We have a really good family doctor. He's smart and informed and not too condescending by doctor standards. Because he has such a good reputation, he's popular, meaning he sees a lot of patients, but in rural areas, that's to be expected. He knows a lot about stroke, but even as good as he is, he's clueless about spasticity. He refers to it as stiffness, as in, "How's that muscle stiffness on your left side? Getting any worse?"
Me: "It's not really muscle stiffness, it's spasticity."
Doctor, ignoring my clarification: "Still exercising?"
Me: "Yep, I swim every other day, and the days I don't, I stretch and work out with light weights."
Doctor: "Good, good. Does that help with the stiffness?"
Me: "Not really. In fact, in the short term it makes it worse."
Doctor: "Hmmm. That's...odd," forgetting that I've explained this phenomenon to him several times before.
Me: "Yes it is."
Doctor: "You saw Dr. ______, the neurologist I referred you to, didn't you?"
Me: "Yes, I did."
Doctor: "Did he have any suggestions to help with the stiffness?"
Me: "Not really."
Doctor: "Well, that's unfortunate. Well, if it gets too bad, let me know and I can prescribe a muscle relaxant that might help some," forgetting that we've talked about this before and I've told him I'm not interested in taking a muscle relaxant.
The neurologist he referred me to last year also seemed like a nice guy, but was just as clueless about spasticity. To check my condition, he watched me walk around his office, then had me sit on the examination table while he tugged on my left arm and leg. Now I have spasticity all up and down my left side, but it's not uniform, and it hardly affects my bicep at all, so it doesn't cause my left arm to fold itself against my chest as with so many other survivors. In fact, what I experience is just the opposite. So when he grasped my left wrist and pulled it toward him, I had to pull back in order to keep from punching him in the solar plexus. "Yes, yes," he said, "I can feel it in your arm." Similarly with my leg, I had to try to keep it bent so that my foot didn't snap up and knock his teeth out. "Yes, you certainly have a lot of spasticity in your left arm and leg," was his conclusion.
I didn't explain to him that he hadn't actually felt my spasticity where it actually was and how it actually affected me, because, really, why bother. There's no treatment for it, anyway. He did offer to write me a prescription for Baclofen and another for pain medication, but not wanting to spend the rest of my days stoned, I declined.
Mainly based on Dean's blog, I'm aware that there is a substantial amount of stroke research going on. But it seems so haphazard, so unfocused and directionless. It seems much of it covers ground already covered, making no attempt to build on work already done. There seems to be no plan, and no entity that is providing any overarching perspective so that a coherent strategy can be developed to solve the myriad unknowns that stand in the way of stroke recovery. Instead, we have isolated researchers engaging in disconnected research projects, while the stroke organizations take the easy way out and focus on prevention and treatment processes so they can claim nonexistent successes. I'm sure this approach makes for more fun conventions than would reporting on progress toward solving the complex barriers to stroke recovery.
I sincerely believe that a group of stroke survivors could provide doctors and researchers some of the basic information about stroke that could help inform their research efforts. But this is never going to happen. Doctors and researchers actually listening to advice from people who have had strokes? Why the thought of such a thing is inconceivable. What might happen after that? Medical professionals paid for results instead of as an entitlement for having a medical degree? Chaos, I tell you, the upending of the natural order.
So the state of stroke recovery seems hopeless, with the only useful information being provided by Dr. Google and the many smart and informed stroke bloggers. I admire you all, but my time as one of you has come to an end. My blog was about someone who had a stroke who was working. But at some point in the last four years I became someone who was working who had a stroke - a subtle but significant difference. There are still contributions I want to make and goals I want to reach in the time I have left. One of my goals is to get back to the blog I had started prior to my stroke. It's called The Liberal Capitalist, so drop by there and say hello sometime. Be well, do good work, etc., etc.
Sunday, August 30, 2015
Friday, August 21, 2015
Fear of the Dark
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.
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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