I don't fear too many things, but I do have one big one that I suspect most stroke survivors share: spending the last years of my life in a nursing home. Members of the stroke tribe have had a taste of what that's like in ICU and inpatient rehab. I have vivid, and very unpleasant, memories of wearing a diaper; of being told when to wake up, when to eat, and when to take therapy. I remember the professionalism of most of the inpatient rehab day staff and the very nonprofessional attitude of some of the night shift workers. I remember once being parked in front of the television in the day room and forgotten until I became sick and had to ask a visitor to take me back to my room. I remember calling for a night nurse to take me to the bathroom, then waiting so long that I wet myself before they came for me.
Like most people, though, my stroke was not my first experience with a nursing facility. I had been in nursing homes several times to visit elderly relatives, and in every one of them, there were unfortunate individuals who spent their days in beds or wheelchairs, loudly calling out over and over and over. Their messages varied to some degree, but they were always an appeal for help of one type or another. In one place there was a man, who for some reason known only to himself, desperately needed one more plastic cup. In another, a woman who needed help with the children that only she could see. And several who just needed someone to get them out of the place where they were and back to their homes. The staff of the nursing homes had heard the constant pleas from these individuals for so long that they had become oblivious to them. Some filtering mechanism had kicked in that enabled them to suppress the distractions and to calmly go on carrying out their duties. I thought of these individuals as people who, in a sense, had been buried alive.
I pitied these poor souls whose needs seemed so desperate, but were destined to never be fulfilled. Then, when I had a stroke, I became one of them. My hemorrhagic stroke occurred in the afternoon, and that night I was in the stroke ICU of a university hospital. At some point late that night I was awakened by a cacophony of noise: wheezing, squeaking, banging, clanging. All around me was dark, so that I couldn't see what was causing the noise, but it was overwhelming in its grating volume. Even though I couldn't see anything, I knew that my wife, Polly, would be there with me. So I called out for her to stop the noise, and got angry when she didn't respond. I remember thinking how could anyone be so rude as to make all that racket when I was so tired and sleepy. I called out to Polly in the dark over and over asking that she stop the noise so I could sleep, but she never responded. Later I learned that she actually had, but even her voice couldn't penetrate the darkness.
By the next day the darkness had lifted, and in the days that followed, I realized that the noise I had heard consisted of the sounds of the ICU as interpreted by my injured brain. The muted sounds of carts and beds being pushed in the halls and the gentle whoosh of the pressure cuff wrapped around my feet became the hellish noise of a crazed lunatic band. I also realized that my room wasn't dark at night, only dimmed so the staff could go about their work. I wondered if I had really called out to Polly, or if that, too, had taken place only in my fevered dreams. I was surprised when Polly told me that she had heard me call out to her to stop the noise, but not being able to hear anything herself, and after my pleas to her turned into demands, she left the room and found a quiet place where she could cry in peace over the day's events. The staff had ignored me.
It's this darkness that I'm afraid of. Not the darkness of night, but the darkness of a mind that's shutting down and has trapped a still living person inside. A person that can only call out for help in the darkness. My darkness lifted that time, but what about when the time comes when it doesn't. What about when I'm the one buried alive and there is no one that can save me. That's the darkness I fear, and because I've had a stroke, chances are that's the way I'll end up. How can you live with that knowledge? You just do.
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