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This is going to get long. Some of you know some of it already. I'm going to break it into chunks with cut tags. If you're on my main journal page, they should let you expand and collapse the various sections. If you prefer to just skim through the whole thing, you can click on the words "Life Update" just above and the cut tags will magically turn into a single wall of text.
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Content warning: Medical woes, end of life
Sections:
[1] Background: Overview of medical history for the first 30 years or so of my life. I like to provide context. But feel free to skip ahead.
[2] Past: The last 5 years or so.
[3] Present: The last year up to where things are now.
[4] Future: Two possibilities going forward.
[1] I was born with an oversized immune system. It's great at keeping me from getting colds and flu and suchlike. But it gets bored and goes looking for target practice. I'm basically allergic to myself, and I've got some autoimmune conditions. I've also always had trouble sleeping. Some of my earliest memories involve learning to fake being asleep so Mom would stop scolding me for lying awake in bed after lights out, asking my dad (a pediatrician) why my throat was always so sore (he and other doctors would examine it, see it was bright red, have no idea why, and never be able to do much to help), dealing with unexplained stomach cramps and woozy spells that came and went without warning, and so on.
Don't get me wrong; I had a pretty happy childhood between all that. I was lucky with my family. But there were definite early signs that things were wrong. I was around 10 when Dad took me to a medical training program. I sat in an exam room with my parents for hours while batches of med students came in to examine me, ask me questions, stare at my fingernails, and confer with their teachers before moving down the hall to the next room and making room for the next batch to look me over. It was a good training exercise for them and a chance to get some fresh perspective on my case. I was happy to do it. But we didn't come away with any new answers.
It turns out they were right to look at my fingernails, though. I did indeed develop a thyroid disorder a couple of years later, and striated fingernails (which I did not have at 10 but have had since I was 12) are a hallmark of that. I developed diabetes soon after that. Coping with those wasn't too bad. I had excellent care and my grandfather was the best role model I could have asked for. But, still. Clear signs my immune system was trying to kill me, and it was getting more serious about it.
As you may know, I also started going bald in grade school. I was sensitive about it. (In part because my mother made a fuss about finding ways to keep it hidden because she thought I'd be sensitive about it, which taught me that I should be more concerned about it.) My sisters bought me my first propeller hat, and told me to take the opportunity to start a hat collection. Take a disadvantage and turn it into a fun way to express myself. I didn't wear that hat very often, but I still took the lesson to heart, and the propeller hat has been my personal symbol ever since. Hence all my hat-related usernames and avatars.
In high school, things got worse again. I started getting more and more physically exhausted and having unexplained pains all over my body. Most doctors didn't know what to do with me. One diagnosed me with fibromyalgia. He himself had come up with the protocol to formally diagnose it, and I was 18/18 on his test. Unfortunately, he didn't actually know how to help me with it. He promised that if I followed his treatment regimen I'd be cured within 3 months. I did, but I wasn't. He felt pressured because Dad was a close colleague who often came to appointments with me. We were both frustrated and disheartened by my lack of progress. He snapped. He told me that I was lying. That if I'd been following his regimen I'd be better, since I wasn't better it must be my fault, he couldn't work with a patient who lied to him, and I needed to leave and not come back. (Years later, he apologized for that.) Other doctors were skeptical that I was reporting widespread pain with no reason they could find. One convinced my parents to give me a placebo. Once Dad found a specialist in Boston. We drove 300 miles to see him. I explained all that I'd been going through, that we'd driven 300 miles just to see him, and told him I needed help. He got angry and told me to follow him into the hall. We walked to a patient's room. He had me look at a kid about my age who was lying asleep in a hospital bed with IVs in him. He took me back out into the hall. He explained the kid was dying of leukemia. "Go home, and come back when you have real problems!" To which I say "Fuck that guy." (I did not say that to him.) Yes, there is always someone who has it worse than you. But that doesn't change what you're dealing with or mean that you don't need and deserve help and support. Even with all those experiences and more, I knew even then that I was getting better care (and access to care) than most, thanks to Dad being a respected doctor. Certainly didn't hurt being rich and white, too...
My condition continued to get worse. I could barely move. It would take me hours after breakfast before I could even try to sit up. Then Mom and I would work together to get me standing. Often, it would take a few tries. Even if we succeeded, we were left breathless, clinging to each other from the effort of it. Sometimes, after all that, I'd fall back into bed because I just couldn't stand any longer. Those were all above average days. Often, I'd be stuck lying in bed all day. It would take willpower and half an hour's effort to roll over. I was always in pain and never knew when I'd get a sudden sharp spike, where it would be, how long it would last, or just what kind of pain it would be. I had a lot of time just stuck in my own head with nothing to do but reflect. I learned a lot that way, and even ended up teaching myself zen meditation. But I wouldn't recommend that method. It was in the middle of that when I had my first mental breakdown. But it was a quiet one, and no one noticed it happening because I couldn't move and often struggled to talk anyway. I rebuilt a new personality from the ground up. Teen years are a good time to do that because you're naturally in a state of growth and change. But, again, I wouldn't recommend that method. Those years were hell on me and on my mother.
I did the last half of high school on home instruction. The local high school sent tutors to my house. One hour per week per subject. And then I got to do the homework in my own time, as I was able. Sometimes I'd have class in bed. Sometimes I'd have to send them away and look over the papers they left. I had to repeat junior year because, starting around Thanksgiving and lasting for about 9 months, I had major woozy spells every time I tried to concentrate on anything (or even just out of the blue). Eventually, that cleared up and I took the same classes over and got straight A's.
I graduated high school as one of a dozen people (out of 800) to have straight A's for all of high school. We sat on stage at graduation, looking at hundreds of classmates I'd never met. My health improved for a while. I got in to MIT and had some of the best years of my life. Until junior year, when I suddenly got more fatigued and started having dizzy spells and difficulty concentrating. I'd already had a few sleep studies and had been working with a sleep doctor on my delayed sleep phase disorder, fibromyalgia, and chronic fatigue. But investigation showed that that year I'd developed obstructive sleep apnea. Fortunately, CPAPs had recently been invented. I got one of the first models with a built-in humidifier tank. (I remember when I was a kid there was an oddball human interest story on the news about a man with sleep apnea who had trained his pet iguana to sleep on his chest and bite his nose to wake him up if he stopped breathing.) I went back and tried junior year again and wound up with woozy spells and difficulty concentrating. I saw doctors. I went home. I rested up. I went back to try again. I forced it as much as I could. To the point that I was taking a minimal course load, sleeping literally 12 hours a day, doing absolutely nothing that wasn't necessary, and I still wound up burnt out within a matter of weeks. When Mom came to pick me up, I was so thoroughly exhausted that I had the same level of awareness as I'd had while under twilight sedation to get my wisdom teeth out. (I was aware of a bubble around me with about a 4 foot radius and could give single-word responses to simple questions, but everything else was just a blur at best.)
I lost most of my higher processing power. Sophomore year, I'd taught calculus to 3 freshmen, but when someone came to me for help junior year, I couldn't think my way through the material. I'd spent my whole life naturally multitasking. While playing Mario Kart with friends in college, I found myself simultaneously driving my own car, planning out upcoming turns, giving guidance to the friend next to me who had a propensity for getting lost, mentally tracking every shell fired (so I could give a 3-second impact warning on all red and blue shells), chatting with whoever was in the room, keeping half an ear out for interesting snippets of conversation out in the hall, and with enough mental capacity left over that I started analyzing and counting up all the other thought processes.
I've always had difficulty translating ideas from one form to another. Sounds into words. Words into concepts. Images and symbols into what they represent. Concepts into words. All of that is slow and clunky. Sometimes painful. I made up for it by multitasking. I'd naturally just break the whole thing up into an assembly line of independent thought processes. One process would listen to what the other person was saying. Another would keep a running list of things I wanted to respond to and what I needed to say. Another would go down that list and start forming those rough ideas into something more fleshed out. Another would form that into words. Another would review those words for any grammatical or logical issues, sending them back up the line for reworking as necessary. Another would look over it all from the perspective of the other person, asking "If I was them and someone said this stuff to me, how would that come across? Would I understand what was meant? Would anything be insensitive or upsetting?" Still another process would keep a buffer of all the finished and approved sentences, so they were organized and ready to go as soon as it was my turn to speak.
Suddenly, I didn't have the processing power for that. It was gone, and I hadn't noticed the assembly line shut down. I lost some friends before I understood that I'd just been speaking without filters or consideration and had to step back and relearn how to think. That took a couple of years.
I spent a decade of going to neurologists and getting brain scans, but they couldn't tell me what was wrong. I went to the Mayo Clinic. While I was there, they told me to drop by the fibromyalgia clinic. That's where I learned about fibro fog. And a lot of other things I'd never realized were part of the fibromyalgia. Turns out sensitivity to bright lights and loud noises and certain smells were all part of having hypersensitive nerves. Also why a friendly pat on the back stings for several minutes. And the brain gets overwhelmed from all that extra signal constantly flooding it, and sometimes it gets burnt out, and that's why I'd lost my higher processing power and why trying to focus made me feel woozy. Also, it interferes with the body's ability to get restful sleep. It takes longer to fall into the deeper sleep stages, and when you come out of them, you tend to zip back to stage 1 sleep and have to restart the whole cycle instead of being able to float around in the middle stages and dip back down into REM. It was great to finally have answers. But there was nothing they could do to help. They had some suggestions, like cognitive rehab therapy, but nothing panned out.
It was the hardest thing I've ever done, but I sat down and accepted that I was never going to get my life back on the track that had been so clear since I'd been a kid. I was never going to finish my engineering degree. Never going to have a career designing medical equipment. Already in high school, I'd had to accept that my body's physical limitations would mean I'd have to focus on making the most of my mental capacity. But with that hobbled, too, I was short of options. I tried opening a restaurant. Not something I'd ever expected or even considered. But I had high hopes for it. We were going to take in people who faced unfair discrimination, like homeless people, disabled people, veterans, etc. We were going to train them in a comfortable, understanding, and flexible environment. We would teach them every aspect of the business, so they could fill in for each other while also earning valuable and marketable job experience. We'd decorate the walls with the works of local artists, with everything available for sale. We'd build a space where customers could feel relaxed and welcomed, an oasis from the troubles of the world. We'd turn the bathroom walls into giant chalkboards so people could doodle. We'd have a family play area with books and games out back. We'd buy ingredients locally and sustainably, and have a specials menu based on what we could find fresh that day. But, well... that didn't work, either. For a lot of reasons. Trouble with the building. Trouble with a major storm. Trouble with renovations. Trouble with misplaced trust. And... my health taking a dramatic turn for the worse again, so that I was stuck, woozy and barely functional. Barely able to sit up or walk or think. Everything fell apart. I had to give up on that, too.
[2] I'd long since gotten used to having a sleep study every year. On top of the fibromyalgia (and possibly also chronic fatigue syndrome, depending which doctor you ask), diabetes and hypothyroidism can interfere with sleep quality. And I've got the apnea. And what had started as delayed sleep phase disorder blossomed into a free-running non-24 circadian disorder. I physically can't fall asleep until approximately 25 hours after the last time I went to bed. As a rough average. Give or take. And despite my body forcing me to be nocturnal half the time, I effectively have permanent jet lag. My body being out of sync with my physical time zone makes it harder for me to get quality sleep. I have to keep everything under as good control as I reasonably can, because I'm never more than one bad night away from critical exhaustion. Part of that is getting a sleep study so we can fine-tune the BiPAP pressure settings to minimize the effects of the apnea.
In late 2016, things got really bad. Several times over the previous decade, I'd gone through periods of weeks or longer where the effects of my poor sleep quality were severe enough that I lost my mind. Wild mood swings, with fits of rage, depression, and hysteria. Increased hypersensitivity. Talking out loud to myself. Anxiety and paranoia. Suicidal urges. Through experience, I learned to ride it out until I could get the next sleep study and get back on track. But I looked it up, and the symptoms I'd been experiencing were exactly the ones listed as reasons that sleep deprivation were classified as a form of torture by international treaty. (So is the use of "stress positions," where you hold the prisoner's body in ways that cause lasting pain across the body without leaving outward marks.) If it wasn't my own body doing it to me, it would be a war crime.
But 2016 was markedly worse. I could barely sit up. People tiptoeing around in another room with the door closed was overwhelming. I couldn't speak out loud. I could hardly think. I was just utterly broken. And yet my CPAP reported that my apnea was under control. It seemed hopeless. I tried to ride it out, but it didn't get better. I tried to watch TV, but I was so exhausted my eyes didn't want to focus and my memory wasn't good enough to track what was going on. I'd given up trying to read novels years prior because trying to visualize what was going on while remembering what I'd just read and keeping it all in the larger context was just too mentally taxing. I couldn't even read comic books anymore.
With no other options to pass the time, I remembered a friend had once streamed art on Twitch. I decided to see what else was happening on Twitch's Creative category. I found Drezzdie, the first musician to convince me that a cover performance could be better than the original. I started watching her regularly, grateful to have a way to pass the time. Music. Human contact. But no mental, physical, or social pressure. If I was too woozy, I didn't have to talk in chat. I didn't even have to keep my eyes open. I didn't have to remember what was going on. I could just sit back and enjoy live music. It meant everything to me. I started tossing money in her tip jar on a regular basis out of sheer gratitude. Eventually, I subscribed to her channel, thinking that a regular monthly contribution would help me feel like I'd done my part without having to tip all the time. (Silly me.) Drezzdie introduced me to Miili, who introduced me to Sierra, and... I found myself in a growing community of wonderful people and talented artists, many of them with original songs that were better than the ones you'd hear on the radio. They kept me going. They gave me company. They eased the pain. In boundless gratitude, I gave back as I could. In time, I started doing so anonymously (in part because it felt fun, in part because giving without needing anything in return feels somehow more pure, in part because I often wasn't feeling well enough to make myself visible in chat, in part because donating under my own name brought unwanted and sometimes uncomfortable attention).
Still, I was in worse shape than I'd ever been. I had no quality of life. I couldn't function. I couldn't handle being around people. If things didn't get better...
I went to my latest sleep doctor. (I've been to just about every specialist in NJ, as well as a couple in Philly and several in NYC and Boston and the Mayo Clinic and a subspecialty clinic in Chicago and had my case file brought to an international conference... I've got a stubborn, difficult, and complicated case. Doctors get burnt out with their inability to help. And some retire or move. Or point me to a colleague they hope can help more or provide a fresh perspective.) He wasn't the worst by any means, but he was not one of the better ones. I had to fight through his skepticism. The machine data looked fine. But I got him to order a sleep study.
In January of 2017, I was exhausted, broken, and just about hopeless. Knowing that Donald Trump had been elected didn't help. I could see how big of a disaster he would be for the country, how much of his candidacy was fueled by hatred and racism, how corrupt he was, how terrible he'd be for climate change, how obsessed he was with nuclear weapons... Things were about to get very bad in the world around me. And antisemitism was on the rise, too. The restaurant had just failed. I had no other prospects.
I went to the follow-up appointment. I was about 95% sure that the sleep study results were going to say that the machine data was right and nothing more could be done. For the first time in my life, I was 100% sure that if that were the case, I was ready to make sure I didn't wake up the next morning.
But, surprising me and the doctor both, the study showed that my apnea was at least 40 times worse than the machine had been reporting, and if we adjusted the pressure settings things could get better.
We tried it, and I did get back on my feet for a while. But it became a regular thing that, come winter, I'd go through hell again and need another sleep study. It didn't matter where I was. Things were just as bad in warm, sunny, humid Florida as cold, dark, dry New Jersey. In fact, I'd been in Florida in late 2016 when things had taken that dramatic turn for the worst. But I'd endure it, trudge back in for a sleep study, get the results, tweak the pressure by a notch or two, get back on my feet, and make the most of things until they went bad again.
[3] The thing is that each year, those sleep studies found a narrower and narrower window of workable treatment settings. In addition to my obstructive sleep apnea, I'd developed central sleep apnea. If the pressure is too low, I can't breathe because my airway is blocked. If the pressure is too high, my body thinks the machine is doing the breathing for me and I stop breathing because of that. I'd felt things starting to go bad in late 2019, but they didn't get quite bad enough to push me to get a sleep study. I had a good time on a trip with friends. I came home to the pandemic burning through NYC (where I'd moved a year before). I quarantined for two weeks to be sure, and then went back to live with my parents in NJ where it was somewhat safer. In April of 2020, things got really really bad. For months, I could barely sit up or speak out loud or deal with having people anywhere nearby. I had to use my grandmother's old walker just to get around the house, and even that only when absolutely necessary.
I lived with it until August, when the pandemic numbers had subsided a bit and clinics had had time to get safety protocols in place. I got a sleep study. And, for the first time... it didn't help. The window had closed. There was no pressure we could find (either through the study or through my own trial and error adjustments) that would let me sleep enough to even start to function.
I talked to my sleep doc. (One of the better ones I've had.) I'd had throat surgery a decade before in order to open up the airway as much as possible. I went back to the ENT who had done that, but he said there was nothing more he could cut away. He did tell me about another surgery I could try, and referred me to a colleague... who told me I wasn't a candidate for it. Sleep doc had one last idea. An alternative to CPAP therapy is to get a dental appliance. It moves your lower jaw forward, stretching the upper airway open so you can have an easier time breathing. Doc said it was "ridiculous" but my case seemed to warrant it: we could use both in combination.
I got the appliance in late November. The specialist dentist who made it told me to adjust it forward by half a millimeter, give my body 5 days or so to adjust, move it forward another notch, and keep going until one of three things happened: I felt I was getting as much out of it as I was going to get, using it started to hurt, or we got to the end of the adjustment screw. The first 5mm were a breeze. It was just moving the adjustment screw so that the furthest back I could move my jaw was where it normally rested anyway. 5.5mm hurt. I'd get a tension headache for half an hour after putting the appliance in. Sometimes, I'd have to take it back out to give myself a rest from the pain before putting it back in and letting my body adjust. At 6mm I could feel the scar tissue from that throat surgery start to stretch. 7.5mm was as far as my jaw could go. We decided to turn it back to 7mm and call that final. It's helped enough that I can sit up again. Walk around the house a bit. But I'm still far short of functional. I still have trouble talking out loud. Still get easily overwhelmed by small noises and normal conversation. Still can't focus on much or for long. It's gotten to the point that I can't even watch Twitch anymore, except for a few select streamers in small doses. I can't tolerate live human presence, even on the screen. I'm taking painkillers on top of my painkillers and it's still not enough. Being an uncle has been the best, most fulfilling part of my life, and I can't even do that anymore.
That said, it's amazing the difference literally 2mm of jaw position can make. On the one hand, it's a start to getting me functional. On the other hand, if I don't reset my jaw position in the morning, I get pain during the day when I try to bite down and my teeth don't line up right.
Now I'm waiting on a sleep study. We're hoping to get it through insurance despite the fact that I just had one 6 months ago. The idea is that with the appliance holding my throat open, maybe I can use a lower pressure setting, which could reduce the central apnea. When he was measuring me for the appliance, the dentist predicted that my pressure requirement would go from 14 down to 9. (CPAPs and respiratory therapy in general work on the absolutely laughable barometric unit of cm of water.) It will take time to get it through insurance, time to schedule it, time to make sure my circadian rhythm is in sync with the study hours, time for a follow-up appointment, time for me to try out the new settings. Probably another month or so, all told.
[4] The sleep study is the last option on the table. We're out of ideas. I've tried everything. (I've also gotten used to my first appointment with a new sleep doc including them saying "Oh, you really have tried everything" about halfway through.) As things stand, I do not have what I consider a livable quality of life. I've spoken to my family about this, and they support me. At least they'll listen and think about it and be open to having the rest of the conversation when the time comes.
There are two possible outcomes for the immediate future. Either the sleep study is enough to get me back on my feet or it isn't. If it is, I'll make the most of things as best I can. If it isn't, I'm fairly sure I'm done. But, even if it is... it's only a matter of time before things get worse again. Probably next winter, given how things have consistently been these past several years. And when that happens... we're out of options to fix it.
I've spent half my life too exhausted to live. I've been continuously in pain since the mid-90s. I have limited mobility. Even on a good day I physically tire very quickly. I've permanently lost the bulk of my higher processing power. I can't write fiction. I can only read fiction in very small doses. Every attempt to make something of my life has failed.
I know I've done good here and there. A recent thoughtful group gift was a very touching and deeply-needed reminder of that.
I know that some people (yes, that's plural) depend on my friendship and support. I don't want to let them down. Or break any promises.
But I can't live like this. I'm long past weary of it. And I'm down to the last shreds of hope that it can ever get better.
We'll see. I'm consciously not jumping to conclusions. I'm doing what I can to prepare for both possibilities. Including working on getting a new insulin pump that will hopefully interrupt my sleep less often.
I'm grateful for your friendship and support. For the good times we've shared. For the company and music. For cheering me up, even if just for a little while, even when I was in that territory where I was so weary I was too numb to even feel sad. Whatever happens, I wish you the best.
In conclusion, I'll say what I wrote to my family: By my definition, love is where you care about someone so deeply that their joy, pain, and wellbeing are more important than your own. I've pushed through the worst out of love. But I fear the time is coming when I'll need those closest to me to show love in return and put my pain and needs first.
It's taken me all day to write all this. (The timestamp on this entry shows 11:10AM, but when I finally hit post it was 10:05PM.) If you've read this far, thank you.
As I said, we shall see. Maybe it will be like it was 4 years ago and the one last sleep study will make all the difference. (For a while, anyway.) But I thought I should let you know how things stand.
Today, Perseverance landed, literally a world away.
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Content warning: Medical woes, end of life
Sections:
[1] Background: Overview of medical history for the first 30 years or so of my life. I like to provide context. But feel free to skip ahead.
[2] Past: The last 5 years or so.
[3] Present: The last year up to where things are now.
[4] Future: Two possibilities going forward.
[1] I was born with an oversized immune system. It's great at keeping me from getting colds and flu and suchlike. But it gets bored and goes looking for target practice. I'm basically allergic to myself, and I've got some autoimmune conditions. I've also always had trouble sleeping. Some of my earliest memories involve learning to fake being asleep so Mom would stop scolding me for lying awake in bed after lights out, asking my dad (a pediatrician) why my throat was always so sore (he and other doctors would examine it, see it was bright red, have no idea why, and never be able to do much to help), dealing with unexplained stomach cramps and woozy spells that came and went without warning, and so on.
Don't get me wrong; I had a pretty happy childhood between all that. I was lucky with my family. But there were definite early signs that things were wrong. I was around 10 when Dad took me to a medical training program. I sat in an exam room with my parents for hours while batches of med students came in to examine me, ask me questions, stare at my fingernails, and confer with their teachers before moving down the hall to the next room and making room for the next batch to look me over. It was a good training exercise for them and a chance to get some fresh perspective on my case. I was happy to do it. But we didn't come away with any new answers.
It turns out they were right to look at my fingernails, though. I did indeed develop a thyroid disorder a couple of years later, and striated fingernails (which I did not have at 10 but have had since I was 12) are a hallmark of that. I developed diabetes soon after that. Coping with those wasn't too bad. I had excellent care and my grandfather was the best role model I could have asked for. But, still. Clear signs my immune system was trying to kill me, and it was getting more serious about it.
As you may know, I also started going bald in grade school. I was sensitive about it. (In part because my mother made a fuss about finding ways to keep it hidden because she thought I'd be sensitive about it, which taught me that I should be more concerned about it.) My sisters bought me my first propeller hat, and told me to take the opportunity to start a hat collection. Take a disadvantage and turn it into a fun way to express myself. I didn't wear that hat very often, but I still took the lesson to heart, and the propeller hat has been my personal symbol ever since. Hence all my hat-related usernames and avatars.
In high school, things got worse again. I started getting more and more physically exhausted and having unexplained pains all over my body. Most doctors didn't know what to do with me. One diagnosed me with fibromyalgia. He himself had come up with the protocol to formally diagnose it, and I was 18/18 on his test. Unfortunately, he didn't actually know how to help me with it. He promised that if I followed his treatment regimen I'd be cured within 3 months. I did, but I wasn't. He felt pressured because Dad was a close colleague who often came to appointments with me. We were both frustrated and disheartened by my lack of progress. He snapped. He told me that I was lying. That if I'd been following his regimen I'd be better, since I wasn't better it must be my fault, he couldn't work with a patient who lied to him, and I needed to leave and not come back. (Years later, he apologized for that.) Other doctors were skeptical that I was reporting widespread pain with no reason they could find. One convinced my parents to give me a placebo. Once Dad found a specialist in Boston. We drove 300 miles to see him. I explained all that I'd been going through, that we'd driven 300 miles just to see him, and told him I needed help. He got angry and told me to follow him into the hall. We walked to a patient's room. He had me look at a kid about my age who was lying asleep in a hospital bed with IVs in him. He took me back out into the hall. He explained the kid was dying of leukemia. "Go home, and come back when you have real problems!" To which I say "Fuck that guy." (I did not say that to him.) Yes, there is always someone who has it worse than you. But that doesn't change what you're dealing with or mean that you don't need and deserve help and support. Even with all those experiences and more, I knew even then that I was getting better care (and access to care) than most, thanks to Dad being a respected doctor. Certainly didn't hurt being rich and white, too...
My condition continued to get worse. I could barely move. It would take me hours after breakfast before I could even try to sit up. Then Mom and I would work together to get me standing. Often, it would take a few tries. Even if we succeeded, we were left breathless, clinging to each other from the effort of it. Sometimes, after all that, I'd fall back into bed because I just couldn't stand any longer. Those were all above average days. Often, I'd be stuck lying in bed all day. It would take willpower and half an hour's effort to roll over. I was always in pain and never knew when I'd get a sudden sharp spike, where it would be, how long it would last, or just what kind of pain it would be. I had a lot of time just stuck in my own head with nothing to do but reflect. I learned a lot that way, and even ended up teaching myself zen meditation. But I wouldn't recommend that method. It was in the middle of that when I had my first mental breakdown. But it was a quiet one, and no one noticed it happening because I couldn't move and often struggled to talk anyway. I rebuilt a new personality from the ground up. Teen years are a good time to do that because you're naturally in a state of growth and change. But, again, I wouldn't recommend that method. Those years were hell on me and on my mother.
I did the last half of high school on home instruction. The local high school sent tutors to my house. One hour per week per subject. And then I got to do the homework in my own time, as I was able. Sometimes I'd have class in bed. Sometimes I'd have to send them away and look over the papers they left. I had to repeat junior year because, starting around Thanksgiving and lasting for about 9 months, I had major woozy spells every time I tried to concentrate on anything (or even just out of the blue). Eventually, that cleared up and I took the same classes over and got straight A's.
I graduated high school as one of a dozen people (out of 800) to have straight A's for all of high school. We sat on stage at graduation, looking at hundreds of classmates I'd never met. My health improved for a while. I got in to MIT and had some of the best years of my life. Until junior year, when I suddenly got more fatigued and started having dizzy spells and difficulty concentrating. I'd already had a few sleep studies and had been working with a sleep doctor on my delayed sleep phase disorder, fibromyalgia, and chronic fatigue. But investigation showed that that year I'd developed obstructive sleep apnea. Fortunately, CPAPs had recently been invented. I got one of the first models with a built-in humidifier tank. (I remember when I was a kid there was an oddball human interest story on the news about a man with sleep apnea who had trained his pet iguana to sleep on his chest and bite his nose to wake him up if he stopped breathing.) I went back and tried junior year again and wound up with woozy spells and difficulty concentrating. I saw doctors. I went home. I rested up. I went back to try again. I forced it as much as I could. To the point that I was taking a minimal course load, sleeping literally 12 hours a day, doing absolutely nothing that wasn't necessary, and I still wound up burnt out within a matter of weeks. When Mom came to pick me up, I was so thoroughly exhausted that I had the same level of awareness as I'd had while under twilight sedation to get my wisdom teeth out. (I was aware of a bubble around me with about a 4 foot radius and could give single-word responses to simple questions, but everything else was just a blur at best.)
I lost most of my higher processing power. Sophomore year, I'd taught calculus to 3 freshmen, but when someone came to me for help junior year, I couldn't think my way through the material. I'd spent my whole life naturally multitasking. While playing Mario Kart with friends in college, I found myself simultaneously driving my own car, planning out upcoming turns, giving guidance to the friend next to me who had a propensity for getting lost, mentally tracking every shell fired (so I could give a 3-second impact warning on all red and blue shells), chatting with whoever was in the room, keeping half an ear out for interesting snippets of conversation out in the hall, and with enough mental capacity left over that I started analyzing and counting up all the other thought processes.
I've always had difficulty translating ideas from one form to another. Sounds into words. Words into concepts. Images and symbols into what they represent. Concepts into words. All of that is slow and clunky. Sometimes painful. I made up for it by multitasking. I'd naturally just break the whole thing up into an assembly line of independent thought processes. One process would listen to what the other person was saying. Another would keep a running list of things I wanted to respond to and what I needed to say. Another would go down that list and start forming those rough ideas into something more fleshed out. Another would form that into words. Another would review those words for any grammatical or logical issues, sending them back up the line for reworking as necessary. Another would look over it all from the perspective of the other person, asking "If I was them and someone said this stuff to me, how would that come across? Would I understand what was meant? Would anything be insensitive or upsetting?" Still another process would keep a buffer of all the finished and approved sentences, so they were organized and ready to go as soon as it was my turn to speak.
Suddenly, I didn't have the processing power for that. It was gone, and I hadn't noticed the assembly line shut down. I lost some friends before I understood that I'd just been speaking without filters or consideration and had to step back and relearn how to think. That took a couple of years.
I spent a decade of going to neurologists and getting brain scans, but they couldn't tell me what was wrong. I went to the Mayo Clinic. While I was there, they told me to drop by the fibromyalgia clinic. That's where I learned about fibro fog. And a lot of other things I'd never realized were part of the fibromyalgia. Turns out sensitivity to bright lights and loud noises and certain smells were all part of having hypersensitive nerves. Also why a friendly pat on the back stings for several minutes. And the brain gets overwhelmed from all that extra signal constantly flooding it, and sometimes it gets burnt out, and that's why I'd lost my higher processing power and why trying to focus made me feel woozy. Also, it interferes with the body's ability to get restful sleep. It takes longer to fall into the deeper sleep stages, and when you come out of them, you tend to zip back to stage 1 sleep and have to restart the whole cycle instead of being able to float around in the middle stages and dip back down into REM. It was great to finally have answers. But there was nothing they could do to help. They had some suggestions, like cognitive rehab therapy, but nothing panned out.
It was the hardest thing I've ever done, but I sat down and accepted that I was never going to get my life back on the track that had been so clear since I'd been a kid. I was never going to finish my engineering degree. Never going to have a career designing medical equipment. Already in high school, I'd had to accept that my body's physical limitations would mean I'd have to focus on making the most of my mental capacity. But with that hobbled, too, I was short of options. I tried opening a restaurant. Not something I'd ever expected or even considered. But I had high hopes for it. We were going to take in people who faced unfair discrimination, like homeless people, disabled people, veterans, etc. We were going to train them in a comfortable, understanding, and flexible environment. We would teach them every aspect of the business, so they could fill in for each other while also earning valuable and marketable job experience. We'd decorate the walls with the works of local artists, with everything available for sale. We'd build a space where customers could feel relaxed and welcomed, an oasis from the troubles of the world. We'd turn the bathroom walls into giant chalkboards so people could doodle. We'd have a family play area with books and games out back. We'd buy ingredients locally and sustainably, and have a specials menu based on what we could find fresh that day. But, well... that didn't work, either. For a lot of reasons. Trouble with the building. Trouble with a major storm. Trouble with renovations. Trouble with misplaced trust. And... my health taking a dramatic turn for the worse again, so that I was stuck, woozy and barely functional. Barely able to sit up or walk or think. Everything fell apart. I had to give up on that, too.
[2] I'd long since gotten used to having a sleep study every year. On top of the fibromyalgia (and possibly also chronic fatigue syndrome, depending which doctor you ask), diabetes and hypothyroidism can interfere with sleep quality. And I've got the apnea. And what had started as delayed sleep phase disorder blossomed into a free-running non-24 circadian disorder. I physically can't fall asleep until approximately 25 hours after the last time I went to bed. As a rough average. Give or take. And despite my body forcing me to be nocturnal half the time, I effectively have permanent jet lag. My body being out of sync with my physical time zone makes it harder for me to get quality sleep. I have to keep everything under as good control as I reasonably can, because I'm never more than one bad night away from critical exhaustion. Part of that is getting a sleep study so we can fine-tune the BiPAP pressure settings to minimize the effects of the apnea.
In late 2016, things got really bad. Several times over the previous decade, I'd gone through periods of weeks or longer where the effects of my poor sleep quality were severe enough that I lost my mind. Wild mood swings, with fits of rage, depression, and hysteria. Increased hypersensitivity. Talking out loud to myself. Anxiety and paranoia. Suicidal urges. Through experience, I learned to ride it out until I could get the next sleep study and get back on track. But I looked it up, and the symptoms I'd been experiencing were exactly the ones listed as reasons that sleep deprivation were classified as a form of torture by international treaty. (So is the use of "stress positions," where you hold the prisoner's body in ways that cause lasting pain across the body without leaving outward marks.) If it wasn't my own body doing it to me, it would be a war crime.
But 2016 was markedly worse. I could barely sit up. People tiptoeing around in another room with the door closed was overwhelming. I couldn't speak out loud. I could hardly think. I was just utterly broken. And yet my CPAP reported that my apnea was under control. It seemed hopeless. I tried to ride it out, but it didn't get better. I tried to watch TV, but I was so exhausted my eyes didn't want to focus and my memory wasn't good enough to track what was going on. I'd given up trying to read novels years prior because trying to visualize what was going on while remembering what I'd just read and keeping it all in the larger context was just too mentally taxing. I couldn't even read comic books anymore.
With no other options to pass the time, I remembered a friend had once streamed art on Twitch. I decided to see what else was happening on Twitch's Creative category. I found Drezzdie, the first musician to convince me that a cover performance could be better than the original. I started watching her regularly, grateful to have a way to pass the time. Music. Human contact. But no mental, physical, or social pressure. If I was too woozy, I didn't have to talk in chat. I didn't even have to keep my eyes open. I didn't have to remember what was going on. I could just sit back and enjoy live music. It meant everything to me. I started tossing money in her tip jar on a regular basis out of sheer gratitude. Eventually, I subscribed to her channel, thinking that a regular monthly contribution would help me feel like I'd done my part without having to tip all the time. (Silly me.) Drezzdie introduced me to Miili, who introduced me to Sierra, and... I found myself in a growing community of wonderful people and talented artists, many of them with original songs that were better than the ones you'd hear on the radio. They kept me going. They gave me company. They eased the pain. In boundless gratitude, I gave back as I could. In time, I started doing so anonymously (in part because it felt fun, in part because giving without needing anything in return feels somehow more pure, in part because I often wasn't feeling well enough to make myself visible in chat, in part because donating under my own name brought unwanted and sometimes uncomfortable attention).
Still, I was in worse shape than I'd ever been. I had no quality of life. I couldn't function. I couldn't handle being around people. If things didn't get better...
I went to my latest sleep doctor. (I've been to just about every specialist in NJ, as well as a couple in Philly and several in NYC and Boston and the Mayo Clinic and a subspecialty clinic in Chicago and had my case file brought to an international conference... I've got a stubborn, difficult, and complicated case. Doctors get burnt out with their inability to help. And some retire or move. Or point me to a colleague they hope can help more or provide a fresh perspective.) He wasn't the worst by any means, but he was not one of the better ones. I had to fight through his skepticism. The machine data looked fine. But I got him to order a sleep study.
In January of 2017, I was exhausted, broken, and just about hopeless. Knowing that Donald Trump had been elected didn't help. I could see how big of a disaster he would be for the country, how much of his candidacy was fueled by hatred and racism, how corrupt he was, how terrible he'd be for climate change, how obsessed he was with nuclear weapons... Things were about to get very bad in the world around me. And antisemitism was on the rise, too. The restaurant had just failed. I had no other prospects.
I went to the follow-up appointment. I was about 95% sure that the sleep study results were going to say that the machine data was right and nothing more could be done. For the first time in my life, I was 100% sure that if that were the case, I was ready to make sure I didn't wake up the next morning.
But, surprising me and the doctor both, the study showed that my apnea was at least 40 times worse than the machine had been reporting, and if we adjusted the pressure settings things could get better.
We tried it, and I did get back on my feet for a while. But it became a regular thing that, come winter, I'd go through hell again and need another sleep study. It didn't matter where I was. Things were just as bad in warm, sunny, humid Florida as cold, dark, dry New Jersey. In fact, I'd been in Florida in late 2016 when things had taken that dramatic turn for the worst. But I'd endure it, trudge back in for a sleep study, get the results, tweak the pressure by a notch or two, get back on my feet, and make the most of things until they went bad again.
[3] The thing is that each year, those sleep studies found a narrower and narrower window of workable treatment settings. In addition to my obstructive sleep apnea, I'd developed central sleep apnea. If the pressure is too low, I can't breathe because my airway is blocked. If the pressure is too high, my body thinks the machine is doing the breathing for me and I stop breathing because of that. I'd felt things starting to go bad in late 2019, but they didn't get quite bad enough to push me to get a sleep study. I had a good time on a trip with friends. I came home to the pandemic burning through NYC (where I'd moved a year before). I quarantined for two weeks to be sure, and then went back to live with my parents in NJ where it was somewhat safer. In April of 2020, things got really really bad. For months, I could barely sit up or speak out loud or deal with having people anywhere nearby. I had to use my grandmother's old walker just to get around the house, and even that only when absolutely necessary.
I lived with it until August, when the pandemic numbers had subsided a bit and clinics had had time to get safety protocols in place. I got a sleep study. And, for the first time... it didn't help. The window had closed. There was no pressure we could find (either through the study or through my own trial and error adjustments) that would let me sleep enough to even start to function.
I talked to my sleep doc. (One of the better ones I've had.) I'd had throat surgery a decade before in order to open up the airway as much as possible. I went back to the ENT who had done that, but he said there was nothing more he could cut away. He did tell me about another surgery I could try, and referred me to a colleague... who told me I wasn't a candidate for it. Sleep doc had one last idea. An alternative to CPAP therapy is to get a dental appliance. It moves your lower jaw forward, stretching the upper airway open so you can have an easier time breathing. Doc said it was "ridiculous" but my case seemed to warrant it: we could use both in combination.
I got the appliance in late November. The specialist dentist who made it told me to adjust it forward by half a millimeter, give my body 5 days or so to adjust, move it forward another notch, and keep going until one of three things happened: I felt I was getting as much out of it as I was going to get, using it started to hurt, or we got to the end of the adjustment screw. The first 5mm were a breeze. It was just moving the adjustment screw so that the furthest back I could move my jaw was where it normally rested anyway. 5.5mm hurt. I'd get a tension headache for half an hour after putting the appliance in. Sometimes, I'd have to take it back out to give myself a rest from the pain before putting it back in and letting my body adjust. At 6mm I could feel the scar tissue from that throat surgery start to stretch. 7.5mm was as far as my jaw could go. We decided to turn it back to 7mm and call that final. It's helped enough that I can sit up again. Walk around the house a bit. But I'm still far short of functional. I still have trouble talking out loud. Still get easily overwhelmed by small noises and normal conversation. Still can't focus on much or for long. It's gotten to the point that I can't even watch Twitch anymore, except for a few select streamers in small doses. I can't tolerate live human presence, even on the screen. I'm taking painkillers on top of my painkillers and it's still not enough. Being an uncle has been the best, most fulfilling part of my life, and I can't even do that anymore.
That said, it's amazing the difference literally 2mm of jaw position can make. On the one hand, it's a start to getting me functional. On the other hand, if I don't reset my jaw position in the morning, I get pain during the day when I try to bite down and my teeth don't line up right.
Now I'm waiting on a sleep study. We're hoping to get it through insurance despite the fact that I just had one 6 months ago. The idea is that with the appliance holding my throat open, maybe I can use a lower pressure setting, which could reduce the central apnea. When he was measuring me for the appliance, the dentist predicted that my pressure requirement would go from 14 down to 9. (CPAPs and respiratory therapy in general work on the absolutely laughable barometric unit of cm of water.) It will take time to get it through insurance, time to schedule it, time to make sure my circadian rhythm is in sync with the study hours, time for a follow-up appointment, time for me to try out the new settings. Probably another month or so, all told.
[4] The sleep study is the last option on the table. We're out of ideas. I've tried everything. (I've also gotten used to my first appointment with a new sleep doc including them saying "Oh, you really have tried everything" about halfway through.) As things stand, I do not have what I consider a livable quality of life. I've spoken to my family about this, and they support me. At least they'll listen and think about it and be open to having the rest of the conversation when the time comes.
There are two possible outcomes for the immediate future. Either the sleep study is enough to get me back on my feet or it isn't. If it is, I'll make the most of things as best I can. If it isn't, I'm fairly sure I'm done. But, even if it is... it's only a matter of time before things get worse again. Probably next winter, given how things have consistently been these past several years. And when that happens... we're out of options to fix it.
I've spent half my life too exhausted to live. I've been continuously in pain since the mid-90s. I have limited mobility. Even on a good day I physically tire very quickly. I've permanently lost the bulk of my higher processing power. I can't write fiction. I can only read fiction in very small doses. Every attempt to make something of my life has failed.
I know I've done good here and there. A recent thoughtful group gift was a very touching and deeply-needed reminder of that.
I know that some people (yes, that's plural) depend on my friendship and support. I don't want to let them down. Or break any promises.
But I can't live like this. I'm long past weary of it. And I'm down to the last shreds of hope that it can ever get better.
We'll see. I'm consciously not jumping to conclusions. I'm doing what I can to prepare for both possibilities. Including working on getting a new insulin pump that will hopefully interrupt my sleep less often.
I'm grateful for your friendship and support. For the good times we've shared. For the company and music. For cheering me up, even if just for a little while, even when I was in that territory where I was so weary I was too numb to even feel sad. Whatever happens, I wish you the best.
In conclusion, I'll say what I wrote to my family: By my definition, love is where you care about someone so deeply that their joy, pain, and wellbeing are more important than your own. I've pushed through the worst out of love. But I fear the time is coming when I'll need those closest to me to show love in return and put my pain and needs first.
It's taken me all day to write all this. (The timestamp on this entry shows 11:10AM, but when I finally hit post it was 10:05PM.) If you've read this far, thank you.
As I said, we shall see. Maybe it will be like it was 4 years ago and the one last sleep study will make all the difference. (For a while, anyway.) But I thought I should let you know how things stand.
Today, Perseverance landed, literally a world away.
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