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.
Friday, December 18, 2009
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.
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