The other day you asked me “What will I do for work?” My answer was: “You will work at recovery.” That will be a fulltime job. The hours will be long and it is going to be hard work, sometimes monotonous and the pay will suck but the payoff will be worth it in the end. There will be days that you don’t feel like it. Just like there were days that you didn’t feel like running … but you ran anyway.
Your work will become your passion.
Today at work, I had a client visit whom I have known for a number of years. I first met him with his little Corgi dog and now he and his wife have a little Westie. His wife has MS. It was and is a condition that affected both of their lives.
He asked me about you and how things were going. I told him that you were making a recovery but there will be a lot of adjustments for both of us. I told him that the adjustments scared me a little.
“We went through that sort of thing too.” He said. His wife had to accept a lot of things that she didn’t want to accept. All the way through it he would remind her “You don’t have MS … We have MS. We are a unit.” He tells her frequently that they would get through it together. So far they have.
Intuitively, I knew this, but I didn’t acknowledge it fully until I heard his words. He is so right. We are in this together. Your pain is mine and mine is yours. Your strength bridges my weaknesses and my strengths bridge your weaknesses. We are a unit. Some days we are a ‘hurting unit’ and some days we are strong.
We got an email today from Linda in NB whose husband, Marc - a marathoner and father to slightly older children, had a stroke for now apparent reason. His stroke was in April 2008. He is making a remarkable recovery. She has been following your recovery and identifying along the way with the worries and struggles that we have had. She has managed to send us notes of encouragement when it looked like we needed it and her timing has been God sent.
Today she sent an email that I felt you really needed to hear: “It's a shame Chris feels he won't be the same father he was before, because our kids have never expressed any concerns or regrets over this. They just go with the flow. He supports in different ways and they seem to have come through the whole experience, I believe, as more understanding of people with physical challenges. Hope things are going well. Tell Chris to keep up the hard work.”
I believe that Linda is right. Our children will be stronger and more empathetic people, as grownups, having experienced this time in their lives. They will be richer for having such amazing role models in their lives like you and Marc.
It was a great meeting with the local OT person. She is enthusiastic and has a ‘glass half full’ attitude. She is on-board with my thoughts that your conditions is regressive not progressive. Chances are things will get better not worse. We need to plan for safety and for your care but we don’t want to remove the motivation to work at getting better.
She has been an OT for a number of years. I suspect she has good gut feelings about her patients. I think you will like working with her.
We have a four level split house. Together we tour the house and discuss stairs and ramps; beds, toilets and bathtubs. We even look at the kitchen briefly. She takes measurements and asks lots of questions. She thinks that a stair lift or two or three (one of each set of stairs) would be workable although the left neglect is a bit of a worry.
She asks about your insight and judgment ... an area that isn’t easily assessed by a stranger. I tell her that by nature you are a cautious guy. ‘Safety first’ is your rule and I don’t believe that the stroke has changed that. If anything you are a little more mindful of injury. But the left neglect isn’t covered by your rule. If you don’t knowledge your left how can you apply safety rules to it. This will have to be a learned skill. In the meantime, we have to protect you from injury.
She is going to come back next week with a guy. A home care appliance guy from Lawton’s Drug store. He is going to bring examples of things that we can install to make life a little easier and simpler for you.
You did stairs today! I couldn’t believe my ears when you told me. I know what stairs you did. In the PT room there is a staircase that goes up 3-4 steps. It has handrails on either side. A few weeks ago I watched an older lady who was an amputee walk up and down the steps. As you describe the effort you put into it, I could imagine you climbing these stairs. You felt it went well. But your PT is a little worried about your leg buckling. She feels that if the leg brace was adjusted, then you might be able to do steps a little safer. She is going to get the OT to look at the brace.
“My contribution to the family will be to do stairs.” You said proudly. “First stairs … then a I’ll get on a bike!” I express some concern about a bicycle. I picture you out on the road with no left field vision. A huge blind spot – a recipe for disaster. You are picturing the stationary bicycle to start. “I am pissed off – I want to get some independence.” You said.
I remind you what the local OT said. “When Chris gets home – the first weeks will be difficult.” There will be challenges, upsets and reminders of what you can’t do anymore. The first weeks at home will be a reality check for both of us.
You agree with this prediction. “I’m in purgatory right now but I will work my way out of here any way I can.” You reply.
When you get home, you said you want to buy me a special gift. Jewelry or something like that. I don’t especially value jewelry but the idea is important to you. I am more interested in getting you home and getting our family back to it’s ‘new normal’. Presents can wait. To pacify you, I make a deal. “When you get home and have an entirely great week, then you can get me a present.”
Whatever we get or do it will be together … because we are a unit.