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This post is to help provide context for the brainstorming post that comes after it. Understanding where I'm coming from, what I'm dealing with, what my limitations are, etc. will hopefully help shape suggestions more productively. I'll summarize my medical history (probably more than I should say in public, but what do I have to lose, really?), what I've done to try to move past it, and where I am today.
Ever since I was a small child (don't worry; I'll be skimming quite a bit) I've had trouble sleeping. I remember being barely more than a toddler and asking Mom how she'd known I was still awake so that I could better learn how to fake being asleep so that I could get her to stop scolding me for lying awake in bed after lights out.
I want to say I was mostly okay back then other than that. Mostly. I was a pretty happy kid. Lucky enough to have a close family and a comfortable lifestyle. I was, however, prone to getting unexplained headaches, stabbing pains in my gut out of nowhere, and bouts of nausea. I also started getting what I've come to call dizzy or woozy spells for lack of a better term. I described the sensation as feeling like there was a tornado inside my skull. I don't have a better way to explain it, and the details aren't important. Just - I got woozy and it was hard to think and no one knew why it was happening or what triggered it. I got sent to a few shrinks, but the problem wasn't psychological, they were never helpful, and I never found one who could actually understand my point of view.
Those symptoms more or less cleared up as I got older. But then I developed new ones. I developed a bald spot in grade school. Then a thyroid disorder. Then diabetes. All due to my own immune system attacking me. I've got a pretty good immune system overall. I get colds and flu and the like about half as often as you ordinary mortals. When I do get sick, I get about half the severity and I get rid of it in about half the time. I could probably count on one hand the number of times I've had a fever. But the flipside is that my immune system gets bored. Or maybe it's more of a situation where it kicks invaders' butts because it's determined to be the thing that kills me and nothing else better get in the way. Or maybe it's just overpowered and too big for my britches. However you want to personify it. Anyway, for whatever reason it's decided to target and either destroy or disable parts of my body that are supposed to be there.
The thyroid was no big deal. Take a pill every morning to replace the hormone my body could no longer produce and I'd be fine. I took diabetes in stride, too. My grandfather was diabetic and he was fine, so what was there to worry about? For the first time, I was able to stick to a healthier diet for more than a week. Because it turns out "Your life depends on it" is a pretty powerful motivator. I learned about nutrition and became more conscious of what I was eating and doing. Having to take shots and stick my fingers was not fun, but I was willing to focus on the bright side.
And the fact was that I was really lucky. Diabetes used to be called the wasting disease. Until insulin therapy was developed, diabetes meant you were going to sicken, fall into a coma, and die, and there was nothing anyone could do about it. My mother's generation was the first in human history to even have a chance at surviving type 1 diabetes, and they had a difficult time of it because the technology to monitor blood sugar was so primitive you just had to rely on educated guesses to try to keep yourself under control. If I was going to become diabetic I was extremely lucky to develop it at a time when the science and technology were there to allow me to treat and control it and thus have a good chance at a normal lifespan. (Just this past week I started on an insulin pump. Technology finally got good enough to make it worthwhile for me. It should hopefully give me even better control with less fuss and a lot fewer needles.)
I was self-conscious about the baldness, though. It was messy, this slowly growing bald patch. And not something you were supposed to have until you were middle-aged. My sisters bought me a propeller beanie. They told me to start a collection of interesting hats. I didn't get the beanie at the time, but I appreciated the thought. Take the embarrassing thing and own it. Have fun with it. Take it as an opportunity to express myself. Focus on the silver lining. The propeller beanie has been a personal symbol ever since. Of how to look at life. As a way to remember to laugh even in the dark, painful times. As a reminder of my sisters' love. It's always there in my avatar.
In middle school, I started having more trouble sleeping. Over the next couple of years, pain and exhaustion became growing problems. The private prep school I was attending didn't want to accommodate my medical needs. We had to fight for everything, and eventually, at the end of freshman year of high school, they said they just couldn't give me what I needed. I was told to go to the local high school instead. Where I was welcomed by the administration with open arms and great sympathy. They went above and beyond what we'd even thought to ask. They assigned me to the best guidance counselor on staff. They listened, understood, and encouraged. They sent tutors to my house. For free. I spent one hour per week per subject working with the tutors and did the week's homework on my own time. More than a few times, the tutor came up to my room and I had class in bed. Several times, we just sent them home because I couldn't cope with even that much. When I graduated, I sat on stage with 12 classmates who had earned straight A's throughout high school, looking out at 800 students I'd never really met.
I don't know what I'd have done without such an amazing system. But I needed it. No matter how much I slept, I was constantly exhausted. On a good day, I could get out of bed if I had a lot of help. Mom would come up to my room. Working with all our combined might, we'd pull me into a sitting position. Take a break. Catch our breath. Sometimes, it was too much and I'd fall over. Sometimes, we'd move on to the next step, hauling me onto my feet. The whole process took at least 15 minutes and left us clutching each other gasping for breath. That was a good day. Often, I'd be stuck in bed, unable to move, for hours at a time. Sometimes the entire day.
I was in constant pain, too. (It's remained ever since. There hasn't been a moment in the last quarter century that I haven't been in pain. These days, with the help of better pain meds, I mostly relegate it to background noise. The pain is there, but I can more or less ignore it. Except for when it spikes in some joint or muscle or something. Or when something sets it off. Bright lights, loud noises, high pitched noises, certain smells, a friendly pat on the back, etc.) Back then, it was new to me and more severe and there were no meds for it. I was lucky to even be diagnosed. It took a lot of work to find a doctor who had any idea what we were dealing with, but we happened on one who just happened to have developed one of the first recognized protocols to diagnose fibromyalgia. Unfortunately, medical science still hadn't figured out how to treat it.
So, like I said, I was constantly in some pain. Just sort of a general miasma of aches and pains and pins and needles. Then I'd get a stabbing pain in my knee out of nowhere. Sometimes it would go away after a few seconds. Sometimes a few minutes. Sometimes a few hours. And then, just as randomly, I'd get a different pain in my ankle. Or my hip. Or the back of my shoulder. Or my elbow. Or my eye. They'd come and go as they pleased, sometimes overlapping sometimes not.
Even after I was out of bed, dressed, and downstairs, it was not uncommon to spend several hours flat out on the couch, physically exhausted, with every nerve in my skin feeling like it was on fire. Walking was difficult. I learned to lean against walls. I developed paths across the house. Slide along the back hall, stumble through the open space to clutch the door of the oven, catch my breath, push off to the center island of the kitchen, back across to the pantry, over to the far counter... (I told my sister I needed to keep up my upper body strength so if I started to fall I could catch myself. She laughed. She didn't understand.) I really should have started using a cane back then, but the stigma kept me from it. How embarrassing would it be? Wouldn't people think I was just calling attention to myself, faking being the dreaded "disabled"? Wouldn't they stare at the kid with the invisible illness shambling along with a cane like an old man? Stupid to have worried about such things, or to have put those worries above my own physical needs, but it's how our culture thinks.
Junior year of high school is when the woozy spells came back. I'd actually completely forgotten that I'd had them before. But suddenly I found that I was getting woozy a lot. Especially when I tried to apply myself mentally. To concentrate on anything. To do school work. My head would get foggy and start to spin, and trying to think felt like pushing the electrical impulses through cotton balls. Except that if I kept pushing it would become an impenetrable wall. It lasted for 9 months, and then cleared up. From Thanksgiving through the summer, I couldn't think. And then I got better. Took the same classes over and breezed through them.
Still, it was emotionally draining. Being exhausted all the time. Being in pain all the time. Never knowing when the pain would get really bad or how long it would last. Being unable to move. Having to deal with all the problems caused by adults who didn't understand what was going on and had some very misguided ideas about how to help. Or didn't want to help at all. Feeling that I'd be stuck, in agony, unable to care for myself, for quite possibly the rest of my life.
It broke me. I'd been teaching myself to meditate in order to deal with it all, and I just hit a point where I felt my center shatter. Gone. Blasted to pieces. I spent days on the couch, unable to move, unable to talk, unable to get a handle on anything. (From the outside, it was hard to notice because it was already fairly normal for me to go for long periods unable to move or speak.) Fortunately, this was in the midst of puberty, at exactly the time when you're naturally supposed to be changing and reforming yourself. I rebuilt my mind from the ground up, on a solid foundation of zen.
Accept what you can't change. Find a way to live with it. Work to improve what you can change. Let the pain go. Let it flow through you and out. Don't waste your energy getting angry. Choose what's worth getting worked up over. The times where it's appropriate and productive to spend that energy. On the flipside, never pass up an opportunity to laugh. Savor each good thing, no matter how small or transitory, on its own terms, to the fullest. Take the times of joy and embrace them wholeheartedly, even if only for a moment. Just stop and appreciate the beautiful sunset or the pretty flower or the silly thing the dog is doing or whatever it is, and forget about everything else for a second.
That's guided me through quite a bit over the years. And I do believe that meditation is a vital life skill. It teaches you to recognize your emotional reactions and take a step back from them. You can't help what your subconscious throws at you, but you can choose what to do with it. Hold on to it, feeding it more of your energy, or let it go? You can teach yourself to make that a conscious choice, and that can change everything about how you deal with stressful or upsetting situations.
But even with all those mental tools, it was a hell of a lot to deal with. And it's hard to keep up a positive attitude when you're completely exhausted. Sometimes I could laugh at the pain. Sometimes I was just trapped with it, weary and hopeless. That was when I first started thinking about ending it all. Since then, those thoughts have never been far away. That there's an escape hatch if I really need it. That taking it is tempting. Whenever I get too tired to deal, it comes bubbling back up.
I decided that since my body wasn't working, I'd focus on what was. I'd make the most of my mind. And I quietly made a deal with myself - if I could get into a good college, that meant I had a fair chance to make something of myself. If not, then I could think about whether to give up. I got into MIT.
The first couple of years at MIT were amazing. It's so freeing, living amongst your own kind. I felt myself opening up in ways I'd never even realized I was holding back, because the people around me were just as weird. We valued that together.
The school itself was very accommodating. They worked with me to schedule the classes I'd be taking in the late morning or afternoon so that I could make it. If the class was too early for me, they'd video tape it so I could review in my own time. Despite crowding issues, they assigned me to a dorm on campus close to my classes that had a dining hall inside. They were sympathetic to my needs and worked with me to help me make the most of what I could do.
I did well there. And, as I started kicking around ideas for insulin pumps with friends in my dorm, I realized that that was what I wanted to do with my life. The best, happiest, most satisfying, most rewarding feelings for me have always been associated with making life better for the people around me. Making someone happy. Helping them solve or cope with a problem. Righting some wrong. Healing some injury. Just getting a laugh. Ever since grade school, I've defined the purpose and worth of my life in terms of how much it could be said that the world was a better place for having me in it. My father is a doctor, and that's always been inspiring to me. I've got the mindset and inclination to be a mechanical engineer (and not the stomach for med school). Put them together, and I could be a biomedical engineer. Why was it that the kidney (for the most part a simple osmosis filter) is the size of your fist but the best we could do to replace it was a machine the size of a refrigerator that couldn't do the job nearly as well? I would study engineering and biology and get a job designing an artificial kidney. I'd make an insulin pump that could read your blood sugar, follow the trends, calculate how much insulin you needed, and deliver it automatically. And, since modern insulin is produced by genetically modified yeast, I'd take a look at creating a way to host a colony of them inside the pump so they could produce insulin to refill the reservoir. I couldn't be a doctor, but I could make medical equipment that would save and improve lives.
... And that's when the woozy spells came back. I got more and more tired until I couldn't keep up with classes at all. I went home. I got diagnosed with sleep apnea. (On top of the other sleeping disorders I'd been diagnosed with in high school - delayed sleep phase disorder, fibromyalgia, chronic fatigue. Not to mention that the diabetes could interfere with my ability to sleep if my blood sugar control slipped. And, it turns out, my thyroid dosage had gotten out of control, leading to disturbed sleep and just enough weight gain to trigger the apnea.) I got a CPAP. I caught up on sleep as best I could. (Already, I had a pattern. Start the semester strong. Get gradually more tired as it went on. Start sleeping in more on weekends to make up for it. Push through finals. Hibernate through winter break, which was just enough to get me back on my feet for the spring. Get gradually more tired as that went on. Push through finals. Come home. Crash. Hibernate through the summer. Which was just enough to get me caught up before starting fall term.) I was ready to go.
... And that's when the woozy spells came back. Again. At first, I thought it was going to be like junior year of high school. They'd resolve themselves in time and I could get on with my life. It didn't go that way. I pushed myself as hard as I could. I took a light course load. I exerted myself for absolutely nothing non-essential. I slept literally 12 hours a day. And within a matter of weeks I was utterly and completely exhausted. To the point that when Mom picked me up I had roughly the same level of awareness as when they'd drugged me to remove my wisdom teeth. After about 2-3 feet, the world just became hazy. I could understand simple commands like a dog. I could maybe reply in short phrases.
I spent a decade looking for answers. Seeing neurologists and rheumatologists and every specialist we could think to look for. Getting brain scans. Taking cognitive aptitude tests. Working with cognitive rehab therapists. Trying different treatments (including various "alternative" medications and therapies). Until, finally, when I went to the Mayo Clinic, they told me that as long as I was there to see the neurologist I should stop by the fibromyalgia clinic. Where they causally mentioned that, oh yes, that's a common symptom. They call it "fibro fog." See, fibromyalgia can basically be summed up as having hypersensitive nerves. That's why I have all this pain. That's why I can easily be overwhelmed by too many noises. That's why I'm so sensitive to light and sound and smell and touch and pretty much everything. That's (part of) why I have such poor sleep quality (too much sensory activity impairs my ability to reach and stay in the deeper, restorative sleep stages). And that's why my mind fell apart. My brain just got overloaded with way more signal than it was ever meant to handle. And also I'm physically exhausted. And there's really nothing to be done about it.
I've lost most of my higher processing power. I used to multitask as naturally as breathing. Talking to someone? I'd listen to them, process what they were saying, think of what I'd want to say back, translate those concept into words, check that those words would actually come across the way I'd meant them, revise them as the running list of what I wanted to say was updated, and check it all over for grammar and other errors. Each as its own parallel process working independently along the assembly line. Relaxing with friends? I'd drive my own Mario Kart, plan out what I wanted to do with the upcoming turns, keep track of where everyone else was, give directions to the friend who kept getting lost, keep track of every turtle shell fired even when off screen ("You're going to get hit in... 3... 2... 1..." *wham*), chat with friends, keep an ear out for interesting snippets of conversation down the hall, and maybe idly muse about something else. Now I just don't have the processing power to do any of that. I've had to completely relearn how to think and talk. I lost a few friends because I basically had no functioning filter anymore to say "Are you sure you want to say that? How would it sound to hear that?" That process had just been shut down and it was a long time before I understood it had happened. And, more to the point... I taught freshman calculus at MIT for a semester. Now I can't think my way through the material. And trying just sets my head spinning.
It took a decade to find out why that was happening. It took years to come to terms with the idea that it was incurable. And then I did the hardest thing I've ever done. I took all my hopes, dreams, plans, and assumptions and threw them away. I was never going to have the life I'd been on track to make my whole life. I was never going back to school. I was never going to have a career. It just wasn't physically or medically possible. All the more so since, along the way, my delayed sleep phase disorder had developed into full-blown non-24, meaning I've lived the last decade on a schedule that averages out to roughly 25 hours a day. It's hard to do anything normally when your sleep/wake schedule cycles around the clock every few weeks.
So... what to do? Start from scratch. What do I want? What do I have to work with? How can I take what I have and build something worthwhile? I asked around.
I tried going to the Division of Vocational Rehab. It's a government agency whose sole purpose is to find employment for people with serious disabilities. Whatever challenges you face, they'll work with you to make the most of your abilities. They'll train you. They'll give you coping techniques. They'll work with participating employers to accommodate your needs. I went in and saw people in motorized wheelchairs who could hardly move and people with mental disabilities who could hardly speak, and they were being helped to gainful employment with gentle guidance and patient understanding. I talked to the counselors and explained my disabilities. They thought about it. And they told me... I was unemployable. Any one or two of my limits could be overcome, but all of them combined... it was too much even for them.
Then a friend pointed me to the Greyston Bakery. It's the place that, among other things, makes the brownies for Ben & Jerry's chocolate fudge brownie ice cream. Greyston employs homeless people, and their profits go to support the attached shelter. It's a way for people to get a steady job in an understanding working environment. To get back on their feet. To put a life together. To get a resume showing that they're capable of holding a job. To earn enough income to make life possible.
Well, I'm lucky. I have some money. If my body doesn't work and my mind can't handle complex tasks and any kind of exertion exhausts me incredibly quickly and I'm nocturnal half the time and I never know when I'll go for hours or days or months or longer without being able to do much of anything, at least I could build something out of my life's savings. I found friends to work with and we talked things out and the idea evolved to become a restaurant. We would create a workplace that was flexible and understanding. We would open up hiring to people unfairly passed over by most employers. The homeless. People with disabilities. Veterans. We'd train them up. Give them a broad skill set. Shuffle them around in different roles so they could understand the whole operation (which would improve teamwork, look good on a resume, and give us the ability to cover for people who couldn't make their shifts). We'd do everything we could to do things right. Shop locally. Reduce environmental impact. And create a space where customers could relax and be comfortable and put their troubles aside for a while. And, hopefully, in the process, build up a business that could support me so I wouldn't have to depend on the generosity of my family for the rest of my life. And prove that it was a viable business model so maybe others would follow suit.
But, while that was happening, my health was getting worse. Insurance forced me to change my medications to their preferred brands, and side effects from that wiped out 6 months of my life before we got it sorted. Then I ran myself ragged (some of it with good stuff, like visiting friends). Then my sleep quality, which was already only marginally good enough to allow me to function, took a nose dive. Which also turned the gain way up on my already hypersensitive nerves. I couldn't stand to be around people. Even having them quietly existing halfway across the house, on the other side of a closed door, while I was wearing ear plugs in my ears with gun range earmuffs over them, was overwhelming. I could barely sit up. I was so physically exhausted I could hardly draw breath, and the added cognitive requirements to think of what I wanted to say and coordinate my voice box to form those words was beyond me. For months I carried around a sign explaining that I just could not speak out loud.
I went to my most recent sleep doctor. (With all the sleep issues I've had and how stubborn they've been to treat, I've gone through a lot of sleep doctors.) He agreed to do a sleep study. Neither of us expected it to turn up anything new, but I needed to check the possibility because I just could not function as things were.
I went to the follow-up appointment ready to hear that there was nothing to be done. Sleep medicine is still a young field. Treatment options are limited. I've been working with sleep specialists since I was in high school. I've tried everything. I've been to just about every sleep doctor in the state, plus several in neighboring states, plus Boston, plus the Mayo Clinic, plus a subspecialty clinic in Chicago... My CPAP was sure it had the apnea under control. The doctor hadn't even wanted to do the study because it's a major expense and what was it going to show that we didn't know already?
I had come to the conclusion that I had no quality of life left. I couldn't take care of myself. I was so hypersensitive I couldn't stand to be around even my own family. I was so physically exhausted I couldn't even sit up most of the time. I was so mentally exhausted I could barely think. I couldn't do anything but kill time. And if that's all there was left for me, I was done. After decades of thinking about the escape hatch, I was, for the first time, ready to take it. What had stopped me up until then was knowing there was the possibility things would get better. That giving up would mean irrevocably closing off all doors. And, too, there was the knowledge that my death would hurt the people I love. Except that if nothing more could be done for my health then there was no more hope on the horizon. And if I couldn't stand being around anyone then I was no use to my loved ones.
I went to the appointment. I expected to hear that nothing could be done, and if that was the case, I was 100% done with life. But the doctor surprised us both. Despite the CPAP readings to the contrary, my apnea was way out of control. Adjusting the machine could help a lot. There was still a chance.
We did that. And I improved. Somewhat. Barely functional. Nowhere near pre-2014 levels. But enough that I could do something. Sometimes.
The restaurant finally opened. Thanks to a number of factors, it was over budget before we even opened the door. The money that should have gotten us up and running and kept us going for two years including emergency reserves was all gone. I dug deeper and got my family to help. But it wasn't enough. The place closed after only a few months. With my marginal health I only managed to set foot inside a handful of times.
I found myself at a loss. Physically, mentally, and emotionally drained. My Hail Mary attempt to make something with what I had left had failed. And, it turned out, I wasn't going to be able to recover the money I'd spent on it because the lease terms made it almost impossible to sell (despite earlier assurances to the contrary from my lawyer). So I'd lost the bulk of my life savings.
It was around that point that I turned to Twitch Creative. I was spending a lot of time too weary and woozy to do much of anything - sit up, focus, deal with people IRL, etc. I have a friend who broadcasts art, just hanging out with chat while he draws. I'd been going to his channel for a years. I decided to explore what else Twitch had to offer. And I found a whole community of musicians. People who made beautiful music and supported each other and formed one of those little pockets of the Internet that have always been where I've found good friends, cool people, and a place to relax. When I was too sick to do literally anything else I could tune in to live music and find people who were happy to see me but willing to let me come and go or just sit quietly as needed. (That's the best thing about Internet communities.) It helped me fill the long hours, and it held the pain at bay. (There's a difference between recorded music and hanging out with people live. And Twitch has a bunch of amazing artists. Cover versions I find better than the originals and new music they've written themselves just as good, if not better.)
I also found, for the first time in my life, a girlfriend. We seemed very compatible. We worked well together. For a while. It gave me hope that I could build a life. But, after a few months, we realized we worked better as friends.
Since then, my health has declined again. The apnea keeps getting worse and there's less and less that can be done about it. Turn up the pressure and I start having more central apneas. Turn down the pressure and I start having more obstructive apneas. I'm so exhausted I can hardly function most days. I've had very limited interaction lately. Had to back away from most of my social outlets because I've been too sick and weary to be social or to think enough to have a conversation or to focus on whatever it is the community does. I do what I can. But it means limited activity even online and sometimes just falling off the face of the Internet for long periods. I care about politics but I'm too worn out to engage.
The reality is that I'm still stuck. I'm lucky. My family is supportive. They want me and they can afford me. But I turn 40 next year. I live with my parents because I'm not well enough to live alone. I can't depend on them forever. I can't keep doing little more than passing the time. But my health has been on the decline for a long time and I'm over hill. I don't think it's going to get any better.
So... What now?
Stop. Back to square one. What do I want? What do I have? What can I build?
I don't know. I'm out of ideas. Time to ask for help.
Ever since I was a small child (don't worry; I'll be skimming quite a bit) I've had trouble sleeping. I remember being barely more than a toddler and asking Mom how she'd known I was still awake so that I could better learn how to fake being asleep so that I could get her to stop scolding me for lying awake in bed after lights out.
I want to say I was mostly okay back then other than that. Mostly. I was a pretty happy kid. Lucky enough to have a close family and a comfortable lifestyle. I was, however, prone to getting unexplained headaches, stabbing pains in my gut out of nowhere, and bouts of nausea. I also started getting what I've come to call dizzy or woozy spells for lack of a better term. I described the sensation as feeling like there was a tornado inside my skull. I don't have a better way to explain it, and the details aren't important. Just - I got woozy and it was hard to think and no one knew why it was happening or what triggered it. I got sent to a few shrinks, but the problem wasn't psychological, they were never helpful, and I never found one who could actually understand my point of view.
Those symptoms more or less cleared up as I got older. But then I developed new ones. I developed a bald spot in grade school. Then a thyroid disorder. Then diabetes. All due to my own immune system attacking me. I've got a pretty good immune system overall. I get colds and flu and the like about half as often as you ordinary mortals. When I do get sick, I get about half the severity and I get rid of it in about half the time. I could probably count on one hand the number of times I've had a fever. But the flipside is that my immune system gets bored. Or maybe it's more of a situation where it kicks invaders' butts because it's determined to be the thing that kills me and nothing else better get in the way. Or maybe it's just overpowered and too big for my britches. However you want to personify it. Anyway, for whatever reason it's decided to target and either destroy or disable parts of my body that are supposed to be there.
The thyroid was no big deal. Take a pill every morning to replace the hormone my body could no longer produce and I'd be fine. I took diabetes in stride, too. My grandfather was diabetic and he was fine, so what was there to worry about? For the first time, I was able to stick to a healthier diet for more than a week. Because it turns out "Your life depends on it" is a pretty powerful motivator. I learned about nutrition and became more conscious of what I was eating and doing. Having to take shots and stick my fingers was not fun, but I was willing to focus on the bright side.
And the fact was that I was really lucky. Diabetes used to be called the wasting disease. Until insulin therapy was developed, diabetes meant you were going to sicken, fall into a coma, and die, and there was nothing anyone could do about it. My mother's generation was the first in human history to even have a chance at surviving type 1 diabetes, and they had a difficult time of it because the technology to monitor blood sugar was so primitive you just had to rely on educated guesses to try to keep yourself under control. If I was going to become diabetic I was extremely lucky to develop it at a time when the science and technology were there to allow me to treat and control it and thus have a good chance at a normal lifespan. (Just this past week I started on an insulin pump. Technology finally got good enough to make it worthwhile for me. It should hopefully give me even better control with less fuss and a lot fewer needles.)
I was self-conscious about the baldness, though. It was messy, this slowly growing bald patch. And not something you were supposed to have until you were middle-aged. My sisters bought me a propeller beanie. They told me to start a collection of interesting hats. I didn't get the beanie at the time, but I appreciated the thought. Take the embarrassing thing and own it. Have fun with it. Take it as an opportunity to express myself. Focus on the silver lining. The propeller beanie has been a personal symbol ever since. Of how to look at life. As a way to remember to laugh even in the dark, painful times. As a reminder of my sisters' love. It's always there in my avatar.
In middle school, I started having more trouble sleeping. Over the next couple of years, pain and exhaustion became growing problems. The private prep school I was attending didn't want to accommodate my medical needs. We had to fight for everything, and eventually, at the end of freshman year of high school, they said they just couldn't give me what I needed. I was told to go to the local high school instead. Where I was welcomed by the administration with open arms and great sympathy. They went above and beyond what we'd even thought to ask. They assigned me to the best guidance counselor on staff. They listened, understood, and encouraged. They sent tutors to my house. For free. I spent one hour per week per subject working with the tutors and did the week's homework on my own time. More than a few times, the tutor came up to my room and I had class in bed. Several times, we just sent them home because I couldn't cope with even that much. When I graduated, I sat on stage with 12 classmates who had earned straight A's throughout high school, looking out at 800 students I'd never really met.
I don't know what I'd have done without such an amazing system. But I needed it. No matter how much I slept, I was constantly exhausted. On a good day, I could get out of bed if I had a lot of help. Mom would come up to my room. Working with all our combined might, we'd pull me into a sitting position. Take a break. Catch our breath. Sometimes, it was too much and I'd fall over. Sometimes, we'd move on to the next step, hauling me onto my feet. The whole process took at least 15 minutes and left us clutching each other gasping for breath. That was a good day. Often, I'd be stuck in bed, unable to move, for hours at a time. Sometimes the entire day.
I was in constant pain, too. (It's remained ever since. There hasn't been a moment in the last quarter century that I haven't been in pain. These days, with the help of better pain meds, I mostly relegate it to background noise. The pain is there, but I can more or less ignore it. Except for when it spikes in some joint or muscle or something. Or when something sets it off. Bright lights, loud noises, high pitched noises, certain smells, a friendly pat on the back, etc.) Back then, it was new to me and more severe and there were no meds for it. I was lucky to even be diagnosed. It took a lot of work to find a doctor who had any idea what we were dealing with, but we happened on one who just happened to have developed one of the first recognized protocols to diagnose fibromyalgia. Unfortunately, medical science still hadn't figured out how to treat it.
So, like I said, I was constantly in some pain. Just sort of a general miasma of aches and pains and pins and needles. Then I'd get a stabbing pain in my knee out of nowhere. Sometimes it would go away after a few seconds. Sometimes a few minutes. Sometimes a few hours. And then, just as randomly, I'd get a different pain in my ankle. Or my hip. Or the back of my shoulder. Or my elbow. Or my eye. They'd come and go as they pleased, sometimes overlapping sometimes not.
Even after I was out of bed, dressed, and downstairs, it was not uncommon to spend several hours flat out on the couch, physically exhausted, with every nerve in my skin feeling like it was on fire. Walking was difficult. I learned to lean against walls. I developed paths across the house. Slide along the back hall, stumble through the open space to clutch the door of the oven, catch my breath, push off to the center island of the kitchen, back across to the pantry, over to the far counter... (I told my sister I needed to keep up my upper body strength so if I started to fall I could catch myself. She laughed. She didn't understand.) I really should have started using a cane back then, but the stigma kept me from it. How embarrassing would it be? Wouldn't people think I was just calling attention to myself, faking being the dreaded "disabled"? Wouldn't they stare at the kid with the invisible illness shambling along with a cane like an old man? Stupid to have worried about such things, or to have put those worries above my own physical needs, but it's how our culture thinks.
Junior year of high school is when the woozy spells came back. I'd actually completely forgotten that I'd had them before. But suddenly I found that I was getting woozy a lot. Especially when I tried to apply myself mentally. To concentrate on anything. To do school work. My head would get foggy and start to spin, and trying to think felt like pushing the electrical impulses through cotton balls. Except that if I kept pushing it would become an impenetrable wall. It lasted for 9 months, and then cleared up. From Thanksgiving through the summer, I couldn't think. And then I got better. Took the same classes over and breezed through them.
Still, it was emotionally draining. Being exhausted all the time. Being in pain all the time. Never knowing when the pain would get really bad or how long it would last. Being unable to move. Having to deal with all the problems caused by adults who didn't understand what was going on and had some very misguided ideas about how to help. Or didn't want to help at all. Feeling that I'd be stuck, in agony, unable to care for myself, for quite possibly the rest of my life.
It broke me. I'd been teaching myself to meditate in order to deal with it all, and I just hit a point where I felt my center shatter. Gone. Blasted to pieces. I spent days on the couch, unable to move, unable to talk, unable to get a handle on anything. (From the outside, it was hard to notice because it was already fairly normal for me to go for long periods unable to move or speak.) Fortunately, this was in the midst of puberty, at exactly the time when you're naturally supposed to be changing and reforming yourself. I rebuilt my mind from the ground up, on a solid foundation of zen.
Accept what you can't change. Find a way to live with it. Work to improve what you can change. Let the pain go. Let it flow through you and out. Don't waste your energy getting angry. Choose what's worth getting worked up over. The times where it's appropriate and productive to spend that energy. On the flipside, never pass up an opportunity to laugh. Savor each good thing, no matter how small or transitory, on its own terms, to the fullest. Take the times of joy and embrace them wholeheartedly, even if only for a moment. Just stop and appreciate the beautiful sunset or the pretty flower or the silly thing the dog is doing or whatever it is, and forget about everything else for a second.
That's guided me through quite a bit over the years. And I do believe that meditation is a vital life skill. It teaches you to recognize your emotional reactions and take a step back from them. You can't help what your subconscious throws at you, but you can choose what to do with it. Hold on to it, feeding it more of your energy, or let it go? You can teach yourself to make that a conscious choice, and that can change everything about how you deal with stressful or upsetting situations.
But even with all those mental tools, it was a hell of a lot to deal with. And it's hard to keep up a positive attitude when you're completely exhausted. Sometimes I could laugh at the pain. Sometimes I was just trapped with it, weary and hopeless. That was when I first started thinking about ending it all. Since then, those thoughts have never been far away. That there's an escape hatch if I really need it. That taking it is tempting. Whenever I get too tired to deal, it comes bubbling back up.
I decided that since my body wasn't working, I'd focus on what was. I'd make the most of my mind. And I quietly made a deal with myself - if I could get into a good college, that meant I had a fair chance to make something of myself. If not, then I could think about whether to give up. I got into MIT.
The first couple of years at MIT were amazing. It's so freeing, living amongst your own kind. I felt myself opening up in ways I'd never even realized I was holding back, because the people around me were just as weird. We valued that together.
The school itself was very accommodating. They worked with me to schedule the classes I'd be taking in the late morning or afternoon so that I could make it. If the class was too early for me, they'd video tape it so I could review in my own time. Despite crowding issues, they assigned me to a dorm on campus close to my classes that had a dining hall inside. They were sympathetic to my needs and worked with me to help me make the most of what I could do.
I did well there. And, as I started kicking around ideas for insulin pumps with friends in my dorm, I realized that that was what I wanted to do with my life. The best, happiest, most satisfying, most rewarding feelings for me have always been associated with making life better for the people around me. Making someone happy. Helping them solve or cope with a problem. Righting some wrong. Healing some injury. Just getting a laugh. Ever since grade school, I've defined the purpose and worth of my life in terms of how much it could be said that the world was a better place for having me in it. My father is a doctor, and that's always been inspiring to me. I've got the mindset and inclination to be a mechanical engineer (and not the stomach for med school). Put them together, and I could be a biomedical engineer. Why was it that the kidney (for the most part a simple osmosis filter) is the size of your fist but the best we could do to replace it was a machine the size of a refrigerator that couldn't do the job nearly as well? I would study engineering and biology and get a job designing an artificial kidney. I'd make an insulin pump that could read your blood sugar, follow the trends, calculate how much insulin you needed, and deliver it automatically. And, since modern insulin is produced by genetically modified yeast, I'd take a look at creating a way to host a colony of them inside the pump so they could produce insulin to refill the reservoir. I couldn't be a doctor, but I could make medical equipment that would save and improve lives.
... And that's when the woozy spells came back. I got more and more tired until I couldn't keep up with classes at all. I went home. I got diagnosed with sleep apnea. (On top of the other sleeping disorders I'd been diagnosed with in high school - delayed sleep phase disorder, fibromyalgia, chronic fatigue. Not to mention that the diabetes could interfere with my ability to sleep if my blood sugar control slipped. And, it turns out, my thyroid dosage had gotten out of control, leading to disturbed sleep and just enough weight gain to trigger the apnea.) I got a CPAP. I caught up on sleep as best I could. (Already, I had a pattern. Start the semester strong. Get gradually more tired as it went on. Start sleeping in more on weekends to make up for it. Push through finals. Hibernate through winter break, which was just enough to get me back on my feet for the spring. Get gradually more tired as that went on. Push through finals. Come home. Crash. Hibernate through the summer. Which was just enough to get me caught up before starting fall term.) I was ready to go.
... And that's when the woozy spells came back. Again. At first, I thought it was going to be like junior year of high school. They'd resolve themselves in time and I could get on with my life. It didn't go that way. I pushed myself as hard as I could. I took a light course load. I exerted myself for absolutely nothing non-essential. I slept literally 12 hours a day. And within a matter of weeks I was utterly and completely exhausted. To the point that when Mom picked me up I had roughly the same level of awareness as when they'd drugged me to remove my wisdom teeth. After about 2-3 feet, the world just became hazy. I could understand simple commands like a dog. I could maybe reply in short phrases.
I spent a decade looking for answers. Seeing neurologists and rheumatologists and every specialist we could think to look for. Getting brain scans. Taking cognitive aptitude tests. Working with cognitive rehab therapists. Trying different treatments (including various "alternative" medications and therapies). Until, finally, when I went to the Mayo Clinic, they told me that as long as I was there to see the neurologist I should stop by the fibromyalgia clinic. Where they causally mentioned that, oh yes, that's a common symptom. They call it "fibro fog." See, fibromyalgia can basically be summed up as having hypersensitive nerves. That's why I have all this pain. That's why I can easily be overwhelmed by too many noises. That's why I'm so sensitive to light and sound and smell and touch and pretty much everything. That's (part of) why I have such poor sleep quality (too much sensory activity impairs my ability to reach and stay in the deeper, restorative sleep stages). And that's why my mind fell apart. My brain just got overloaded with way more signal than it was ever meant to handle. And also I'm physically exhausted. And there's really nothing to be done about it.
I've lost most of my higher processing power. I used to multitask as naturally as breathing. Talking to someone? I'd listen to them, process what they were saying, think of what I'd want to say back, translate those concept into words, check that those words would actually come across the way I'd meant them, revise them as the running list of what I wanted to say was updated, and check it all over for grammar and other errors. Each as its own parallel process working independently along the assembly line. Relaxing with friends? I'd drive my own Mario Kart, plan out what I wanted to do with the upcoming turns, keep track of where everyone else was, give directions to the friend who kept getting lost, keep track of every turtle shell fired even when off screen ("You're going to get hit in... 3... 2... 1..." *wham*), chat with friends, keep an ear out for interesting snippets of conversation down the hall, and maybe idly muse about something else. Now I just don't have the processing power to do any of that. I've had to completely relearn how to think and talk. I lost a few friends because I basically had no functioning filter anymore to say "Are you sure you want to say that? How would it sound to hear that?" That process had just been shut down and it was a long time before I understood it had happened. And, more to the point... I taught freshman calculus at MIT for a semester. Now I can't think my way through the material. And trying just sets my head spinning.
It took a decade to find out why that was happening. It took years to come to terms with the idea that it was incurable. And then I did the hardest thing I've ever done. I took all my hopes, dreams, plans, and assumptions and threw them away. I was never going to have the life I'd been on track to make my whole life. I was never going back to school. I was never going to have a career. It just wasn't physically or medically possible. All the more so since, along the way, my delayed sleep phase disorder had developed into full-blown non-24, meaning I've lived the last decade on a schedule that averages out to roughly 25 hours a day. It's hard to do anything normally when your sleep/wake schedule cycles around the clock every few weeks.
So... what to do? Start from scratch. What do I want? What do I have to work with? How can I take what I have and build something worthwhile? I asked around.
I tried going to the Division of Vocational Rehab. It's a government agency whose sole purpose is to find employment for people with serious disabilities. Whatever challenges you face, they'll work with you to make the most of your abilities. They'll train you. They'll give you coping techniques. They'll work with participating employers to accommodate your needs. I went in and saw people in motorized wheelchairs who could hardly move and people with mental disabilities who could hardly speak, and they were being helped to gainful employment with gentle guidance and patient understanding. I talked to the counselors and explained my disabilities. They thought about it. And they told me... I was unemployable. Any one or two of my limits could be overcome, but all of them combined... it was too much even for them.
Then a friend pointed me to the Greyston Bakery. It's the place that, among other things, makes the brownies for Ben & Jerry's chocolate fudge brownie ice cream. Greyston employs homeless people, and their profits go to support the attached shelter. It's a way for people to get a steady job in an understanding working environment. To get back on their feet. To put a life together. To get a resume showing that they're capable of holding a job. To earn enough income to make life possible.
Well, I'm lucky. I have some money. If my body doesn't work and my mind can't handle complex tasks and any kind of exertion exhausts me incredibly quickly and I'm nocturnal half the time and I never know when I'll go for hours or days or months or longer without being able to do much of anything, at least I could build something out of my life's savings. I found friends to work with and we talked things out and the idea evolved to become a restaurant. We would create a workplace that was flexible and understanding. We would open up hiring to people unfairly passed over by most employers. The homeless. People with disabilities. Veterans. We'd train them up. Give them a broad skill set. Shuffle them around in different roles so they could understand the whole operation (which would improve teamwork, look good on a resume, and give us the ability to cover for people who couldn't make their shifts). We'd do everything we could to do things right. Shop locally. Reduce environmental impact. And create a space where customers could relax and be comfortable and put their troubles aside for a while. And, hopefully, in the process, build up a business that could support me so I wouldn't have to depend on the generosity of my family for the rest of my life. And prove that it was a viable business model so maybe others would follow suit.
But, while that was happening, my health was getting worse. Insurance forced me to change my medications to their preferred brands, and side effects from that wiped out 6 months of my life before we got it sorted. Then I ran myself ragged (some of it with good stuff, like visiting friends). Then my sleep quality, which was already only marginally good enough to allow me to function, took a nose dive. Which also turned the gain way up on my already hypersensitive nerves. I couldn't stand to be around people. Even having them quietly existing halfway across the house, on the other side of a closed door, while I was wearing ear plugs in my ears with gun range earmuffs over them, was overwhelming. I could barely sit up. I was so physically exhausted I could hardly draw breath, and the added cognitive requirements to think of what I wanted to say and coordinate my voice box to form those words was beyond me. For months I carried around a sign explaining that I just could not speak out loud.
I went to my most recent sleep doctor. (With all the sleep issues I've had and how stubborn they've been to treat, I've gone through a lot of sleep doctors.) He agreed to do a sleep study. Neither of us expected it to turn up anything new, but I needed to check the possibility because I just could not function as things were.
I went to the follow-up appointment ready to hear that there was nothing to be done. Sleep medicine is still a young field. Treatment options are limited. I've been working with sleep specialists since I was in high school. I've tried everything. I've been to just about every sleep doctor in the state, plus several in neighboring states, plus Boston, plus the Mayo Clinic, plus a subspecialty clinic in Chicago... My CPAP was sure it had the apnea under control. The doctor hadn't even wanted to do the study because it's a major expense and what was it going to show that we didn't know already?
I had come to the conclusion that I had no quality of life left. I couldn't take care of myself. I was so hypersensitive I couldn't stand to be around even my own family. I was so physically exhausted I couldn't even sit up most of the time. I was so mentally exhausted I could barely think. I couldn't do anything but kill time. And if that's all there was left for me, I was done. After decades of thinking about the escape hatch, I was, for the first time, ready to take it. What had stopped me up until then was knowing there was the possibility things would get better. That giving up would mean irrevocably closing off all doors. And, too, there was the knowledge that my death would hurt the people I love. Except that if nothing more could be done for my health then there was no more hope on the horizon. And if I couldn't stand being around anyone then I was no use to my loved ones.
I went to the appointment. I expected to hear that nothing could be done, and if that was the case, I was 100% done with life. But the doctor surprised us both. Despite the CPAP readings to the contrary, my apnea was way out of control. Adjusting the machine could help a lot. There was still a chance.
We did that. And I improved. Somewhat. Barely functional. Nowhere near pre-2014 levels. But enough that I could do something. Sometimes.
The restaurant finally opened. Thanks to a number of factors, it was over budget before we even opened the door. The money that should have gotten us up and running and kept us going for two years including emergency reserves was all gone. I dug deeper and got my family to help. But it wasn't enough. The place closed after only a few months. With my marginal health I only managed to set foot inside a handful of times.
I found myself at a loss. Physically, mentally, and emotionally drained. My Hail Mary attempt to make something with what I had left had failed. And, it turned out, I wasn't going to be able to recover the money I'd spent on it because the lease terms made it almost impossible to sell (despite earlier assurances to the contrary from my lawyer). So I'd lost the bulk of my life savings.
It was around that point that I turned to Twitch Creative. I was spending a lot of time too weary and woozy to do much of anything - sit up, focus, deal with people IRL, etc. I have a friend who broadcasts art, just hanging out with chat while he draws. I'd been going to his channel for a years. I decided to explore what else Twitch had to offer. And I found a whole community of musicians. People who made beautiful music and supported each other and formed one of those little pockets of the Internet that have always been where I've found good friends, cool people, and a place to relax. When I was too sick to do literally anything else I could tune in to live music and find people who were happy to see me but willing to let me come and go or just sit quietly as needed. (That's the best thing about Internet communities.) It helped me fill the long hours, and it held the pain at bay. (There's a difference between recorded music and hanging out with people live. And Twitch has a bunch of amazing artists. Cover versions I find better than the originals and new music they've written themselves just as good, if not better.)
I also found, for the first time in my life, a girlfriend. We seemed very compatible. We worked well together. For a while. It gave me hope that I could build a life. But, after a few months, we realized we worked better as friends.
Since then, my health has declined again. The apnea keeps getting worse and there's less and less that can be done about it. Turn up the pressure and I start having more central apneas. Turn down the pressure and I start having more obstructive apneas. I'm so exhausted I can hardly function most days. I've had very limited interaction lately. Had to back away from most of my social outlets because I've been too sick and weary to be social or to think enough to have a conversation or to focus on whatever it is the community does. I do what I can. But it means limited activity even online and sometimes just falling off the face of the Internet for long periods. I care about politics but I'm too worn out to engage.
The reality is that I'm still stuck. I'm lucky. My family is supportive. They want me and they can afford me. But I turn 40 next year. I live with my parents because I'm not well enough to live alone. I can't depend on them forever. I can't keep doing little more than passing the time. But my health has been on the decline for a long time and I'm over hill. I don't think it's going to get any better.
So... What now?
Stop. Back to square one. What do I want? What do I have? What can I build?
I don't know. I'm out of ideas. Time to ask for help.