I had written earlier about my finding that ALS patients don’t care to hang around each other.  That was true for me too, with one exception.

I’m finding that it has to do with pretending. People in wheelchairs catch your attention, make you think, might spark a twinge of pity.  When you are in one, your brain tries to crop the picture.  More importantly, you also pretend that this is how it will stay, nothing is going to get worse.

I sit in my chair at the top of some steps leading down to a beautiful beach on the Atlantic Ocean. I just happened to find a good seat. It is warm and as nice as ever. I pretend that everything is much the same as before. I feel the same as before, unless I try to do something. The problem is, doing something was what I used to be about.

I was jolted out of my pretending by a text message relayed to me from the wife of that exception.

There was an athletic man, just a little older than me. It felt like we were in a similar place. We met because I was trying to decide whether or not to start the new drug Radicava, and he had started a few weeks before me. He and his wife later joined my buddies and I at one of our go karting outings. Being the only other ALS patient that I connected with created a special bond for me, even though we kept our contact to a minimum.  I can’t speak for him, but I think it was mutual.

In mid November, he let me know that he was starting to really struggle. We traded a few comedies about our situations. He was still able to walk.  I had not done that in ages, but unlike him, I could still talk.

As I sat there, the message coming a cross my phone read:
Fwd:
Very sad news here about *****. News no one wants to hear. He is in ICU at Missouri Baptist Hospital. He coded in the ambulance on the way to hospital Friday. Respiratory distress. Cardiac arrest. We had been doctoring all week. I’m afraid his body was done. He fought it and did amazingly well for 4 years since major symptom. Family is in town – our 3 kids and his sisters. Prayers please for all. He is on a ventilator but he was without oxygen to his brain a long time. They did CPR for a long time. He wanted to live. Damn ALS. Our hearts are breaking. But we will be okay. We plan to remove the ventilator late this morning when the kids get here. We are spending time with him, talking to him and playing him music. Taylor Swift! He loves her! Maroon 5. Alannis Morrisette. Justin Timberlake.🙏One friend asked me to pinch his but for her while whispering “Go Chiefs, from a Raiders fan”🤣 Requests? 😀

 

This news, along with new struggles, made pretending a little hard at this time.
Why do I always find myself in public places for sad events?