I’m guessing we will never really adjust to Mike’s illness. There isn’t enough time to adjust. When we almost get used to one change, other changes happen. Day to day, the changes are pretty subtle, but over time, they become quite significant. For instance, Mike was running six minute miles in April and now he is just thankful he can walk…even if it’s at a snail’s pace.
Just over a month ago, Mike got a brace for his right hand. It’s a brace he wears at night to prevent his hand from curling up into a tight fist while he sleeps. Mike calls the brace the ‘claw’. While I put the claw on Mike before bed I usually have a little pep talk with his fingers. As I struggle to lay them out straight, I tell them that even though they are very stubborn, we still love them. I kiss them good night so they know they are loved and perhaps a kiss will make them all better…it always works with my granddaughter, Leah.
Today we were getting ready for our ride on the dike, but because it was so cold and because it was later in the afternoon, we decided just to go down the road to Merkley Park. I bundled up and then helped Mike put his gloves on…not an easy task. It took a while to get each finger in the right hole and hold them straight enough to pull each one through. I talked to the fingers one at a time as I tried to push each of them in their proper places. “You are a little rebellious; you just need to straighten out a little.” I said to one. “Come on, you can do it.” I said to another. I really had to be firm with the middle finger. “Give me that finger.” I said to Mike. He said, “I’m not giving you the finger.” I think Mike was enjoying the entertainment.
Mike’s ability to cope with the changes continues to amaze me every day. He never complains; he rarely gets frustrated; he just rolls with the punches. I think the changes have been easier for him to take than the rest of us.
Our daughter Erin messaged me last night. She said she was really missing her dad. She said she was worried about him and hates being away from him. This morning she emailed me and said “I am feeling better now. I had a good cry last night... and this morning... and likely I'll be getting one in at lunch as well. I wish I could hold myself together. I read an article on the bus this morning about assisted suicide and an ALS woman trying to make it legal and I broke down in tears. Luckily there was a homeless man sitting beside me who gave me a shoulder to cry on…well I guess not literally but he did offer me some of his bottles.”
Mike and I are going out to UBC tomorrow to see Erin. She can’t wait to see her dad and I know when she does, she will be encouraged. He has a way of making all of us feel better. I think while we are out, I will shop for some mitts for Mike.