Your OT session is an hour earlier today. I get you dressed and we rush down stairs. To the OT floor. The OT is working on transfers. From your chair to the bed or another surface. You get positioned so that you transfer to a new sit on your right. Transferring to your right side (strong side) is easier. The OT helps you by steadying your left leg and bracing your knee from bending when you shift your weight forward. You practiced this many times from chair to bed and from bed to chair.
The OT’s want you to learn to transfer to your right and back the other way (to your left) so that you can transfer both ways. There will be situations, like a car or in a bathroom where there is minimal space to maneuver. These are times that you will have to transfer towards your weak side. The OT said that you would get to practice transfers to a car that they have set up in the OT department. You will get to do this when you get better at this.
This session hit you hard. You are envisioning needing someone to help you do all the basic things like going to the bathroom. It is hard to imagine much independence at this stage. “This is your reality now” I say “but it may not always be the case.” You will learn a new way to independence. We will have to redefine what ‘full’ and ‘normal’ life will look like. All we can do is accept the reality of the moment. We can still continue to look forward to the future and what it might bring – but to be happy now, we have to accept the moment as it is.
You feel that you deserved the stroke. This is Karma. Karma for what? I ask. “For being a bad person.” You say. You are not a bad person, you did not deserve this stroke this was an event that you didn’t deserve. No one deserves a stroke. This is a negative attitude. You have to stop thinking that way and think about what gifts the stroke has given you not what it has taken away.
You talk about choices. If you had a choice – you wouldn’t be here. This thought is too much to bear for me. “You can not be a quitter” I tell you. We are counting on you. I am counting on you and the children are counting on you. I need you and they need their father. Bad things happen to good people and you deserve to have a life and find happiness.
You try to cut me loose. “You didn’t sign up for this.” You said. “You don’t have to stay with me.” All I could do was shake my head and say that I have been thinking about this reality a lot longer then you have, and I’m still here. I’m not going anywhere. I will be by your side … your left side.
You ask about the journal. You maintain that it should be a book. I have to agree with the new developments, we need a project that will keep us thinking forward and growing, not thinking backward and regressing.
Dave and Deanna, friends from the church, sent you an envelope full of inspirational quotes. You read through them all and put aside your favorites. Lance Armstrong said “Pain is temporary but quitting lasts forever.” I can’t think of any need in childhood as strong as the need for a father’s protection. You can still do that“ It doesn’t matter how slowly you go as long as you do not stop.” Confucius. Any man can be a father, but it takes a special man to be a Dad. The perfect run the wind at your back, the sun in front of you and your friends by your side.
This was a brilliant idea and very timely. Thoughts like this are exactly what you need now. It’s exactly what I needed too. Thoughts like these, which come from people who have had adversity in their life and faced it and thrived despite it, feed our souls with positive energy.
Your tone changes from making the ultimate decision to finding ways to cope. “I can make things that will make it easier to do transfers and life easier. I haven’t walked yet but I plan on walking, even if it’s an awkward crazy walk. I will walk around like the King of friggin Kensington going out and remembering all my friends who helped me through this time. I am going to be a helpful and good guy.”
You have had clonus for some time. This is when your left leg would tremor. It doesn’t happen all the time. Usually when you are sitting. The PT explains what causes the clonus and more importantly, what we can do to help calm it. By pushing your left heel down to the floor and stretch the back of your left calf, the clonus calms and disappears.
You walk with the PT guiding your left leg. The slow dance between you works well with a brace on your left foot. The brace stabilizes your left ankle. If the ankle is prevented from bending then the knee tends to stay straight and not bend. The brace immobilizes your ankle in a similar way to how a downhill ski boot would work. A rhythm takes over as you walk with her between the parallel bar. “Straighten and step and straighten and lean to the right and straighten and step …” The choreography of your ‘walking dance’ looks beautiful to me mostly because it represents potential.
You ask if the brace is something that you will need for running. This moved the discussion to the PT’s crystal ball. I grit my teeth as she tells you what she sees her crystal ball. I’m not sure that you are ready for this information yet. You are still spinning emotionally from the OT session earlier this morning.
“I don’t see someone at this level get to running.” She says. This is hard for you to accept. “We look at other goals. Goals like walking some.” She tries to be honest with you. She doesn’t feel that protecting you from the truth is fair to you. She feels that her role is to respect that you have to deal with the losses in your life. “So you can mourn the loss. You can still look back and remember that you accomplished great things.”
She nailed it when she said, “There is a balance between hope and dealing what you have to deal with.” This will be an art that we have to master.
You describe to her about the impaired mobility class of the marathon. An athlete must qualify of the class. Once admitted into the class the runners have more time to complete the marathon. You would get six hours if you don’t need a leg brace and eight hours if you do need a leg brace. “Oh well, OK if that’s the circumstance then go for it!” she said. “Go for it.” She said.
“I can assist you towards goals that are realistic goals, one handed activities, getting in and out of the wheel chair. Dealing with the wheel chair right now. We don’t know how far the walking is going to come.” “ Do you think I will be waling?” “ I think you will be walking with assistance. I can hope for more.”
The PT moves you to the Kinetron. This is a sort of a stair master that you can sit in. The feet rest on two pedals. As you push down with one leg, you push up with the other. You alternate back and forth with the movement. I don’t understand how you can do this. Since the brace is still on, I imagine that most of the movement is coming from your upper leg muscles. The gluteal muscles Perhaps these are the first muscles to wake up. They allow you to extend your leg. Seeing you do this sparks a flicker of hope again in my mind.
As you go through the motions of the physio session, you talk about your purpose. “I owe it to you to make this work and make our lives good. That’s my job. That’s why I was kept here. I can cry all I want of now but there’s going to be a time when it’s going to stop.” I whole-heartily agree. If you can see a purpose or a vision then everything that your need inside of your will reach for that vision.
After the PT we went to Timmy’s to get a large black coffee to take to your room. On the way back, We talk about choices. Choices that we can make each day. “When you get up in the morning, you have a choice. You can choose to wallow in self-pity and have a bad day or you can choose to have the best day that you can have. It is a conscious choice. A choice that you can make each day. It’s a choice that I make each day. If you choose the ‘good day’ you will be happier.
Good goals and dreams will come true. There are so many things I want to do in my life that weren’t, ultimately, that important. I ran and I was a good runner. I might not be able to run so I’m not a runner. I don’t want another addiction that appeases me or makes me feel like I’m a whole person. There are tons of little tiny things that will all add up to making me a person … maybe that’s what I have to do.” You add “This chapter is six more weeks. The more I can take out of here, the better. Then the next chapter starts and my God I’ll do it ... being part of the family and loved by the family and being able to love my family ... that will be a blast.”
I think that at one point throughout the day you went through every stage of grief. Anger at yourself, Denial of the worst possibilities, Bargaining by wanting to be a good person if you can walk. Depression and a sense of wanting to end your nightmare. And acceptance so that you can be home with your family. The grief isn’t finished. It just started. You have explored all the flavours of grief today. It’s as if you are taste testing each part to see which one you like the most.
I hope you will settle on acceptance of the moment and yet keep the dream of the future.