Once every three months, I go to the ALS clinic at St. Louis University hospital. It consists of a half day of meetings with physical therapy, respiratory therapy, etc. They do a small amount of physical testing, but mostly it entails recommendations on the different aspects of living with the disease.
I remember my first visit very well. I suppose that’s only natural since, at a little over a year and a half, it really was not that long ago. I find that my perception of time has gotten a little funky since then, being that two years ago, I lived a much different life and, I suppose because of that, it feels like a lifetime ago, a different era. Anyway, there is an elevator, but I trotted up the half story of steps to the waiting reception desk. I couldn’t ‘fly’ up the steps like I was used to, but I trotted up just fine. Hey I’m still an athlete you know! Waiting in the room, I saw people getting off the elevator in full on electric wheelchairs. I was a bit horrified by the sight, and the thought that I might be there some mystical day, way off in future land. I thought to myself ‘wow, those poor people stuck in those electric wheelchairs must be miserable, life is essentially over for them’. I felt fairly certain of that. ‘Try to put such terrible thoughts out of your mind’ I told myself. Deep down, it didn’t seem like I belonged there. The small lunchroom afterwards was a very quiet place. I could detect that people with ALS don’t really want to talk to other people with ALS. That was even politely suggested to me by more than one patient in roundabout ways while refusing any significant or future contacts. Before I could leave that silent lunchroom, on that first visit, I felt a desperate need to try to gain some knowledge about what this new life is going to be like. I struck up a conversation with a nice man with a walker. He was what is known as a very ‘slow progressor’ which is fairly rare. He and his wife had been coming to the clinic for about eight years. They were kind, answered some questions, gave some advice that I was not capable of processing, and that was that.
Now, here I am getting off that same elevator while steering my electric wheelchair with a little joystick, just a short time later. Perhaps it’s a long time later. It all depends on your opinions of time. For some reason, I am now the only person in a wheelchair. Everyone else I see is just trotting up the stairs (though not as awesomely as I did, of course). It seemed like they didn’t truly belong there. The tiny lunchroom afterwards was just as silent as it was a year and a half ago. There sat a husband and wife, obviously feeling uneasy and awkward. I could not even tell which one of them was the patient. Finally, in a desperate need to try to gain some knowledge about what his new life is going to be like, the man asked me how long I had been in my electric wheelchair. He had been diagnosed just one month ago and this was his first visit. After answering that simple question, I thought about my first time in the silent lunchroom. “On my first visit, I saw people getting off the elevator in full on electric wheelchairs and was a bit horrified” I said to them. I told them of how I thought that those poor people stuck in those electric wheelchairs must be miserable, life must essentially be over for them. I explained that I now feel that I had been wrong in my assessment on that first visit. “You just keep working at inventing new ways to do the things that you love and trying to develop new interests and ways to do them. You are still you and that doesn’t’ change” I told them. They were appreciative but I’m not sure they could process it.
I feel the need to, in full disclosure, remind myself and others that my Pollyanna ‘I’ve got all this figured out’ writing is done during the times when I am feeling like I just figured something out. Many times I feel lost. No one has life completely figured out. The good news is, trying to figure it out can be rather interesting in it’s own way. Don’t get so busy just doing that you forget the need for a little introspection.
David, I stumbled across your blog awhile back during my search to try to understand what my own family was facing after my husband’s diagnosis, and I have been reading along ever since. This recent post mirrors the concept my husband’s doctor expressed recently. He said, and I’m paraphrasing here, that we are not very good at predicting our future happiness, and our definition of “quality of life” is a moving target that is constantly evolving as we adapt to the current situation. He advised remaining open to experiencing happiness under these changing circumstances. I wondered if he was drawing on his experience with patients or if it was a requisite offer of reassurance. But this post along with others like “Another Word On Adapting,” help support my belief that it is not “Pollyanna,” but is indeed Possible.
Thanks for sharing your experiences and musings.