Sunday April 4 – A New Beginning Together.

I thought today was going to be a good day … it wasn’t.

It started out good. In fact, my waking moments almost seemed normal. I awoke because bony elbows and knees were digging into me and I could hear your voice mixed with the children’s giggles. You were teasing the children about Easter Bunny stuff. It felt normal … for a few minutes. By the time I got you out of bed and ready to go for the day the moment of normal had passed. We were both reminded of the lack of normal in our lives as I helped you to the bathroom.

We stall the children with breakfast and the two presents on the kitchen table helped with the delay … briefly. You surprised me with a present too. This isn’t something that we have done it the past. Easter has always just included a few Easter eggs, chocolate of course. We never did presents for the children or each other.

This year is an extraordinary year. You want to mark it with something for me. A necklace. You said that it represented a new beginning for us. I am touched but a little worried that this extravagance will become a habit. Hearing these concerns started you on the downslide. By this time, the children were ready for the real action and they had been patient.

You didn’t want to watch the Easter egg hunt. You didn’t want to see the fruits of your labour from yesterday. I persuaded you to come down to the mancave where your friend the Easter Bunny laid the eggs. Of course the entire hunt was over in about 10 minutes. Tara found 23 and Quinn found 18.

The house rule is that the eggs are family property and are to be divided up evenly between the children. Tara and Quinn negotiate various swaps to get the egg colours that they liked the best. I enjoyed watching them work on their bargaining and diplomacy skills. All parties left the bargaining table happy. If only world peace were this easy.

You gave me a necklace. A white gold necklace. This was the surprise that you hinted at yesterday. Juanita helped you pick it out. It is simple and beautiful and even though I am not a jewelry magnet, I wear it with love. For the cost of it, you could have given me two large truckloads of compost, which I would also ‘wear’ with love … all summer long as I play in the garden. You said, as you gave it to me, “This represents our new beginning together. I love you.”

It was great to see so many familiar faces at the church service. You chatted it up with members of the congregation and seemed in a better mood when we left.

I tried to keep the children busy with kid and doggy play dates. Meanwhile, you hovered between sadness and depression. You take me along with you down these dark and scary paths with you.

There are times when your words make me wish that I had never said yes to the surgery that saved your life. Being so caught up in your despair makes it hard for me to see things from the right prospective. I feel like I am kinder to my animal patients then I am being to you. How could I put you through this hell that you are in?

I start to question myself and I lose it. I can’t even find the breath to talk. You pat my head and tell me that you understand that I didn’t know that it would be this bad.

If this is what’s it like on weekends, I worry about what’s it is going to be like after your discharge date on April 22.

Being an optimist by nature, I have always thought, throughout this ordeal, things will get better once you are out of ICU or when the tracheotomy tube is out or when you can talk or when you go to rehab or when you can walk or do stairs.

Now I live in fear of the future. I know that once you are home, it will take a long time for you to heal emotionally from this. There are moments when I don’t know if I can hold out that long.

Quinn has embraced the juggling skill and is moving on to other applications. I suggest that he try bouncing on a ball while juggling. We have a bouncing ball that is designed to do this. “His eyes light up “Cool, Mummy, I am going to try that!” He has the ‘I think I can’ attitude. I hope it is contagious to you … and me.

Saturday April 3 - Carpe Diem

The local homecare coordinator came to visit and meet you. She tells us what the homecare workers will do for you. We talk about a schedule and the costs. She explains the self-managed care program to you. This program requires that you are able to act as an employer. You hire and instruct the caregiver. You even over see the budgeting of money that is used to pay for the workers.

The coordinator tells you about the stroke that she had a few years ago. She is empathetic, organized and methodical and knows how things can go wrong and the pitfalls to watch for. I wonder how many of these skill and attributes are part of her and how many are acquired from her experience with a stroke. Regardless, these special skills will help you in your transition from hospital to home life.

I am very excited about this program. You will be able to find the right people or person for you and there will consistency for you and the family. I can imagine that in no time the workers will be family friends.

The rest of Saturday was a typical crazy Saturday. The weekly pattern of going to Halifax was starting to get to me. Now the activities that the children are involved in are starting to swell into a tidal wave. Being home makes it easier to keep them involved in their things.

This is a perennial problem, Just as activities, that started in Sept, are winding down, new summer ones start. This coincides with the beginning of the gardening season (my play time) and the busiest time of the year at work. One way or other, I will get through the next few months. It will be easier with you home and settled into a new routine.

Juanita took you shopping today. You are not a shopper by nature but you haven’t shopped in a long time and there are certain things you want that I won’t get for you. Cigarettes and lotto tickets. The children and I are busy baby sitting Maddie and Farley and zipping out to two singing practices.

In the afternoon when you get back with Juanita – Tara and Quinn and I go to the movie that I promised last weekend but couldn’t deliver because you didn’t want to see another movie. You are still in post traumatic stress syndrome from Avatar. It was painful to go to a movie in the middle of a beautiful day.

I am looking forward to the day that I don’t have to race from thing to thing.

Janice and Edwin and three of their girls come for a quick visit on the way home. I vent my frustration about the cigarettes to Janice. You overhear. So I ask you, point blank, “Did you buy any today?” “No” you said with a frustrated voice, “It seems that the thing I wanted to do the most gets forgotten. I got the lottery tickets but then Juanita did some fancy driving and we didn’t have time.”

I was pleased that you prioritized your shopping needs to include some Easter Bunny things that we will need for tomorrow over your smoking needs. You felt that the children should be spoiled by the Easter bunny this year. I was a little apprehensive about what you would get for them, especially since you went to the banking machine three times since yesterday.

You did well, You got some small chocolate eggs and a present for each of them. A Battleship game and a superball making kit. I thoroughly approved of the presents. You said that you liked Battleship when you were a kid and you could play that with them.

I’m very happy that you were thinking that way.

The money that you withdrew from the bank would have supplied several spoiled children for Easter. “What happened to the rest of the money?” I ask. You just smiled at me. “You’ll see.” You said cryptically. I guess I have to be patient. I have a hunch from discussions that we have had but I’ll wait and see.

“’Carpe Diem’ or ‘Seize the Day’ is what you want tattooed on your left arm. “It won’t hurt to put a tattoo there.” You said. I looked up ‘Carpe Diem’ and the actual phrase that it was used in by Horace, a Latin poet, is: “Seize the day, trusting as little as possible in the future". I’m not sure that is a good thing to put on your arm.

As much as I think that this is an attitude to aspire to, I also have learned the value of having hope of the future. When I first read these words, I hear them from the prospective that ‘trusting as little as possible in the future’ was about having bad expectations.

Maybe one should look at it from the other 180 degrees too. We don’t know what is in the future … really. Rather then focus on the possibilities that aren’t real, we should focus on the realities of the moment. As I write this, I can see my thinking coming to circle about the mediation thing again.

After spending a lifetime thinking about the future and what could be, I can see that Carpe Diem is going to be hard to do.

Friday April 2 – Healing is a Family Affair

It’s another bad morning. You want me to drive you to the Cobequid Trail and leave you there to die. “I want to finish it … I want to finish what I begun, I want to finish dying.”
You feel so useless. When I try to point out what you can do – I strike out.

You keep saying, “I’m sorry, I’m sorry.” Sorry for what – I forgave you a long time ago, you need to forgive yourself. We need to move to the next step – there are things you can do – you have to focus on them, not waste our energy on seeking forgiven that has been given.

We need to get to the next step. The next step. What is the next step? The 12-step program suggests that letting God into your heart is part of it. I confess to you that I don’t know what the next step is but we will find it together. Perhaps the next step isn’t about letting God in, perhaps it’s about finding God within. When you find that energy, you will be able to find yourself again. I wonder if part of your soul died that day and that it is the real loss that you are grieving.

“I’ll try.” You said as I helped move to the chair. As you stood, we hugged. A real stand up hug … just like the hug I felt in my dream the week of your stroke. It felt the same. It felt good. It restored me.

You had breakfast with the children. A rare event in recent history. I slip out to have a shower and eavesdrop on you and the children talking about feelings and sharing feelings. “Communication is the best medicine.” You tell them. I felt good listening to the conversation. When I’m not there, you don’t wallow in self-pity, you step up to the plate and act like a great parent. Listening and giving sound advice. Helping them find the answers to the tougher questions in life. You can do this and you do it well.

At one point this morning before our stand-up hug, I was alone in our bedroom and feeling a little overwhelmed with the words that we had earlier. Tara came in and saw me, feeling weak and vulnerable. She sat beside me and put her arms around me and hugged me. An uncharacteristic action for her. She asked, “Are you OK Mummy?”

“Communication is the best medicine.” The children will be our salvation. They will help us through this recovery. Healing will be a family affair.

You said something today that I really want to get down on paper for proof. You expressed to me that the need that I have … to share our story … is OK with you. You understand if I have to ‘vent’ (your word) to other people. You feel badly that you can’t be on the receiving end and you are looking forward to the day I will vent to you. That’s right, you WANT me to vent to you! These are the words I want to mark. Words that most wives don’t get to hear their husbands say.

There is a lot of talk about the cigarettes. Out of frustration I decide to give you the last pack of cigarettes that you bought before your stroke. This is the pack that I dug out of the garbage last week. I was suddenly inspired to give you them. I am willing to bet that you wouldn’t smoke them because of their significance to you. They are a symbol.

You agree that you wouldn’t smoke them but for a different reason. “They will be stale.” You said “stale and too strong. I haven’t smoked in seven months, I can’t start with du Maurier!” You want to buy more cigarettes. Thank God it’s Good Friday and the stores are closed. I manage to evade your requests.

We agreed that if you smoked, you would not do it on front of me or the children and you won’t smoke in the house. As we discuss this, you read the anti-smoking message on the package. “Children see, Children do.”

I can’t picture you smoking. “I’ve not seen you smoke in the past and I have no desire to watch you smoke now.” You mime taking a drag off a cigarette. Hearing you suck air through your pursed lips gives me the creeps. I don’t want to think of you smoking.
You tell me about smoking when you were a child. Sneaking cigarettes and smoking them in secret. I had no idea that this started long before I even met you.

The children wanted to look at the cigarettes. Tara reads the package. “Your children are twice as likely to smoke if you do. Half of premature deaths among life-long smokers result from tobacco use.” Tara tries to figure the logic … “If we almost lost Daddy once, then that means …” her voice trails off in thought. I don’t want to hear her conclusion.

We explain to them what we had discussed about you smoking. “Daddy is going to work really hard at not smoking but it’s very hard … harder then running in a marathon. He may slip and smoke but he is going to keep trying.”

You felt a little lightheaded today. You try to explain. “It’s like I’m in another dimension. I want to take a can opener and open up my head and let the spirit out. It like in the Dr Suess book, Horton Hears a Who – “I am here, I am here!” I want to be a regular person again. I’m jealous of other people who can walk and run and laugh and drive and be normal.

A neighbor, Darren, stopped by to visit you. He came at a good time. I was running out of positive talk. Like tag team wrestling Darren spells me off and has a turn talking with you. Being a fellow runner and a devoted family man, he grabs your attention and you stop circling the dark thoughts for a while.

It didn’t last long. You try to get the children to imagine what life would have been like without you. You think that we would have had a better life. I don’t have to protest that much … the children try to set you straight. We can’t think about this as an alternate history, because it didn’t happen that way.

This lead to a discussion about the day of your stroke. You asked me to read the first entries in the journal. I read and we all take turns crying. You started and Tara consoles you. I can’t even say the words at times. Tara cries and Quinn says, “lets not talk about it anymore.” He takes a few breaths and waves to me to continue.

Hearing the words helps us purge some of the bad feelings. A healing act. You confess to me that you read that part of the journal yesterday at the hospital. You concluded that you would never know what we went through and we will never know what you went through.

I realize as I write tonight that the family plan for healing is very alive and well in our home. As the children pep talk you and rally you back to a better place. Reading the journal reminded me of all the feelings I had that first day and how the children were my light and reason for hope.

Healing is a family affair.

Thursday April 1 – Relationships and Feelings

Today, on my way to work, I was thinking about relationships. Normal relationships verses ‘abnormal’ relationships. A normal relationship is a two-way exchange of information and sharing feelings and ideas.

You are surrounded by abnormal relationships while you are at the NSRC. I suppose that the medical community must try to distance themselves from the patient. A necessary skill to avoid compassion fatigue. However, I do wonder how helpful this one-way relationship is to the patient. This illustrates to me very vividly why it is so important to have people around a patient who belong in the patient’s life in a ‘normal’ capacity. A healing energy comes from healthy relationships.

This morning Tara was very helpful. She got up early and fed the cats and put Annie out to pee. She then took Quinn’s order of breakfast. It all seemed too good to be true. Then I realized what she was up to. It’s April fool’s day! As I get my breakfast, I see her slip some cat food into Quinn’s peanut butter sandwich.

Quinn suspects right away that something is up. He eyes the sandwich with suspicion then he takes a bite. He smiles and chews and shallows and refuses to give Tara the satisfaction of being a pranker. His resolve to outsmart Tara fades before he can take to second bite. He can’t talk or even swallow again. He runs to his room very upset. I follow him and rally his spirits with the advice that revenge is sweet and best served cold. Once I explain what this means, he smiles at the thought.

Marsha brought you home from the NSRC after her work today. You arrive just in time to come with me to pick up the children and take them to piano lessons. Tara and Quinn are excited to show off their pianist skills.

In the evening, your tell me about your new OT. You really like her but you are worried that you are going to alienate her. You have been asking her some probing questions and feel that you hit a nerve with her. You can’t seem to accept that she wants to keep your relationship professional. “Possibly” I point out “She doesn’t want to burden you with her problems.”

You feel that you “must have been saved for some reason.” You are trying to figure out why. “Maybe I am supposed to help her in some way?” I suggest that tomorrow, you could visit Donald. Maybe you were supposed to help him or any number of people who know or will meet in the future. Who knows their destiny. You just have to have faith that your life has a reason.

“I should have died … I was robbed of death.” These are your bedtime thoughts. They are hard thought to hear. I know that to heal, you must verbalize these notions but that doesn’t make any easier to listen to them. Especially since I feel responsible for you having the surgery that saved your life.

When I said yes to the surgery, I didn’t picture life quite like this. I didn’t know what the picture would look like. When I’m close to you physically and emotionally, I get swept up in your depression and it is hard to bare. I feel horrid. Then I try to imagine how you feel. It’s too much to bear.

My only thread to sanity is to escape from your words and the feelings they evoke. When I do this try to escape, I feel worse. I created this hell for you why should I be able to escape it when you can’t.

I have to find a better way to cope when you are home fulltime.

Wednesday March 31 – Connecting and Connections

Still a busy signal on your phone – first thing in the morning. “It must be off the hook, who else would be calling you at 7am?” I call the nurse’s station and it was off the hook. I finally reached you and you were worried when I didn’t call. You feel the need to connect every day. You are craving real relationships.

You were worried that I had left you for someone else! This has been a worry for you over the last few weeks. I find it frustrating to talk to you about this. “Where would I find the time?” I ask you. “Life is far too complicated as it is, I have no interest in making it more complicated.” My logic doesn’t sink your fears. I guess irrational fears are … just that irrational. Logic has no effect. I try different tactics. Still no success. Perhaps this is something that time will heal. I hope so because this is a conversation that I don’t enjoy at all.

Your PT timed you today. She timed a lap of the PT floor. You walked, alone – you think, down the hall cut across by the elevators and back up the hall to the PT gym. It took 9min 45sec. Not a fast pace but it is a good baseline to measure yourself against.

You like your new OT. With most of the medical professionals who have helped you and you like, you would like to get to know better. She would rather keep the relationship professional.

Pre-stroke, you always had a knack of asking probing and often personal questions of people you want to know better. This has not changed. This is your way of reaching out and connecting to others. The problem with this approach, in a hospital setting, is that the medical staff want to keep their relationship with you professional. This relationship is a one way thing. They get to know all about you but you don’t get to know much about them. This makes relationships rather artificial and as a result they are not rewarding.

When you get home you will be able to invest yourself in real relationships with family and friends that are rewarding and healthy.

Today I connected with an amazing family from Tatamagouche. Joan, the mother, is very involved in brain injury recovery. She has two very good reasons to so passionate about brain injury recovery. Her daughter had major brain surgery that left her with half a brain and her husband had surgery last year for a brain aneurysm. Like you, he is a runner and has run in twenty-five marathons!

Joan’s idea is to help brain injured survivors help their recovery by using their talents that they have and allow family, especially children, assist in the recovery. I made a promise to visit when you get home and we find a rhythm to family life again. I think that you will want to be involved in this project.

Once again, I am in awe of the frequency that people find us and we find people who wish to share their inspiring story with us. I picture us as neurons, making new connections with others and building an amazing machine that will make a difference. New connections every day.

Tuesday March 30 – A Visiting Team.

My day starts out like every other day. Crazy. I have to rush to my eye doctor in Halifax for an eye appointment. I rush to wait. I waited almost two hours only to find out that my bad eye, is worse. I am losing vision in my right eye and you have lost it in your left. Between the two of us, we have one pair of good eyes. As we age, it will be the blind leading the blind. What a team.

I get more drugs to help save my sight and prevent further damage to my eyes. I wonder aloud to my doctor, about the possibility of stem cell therapy helping my sight in the future. He isn’t very helpful. I expect the field is too new and little is known yet.
Thankfully, my eye condition is slowly progressive and although the left eye is affected the vision is still good. I am confident that in time, there will be other treatments available.

When I discussed stem cell therapy with your doctor a few weeks ago, I mentioned that I figured that stem cell therapy is going to flip rehab medicine upside down. Your doctor agreed. Stem cell treatment is going to rework a lot of medicine, as we know it

Timing is everything. Will the steep learning curve for stem cell research and application be accomplished by the time we can capitalize on the stem cells therapy for you to get the best results?

My ophthalmologist asks at the end of the appointment how you are doing. I try to give him the inventory list of your losses. The words still get caught in my throat; Hemiplegic, hemianopsia and left neglect. I will have to get used to saying the words but it is hard to mouth them.

On the way home, I thought about your visiting team. If I can get together a group of people who would visit you regularly then we would have a large part of the odd hours that I will not be with you covered. I have already had a few people say that I was to consider them to help out.

In many ways, this is like our situation from the fall. So many kind and loving people opened up their hearts to Tara and Quinn. Once again I find myself reaching out to our close knit community to help with your recovery.

I have started a list. If any readers of the blog, who live in or around Truro, wish to visit Chris occasionally, please let me know by emailing me at ccashen@eastlink.ca.

No phone call tonight. Your line was busy, busy, busy. I hope that you aren’t upset with me like last Thursday when I could not get through.

Monday March 29 – Focus on the Feelings.

It wasn’t hard to get the children up today. You are still home and it’s a school morning. They are both excited. You are going to go to the school with them. Like most siblings, they fight over who is going to get push you in the chair and which classroom you are going to visit first.

It’s a great visit. So many familiar faces. You would spend all day there if I hadn’t dragged you away. You know all the children in both Tara and Quinn’s classes. You volunteered with the classes since they started in their primary year.

You roll around the classes and name each child by name and asking questions about their life that you missed. Occassionally, you would stumble over a name but you got most of them right. I could tell you are pleased with yourself that you remembered all the important details.

We are almost late for your PT session. Just as we roll in the door, you recall the PT saying that she had cancelled you session today. You had forgotten to tell me. Oh man, all the hurry and worry to be on time for nothing.

We had a psychologist appointment in the morning. I had forgotten, but the psychologist hadn’t and tracked us down. I guess we are even in our forgetfulness – Your excuse is that you had a catastrophic stroke.,.. what’s mine?

It was a good session. A lot less tears then the first time we had met together. There were several topics and he said, “We covered a lot of ground.” He said. You wondered aloud if the psychologist gets paid more for covering a lot of ground. He smiled.

I couldn’t tell if covering a lot of ground quickly was a good thing or a bad thing. Oh well, I guess it’s really more important to think of success in terms for how you feel at the end of the session. I think we both felt good.

The epiphany for me today was centered around my thoughts on your desire to smoke. On the car ride to Hailfax, we talked about this and I said that I figured that the reason you told me about your smoking was because you, subconsciously, wanted my help in trying to shake it. You had tried before on your own, but it is hard enough to quit. To quit without support must be very hard. I told you that I would be strong for you if you needed me to be strong.

I even took the two packs of cigarettes out of the garbage can where I put them last week. I wrapped up the open pack in 29 layers of duct tape. I said that I didn’t want to enable you to smoke but it had to be your decision to quit. So I gave the wrapped package and said that the 29 layers of duct tape would be hard to get through. It will give you lots of time to think whether you really wanted to smoke or not.

I wanted to make starting to smoke as hard, if not, harder then quitting to smoke. 29 layers of duct tape seemed like a good symbolic barrier to smoking to me.

When I shared my approach with the psychologist, he frowned. He said I got it all wrong. He enlightened me. “Don’t make smoking the battle ground. Chris has to want to quit.” He said that when you talk about smoking, it is because you are trying to find a way to cope with your feelings at the time. So I shouldn’t focus on the smoking … I should focus on the feelings that you have.

My epiphany is that the desire to smoke is a symptom of unpleasant feelings that you need to explore. I am actually relieved with this view. I am not a confrontational person by nature, I was uncomfortable with the idea of physically preventing you from smoking. I like this approach much better.

I would rather explore feelings then run interference.

We talked about the Sunday afternoon and how the children reacted to your dark mood. I realize that I have to recruit help to be with you while I do things with the children. It’s not fair to them to deny them their childhood pleasures. I don’t want them to feel that you are to ‘blame’ for the circumstances they find themselves in.

At the end of the day, I met with your new OT person. She is the third OT you have had since you started at the rehab. You think she is new but she was actually your first OT. She worked with you in the fall at the Halifax Infirmary. She gave you your first chair. Now she is helping to order your, hopefully, last chair.

I like this OT. She was great and I sense that she is very keen on her position. She reviews what she knows about with you and the layout of our home. We trouble shoot problems.

I ask her about a therapy of left neglect. The Lighthouse technique. Your doctor had suggested it to your first OT, but nothing was done, and when the interim OT took over, he wasn’t interested in starting something new. Thankfully, this OT is interested and wants to start this treatment with you. I feel very positive about your ‘new’ old OT.