Sunday, January 24, 2010

Thursday January 21 – The Crystal Ball

It was a Marsha morning. I didn’t sleep well last night, I was excited about your description of walking. Going to Halifax with Marsha meant that I would get to the NSRC early and I would be there for your OT at 9 am and PT at 10 am.

When I got to your room it was 6:45am. Normally you would be up, had your coffee and been to work and back and if it’s a snow day, you would have shoveled the church and us out. Today you are sleeping. Well resting actually, I didn’t have to wake you. You smiled and I kissed you good morning. The roommates were still sleeping and snoring. I snuggle into bed with you and we whisper to each other about life and love.

It may have only lasted of 10 to 15 minutes. As the sun rose and the room lit up, people started to get more conscious and moving. Our quiet moment was broken. But we will remember it forever.

At breakfast we talk about why you smoked. You explained to me that you didn’t feel very good about yourself. You compared yourself to me. You didn’t feel like you measured up. You smoked and concealed it because then you “could be good at being bad”. When you gave up gambling the smoking became worse.

We talked and talked. We debrided the wound left thoroughly and we are starting fresh. Clean slate. A re-do for you and for me and for our family.

This is a new beginning.

We talked about substitutes for the addiction. Juanita had suggested to me that you might reach for food. Weight issues will make your health worse and your mobility more difficult. You point out that the heart healthy food the NSRC has you on is very good. You think that you will be all right with food. Of course there is also the advantage of not seeing the left side of your plate. You consistently eat exactly one half of the food on your plate. The “half plate diet” may be an asset to your weight management.

I asked you if you would see a psychologist about your addictive nature. We need to find ways to deal with this before it finds another way to affect you. You agreed.

The nurse came to get blood and give morning medications and do your vital signs. You tell her about your smoking. She sees a lot of smokers in her in of work. Ex-smoker, diehard smokers and struggling-to-quit smokers. It’s a story that I expect she has heard before.

As we talk with the nurse, it turns out that she is from Haiti, Suddenly, our worries evaporate when we think of the sorrow that she must have and yet here she is looking after people who smoked and stroked.

You have a bone scan scheduled for today. After a team meeting, Dr Askari wants to see if the shoulder- hand pain has something to do with poor bone density. She is also arranging to have your vision reassessed. The porter who took you over to the VG is a smoker. He is not ready to quit. His father smoked all his life and died when he was in his 90’s. He is a diehard smoker whose job is to look after other smokers who stroked.

Your OT popped in and said that your OT must be rescheduled for 2pm. The trip to the VG meant you missed your PT today. I didn’t get to see you do your routine on the parallel bars. Just after you left for the VG with the smoking porter, your PT popped into your room.

She wanted to give me a peek into her crystal ball. It isn’t an official prognosis because it’s only based on three days of PT, but she is an experienced PT and can probably predict outcomes fairly well.

She described how you walked between the parallel bars yesterday. You needed help to move your left leg forward and to shift weight from right leg to the braced left leg. You also stood for minute and 26 seconds with a practice brace strapped on.

“My first impression is that he will get to the point where he can walk with assistance ... He wants more. We didn’t know whether walking would be a possibility at all. I’m sure that it is … my gut says it’s certainly worth a try to see if it develops.” She says. “My crystal ball shows someone in a wheel chair getting into and out of the wheel chair himself safely and walking when there is someone else around.” She also mentioned that you will need a leg brace for walking.

“The first couple of weeks are crucial to understanding how far you can go. The predictions will be better then.” She isn’t going to share this gut feeling with you. She knows you aren’t ready of this yet. They told you that they are looking at walking and that so far they are very pleased.

I felt devastated after my talk with the PT. Her realistic approach to your mobility has dented my armor. I am not ready for realistic acceptance. I have been feeding off hope for so long, I don’t want to suddenly change the fuel to my energy from hope to acceptance of realism.

The words ‘wheelchair’ and ‘leg brace’ certainly don’t mean running. She said that you ‘wanted more’. She couldn’t even say the word ‘running’ then. She is trying to be very realistic. That is her job. That is my question answered.

I don’t like the answer. I don’t want to give up and accept but I don’t want to live in denial either.

Yesterday, Tara and I went shopping after school to find a new backpack. After a lot of negotiation, we finally agreed on a good backpack. I found the experience stressful. I don’t like to shop. As we walked away from the store Tara slipped her hand into mine and said “I love shopping with you.” I forced a smile. I cringe at the thought of a mother and daughter have a bond over shopping.

Then Tara said something that did make me smile for a moment. “Maybe when Daddy is better, we can go for some long hikes.” I loved this thought until the PT’s words drifted by my mind again. Wheelchair and leg brace. Hiking sounded as far away as running.

This is not my life plan. You had hopes and dreams and so did I. Mine included you. I wanted to travel and work in other countries. I wanted to give our children a global experience. I couldn’t do this on my own. I need you.

I’m not ready for this news and I’m not going to accept it. I will only accept reality when all the stones have been turned over and explored. That is when I will accept acceptance. But for now Denial and Hope is where I choose to live. I want you to live there with me. I have to remember my own advice to you when you are feeling overwhelmed. This is just a wave. A wave of grief … we will find our way past it.

To clear my head, while you were at the VG getting the bone scan injection, I went for a walk. I picked up some more Coffeemate at the grocery store. As I walk back from the grocery store, I passed the Summer street entrance of the Halifax Infirmary QE2. There, lining the sidewalk, are smokers. As I glance up at the windows, that I used to look out of for days on end, I wanted to vomit. I wanted to scream at them. “Are you crazy. Look at my pain. This is the pain you are putting your spouses, your children, your parents and anyone who loves you through. I want you to see my pain and feel my hurt – then you’d might think twice about your next drag on a cigarette." I didn't. I know it is a waste of my energy and resources. Just thinking about it was somewhat therapeutic to me. But it wasn’t enough.

Back at the NSRC, we went to a game session. It was a word game called the ‘Brain game’. There weren’t many interested. But you and a few others participated. Half the questions stumped me. Sitting as a spectator, I was impressed. One wouldn’t realize that the players all had brain damage.

You missed your OT appointment because you had to go back to the VG for the second part of your bone scan. No PT and no OT today. It’s been a bit disappointing.

“I am 45 and a cripple.” It’s too early to settle for this. We have to look forward. I was feeling smothered by the wheelchair and leg brace words. You asked if I “would be content with you as a cripple.” I scold you. “You are half of my whole - it doesn’t matter that you are crippled. It doesn’t make you less of a person to me or to the children.” I cry. You cry. We have to be strong for each other.

Later in the day, the PT and her student come back to se you. They say they need to ask you a few questions. They seem like silly questions. “What is type of building is this?” “What month is?” You answer these easily. “Do you usually have pain?” “No.” You said. “Is your general health - excellent, very good, good, fair, poor.” Your narrowed it down to ‘good’ or ‘fair’. She pressed harder to get you to commit to one answer. You choose ‘fair’ because of the cholesterol problem. You would have said ‘excellent’ before the stroke.

I wondered what the purpose to the exercise was. Was she trying to gauge how to approach you with the crystal ball news? I was stumped.

Marsha came to pick me up just as the PT was with you. We took Marsha to Timmy’s for a coffee. I persuaded you to get a 2X2 and add the whitener to it. I stayed in the line up while the two of you got a table. Just as I was getting to the front of the line. A woman who I’d seen earlier was walking cautiously with a white cane. She was clearly blind and disoriented. I gave up my spot in line to help her get back to where she wanted to go. Her demeanor was very positive. She laughed off the fact that she wasn’t sure where she was. She said that she really needed a coffee to beat back the boredom of her room upstairs. She was sweet, trusting and upbeat. A little of it rubbed off on me.

My self-pity train was being ridden hard today. The blind lady made the trip a little shorter.

On the ride back to Truro, Marsha talked me down to the ground. “You’ve been through this sort of thing before. Things will change.” She is right of course. Things do change – they change all the time. I just have to get through this wave of sadness.

Tonight I called Steve. I had to share my worries with someone who could help prop you up without worrying your parents. He was going to give you a call. As I hang up the phone, I noticed a picture flash by on the computer screen. It was a picture of you and Quinn. I took it last summer when we were in Newfoundland.

You and Quinn are racing across a field towards the camera. Quinn’s arms are in the air and your legs were caught in mid stride. Your left muscular leg was pushing out in front. You were looking at each other with joy on your faces. You were both feeling the joy of running in that moment.

My heart is breaking. I want you to feel whole again. I want you to feel that joy again.

This day has given me a headache. Probably stress, I didn’t get much sleep last night due to excitement of you possibly walking so early in your rehab. Then I get the crystal ball reading and now I am drained.

Since the gambling chapter in our lives, I have worried about my tendency to deny the obvious. I don’t want to go down the path of being in denial and not accepting the obvious like I did then. You have just started your marathon. To accept that you won’t finish it at the start line is not the mentality of a marathon runner. It’s too early to accept. If it’s too early to ‘accept’ and we are not in ‘denial’ then we must be still in ‘hope’. I choose to stay in hope until all your possible finish lines are crossed.

1 comment:

  1. Our youngest son spent his first 3 months at Sick kids Hospital because he was born with Stickler syndrome. A few days after he was born I received a call from a friend who lives in Truro. Her daughter has cerebral palsy. She told me to focus on Hudson not on his condition and to trust that I would know him better than any of the doctors, nurses and other medical staff. That advise was true, when the medical staff continued to say he still needed a breathing tube, Hugh disagreed and told them to remove it. They initially said they would take it out for just 2 hours, it was never reinserted! Keep the Faith, Do not look too far ahead just to the next "mile marker".
    Thank you for your inspiration to the rest of us.
    Melanie aka H.H.