My Way

I wanted to put up my Christmas tree yesterday. I had a plan for the day and that plan included putting up the tree sometime later in the afternoon. I got up late, having been out dancing the night before, and posted a note on Facebook hoping my friends would see it, then descend in a hoard to help me. My friend Dion came over in the morning and helped me with some things that needed doing. Dion has been tremendously good to me in the last year, right from the moment of diagnosis onward. Then he asked if he should put up the outside lights for me. I said "No. I'm sure Ricky will do it". I was wrong, about the descent of a hoard and about Ricky putting up the outside lights.

One of the most challenging things about having a disease like ALS is dependency. I have always been a fiercely independent and capable man. Finding myself dependent, a burden on others, is a hard change. Finding that I cannot do things on my schedule, on my plan, that I have to wait and depend on the schedules of others and on their plans, this is emotionally and psychologically the most challenging part of this dependency.

I am not alone in this; other ALS patients face it too. These feelings of frustration and limitation are not mine alone. Here are a couple of recent comments from other PALS struggling with the loss of their ability. "Today is another example of how I feel I am becoming a burden to my family. My wife would like to travel this year to visit family at their home and NOT be the Host again as this adds to the work she has already taken on. I completely understand this. ...No bathing facilities on the main level will make it even less enjoyable. The trip would be 5 hours by car OR 4 hours by train, then 1.5 hours by car. I hate that people don't' seem to be enjoying the season because I am unable to do a lot of what we have done traditionally."

Then there is this recent posting from another PALS. "Thanksgiving may have come and gone but I'm not done. We have guest(s) for (an) extended period of time. The remodeled bathroom is being tested thoroughly. The new bathtub had a slight a plumbing leak. It cost us a ceiling tile downstairs to find out. I am totally stuck in the wheelchair and cannot even go down to look at it. I called my best friend, (name removed). He came over this Sunday and fixed it in a jiffy. He is in the middle of building his own house and has many other irons in the fire. I am so thankful that he came over and took a look. Do you have any idea what it's like to sit in this wheelchair completely powerless and then to come and have somebody help you?"

If you wonder why I want things done "my way" or on "my schedule", think about your plans for today. What of those plans would change if you had to wait on someone else's schedule or do it someone else's way? What would change for you if you couldn't walk, couldn't talk, couldn't reach things or grab things? What would you do if you lost your freedom and independence? Who will help you feel like you are worth it? Who will help you put up your Christmas tree? Are you sure?

The tree is standing, plain and bereft of adornment, in the living room. The lights are in a tangle on the floor. The outside lights are in a box beside them. I will get this done somehow, my way.