Lord knows that, if I wanted to, I could write countless blogs about the perils of ALS and nothing else. Being and staying positive during this journey is a struggle, but lately my biggest struggle has been the fact that each day is basically the same as the day before. The monotony is driving me up the wall. It reminds me of the movie Groundhog Day with Bill Murray. In that movie, he wakes up and relives Groundhog Day over and over again.
In summary, here is my day. My wife, Susan, gets me up at 7 am to go to the bathroom and then I lay back in bed for a tube feeding. Then, the family leaves for the day and I lay in bed until my nurse’s aid arrives. She helps me out of bed and then shaves my face, brushes my teeth, showers me, and gets me dressed for the day. Then, I go sit in my recliner. My aid leaves and I watch television until my helper arrives around noon. Then it’s tube feeding number two. I either sit in my chair or lay in bed depending on my energy or comfort level. If it is nice, I can sit outside in my electric chair for a while, which is awesome. My help leaves around 4 pm or 5 pm, and then the kids get home from school and they have a sitter to help them until Susan gets home from work, which isn’t until around 7 pm. Then it’s tube feeding number three. By 8:30 pm, I’m given my evening medications and am in bed by around 9 pm. I watch a little television and fall asleep. Every day is almost exactly the same, over and over and over again.
Now I know why I loved my sales career: because every day was different. I never dealt with the monotony of a desk job or as a factory worker, etc. And every morning when I wake up, I am reminded of what my dear friend Trickett said, which is that today is the strongest I will ever be for the rest of my life (from a physical perspective). As you know, ALS does not affect the brain. But what I’m finding out is that as bad as the physical challenges are, for me, the mental challenge seems to be worse.
What is my purpose? What is my value? I feel like such a burden. Maybe life will be easier for my loved ones once I’m gone. These are just some of the ugly thoughts that go on in my head. Usually, I get through them, but I have way too much time to think myself into a bad funk. So whatever others or I can do to break up my own personal Groundhog Day, the better. Thank goodness summer has arrived. Just getting out of the house to smell the fresh air is enough to break up the monotony of my otherwise similar day.