safe place. I could cry in the shower and the children won’t hear my sobs. My tears were washed away as fast as they came. At the end of the shower, I felt relieved and somewhat restored.
I needed my safe place today. I needed to cry and reach past my old hurts from my childhood and find the strength that I acquired as an adult. I needed to do this for you, for us. After that shower, not only was I very clean, but I was charged up to be by your side. If this pattern continues, I see some very dry skin in my future.
When I received your call, Quinn was with me. He hear my side of the conversation. When I hung up, he asked how you were. “Daddy is very sad today Quinny. He is like this.” I said as I pulled his ear lobe.
“I am going to eat my breakfast right away so that you can go to him.” Quinn says with concern.
You are sad. You ask me about euthanol, a euthanasia drug that we use in veterinary medicine. I think you are mostly exaggerating your feelings but I do think that a small part of you is serious about wanting to die. I try to change the subject and get you to play the memory game. You aren’t interested. You want me to read emails. I don’t blame you, the four hundred or so emails inspire a lot of strength. This is the right medicine for you today.
We talk to the doctor, who is on-call this weekend, she thinks that the antidepressant dose you are on is low and can be increased. The problem is that it takes some time before a dose change will have an obvious effect. Time is a precious commodity.
We talk about you coming home for the holidays. This helps you rally your feelings. I warn you that you may still be sad even if you come home. The sadness isn’t due to your location, it is due to your injury. We still have six weeks to get through before you get to rehab. I want to ask Dr. Feltmate about a psychiatric consult on Monday. We need to stay ahead of your depression. You say that you can’t even explain to the doctor why you cry. I told you that observation, in itself, is a telling symptom of your depression.
“I don’t want to cry in front of a doctor.” You said.
“I don’t think crying in front of a person makes you less of a person. It makes you more human.” I reply
“It is a sign of weakness.”
“It’s not a sign of weakness, it’s a sign of strength. It’s a sign that you are trying to overcome the hurt in your body. Letting out the pain is a good thing to do.”
Your tears make me cry in front of you. I tell you that I was just thinking this morning that if you had died, this would have been the worst Christmas of my life. But you lived and you are coming home for Christmas. Now it’s the best Christmas of my life. Between my gasps for breath, you comfort me.
You comfort me! For a moment, you abandon your sorrow and comfort me. Gosh, you strength is amazing. This is when I realized that you are the master of your fate and captain of your soul.
To help us get out of our dark hole, we talk about our life together in a few years when the children are grown and we are ‘empty nesters’. “I’ll teach you how to sail and kayak and you can teach me how to work with wood. We will live in our little house by the sea in Cape Breton.” These images help you calm and focus your thoughts.
After lunch, I get you to read the newspaper. An article written by Jason Malloy about provincial over budget health care costs due to poor planning for the costs of H1N1. Out of 60 odd lines of texts, you only missed the left-hand margin about 4 times. By my math, that’s about a 93%. Much better then a few weeks ago. I am happy with this progress.
Today is 105 days. It’s been 105 days of riding the peaks and valleys on this marathon course. I still haven’t figured out how to do it. The momentum of the downhills seems to help us over the peaks. I have been doing this for 105 days and I still don’t understand it. But we are the masters of our fates and the captains of our souls.
Saturday, December 12, 2009
Saturday December 12 – Ear Lobe Tugs
This morning I scanned the newspaper to look for ideas to make a list of three things to remember. The challenge to making a list of three things, is that they should be things that don’t provoke any ‘before stroke’ (BS) memories. You might be able to relate the item to something or an experience that you had BS but, I think for this exercise to help, that should be your only memory crutch.
I settled on the newspaper as a source of ideas. Most newsworthy items are ‘new’ to you and yet you could probably relate to the story in other ways. This allows you to access your memory banks that were left behind after the stroke and make a connection between the memory item and you past experience. I figured that if I could read to you a short article. The information that surrounds the memory item could help you recall the item. The story could be a reference point that allows you to recall a few details.
You weren’t fond of the idea. You would rather I read you emails and cards, but you humored me anyway. I read to you about the Bluenose refit and it’s associated costs and about the town’s proposed solution to various Wood street activities that a local politician commented on. The third item was at your request. Rod Carew’s birthday; October 1, 1945 and since it was easy for you I threw in the date that Rod Carew signed into the major league – June 25, 1964; the day you were born.
Yesterday’s memory challenge worked, you remembered both Haillee and Connor’s name. You did need a little memory prompt to get Connor’s name.
We cuddle in bed your bed. It’s a tight fit. You ramble on about good and comfortable things. I love hearing your voice. It comforts me and I feel safe. I could go to sleep easily. But I can’t sleep today, I’ve got to pick up Tara and get her to her choir practice.
It’s another busy day, with a tight schedule.
I can’t wait to be able to sleep beside each other.
You are worried about your friend with addiction issues. You had talked to his mother and want to help her through this terrible time. You cry. I express concern that this worry isn’t helping you. You say that you have to help her.
You ask me what I want for Christmas. You want to look at some sale flyers. You won’t find what I want in a sale flyer. Because I just want you to come home.
Megan comes to visit. Her mother is quite ill and in the hospital. She is very worried about her. Like you Megan wants to help everyone. That is how she came into our lives … so she could share her experience with spinal cord injury and paralysis and give us hope. She wants to help her mother and other people in her family. You mention that she must look after herself first before she can help others. You offer some sound advice. “Go to her and give her a hug.” You know that will help both Megan and her Mother.
Your tears come easily today. You want to escape into sleep. I do think that depression is creeping up on you. I must talk to Dr. Feltmate Monday about this. If it’s going to be six weeks until rehab, then you need psychological treatment now. To wait may really compromise your time spent in rehab.
Later in the day, while cuddling on the bed with Quinn, you suddenly become overwhelmed. When Quinn asked what was the matter. You said, “I feel like you do when you give the signal that you are sad but you don’t know why. (The ear lobe tug sign.) I want to tug on your ear lobe.” Quinn immediately understands and Quinn and I hug you and hold you.
Today was another day that went by far too fast. Places to be, deadline to meet and things to do. I almost longed for the long hours by you bed in the early days when I could just sit and reflect. There is no time in the day to reflect. I guess this journal has morphed again into a different aid for me. It forces me to take time to reflect on the day. I have always been a very visual thinker. Words on a page help me organize my thoughts. Most of the time if I hear something, I can think on my feet and act accordingly, but when I’m stressed or the subject is something close to my heart then I have to see the words to make sense.
Last night I had a wonderful chat with the mother of a classmate of Tara’s. Angele told of her Mother’s stroke, illness and eventual death. Although it was clearly very hard on her at the time, now a few years later, she realizes that the connections her mother made during her illness is still having an effect on her now.
The inter-connectiviness (this is probably not a real word – but it make sense to me) of people is possibly a defining human quality that doesn’t extend the same way to other species. I think, I might have sensed it’s presence but until now, I don’t think I’ve ever really felt it. It’s a rather scary thought that I haven’t felt a defining human feeling until now in my life. Perhaps that is part of the reason for this journey for us.
I settled on the newspaper as a source of ideas. Most newsworthy items are ‘new’ to you and yet you could probably relate to the story in other ways. This allows you to access your memory banks that were left behind after the stroke and make a connection between the memory item and you past experience. I figured that if I could read to you a short article. The information that surrounds the memory item could help you recall the item. The story could be a reference point that allows you to recall a few details.
You weren’t fond of the idea. You would rather I read you emails and cards, but you humored me anyway. I read to you about the Bluenose refit and it’s associated costs and about the town’s proposed solution to various Wood street activities that a local politician commented on. The third item was at your request. Rod Carew’s birthday; October 1, 1945 and since it was easy for you I threw in the date that Rod Carew signed into the major league – June 25, 1964; the day you were born.
Yesterday’s memory challenge worked, you remembered both Haillee and Connor’s name. You did need a little memory prompt to get Connor’s name.
We cuddle in bed your bed. It’s a tight fit. You ramble on about good and comfortable things. I love hearing your voice. It comforts me and I feel safe. I could go to sleep easily. But I can’t sleep today, I’ve got to pick up Tara and get her to her choir practice.
It’s another busy day, with a tight schedule.
I can’t wait to be able to sleep beside each other.
You are worried about your friend with addiction issues. You had talked to his mother and want to help her through this terrible time. You cry. I express concern that this worry isn’t helping you. You say that you have to help her.
You ask me what I want for Christmas. You want to look at some sale flyers. You won’t find what I want in a sale flyer. Because I just want you to come home.
Megan comes to visit. Her mother is quite ill and in the hospital. She is very worried about her. Like you Megan wants to help everyone. That is how she came into our lives … so she could share her experience with spinal cord injury and paralysis and give us hope. She wants to help her mother and other people in her family. You mention that she must look after herself first before she can help others. You offer some sound advice. “Go to her and give her a hug.” You know that will help both Megan and her Mother.
Your tears come easily today. You want to escape into sleep. I do think that depression is creeping up on you. I must talk to Dr. Feltmate Monday about this. If it’s going to be six weeks until rehab, then you need psychological treatment now. To wait may really compromise your time spent in rehab.
Later in the day, while cuddling on the bed with Quinn, you suddenly become overwhelmed. When Quinn asked what was the matter. You said, “I feel like you do when you give the signal that you are sad but you don’t know why. (The ear lobe tug sign.) I want to tug on your ear lobe.” Quinn immediately understands and Quinn and I hug you and hold you.
Today was another day that went by far too fast. Places to be, deadline to meet and things to do. I almost longed for the long hours by you bed in the early days when I could just sit and reflect. There is no time in the day to reflect. I guess this journal has morphed again into a different aid for me. It forces me to take time to reflect on the day. I have always been a very visual thinker. Words on a page help me organize my thoughts. Most of the time if I hear something, I can think on my feet and act accordingly, but when I’m stressed or the subject is something close to my heart then I have to see the words to make sense.
Last night I had a wonderful chat with the mother of a classmate of Tara’s. Angele told of her Mother’s stroke, illness and eventual death. Although it was clearly very hard on her at the time, now a few years later, she realizes that the connections her mother made during her illness is still having an effect on her now.
The inter-connectiviness (this is probably not a real word – but it make sense to me) of people is possibly a defining human quality that doesn’t extend the same way to other species. I think, I might have sensed it’s presence but until now, I don’t think I’ve ever really felt it. It’s a rather scary thought that I haven’t felt a defining human feeling until now in my life. Perhaps that is part of the reason for this journey for us.
Friday, December 11, 2009
Friday December 11 - Memory Games
Today was a busy day. I’m looking forward to the weekend and the Christmas break. I feel like a mama bear … I just want to hibernate with you and the children.
Today, I first had the oil change on your car, then to work only to find out there is more illness. This time it looks a little like a flu bug. I manage to get away from work early and get much needed groceries. Then I visited you for about 40 min then off to collect Tara from choir practice and feed her and deliver her to ukulele practice then off to the Christmas play that both Tara and Quinn are in. Finally we visit you and Tara and Quinn bring you up to date on their lives. We get home at ten and off to bed.
The past few years, I have had mixed feelings about the Christmas season. I refuse to get caught up in the consumer frenzy but somehow over the last few years I have got caught up in the activity rush. All the concerts and Christmas parties and special Christmas social things make the first half of the month of December a little crazy. This year is no different.
I crave a lazy day with no commitments to be anywhere. A lazy week would be better. Sleep in and stay in pajamas until lunch and play games, walk Annie and just … just be. Be with you and the children. This is no longer a dream, this will be a reality! In just thirteen more sleeps – it will happen. All of it will happen except maybe the stay in my pajamas until lunch – we don’t keep the house warm enough for that. My Christmas wish will come true.
You call me at work this morning. You are frustrated that you can’t remember things. Your 'before stroke' (BS for short)memory is excellent. You haven’t forgotten anything that I can detect. You amaze people continuously with your memory for your last conversations with them even if it was six months BS.
You memory of things and names after the stroke is what is frustrating you. It starts with very little memory of you time spent at the QE2 in Halifax. It continues each day. You are always asking the nurses their names and asking if they are married. You might ask the same nurse these questions once or twice a day and again on the next day. You are feeling stupid. You are not stupid. You are brain injured. There is a big difference.
The other day I started a memory game with you. I have tried to continue it each day. Today, the memory challenge is to remember Kerry’s (who is on maternity leave from my work) names of her children. I told you their names in the morning and said try to remember them for when I come to visit.
The names are: Haillee and Connor. I explain that Connor, the new baby, was going to be called Carter initially but Connor seemed like a better name when he was born so that is what it is now. You repeated “Connor, as in: Connor Larkin, a main character from a book called Redemption” (by Leon Uris)? I am stunned. I know that it was at least ten years ago that you read that book and yet that is the first reference point you pick out your head to remember Connor’s name. Haillee’s name should be easy, since you have met her BS. Connor has born shortly after Farley so you have never met him.
After work, I stopped in to visit you for a short time. I noticed that you can scan much better to your left as I walked in the door. When you were first moved to the Colchester Hospital, you didn’t acknowledge anyone until they walked into your room, well past the middle of the bed. You didn’t know you had a left-sided blind spot so you didn’t compensate for it. Now you are starting too. This is largely thanks to the room setup – with the door and the TV on your left, you have little choice but to consciously pay attention to the left. This is a good thing.
You were enthusiastic about your physio session today. You are even feel OK about getting into your chair. Pain is a deterrent but when the pain isn’t too bad, you try to tough it out.
Just before we leave, I ask you if you remember the names of Kerry’s children. You don’t want to play the game. I push you a little harder. “If you don’t exercise the memory muscles now, you never get them back.” After a moment of thought you say “Haille” but you are stuck on Connor’s name. I give a hint. I didn’t want to give a hint that referenced the memory from a BS thought so I said “They were going to call him Carter.” “Connor” You replied proudly.
Even though you are not going to rehab for six weeks or so, I think we can find many things to work on in the meantime that will position you better to get the most out of rehab when you do get there.
The mobility loss is the most obvious loss. When you are home for Christmas, we won’t be able to work on that as much, but we can work on other things. There are other gaps that can be nurtured back to wholeness. The occupational therapist has given us ideas of ways to work on some of you deficiencies. We just have to think about how to help you fill in the gaps.
Today, I first had the oil change on your car, then to work only to find out there is more illness. This time it looks a little like a flu bug. I manage to get away from work early and get much needed groceries. Then I visited you for about 40 min then off to collect Tara from choir practice and feed her and deliver her to ukulele practice then off to the Christmas play that both Tara and Quinn are in. Finally we visit you and Tara and Quinn bring you up to date on their lives. We get home at ten and off to bed.
The past few years, I have had mixed feelings about the Christmas season. I refuse to get caught up in the consumer frenzy but somehow over the last few years I have got caught up in the activity rush. All the concerts and Christmas parties and special Christmas social things make the first half of the month of December a little crazy. This year is no different.
I crave a lazy day with no commitments to be anywhere. A lazy week would be better. Sleep in and stay in pajamas until lunch and play games, walk Annie and just … just be. Be with you and the children. This is no longer a dream, this will be a reality! In just thirteen more sleeps – it will happen. All of it will happen except maybe the stay in my pajamas until lunch – we don’t keep the house warm enough for that. My Christmas wish will come true.
You call me at work this morning. You are frustrated that you can’t remember things. Your 'before stroke' (BS for short)memory is excellent. You haven’t forgotten anything that I can detect. You amaze people continuously with your memory for your last conversations with them even if it was six months BS.
You memory of things and names after the stroke is what is frustrating you. It starts with very little memory of you time spent at the QE2 in Halifax. It continues each day. You are always asking the nurses their names and asking if they are married. You might ask the same nurse these questions once or twice a day and again on the next day. You are feeling stupid. You are not stupid. You are brain injured. There is a big difference.
The other day I started a memory game with you. I have tried to continue it each day. Today, the memory challenge is to remember Kerry’s (who is on maternity leave from my work) names of her children. I told you their names in the morning and said try to remember them for when I come to visit.
The names are: Haillee and Connor. I explain that Connor, the new baby, was going to be called Carter initially but Connor seemed like a better name when he was born so that is what it is now. You repeated “Connor, as in: Connor Larkin, a main character from a book called Redemption” (by Leon Uris)? I am stunned. I know that it was at least ten years ago that you read that book and yet that is the first reference point you pick out your head to remember Connor’s name. Haillee’s name should be easy, since you have met her BS. Connor has born shortly after Farley so you have never met him.
After work, I stopped in to visit you for a short time. I noticed that you can scan much better to your left as I walked in the door. When you were first moved to the Colchester Hospital, you didn’t acknowledge anyone until they walked into your room, well past the middle of the bed. You didn’t know you had a left-sided blind spot so you didn’t compensate for it. Now you are starting too. This is largely thanks to the room setup – with the door and the TV on your left, you have little choice but to consciously pay attention to the left. This is a good thing.
You were enthusiastic about your physio session today. You are even feel OK about getting into your chair. Pain is a deterrent but when the pain isn’t too bad, you try to tough it out.
Just before we leave, I ask you if you remember the names of Kerry’s children. You don’t want to play the game. I push you a little harder. “If you don’t exercise the memory muscles now, you never get them back.” After a moment of thought you say “Haille” but you are stuck on Connor’s name. I give a hint. I didn’t want to give a hint that referenced the memory from a BS thought so I said “They were going to call him Carter.” “Connor” You replied proudly.
Even though you are not going to rehab for six weeks or so, I think we can find many things to work on in the meantime that will position you better to get the most out of rehab when you do get there.
The mobility loss is the most obvious loss. When you are home for Christmas, we won’t be able to work on that as much, but we can work on other things. There are other gaps that can be nurtured back to wholeness. The occupational therapist has given us ideas of ways to work on some of you deficiencies. We just have to think about how to help you fill in the gaps.
Thursday, December 10, 2009
Thursday December 10 - I’ll be Home for Christmas
It’s snow tire time. I’ve put it off long enough. I was going to do it last week but I could only find three tires. I asked you if you remember what happened to the fourth tire and you didn’t. So I took the car to the tire store and explained that we lost a tire. They said they could take care of it, so I left the car with them for the morning.
A nice young man drove me back to the hospital. His grandfather had a stroke six months ago. He has speech issues but is gaining strength every day. “He is a tough old guy.” he said. When I mentioned that you were a marathon runner, he immediately responded “Oh well, he must have determination. He’ll get better.” I hear this comment a lot. It seems that generally, people regard marathon runners as strong willed people with extra powers or something.
Once I got to your room we met with the physio and OT team and the social worker. What a productive 20 minutes. A leave from the hospital is definitely possible. The social worker is going to arrange for a leave for 48 hours and if all goes well, then they will discharge you from the hospital for the holiday season and you can return in January. The catch to that is – there may be no spare beds at that time and if there is a bed – we will likely not get a private room.
That is a small price to pay to get you home. A quick call was made to the NSRC to see when you might get in. We are hoping that you could go directly to the NSRC from home. But it’s not meant to be. They informed us it would be a about 6 week wait. There are seven people ahead of you on the list.
This information worry me a little because, at the meeting with the Halifax rehab team on Tuesday, it was mentioned that your physio team is a little ‘stuck’ on getting you from sitting to standing position. I ask if they have any ideas about how to get past this obstacle while still here in Truro. I am worried that ‘stuck’ might mean a less then best recovery.
Apparently, there is a ‘Sitting to Standing’ machine that might help. It is meant to be used with someone with two functional hands, not one, but it is worth a try.
We discuss what equipment we will need and where to get it and transportation from and to the hospital. Tasks are assigned to OT and the social worker and I’m to find out about transportation. The physiotherapist is going to work on a list of house rules. My concern is once you are home, you will want to do more then you should and risk injury. After being your wife for 22 years, I know that if the ground rules come from your much loved and respected physiotherapist, you will obey them. I’m not so sure you would listen to me. After 22 years, you know what buttons to press to make me cave in. I glad the rules will have to come from physio and OT.
You sing a chorus of “I’ll be home for Christmas” as they leave the room. This is going to be the best Christmas ever for our little family. You are looking forward to seeing Annie. “We can even sleep together if I’m home!” I’d like that. I miss curling up with you.
You have an alcoholic friend that you have been worried about. You want to share with him your new-found insights as to what’s important in life. In many ways, the insights into life that are gained by a near death experience are almost the polar opposite to the deep park hole that addiction buries a person’s soul. The disease of addiction distorts one’s values and perception of what is really important.
You feel that if you can share some of your insights, you can throw him a lifesaver. I remind you what Jay had said yesterday but you said tearfully replied, “He hasn’t got time to wait for me to be whole again. I have to do this now.” You plan to call him tonight.
Karen and Luke come to visit. You enjoy teasing Luke, who is starting school next year. He enjoys sitting in your wheel chair and plays with the Santa music box. Shortly after Kerry and Iris come to visit. You talk about the rehab and you say you know it will be tough. But you are going to make the best recovery you can. You talk again about the fact that your arm and leg are attached to you and are, in fact, part of you. This is a breakthrough but you are still struggling to understand..
Just before lunch you had the best physio session yet. The sitting to standing machine was brought up for you to try. You were a little apprehensive at the beginning. Your nurse demonstrates how it works. That seems to waylay your fears. To use it, you start by sitting on the edge of the bed. And the bed gets raised up until your feet barley touch the ground. The sitting to standing machine is brought to you and you rest your feet on the base of the machine. A supporting strap is wrapped around the back of your chest. You hold onto a handle with your right hand. As you hold on, the machine slowly lifts you up but you are doing most of the work. You use the machine for balance.
It is so good to see you stand. As you stand, your physiotherapist gets you to straighten your back and look straight ahead. Besides training your body to distribute your weight onto your legs and correct your posture, this exercise places gravitational forces on your feet. Especially your left foot. If your left foot perceives pressure from weight bearing, then your brain may connect with your leg better.
You are very pleased with yourself over this ‘feat’. Get the pun! I’m happy too. You can’t wait until your physio session tomorrow. You are not scared of trying now.
This morning, when Quinn went to get dressed, there was only one pair of pants in his drawer. I left these pants in his drawer on purpose because he refuses to wear them. He thinks they are too big. They were too big when we first got them six months ago. But they are not too big now. I finally convince him to try them on and, of course, they fit! He is quite pleased with himself. He has grown physically and now he can see it.
You were scared of trying to stand today. When you were first admitted into the hospital, they tried to get you to stand and it was painful and frightening experience. This left you a little gun shy on trying new things. You weeped and you were worried that you would fail. But you did try to stand and you succeeded.
You have grown too … emotionally. I guess you are “Your son’s father”.
You want to run. But before you run, you have to walk and before you walk, you have to stand. They are all ‘baby steps’. The only difference between you and a baby is that you don’t transition through the crawling phase.
You are presented with a different wheel chair. This one is a normal wheel chair that you can propel using your right hand on the wheel and your right foot on the floor. You take it for a spin down the hallway and back. That is going to work well. This will be type of chair that we will get to take you home.
You are working on your gift list for all the wonderful people who helped you in the hospital, not to mention all the people in the community. The list is getting long. You are getting very excited about coming home of Christmas. You want to have lots of visitors during the holidays.
Tonight you call, you are tired and frustrated. You ask if I could call the nurse’s station so that someone would come to your room. The call button had dropped out of your reach. This is a tough time for you. “I have got to myself better so I can get out of here.”
Just before bed Tara informs me that another tooth fell out yesterday. She put it under her pillow and didn’t tell me. I think she is testing the tooth fairy. She told me tonight. She didn’t let on that she knew but I think she does know who the tooth fairy is. She wants her money and now she knows who to tell. She is growing too. She is growing intellectually.
A nice young man drove me back to the hospital. His grandfather had a stroke six months ago. He has speech issues but is gaining strength every day. “He is a tough old guy.” he said. When I mentioned that you were a marathon runner, he immediately responded “Oh well, he must have determination. He’ll get better.” I hear this comment a lot. It seems that generally, people regard marathon runners as strong willed people with extra powers or something.
Once I got to your room we met with the physio and OT team and the social worker. What a productive 20 minutes. A leave from the hospital is definitely possible. The social worker is going to arrange for a leave for 48 hours and if all goes well, then they will discharge you from the hospital for the holiday season and you can return in January. The catch to that is – there may be no spare beds at that time and if there is a bed – we will likely not get a private room.
That is a small price to pay to get you home. A quick call was made to the NSRC to see when you might get in. We are hoping that you could go directly to the NSRC from home. But it’s not meant to be. They informed us it would be a about 6 week wait. There are seven people ahead of you on the list.
This information worry me a little because, at the meeting with the Halifax rehab team on Tuesday, it was mentioned that your physio team is a little ‘stuck’ on getting you from sitting to standing position. I ask if they have any ideas about how to get past this obstacle while still here in Truro. I am worried that ‘stuck’ might mean a less then best recovery.
Apparently, there is a ‘Sitting to Standing’ machine that might help. It is meant to be used with someone with two functional hands, not one, but it is worth a try.
We discuss what equipment we will need and where to get it and transportation from and to the hospital. Tasks are assigned to OT and the social worker and I’m to find out about transportation. The physiotherapist is going to work on a list of house rules. My concern is once you are home, you will want to do more then you should and risk injury. After being your wife for 22 years, I know that if the ground rules come from your much loved and respected physiotherapist, you will obey them. I’m not so sure you would listen to me. After 22 years, you know what buttons to press to make me cave in. I glad the rules will have to come from physio and OT.
You sing a chorus of “I’ll be home for Christmas” as they leave the room. This is going to be the best Christmas ever for our little family. You are looking forward to seeing Annie. “We can even sleep together if I’m home!” I’d like that. I miss curling up with you.
You have an alcoholic friend that you have been worried about. You want to share with him your new-found insights as to what’s important in life. In many ways, the insights into life that are gained by a near death experience are almost the polar opposite to the deep park hole that addiction buries a person’s soul. The disease of addiction distorts one’s values and perception of what is really important.
You feel that if you can share some of your insights, you can throw him a lifesaver. I remind you what Jay had said yesterday but you said tearfully replied, “He hasn’t got time to wait for me to be whole again. I have to do this now.” You plan to call him tonight.
Karen and Luke come to visit. You enjoy teasing Luke, who is starting school next year. He enjoys sitting in your wheel chair and plays with the Santa music box. Shortly after Kerry and Iris come to visit. You talk about the rehab and you say you know it will be tough. But you are going to make the best recovery you can. You talk again about the fact that your arm and leg are attached to you and are, in fact, part of you. This is a breakthrough but you are still struggling to understand..
Just before lunch you had the best physio session yet. The sitting to standing machine was brought up for you to try. You were a little apprehensive at the beginning. Your nurse demonstrates how it works. That seems to waylay your fears. To use it, you start by sitting on the edge of the bed. And the bed gets raised up until your feet barley touch the ground. The sitting to standing machine is brought to you and you rest your feet on the base of the machine. A supporting strap is wrapped around the back of your chest. You hold onto a handle with your right hand. As you hold on, the machine slowly lifts you up but you are doing most of the work. You use the machine for balance.
It is so good to see you stand. As you stand, your physiotherapist gets you to straighten your back and look straight ahead. Besides training your body to distribute your weight onto your legs and correct your posture, this exercise places gravitational forces on your feet. Especially your left foot. If your left foot perceives pressure from weight bearing, then your brain may connect with your leg better.
You are very pleased with yourself over this ‘feat’. Get the pun! I’m happy too. You can’t wait until your physio session tomorrow. You are not scared of trying now.
This morning, when Quinn went to get dressed, there was only one pair of pants in his drawer. I left these pants in his drawer on purpose because he refuses to wear them. He thinks they are too big. They were too big when we first got them six months ago. But they are not too big now. I finally convince him to try them on and, of course, they fit! He is quite pleased with himself. He has grown physically and now he can see it.
You were scared of trying to stand today. When you were first admitted into the hospital, they tried to get you to stand and it was painful and frightening experience. This left you a little gun shy on trying new things. You weeped and you were worried that you would fail. But you did try to stand and you succeeded.
You have grown too … emotionally. I guess you are “Your son’s father”.
You want to run. But before you run, you have to walk and before you walk, you have to stand. They are all ‘baby steps’. The only difference between you and a baby is that you don’t transition through the crawling phase.
You are presented with a different wheel chair. This one is a normal wheel chair that you can propel using your right hand on the wheel and your right foot on the floor. You take it for a spin down the hallway and back. That is going to work well. This will be type of chair that we will get to take you home.
You are working on your gift list for all the wonderful people who helped you in the hospital, not to mention all the people in the community. The list is getting long. You are getting very excited about coming home of Christmas. You want to have lots of visitors during the holidays.
Tonight you call, you are tired and frustrated. You ask if I could call the nurse’s station so that someone would come to your room. The call button had dropped out of your reach. This is a tough time for you. “I have got to myself better so I can get out of here.”
Just before bed Tara informs me that another tooth fell out yesterday. She put it under her pillow and didn’t tell me. I think she is testing the tooth fairy. She told me tonight. She didn’t let on that she knew but I think she does know who the tooth fairy is. She wants her money and now she knows who to tell. She is growing too. She is growing intellectually.
Wednesday December 9 – I Have Two Legs!
This morning I called to see how your night was. You had just woken up but you had a good rest. I had been thinking about the meeting from yesterday. There were some points of care that I wanted to bring to Dr. Feltmate’s attention. I described them to you and you summarized them down to one word so that you could remember the details better. You repeated the three words over and over. It was like a chant. We talked briefly about something else and then went back to the list. “What were the three things?” I asked. “Gabapentin, barium and bladder.” You replied. Good, I thought, it looks like you will remember.
After walking the children to school, Annie and I walked to work. It was a busy morning. Lately, life at the animal hospital has taken a hit. With two maternity leaves and a third starting soon, one person with a broken leg, one person ill and off work for the rest of the month and one person scheduled for surgery anytime soon, we are feeling the affects of being short staffed. Thank goodness that H1N1 hasn’t hit the animal hospital because there would be no one to hold down the fort.
In the afternoon, we had a staff meeting to discuss staff scheduling and how we will manage the day to day and week to week tasks. As always, the very resourceful team that I work with come up with a plan to make things work. As part to the meeting an ‘intervention’ of sorts was put forward. They were concerned that I would be spreading myself too thin once you went to rehab. I had hoped that once you are in rehab, that I could work a five-day week and Tara, Quinn and I would reunite with you on the weekends. This is planned to start in February, which means that January will be a transition month where I can still spend Tuesdays and Thursdays with you in Halifax.
By February, I hope that you will be settled and sufficiently busy at the NSRC that you will not need me as much. We can still talk on the phone. The children and I give you moral support over the phone. This would avoid winter driving. Something that I’m not that thrilled with doing if I can help it.
The team I work with have been amazing. They have taken over the reins of the practice and have made things work without worrying me. Without them, I don’t think I would have a practice to come back to. The fact that this happened at this time point in my career has been a blessing. Juanita and I have strived to make the work place a good environment.. I think we have succeeded but the weird thing is, I don’t think we did it, the team did it. At best, we helped facilitate it.
I don’t feel that I work with co-workers, I feel like I work with a large family. I have a sisterhood of coworkers. It is a relationship where communication is good and there is a lot of love and respect. This is the result of a combined effort of everyone at the hospital and I feel blessed to be a small part of it. My ‘sisters’ are a big part of my emotional rock.
When I get to you after work, you tell me about a ‘breakthrough’ that you had this morning while having a shower. This was the first shower that you had since you have been in the hospital. It felt good, you said.
The breakthrough was about your legs. “I have two legs and they are both mine.” You said. This is a concept that has eluded you over the past several weeks. You still don’t understand how you could have two legs and yet not know you have two legs. The thought fascinates you and confuses you at the same time.
“The day I walk out of here and go to our home” you say, “I will be walking on sunshine. When I tell people about my life, I feel people like me and value what I’m saying. I feel close to people. I want to help people. I just want my everyday life back.”
“Can you see that you have a path now to get your everyday life back. The path is important to focus on for you right now. You need to focus on you until you are well so then you can help other.” I caution you.
I ask you if you remembered to ask Dr. Feltmate the three questions. You said you don’t remember seeing Dr. Feltmate – so much for the memory exercise. This is something we can work on.
I tell you about the staff meeting and the worries my coworkers have about me. You say
That you know that you will be on your own more and it will be difficult but in another way, you said you will feel like you are helping me too by doing it on your own and making progress. You will feel like you are contributing to the family’s future.
I picked up Tara from ballet. I missed the open house, when parents get to watch the progress of the class. She is disappointed. “Mummy, you said that you were going to try to keep things normal for us. This isn’t normal. You never get to watch me at gymnastics or ballet. I want my old life back.” We all want our old lives back, I thought but what do you say to a nine-year-old.
“Sweetie, someday we will get our lives as we knew them back. The family life might be a little different but it will still feel good. In the meantime, we have to keep strong and help each other to get through this. It’s going to be a while before we get our old lives back… but I think we will and I know that because Daddy wants to work hard at getting better.”
Jay, the minister from the church, visited you. You talk to him about your feeling that you want to help people. You said that after your stroke, you realized what is important in life and you want to share these insights with people in your life who you think could benefit from it. Jay cautions you to be careful not to over do this. You are still not well and whole yet, you need to fill yourself up with wellness before you can give out to others again.
You want to give to others. Maybe this is why you were returned to us. You have a lot to give to the people who need it
“How do you handle the depression?” you ask Jay. He said you have to ride it like a wild bronco, ride out the bumps and if you fall off, you pick yourself up and get back on.
After Jay leaves, you take the opportunity to talk to Tara about her desire to run. You are happy that she wants to run. But yesterday, Marianne had offered to take Tara for a run but Tara bailed out on her at the last moment. You ask Tara to make a commitment to running. If other people are going to make a commitment to Tara for running then, then you felt it was important for Tara to make a commitment too. Tara agrees and wants to go running again.
You seem pleased with your newly developed bedside parenting skills. So am I.
After walking the children to school, Annie and I walked to work. It was a busy morning. Lately, life at the animal hospital has taken a hit. With two maternity leaves and a third starting soon, one person with a broken leg, one person ill and off work for the rest of the month and one person scheduled for surgery anytime soon, we are feeling the affects of being short staffed. Thank goodness that H1N1 hasn’t hit the animal hospital because there would be no one to hold down the fort.
In the afternoon, we had a staff meeting to discuss staff scheduling and how we will manage the day to day and week to week tasks. As always, the very resourceful team that I work with come up with a plan to make things work. As part to the meeting an ‘intervention’ of sorts was put forward. They were concerned that I would be spreading myself too thin once you went to rehab. I had hoped that once you are in rehab, that I could work a five-day week and Tara, Quinn and I would reunite with you on the weekends. This is planned to start in February, which means that January will be a transition month where I can still spend Tuesdays and Thursdays with you in Halifax.
By February, I hope that you will be settled and sufficiently busy at the NSRC that you will not need me as much. We can still talk on the phone. The children and I give you moral support over the phone. This would avoid winter driving. Something that I’m not that thrilled with doing if I can help it.
The team I work with have been amazing. They have taken over the reins of the practice and have made things work without worrying me. Without them, I don’t think I would have a practice to come back to. The fact that this happened at this time point in my career has been a blessing. Juanita and I have strived to make the work place a good environment.. I think we have succeeded but the weird thing is, I don’t think we did it, the team did it. At best, we helped facilitate it.
I don’t feel that I work with co-workers, I feel like I work with a large family. I have a sisterhood of coworkers. It is a relationship where communication is good and there is a lot of love and respect. This is the result of a combined effort of everyone at the hospital and I feel blessed to be a small part of it. My ‘sisters’ are a big part of my emotional rock.
When I get to you after work, you tell me about a ‘breakthrough’ that you had this morning while having a shower. This was the first shower that you had since you have been in the hospital. It felt good, you said.
The breakthrough was about your legs. “I have two legs and they are both mine.” You said. This is a concept that has eluded you over the past several weeks. You still don’t understand how you could have two legs and yet not know you have two legs. The thought fascinates you and confuses you at the same time.
“The day I walk out of here and go to our home” you say, “I will be walking on sunshine. When I tell people about my life, I feel people like me and value what I’m saying. I feel close to people. I want to help people. I just want my everyday life back.”
“Can you see that you have a path now to get your everyday life back. The path is important to focus on for you right now. You need to focus on you until you are well so then you can help other.” I caution you.
I ask you if you remembered to ask Dr. Feltmate the three questions. You said you don’t remember seeing Dr. Feltmate – so much for the memory exercise. This is something we can work on.
I tell you about the staff meeting and the worries my coworkers have about me. You say
That you know that you will be on your own more and it will be difficult but in another way, you said you will feel like you are helping me too by doing it on your own and making progress. You will feel like you are contributing to the family’s future.
I picked up Tara from ballet. I missed the open house, when parents get to watch the progress of the class. She is disappointed. “Mummy, you said that you were going to try to keep things normal for us. This isn’t normal. You never get to watch me at gymnastics or ballet. I want my old life back.” We all want our old lives back, I thought but what do you say to a nine-year-old.
“Sweetie, someday we will get our lives as we knew them back. The family life might be a little different but it will still feel good. In the meantime, we have to keep strong and help each other to get through this. It’s going to be a while before we get our old lives back… but I think we will and I know that because Daddy wants to work hard at getting better.”
Jay, the minister from the church, visited you. You talk to him about your feeling that you want to help people. You said that after your stroke, you realized what is important in life and you want to share these insights with people in your life who you think could benefit from it. Jay cautions you to be careful not to over do this. You are still not well and whole yet, you need to fill yourself up with wellness before you can give out to others again.
You want to give to others. Maybe this is why you were returned to us. You have a lot to give to the people who need it
“How do you handle the depression?” you ask Jay. He said you have to ride it like a wild bronco, ride out the bumps and if you fall off, you pick yourself up and get back on.
After Jay leaves, you take the opportunity to talk to Tara about her desire to run. You are happy that she wants to run. But yesterday, Marianne had offered to take Tara for a run but Tara bailed out on her at the last moment. You ask Tara to make a commitment to running. If other people are going to make a commitment to Tara for running then, then you felt it was important for Tara to make a commitment too. Tara agrees and wants to go running again.
You seem pleased with your newly developed bedside parenting skills. So am I.
Tuesday, December 8, 2009
Tuesday December 8 – The First Water Stop
This is your one-hundredth day. It’s been a hundred days since you choose life and started this marathon. I poise to you my analogy that I thought of last night about the fellow runners in your race. They are the full array of feelings that you have. You have to run with them because they are in the race too, but you don’t have to run with the negative feelings. I ask you where are you now in the marathon. Last time I asked you said - the port-a-potty. Today you said you are at the first water stop.
Marsha came to see you. She has seen your progress from the early days of the ICU. She has seen big changes. She is excited to know how today turns out. She knows good things will continue to happen to you. You asked if she gave her testimony to the rehab hospital. She said yes – she gave her testimony to God.
We talk about the possibility of going home for the Christmas holidays. I mention that I have the outside Christmas lights put up but I won’t turn them on until you come home. You ask about Annie. “Will I see Annie? I miss Annie.” Oh, I think Annie misses you too. She misses her old life.
The nurses come in and get you cleaned up, shaved and shampooed for the tele-health conference call. I sense that you are nervous. At 9:30am sharp the meeting starts. Your team meets in the conference room off the cafeteria. The team includes physio, OT, dietician, social worker and the stroke coordinator. They all had a role in getting you to this point. We all have a vested interest in getting you to rehab. The NSRC people in Halifax consisted of OT, physio, rehab doctor and nurse. You team members give updates on your progress.
They ask you what are your goals at the rehab. “My main goal is to make my life plan is to get home and makeup a lot to my wife and kids. This is one of the steps to get there so that is what I’m giving all my attention to. That’s why I hope to get in. Thank you.”
The rehab doctor said “With all this information, we think you would make an excellent rehab candidate for here in Halifax. We will do some paper work and put you on the wait list, if that sounds good. You will get here in the near future.” When we pressed for more specifics for an actual time. They weren't sure, but you will be prioritized on the list. It might be before Christmas but they couldn’t guarantee that.
The NSRC team complemented your team for “having everything well in hand.” I asked about Christmas. I mentioned to the NSRC team that we have two very anxious children who have both requested that their Daddy be home of Christmas. It would be a very emotionally uplifting for you and the family. Whether you are at the Colchester Hospital or the NSRC, arrangements can be made for you to be at home. We will meet on Thursday with physio and OT and the social worker for a strategy session of operation ‘Home for Christmas’.
The meeting closes with the rehab doctor saying ”It’s been nice meeting you Chris. We will see you in the hallowed halls of the rehab.”
You were right. You are at the first water stop and now it’s time to move on and set a pace for the rest of the marathon.
When we got back to your room, you called your parents to let them know the good news. My mum came to visit shortly after and you told her how you did.
You are sore after being in your chair for 90 minutes. Your tailbone is sore. It’s not surprising, you have a bony butt. Before your physio, you change your shirt without any help. You carefully guide your left arm through the armholes and pop your head through the neck. As you do physio you ask if your physio and OT team would visit you when you are in Halifax. You will have to let them know how you are doing.
We discuss how the weekly routine will look when you are in rehab. Luckily, in December and January, I can still work three days a week. Melissa, a fellow vet who is pregnant with twins, will need to be off after January. I will have to pick up her shifts. And work full time. If you can get into rehab by late December or early January then we will have a month of the current schedule to get you into the routine of rehab. You are a little anxious about not seeing us except on the weekends. I reassure you that the rehab staff will keep you busy and we can talk every day.
I let you tell the children the details of your rehab meeting today. You speak with confidence and in a reassuring way. “I am going to working hard. Working on my arm and legs. I am working on getting home. They said that I might be able to come home for Christmas once we work out a few details. Hopefully I will get a lot stronger for the Christmas holidays, if I can go before Christmas. I don’t know how long I’ll be in rehab but it’s a step closer to getting back home for good.”
Tara says ”Congratulations Dad, that’s very good.”
“We are very proud of you” Quinn chips in.
In the evening, my sisters call to find out how things went, I told them it was good but that you should have the pleasure of telling them. This is your success. You should bask in it and glow.
Marsha came to see you. She has seen your progress from the early days of the ICU. She has seen big changes. She is excited to know how today turns out. She knows good things will continue to happen to you. You asked if she gave her testimony to the rehab hospital. She said yes – she gave her testimony to God.
We talk about the possibility of going home for the Christmas holidays. I mention that I have the outside Christmas lights put up but I won’t turn them on until you come home. You ask about Annie. “Will I see Annie? I miss Annie.” Oh, I think Annie misses you too. She misses her old life.
The nurses come in and get you cleaned up, shaved and shampooed for the tele-health conference call. I sense that you are nervous. At 9:30am sharp the meeting starts. Your team meets in the conference room off the cafeteria. The team includes physio, OT, dietician, social worker and the stroke coordinator. They all had a role in getting you to this point. We all have a vested interest in getting you to rehab. The NSRC people in Halifax consisted of OT, physio, rehab doctor and nurse. You team members give updates on your progress.
They ask you what are your goals at the rehab. “My main goal is to make my life plan is to get home and makeup a lot to my wife and kids. This is one of the steps to get there so that is what I’m giving all my attention to. That’s why I hope to get in. Thank you.”
The rehab doctor said “With all this information, we think you would make an excellent rehab candidate for here in Halifax. We will do some paper work and put you on the wait list, if that sounds good. You will get here in the near future.” When we pressed for more specifics for an actual time. They weren't sure, but you will be prioritized on the list. It might be before Christmas but they couldn’t guarantee that.
The NSRC team complemented your team for “having everything well in hand.” I asked about Christmas. I mentioned to the NSRC team that we have two very anxious children who have both requested that their Daddy be home of Christmas. It would be a very emotionally uplifting for you and the family. Whether you are at the Colchester Hospital or the NSRC, arrangements can be made for you to be at home. We will meet on Thursday with physio and OT and the social worker for a strategy session of operation ‘Home for Christmas’.
The meeting closes with the rehab doctor saying ”It’s been nice meeting you Chris. We will see you in the hallowed halls of the rehab.”
You were right. You are at the first water stop and now it’s time to move on and set a pace for the rest of the marathon.
When we got back to your room, you called your parents to let them know the good news. My mum came to visit shortly after and you told her how you did.
You are sore after being in your chair for 90 minutes. Your tailbone is sore. It’s not surprising, you have a bony butt. Before your physio, you change your shirt without any help. You carefully guide your left arm through the armholes and pop your head through the neck. As you do physio you ask if your physio and OT team would visit you when you are in Halifax. You will have to let them know how you are doing.
We discuss how the weekly routine will look when you are in rehab. Luckily, in December and January, I can still work three days a week. Melissa, a fellow vet who is pregnant with twins, will need to be off after January. I will have to pick up her shifts. And work full time. If you can get into rehab by late December or early January then we will have a month of the current schedule to get you into the routine of rehab. You are a little anxious about not seeing us except on the weekends. I reassure you that the rehab staff will keep you busy and we can talk every day.
I let you tell the children the details of your rehab meeting today. You speak with confidence and in a reassuring way. “I am going to working hard. Working on my arm and legs. I am working on getting home. They said that I might be able to come home for Christmas once we work out a few details. Hopefully I will get a lot stronger for the Christmas holidays, if I can go before Christmas. I don’t know how long I’ll be in rehab but it’s a step closer to getting back home for good.”
Tara says ”Congratulations Dad, that’s very good.”
“We are very proud of you” Quinn chips in.
In the evening, my sisters call to find out how things went, I told them it was good but that you should have the pleasure of telling them. This is your success. You should bask in it and glow.
Monday December 7 - Positive Internal Dialogues
This morning, I stopped by the hospital before work. I was worried about you from last night. You seemed so fragile. You are better today. Martha had called you last night. After she pumped me up, she called you. You two talked for a while. It was a good talk. You said “I’m glad I choose Martha to be my best friend.” I guess Rod doesn’t measure up to Martha! “She is a good choice for me… She’s a really good friend.”
Martha talked to you about the role of imaginary in sports and how it could help you in your recovery. Elite athletes use imaginary a lot to perfect their performance. Imaginary is not about training the body – it’s about training the brain. This is where it all starts.
As a result of your talk with Martha, you had a good sleep and you are much more positive this morning. I didn’t have as good a sleep. My mind kept wrestling with your emotional demons. When Martha asked me last night, how I was doing, I had to answer that my emotions flux with yours. I have no more control over my feelings then you have over your feelings. It is very frustrating.
You ask about the children. “They are off to school but this morning they talked about you and how they think you will get home for Christmas. They believe in you. They have from the beginning.” I said.
“If I could just improve on what I’ve got and I definitely want to improve.” You said the children build you up by saying you can handle it. “They really give me a boost. I hope I don’t melt down.”
These are the positive internal dialogues that you must have engraved into you mind. It almost seems like the stroke wiped out that part of you. As a result your will is damaged.
As a child, I had a lot of conversations with myself. Confidence boosting conversations. Sometimes the dialogue was so real the actual words would come out of my mouth. At the time, I thought I was a rather weird child but now I think I was just teaching myself how to be confident using positive affirmations. As an adult, I realize that this is probably a common place practice. At least I think it should be a common practice.
I think that you learn best by seeing or hearing and doing. If you hear enough positive dialogues, you will internalize them to be your own. This is the only way, that I know of, to help you believe in yourself again.
To gain a little insight, I ask, “How do you pep talk yourself through the really tough runs, where your body was giving up but your mind won’t?”
“I run, very much on the will of how I feel. If I’m at a race that I think is tough, I have the thought process that if anyone wants to pass me, go ahead – I won’t get in the way. But when I have just a few hundred meters left, I will try to run as hard as I can and try to hold onto my spot.”
I try to imagine how I can incorporate your think style into a motivational thought for you on this special marathon. I wonder if the part about letting runners pass you is a metaphor of the emotional lows that you are having right now. Maybe that is the way to think of these passing profoundly sad moments. They are runners who are passing you and you should just let them go by you. You can’t outrun them all.
For most runners, the challenge of a marathon is to conquer the distance, not beat other runners. The 42.2 kilometers is your opponent not the other people running. In this marathon your emotions are fellow runners. You must run with your emotions not against them. You don’t compete with them – you run with them. Some are good running companions and some are not. If you come across someone on the course who gives off negative energy, you avoid them you don’t race them. In this marathon, the ‘distance’ is the time and energy that you put into healing. It’s a marathon of days, weeks and months not kilometers.
Laura comes to visit. She brings coffee just the way you like it. She runs also and understands the mindset of a runner. She is also a very good rug hooker. You call her the ‘hooker’. She has designed a special rug for you that she wants to do. It is centered on the theme of your Addiction to Life Marathon. You are rather excited about the project.
After work, I come back to the hospital. You ask to play a game of cribbage. This is a game I taught you when we first met. When I found out that your favorite number was 29, I knew this would be a game you’d like. You caught on quickly and surpassed my cribbage skills. When we first moved to Truro we would go to cribbage night at the Liberal headquarters in Onslow. You played like the seasoned players. You could size up a hand in about 5 seconds. The games were very fast paced – I could hardly keep up.
Today, holding the cards is a challenge and seeing to score the points is difficult for you but you persevere.
The social worker pops in to see you. You tell her that you are “going into the crying Olympics…. I am a gold contender.” She thinks that crying is a natural response to everything that you have gone through. You said that you are sad about your future and
How you are doing and how much more you have to do and you are failing.
We talk about the tele-health interview tomorrow. You share your worries that you didn’t score high enough to get into rehab. The social worker corrects you. You did score high enough and the meeting tomorrow is to help place you in the waiting list. “The NSRC won’t likely take you until after Christmas.” She said. “We should meet with the physio team and see what we can do about getting you home for the holidays.” We discuss how we can make it work. We can rent a bed and a commode and set them up in the family room. Life can revolve around you in the family room. We can even have ‘picnic’ Christmas meals in the family room.
The social worker points out that the sadness you are experiencing is a positive sign, “The fact that you can see that the enormity of what has happened to you and the road ahead of you suggests that you are thinking ahead. You have been able to grieve the losses that you have before now. You have to grieve for them before you can try to get them back.”
Erin comes to visit, She is going back to England tomorrow. You are excited at the prospect of being able to visit Donald (Erin’s Father and one of your best friends) at Cedarstone. We discuss the many ways that we can transport you from the hospital to a car and from the car to a chair etc. The idea of a change of scenery is very attractive.
I head out for the grade primary to grade two concert for the school. This is the first of four Christmas shows the children are in. I videotape it so you can feel the experience. I know it kills you to miss these events.
I tried to call after the children are in bed, but the switchboard at the hospital didn’t pickup the phone. Thankfully, you called back. You are having a difficult evening. Once again, you were separated from your call button and feel abandoned and frustrated. I think that some time at home at Christmas can be an important part of your healing. You are getting tired of the hospital. A vacation at home could be just what you need at this time.
To help you to see the positive again, I read to you an email we had received this morning from a friend, Heather, from Ottawa. You talked to her this morning and she was touched by the conversation. In her email she says: “He really encouraged me with my running and I am grateful to him in more ways than he knows. The very fact that he is alive is the first amazing hurdle. The fact that he is having phone conversations and reaching out to encourage others is the second. He has such determination. I wanted to draw some type of parallel between me striving to do the Boston Marathon and him reaching the absolute best recovery. I want him to know that we ALL have that power within us and he especially is gifted with such a great, loving family and circle of friends along with a unique determination that very few other people possess.”
This seems to help. I think that you are tired and this time of day exposes your emotions more. I say “good night and sweet dreams. See you in the morning. We can have breakfast together.”
Martha talked to you about the role of imaginary in sports and how it could help you in your recovery. Elite athletes use imaginary a lot to perfect their performance. Imaginary is not about training the body – it’s about training the brain. This is where it all starts.
As a result of your talk with Martha, you had a good sleep and you are much more positive this morning. I didn’t have as good a sleep. My mind kept wrestling with your emotional demons. When Martha asked me last night, how I was doing, I had to answer that my emotions flux with yours. I have no more control over my feelings then you have over your feelings. It is very frustrating.
You ask about the children. “They are off to school but this morning they talked about you and how they think you will get home for Christmas. They believe in you. They have from the beginning.” I said.
“If I could just improve on what I’ve got and I definitely want to improve.” You said the children build you up by saying you can handle it. “They really give me a boost. I hope I don’t melt down.”
These are the positive internal dialogues that you must have engraved into you mind. It almost seems like the stroke wiped out that part of you. As a result your will is damaged.
As a child, I had a lot of conversations with myself. Confidence boosting conversations. Sometimes the dialogue was so real the actual words would come out of my mouth. At the time, I thought I was a rather weird child but now I think I was just teaching myself how to be confident using positive affirmations. As an adult, I realize that this is probably a common place practice. At least I think it should be a common practice.
I think that you learn best by seeing or hearing and doing. If you hear enough positive dialogues, you will internalize them to be your own. This is the only way, that I know of, to help you believe in yourself again.
To gain a little insight, I ask, “How do you pep talk yourself through the really tough runs, where your body was giving up but your mind won’t?”
“I run, very much on the will of how I feel. If I’m at a race that I think is tough, I have the thought process that if anyone wants to pass me, go ahead – I won’t get in the way. But when I have just a few hundred meters left, I will try to run as hard as I can and try to hold onto my spot.”
I try to imagine how I can incorporate your think style into a motivational thought for you on this special marathon. I wonder if the part about letting runners pass you is a metaphor of the emotional lows that you are having right now. Maybe that is the way to think of these passing profoundly sad moments. They are runners who are passing you and you should just let them go by you. You can’t outrun them all.
For most runners, the challenge of a marathon is to conquer the distance, not beat other runners. The 42.2 kilometers is your opponent not the other people running. In this marathon your emotions are fellow runners. You must run with your emotions not against them. You don’t compete with them – you run with them. Some are good running companions and some are not. If you come across someone on the course who gives off negative energy, you avoid them you don’t race them. In this marathon, the ‘distance’ is the time and energy that you put into healing. It’s a marathon of days, weeks and months not kilometers.
Laura comes to visit. She brings coffee just the way you like it. She runs also and understands the mindset of a runner. She is also a very good rug hooker. You call her the ‘hooker’. She has designed a special rug for you that she wants to do. It is centered on the theme of your Addiction to Life Marathon. You are rather excited about the project.
After work, I come back to the hospital. You ask to play a game of cribbage. This is a game I taught you when we first met. When I found out that your favorite number was 29, I knew this would be a game you’d like. You caught on quickly and surpassed my cribbage skills. When we first moved to Truro we would go to cribbage night at the Liberal headquarters in Onslow. You played like the seasoned players. You could size up a hand in about 5 seconds. The games were very fast paced – I could hardly keep up.
Today, holding the cards is a challenge and seeing to score the points is difficult for you but you persevere.
The social worker pops in to see you. You tell her that you are “going into the crying Olympics…. I am a gold contender.” She thinks that crying is a natural response to everything that you have gone through. You said that you are sad about your future and
How you are doing and how much more you have to do and you are failing.
We talk about the tele-health interview tomorrow. You share your worries that you didn’t score high enough to get into rehab. The social worker corrects you. You did score high enough and the meeting tomorrow is to help place you in the waiting list. “The NSRC won’t likely take you until after Christmas.” She said. “We should meet with the physio team and see what we can do about getting you home for the holidays.” We discuss how we can make it work. We can rent a bed and a commode and set them up in the family room. Life can revolve around you in the family room. We can even have ‘picnic’ Christmas meals in the family room.
The social worker points out that the sadness you are experiencing is a positive sign, “The fact that you can see that the enormity of what has happened to you and the road ahead of you suggests that you are thinking ahead. You have been able to grieve the losses that you have before now. You have to grieve for them before you can try to get them back.”
Erin comes to visit, She is going back to England tomorrow. You are excited at the prospect of being able to visit Donald (Erin’s Father and one of your best friends) at Cedarstone. We discuss the many ways that we can transport you from the hospital to a car and from the car to a chair etc. The idea of a change of scenery is very attractive.
I head out for the grade primary to grade two concert for the school. This is the first of four Christmas shows the children are in. I videotape it so you can feel the experience. I know it kills you to miss these events.
I tried to call after the children are in bed, but the switchboard at the hospital didn’t pickup the phone. Thankfully, you called back. You are having a difficult evening. Once again, you were separated from your call button and feel abandoned and frustrated. I think that some time at home at Christmas can be an important part of your healing. You are getting tired of the hospital. A vacation at home could be just what you need at this time.
To help you to see the positive again, I read to you an email we had received this morning from a friend, Heather, from Ottawa. You talked to her this morning and she was touched by the conversation. In her email she says: “He really encouraged me with my running and I am grateful to him in more ways than he knows. The very fact that he is alive is the first amazing hurdle. The fact that he is having phone conversations and reaching out to encourage others is the second. He has such determination. I wanted to draw some type of parallel between me striving to do the Boston Marathon and him reaching the absolute best recovery. I want him to know that we ALL have that power within us and he especially is gifted with such a great, loving family and circle of friends along with a unique determination that very few other people possess.”
This seems to help. I think that you are tired and this time of day exposes your emotions more. I say “good night and sweet dreams. See you in the morning. We can have breakfast together.”
Sunday, December 6, 2009
Sunday December 6 - Believe
At 9:00 am, you call me and ask me to bring a coffee. Your voice is strong – almost normal – it sounds good. Quinn knows that it’s you on the phone and practically rips the phone from my ear. “It’s snowing Daddy!” The two of you banter back and forth with crazy terms of endearment. You speak to Tara for a little while and ask us to hurry up and get to the hospital.
Quinn lost a tooth yesterday – but lost it at Granny’s house. I guess the tooth fairy is going to have to do some magic to find it.
I sense that you are a little more down today. As you sit in your chair, you talk to Steve (brother). You tell him “technically this leg and arm belong to me, so I am going to take them along with me. I may be handicapped the rest of my life.” As you talk your right foot tremors. The tremor shakes the table with your lunch. The physio people showed me how to stop it. One has to stretch the foot so that the heel is forced down and toes pointed up. This trick works well but the effects don’t last very long. I try to settle the tremor while you are on the phone.
You mention to Steve that the physio team is super sweet and great to work with. You want to find them a couple of nice bachelors for them.
When you talk to Chris from Ottawa, you mention that you want to walk. You want to walk and visit people and become the Truro version of the ‘King of Kensington’ and know everyone on the streets of Truro.
Once Juanita, Wayne and Maddie and Farley come to visit, I pop out to go see my Father. He knows of his cancer now and is starting to come to terms with it. He asks me how am I doing, and I fall apart. It’s hard holding it in all day in front of the children and you and yet still manage to be positive at all times. It’s exhausting. I have a good chat with Dad and promise that I’ll be back to visit soon.
You are showing symptoms of a possible UTI again. Andrew is going to let the doctor know in the morning.
We get you settled in bed so you can watch a Dallas Cowboys football game. You seem Ok at the time but I think you are on the edge.
I call you just as I’m getting the children into bed. I had thought a bedtime goodnight might be good, but you were feeling overwhelmed with sadness. You expressed concern that you are not worthy of the attention you need. I assure you that you are worthy, You are worthy of everything good that has happened since your stroke day.
You don’t believe in yourself. I tell you that we all believe in you and that there are many others who believe in you too. “We can’t all be wrong. You are capable of over coming this.” I remind you again of the progress you made so far.
I appeal to your strong sense of fatherhood. “There are two little people who need you and they are counting on you. They have believed in you right from the beginning. Please, don’t let them down. They deserve to have their Daddy and you deserve to be their Daddy. There is no one in the world who can do the job of Daddy for them like you can. This is going to be hard, but you have no choice. You have to start believing in yourself.”
Ironically, yesterday at the staff party, the staff got together and gave me a gift. It included a frame of a word the word was ‘BELIEVE’. When I was cleaning up this morning, I thought this is a word that you need to see and feel. There are so many things that the word believe pertain to. We need to believe that you can get better, believe in the health care team and their expertise, believe in the process of healing and most importantly – you must believe in yourself. I showed you the plaque this morning and I put it up in the window where you can see it from your bed.
You seem to settle after this talk. But I’m worried where these feelings are going to lead. I worry that this may spiral out of control. I can’t help but worry when I see that you don’t believe in yourself. I tell you “I’ll stop worrying about you when you start to believe in yourself.” I said.
Later in the evening, I called Martha and talked to her about your sadness. Since she lives west of us, the time change makes evening calls easier for her. I suggest that she and other Ottawa friends could call during the ‘witching hour’, as Martha refers to it. The time of day when one’s resolve to hold things together weakens and strong feelings take over.
Martha gives me a pep talk and acts as a sounding board to my worries and becomes the voice of reason. It seems my life is dominated by pep talks lately. I give them to you. Others give them to me. You give them to the children and I give them to my father. With all of this motivational speaking going on, you would think something really good is going to happen.
I realize that there is a key difference between the sadness that you are experiencing now and the signs of depression that I know of. You are not withdrawn. You are the opposite. You are trying very hard to reach out of a life saver. Today, you made several phone calls, sadly most of the people you called weren’t home. I hope this experience doesn’t teach you not to reach out
Quinn lost a tooth yesterday – but lost it at Granny’s house. I guess the tooth fairy is going to have to do some magic to find it.
I sense that you are a little more down today. As you sit in your chair, you talk to Steve (brother). You tell him “technically this leg and arm belong to me, so I am going to take them along with me. I may be handicapped the rest of my life.” As you talk your right foot tremors. The tremor shakes the table with your lunch. The physio people showed me how to stop it. One has to stretch the foot so that the heel is forced down and toes pointed up. This trick works well but the effects don’t last very long. I try to settle the tremor while you are on the phone.
You mention to Steve that the physio team is super sweet and great to work with. You want to find them a couple of nice bachelors for them.
When you talk to Chris from Ottawa, you mention that you want to walk. You want to walk and visit people and become the Truro version of the ‘King of Kensington’ and know everyone on the streets of Truro.
Once Juanita, Wayne and Maddie and Farley come to visit, I pop out to go see my Father. He knows of his cancer now and is starting to come to terms with it. He asks me how am I doing, and I fall apart. It’s hard holding it in all day in front of the children and you and yet still manage to be positive at all times. It’s exhausting. I have a good chat with Dad and promise that I’ll be back to visit soon.
You are showing symptoms of a possible UTI again. Andrew is going to let the doctor know in the morning.
We get you settled in bed so you can watch a Dallas Cowboys football game. You seem Ok at the time but I think you are on the edge.
I call you just as I’m getting the children into bed. I had thought a bedtime goodnight might be good, but you were feeling overwhelmed with sadness. You expressed concern that you are not worthy of the attention you need. I assure you that you are worthy, You are worthy of everything good that has happened since your stroke day.
You don’t believe in yourself. I tell you that we all believe in you and that there are many others who believe in you too. “We can’t all be wrong. You are capable of over coming this.” I remind you again of the progress you made so far.
I appeal to your strong sense of fatherhood. “There are two little people who need you and they are counting on you. They have believed in you right from the beginning. Please, don’t let them down. They deserve to have their Daddy and you deserve to be their Daddy. There is no one in the world who can do the job of Daddy for them like you can. This is going to be hard, but you have no choice. You have to start believing in yourself.”
Ironically, yesterday at the staff party, the staff got together and gave me a gift. It included a frame of a word the word was ‘BELIEVE’. When I was cleaning up this morning, I thought this is a word that you need to see and feel. There are so many things that the word believe pertain to. We need to believe that you can get better, believe in the health care team and their expertise, believe in the process of healing and most importantly – you must believe in yourself. I showed you the plaque this morning and I put it up in the window where you can see it from your bed.
You seem to settle after this talk. But I’m worried where these feelings are going to lead. I worry that this may spiral out of control. I can’t help but worry when I see that you don’t believe in yourself. I tell you “I’ll stop worrying about you when you start to believe in yourself.” I said.
Later in the evening, I called Martha and talked to her about your sadness. Since she lives west of us, the time change makes evening calls easier for her. I suggest that she and other Ottawa friends could call during the ‘witching hour’, as Martha refers to it. The time of day when one’s resolve to hold things together weakens and strong feelings take over.
Martha gives me a pep talk and acts as a sounding board to my worries and becomes the voice of reason. It seems my life is dominated by pep talks lately. I give them to you. Others give them to me. You give them to the children and I give them to my father. With all of this motivational speaking going on, you would think something really good is going to happen.
I realize that there is a key difference between the sadness that you are experiencing now and the signs of depression that I know of. You are not withdrawn. You are the opposite. You are trying very hard to reach out of a life saver. Today, you made several phone calls, sadly most of the people you called weren’t home. I hope this experience doesn’t teach you not to reach out
Saturday December 5 - Thingy Appendages
Tonight is the staff Christmas Party for everyone at the animal hospital. It is a fun filled affair and that takes my mind off my worries of the week. Joye and Valerie came over in the morning to clean the house and decorate for tonight. With a little effort, the job was done in about 90 min! Then the children and I pack up our weekend things and head out to see you.
Tongue biting has been the most recent problem. Hopefully, it has innocent beginnings but the result of a couple of bites is a hematoma on the left side of your tongue, which of course, makes it easier to bite your tongue again. This has put you off eating. The dietician has ordered in softer meals so that you don’t have to bite down hard on the food, but you are still a little gun shy. I hope this doesn’t affect your weight over the weekend. It’s lousy timing that you tongue injury would happen now, just when the PEG tube feeding has been stopped.
Once you are in your chair, we go downstairs to visit Pam, another patient. She was very ill a few weeks ago but she is making a comeback too. She is a very determined and independent woman. She said “Determination is all that you have” when fighting illness. You agree with her. I applaud you both and thank God for strong people in my life.
You tell Pam that you are on your way to rehab. As you lift up your left with your right to show her, you say “I am going to bring along this arm appendage thing.” Then you gesture to your left knee. “There’s also this foot thing attached to the knee. I’ll take too.”
This is progress, Until a few days ago, you felt that these limbs should have been cut off because they really part of you. The other interesting thing is that it seems you identify with your left knee now. It’s yours and the only weird thing to you is that the ‘foot thing’ is attached. Your possession of your leg is advancing from the top down. You now own your hip and possibly your knee, Now you just have to gain back the lower limb.
After lunch, which you ate in your chair, Quinn and I make a word search for you. Quinn wrote a special love note and wrote out the words to ’Chris’ Addiction to life Marathon’ on individual sheets of paper and posted them along the hallway. You wheeled yourself down the hall found the sheets. Most of them on the left side. You got them all. “That’s 100% on the test Daddy!” Quinn said pleased.
You played a little game of chase Quinn and Tara down the hall. It was like before your stroke except the wheel chair is an added prop. You are in a good mood today. You want to go for a walk or run with your GPS watch. You want to do more then ever today. You suggest I bring some weights for you to use to start bulking up your muscle. “I can do some curls while in the chair or in bed.”
You and Quinn continue your war game – there is no winner yet. As you play, you comment to Quinn how children make their parents want to be strong. “This helps me and my recovery.” The children certainly helped me be strong at some pivotal moments early in the marathon. Tara and her magic blanket and Quinn finding ‘channel 29’ were both instrumental in me finding the inspiration to continue.
You have been in the chair for almost two hours. A record for you! You are really starting the race now – you are out of the pot-a-potty and you are warming up and getting psyched for your marathon of recovery. I realize now that I had the marathon metaphor all wrong. The past 96 days represented the training necessary for your recovery marathon. The actual marathon, for you, starts when you get into rehab. The marathon for me started 96 days ago.
We worked a little on the Christmas letter, listen to music and play ‘Headbez’ a game sent to us from friends in BC. Jennifer from the church came to visit and the two of you had a good talk while the children and I played Headbez.
Fran must leave today for Newfoundland. She looks tired from all the energy she gave you, me, the children and our dying father. You are worried about her, so am I. I hope she can collect herself for the difficult days ahead for our father.
The staff party was lots of fun. This only could happen with great organization. Thanks to Joye, Valerie and Ashley, who directed the last details of the party from her bed after breaking her leg last week while playing hockey. I was relaxed and the party seemed to go by too fast.
You call half way through the party. You mentioned that you haven’t cried once today.
I think that this week has represented another break through. You attitude has morphed over the last three months from not even knowing you have any problems, to knowing you “can’t do anything“ to “I don’t want to” and finally “I want to do it.” This is a good foundation for rehab.
NOTE to readers: Recently someone said they would like to past on a message to Chris but not post it on the blog. I understand this - many personal stories are ... well personal and not everyone wants to share their words with everyone. Some surviving souls do share publicly and some don't. So if you would like to share your thoughts with Chris but are unable in person please email me at ccashen@eastlink.ca.
Tongue biting has been the most recent problem. Hopefully, it has innocent beginnings but the result of a couple of bites is a hematoma on the left side of your tongue, which of course, makes it easier to bite your tongue again. This has put you off eating. The dietician has ordered in softer meals so that you don’t have to bite down hard on the food, but you are still a little gun shy. I hope this doesn’t affect your weight over the weekend. It’s lousy timing that you tongue injury would happen now, just when the PEG tube feeding has been stopped.
Once you are in your chair, we go downstairs to visit Pam, another patient. She was very ill a few weeks ago but she is making a comeback too. She is a very determined and independent woman. She said “Determination is all that you have” when fighting illness. You agree with her. I applaud you both and thank God for strong people in my life.
You tell Pam that you are on your way to rehab. As you lift up your left with your right to show her, you say “I am going to bring along this arm appendage thing.” Then you gesture to your left knee. “There’s also this foot thing attached to the knee. I’ll take too.”
This is progress, Until a few days ago, you felt that these limbs should have been cut off because they really part of you. The other interesting thing is that it seems you identify with your left knee now. It’s yours and the only weird thing to you is that the ‘foot thing’ is attached. Your possession of your leg is advancing from the top down. You now own your hip and possibly your knee, Now you just have to gain back the lower limb.
After lunch, which you ate in your chair, Quinn and I make a word search for you. Quinn wrote a special love note and wrote out the words to ’Chris’ Addiction to life Marathon’ on individual sheets of paper and posted them along the hallway. You wheeled yourself down the hall found the sheets. Most of them on the left side. You got them all. “That’s 100% on the test Daddy!” Quinn said pleased.
You played a little game of chase Quinn and Tara down the hall. It was like before your stroke except the wheel chair is an added prop. You are in a good mood today. You want to go for a walk or run with your GPS watch. You want to do more then ever today. You suggest I bring some weights for you to use to start bulking up your muscle. “I can do some curls while in the chair or in bed.”
You and Quinn continue your war game – there is no winner yet. As you play, you comment to Quinn how children make their parents want to be strong. “This helps me and my recovery.” The children certainly helped me be strong at some pivotal moments early in the marathon. Tara and her magic blanket and Quinn finding ‘channel 29’ were both instrumental in me finding the inspiration to continue.
You have been in the chair for almost two hours. A record for you! You are really starting the race now – you are out of the pot-a-potty and you are warming up and getting psyched for your marathon of recovery. I realize now that I had the marathon metaphor all wrong. The past 96 days represented the training necessary for your recovery marathon. The actual marathon, for you, starts when you get into rehab. The marathon for me started 96 days ago.
We worked a little on the Christmas letter, listen to music and play ‘Headbez’ a game sent to us from friends in BC. Jennifer from the church came to visit and the two of you had a good talk while the children and I played Headbez.
Fran must leave today for Newfoundland. She looks tired from all the energy she gave you, me, the children and our dying father. You are worried about her, so am I. I hope she can collect herself for the difficult days ahead for our father.
The staff party was lots of fun. This only could happen with great organization. Thanks to Joye, Valerie and Ashley, who directed the last details of the party from her bed after breaking her leg last week while playing hockey. I was relaxed and the party seemed to go by too fast.
You call half way through the party. You mentioned that you haven’t cried once today.
I think that this week has represented another break through. You attitude has morphed over the last three months from not even knowing you have any problems, to knowing you “can’t do anything“ to “I don’t want to” and finally “I want to do it.” This is a good foundation for rehab.
NOTE to readers: Recently someone said they would like to past on a message to Chris but not post it on the blog. I understand this - many personal stories are ... well personal and not everyone wants to share their words with everyone. Some surviving souls do share publicly and some don't. So if you would like to share your thoughts with Chris but are unable in person please email me at ccashen@eastlink.ca.
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