Sharing Personal Experiences
about Disability and Homecare

This story is an excerpt from the book "Ability Lane - Disability History, Culture, Care and Experience" by Tom Weiss, and is reprinted with his permission:

His nickname was, “Cheech,” and he was in an advanced stage of Multiple Sclerosis. I had been providing care and now friendship for him for a while. He had an outrageous sense of humor, and liked Johnny Carson. I stretched his muscles out, fed him, gave him the medications he needed, and much more. That wasn’t the point; we had become friends. We used to go through his morning routine, and then load up into his van, drive down to a little pancake house, and have a Danish and a cup of Joe. The waitresses would love him up, and joke around with him, listening closely to make sure they understood what they heard him say. They would flirt with me, and ensure that we had plenty of that good house coffee to drink.

On Cheech’s birthday, the cooks made him a monstrous Danish, and put a candle on top. The waitresses and the cook came out and sang him, “Happy Birthday,” while he grinned and, “Hee, Hee’d,” with delight. A tear came out of his eye at the presentation of this honor; mine too. Cheech and I went places together, and spent a lot of time talking about events in life. We B.S.’d around, and laughed at nonsense on television. We had a good time. Cheech had stopped driving his van a couple of years beforehand; the hand controls remained. He had crashed the van into someone’s garage on the side of the road after his muscles refused to obey what his brain told them to do. His family, who could no longer bear the burden of watching his decline by the time I entered the picture, put their collective feet down and insisted that he stop driving. Cheech apparently managed an, “Aww, &%#* you,” and then complied.

With a daily, “Heeeeeeeeeeeeeeeerrrrrrreeee’s Johnny!” We got along famously. I had finished recovering from yet another bout of seizures after caring for a former person with M.S., and thought that I finally had them under control; the neurologist I had been seeing said they should be at any rate. There wasn’t a hint of any, “auras,” or other signs of their return during the months that I had been taking care of Cheech.

I am one of those people that ignore the, “don’t get involved,” commandment of healthcare. Screw that; people are Human Beings, and deserved human interaction. Cheech and I had become friends; the fact that I provided healthcare services for him was secondary in my mind. As his friend, I was emotionally involved, and watching his health decline was hard on both of us. He was a hell of a guy, and seeing your friend waste away in front of you, knowing that he was going to die from this wasting, was stressful enough to drive his own family members away. Yet there I was.

One night, having tucked Cheech into bed, making sure that Johnny was being taped, I left Cheech’s house to go to my own home. It was dark out, and I walked down his street, around the corner, and waited for a gap in the traffic so I could walk across Lake City Way. I ran across the busy street, and walked down a few cement steps onto a quiet little side street where there were a few houses and a street light. I thought of how much worse Cheech was getting, and a tremendous rush filled my head.

I started seeing stars, and blackness filled my peripheral vision. “Oh %*#@, not now, not here.” Having had seizures before, I hunkered down towards the ground, started breathing slowly and deliberately, and tried to remain calm. I looked around to see if there was someone nearby. Paranoid, ugly thoughts filled my head as panic stabbed at me. I knew I wanted to be as close to the ground as possible, and off of the asphalt road, I tried to move towards the dirt on the side of the road—I didn’t make it.

The next thing I knew I was in Harborview Hospital. I had apparently been there for three days, in the throes of non-stop seizures that took intravenous Phenobarbital and other medications to stop. My first thought was, “Oh my God—Cheech.” I tried to get the Nurse to call him, but they had found his number in my wallet, and told me that his family had taken care of him. Thank God. The seizures were not over yet, I continued to have several more over the next many days.

During those next several days, I was visited by the ambulance personnel who picked me up off of that road. They told me that someone had come out of one of those houses, and found me convulsing. They told me that when they arrived in their ambulance, my heart had stopped and they used shock paddles to bring my heart back to a normal rhythm; they told me I was one lucky guy.

The incident spelled the end of my taking care of Cheech. It also introduced me to Dr. Mark Sumi, the Neurologist who I would work with for many years to try to figure out what the heck was going on. CAT scans & medications later; I have a textbook brain—go figure. Seizures under control, I wonder how Dr. Sumi can face the puzzle of neurology and accept that there is, as yet, no final solution to it.