Tag: Disability

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Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

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Preparedness

Day 241 and Other People’s Disasters

Hurricane Ida made landfall in Louisiana today on the 16th anniversary of Hurricane Katrina. Watching disasters in other cities has the sad side effect of making me go through my emergency gear. After living through Hurricane Sandy in New York I felt it a civic obligation to be prepared for emergencies. Ready yourself so you can help others is my philosophy of prepping.

I spent the morning doing a complete overhaul of my go-bags pharmaceutical set up. It has been a while since I had rotated out some medications and I wanted to add in more drugs for situations where it might be some times before we could reach a hospital or medic. Worst case scenarios crossed my mind.

Disasters often get portrayed as these dramatic events but more often it’s just neighbors helping each other through a bad time. That means I stock a trauma kit along with shit like anti-diarrhea drugs and cortisone. More likely to be itchy and have an upset stomach than a trauma bleed so prepare for the basics first.

But I’ve had the basics down for a while. I’ve been prepping now for several years with increasing seriousness. So sometime this year I decided to prepare for worse. I thought it wise to have a stash of prescriptions for situations where doctors aren’t coming, maybe at all, including antibiotics, steroids, antihistamines, NSAIDs, caffeine, and an array of drugs that are, well, controlled substances and I swear I have legitimate prescriptions for all of them and am monitored by several physicians who work in coordination. But you know, the good stuff.

I say that as if it is remotely recreational to break a leg and require an opioids or be suffering from shock. If someone is having a panic attack because their world is coming down around them I think fuck it this is why it’s good to have an Ativan. No judgements.

Plastic baggies filled with medications.

Disaster hits a little different when you have a chronic disease. You have to think about scenarios where you are actually in the most vulnerable groups. That those worst case scenarios you see on TV could actually happen to you. Shit hitting the fan would actually mean your life if you didn’t prepare. And so I’ve scrapped together a small pharmacy over the past few years. I’ve rationed doses and asked for extra refills. I’ve squirreled away a dose here and there between insurance coverage and extra days. It’s actually quite hard to be able to have as many additional drugs as the CDC recommendation for an emergency. No seriously they suggest 7-10 days of extra medication. Can you imagine most Americans affording that? It’s a fucking slow moving American tragedy we are told how to survive but hobbled in being able to enact any of what the Fed suggest. It’s no wonder Americans don’t trust the government for anything.

The pandemic has solidified this sad truth for me. So I’ve learned new skills. I worry that it’s hard to rely on community when most communities are struggling already. It’s an impossible ask. And so we are forced into another circle of individualism and personal responsibility because really what other option can you imagine having. Because next time it won’t be some other persons disaster on the TV. Next time it might be yours.

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Chronic Disease

Day 240 and Working for The Weekend

I forgot how great it feels to be so enthusiastic about work that it absorbs every viable hour of your weekend. I used to feel this way about work all the time, but as I’ve struggled to adapt to working with a chronic illness some of the joy got stripped away. It became all about juggling self care, rest and moderation. And I hadn’t found my balance yet.

It isn’t so much that work didn’t hold my attention, on the contrary, rather I became afraid of letting myself get too absorbed. If I overdid it and missed a medication or a meal or even a sign that I needed a break I’d find myself in pain. I’d crash if I wasn’t careful to watch my time and energy.

I would get into awful start stop cycles that gave me the worst of both worlds. I struggled to sustain a flow state because I was constantly vigilant for needing to take care of myself. And I’d beat myself up when I needed the rest which made it even more challenging to sustain the health I felt guilty for not having.

“ I feel bad. I’m going to take today off. Ok but make sure you feel so guilty about it you don’t get any real rest.” Dino Comics

But something has shifted for me recently. The fear and doubt that has hung over my attention is lifting. I am beginning to trust that I can work and break without hurting myself. I can accept breaks more readily than I used to. I don’t feel as if I need to be as vigilant to watch for signs of hurting my body.

Today I was able to enjoy multiple flow states. I worked with a founder on their fundraise. I worked on some writing for my fund Chaotic. I briefly felt overwhelmed, and while I did panic for a moment I stopped and rested. I asked for some help. The problem got solved. And now I feel satisfaction at a good work say. No pain. No crash. No exhaustion. No guilt for taking breaks. Just the quiet joy of having achieved my goals for the day.

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Emotional Work

Day 231 and Afraid of Feeling Fear

Being sick has left me with some scars that I am working through. Currently I’m afraid of pushing myself to my limits. I don’t know it for a fact but I fear some of the severity of my illness was tied to the overwork that is required when working in startup life. So now I’m afraid of overdoing things physically. I’m struggling to even set the boundaries of what 50% capacity would look like.

This isn’t the first time I’ve struggled with the question of my capacity. I’ve been a fan of what I call the “Gattaca” method since I was a child. “Never save anything for the swim back.” But now having experienced the worst case scenario of being unable to work for two years I’m gun shy. That common knowledge says failure “is never as bad as you imagine” is bullshit. Losing two years of my life was fucking awful. What if next time I give my all and I lose more than two years? I’m running myself in circles with this fear without any indication that it will become reality.

When I was a teenager I rode horses. I liked cross country eventing where you jump over obstacles on an open field. It’s a bit dangerous. That’s how Christopher Reeves got hurt. I had plenty of spills but it never really upset me. I always got back on the horse. I wanted to become more competitive so bought a thoroughbred who was being retrained from being a racehorse. I thought I was a talented enough rider for the job. I wasn’t.

He was a high strung panicky creature and threw me into a wall. I cracked my helmet, blacked out briefly and was diagnosed with a concussion the next day. Despite the severity of the fall, I got back on the horse immediately. I was afraid of being scared. So I pushed through.

Turns out I should have just felt the fear. I should have gone to the doctor, allowed myself to recover and not pushed through it. I never fully recovered my nerve about that concussion. I just slowly circled the drain emotionally and my fear won over my enthusiasm for rising. I never went back to competing in eventing. Instead of working through my fear I chose to ignore it. That turned out to be a sure fire way to let fear win in the end.

I don’t want to be afraid of being scared. I want to embrace my feelings and their origins. I want to come to terms with them. Because unlike horseback riding, I intend to keep working.

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Chronic Disease

Day 221 and Somnambulance

Around 1pm today I was overcome by a kind of drowsiness. I couldn’t seem to shake the feeling so I lay down. For the past 5 hours or so I’ve been in a not quite waking not quite sleeping state. I wasn’t dreaming but I couldn’t force wakefulness on myself either.

I had to crawl my way into just enough consciousness to call and text my therapist to let her know I wouldn’t make my session or group therapy. Had I not seen proof I left a message when I woke up I would not have been surprised to learn that I had been somnambulant texting. I barely recall managing the effort.

I had a medical procedure a few days ago so I am likely still recovering from the stress my body endured. But I’ve felt reasonably energetic. I was entirely unprepared to fall into a liminal state between consciousness and sleeping for most of my day. I could tell I wasn’t fully awake but I couldn’t quite tell if I was asleep.

I kept trying to force wakefulness upon myself only to find my mind falling further away from the effort. It felt like some horror movie effort where a character has been put under but is still aware of what is happening to them. I didn’t love it. But clearly I needed the sleep. I was just barely able to get myself up to take my evening medications. Certainly wasn’t what I was expecting out of my Monday but so it goes.

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Chronic Disease

Day 218 and Brain Fog

Being physically sick sucks. But having your mind take a turn for the worse can be worse. I’ve written about being in the grips of pain and the fear I have of exhaustion, but I don’t think I’ve written about what it feels like for one’s mind to struggle.

Whenever I read about recovering from covid and it’s challenges I can’t help but notice how often brain brain gets mentioned. The Lancet published a study of over 80,000 people that offers some concerning evidence that Covid has significant impacts on brain function.

“Finer grained analysis of performance across sub-tests supported the hypothesis that COVID-19 has a multi-domain impact on human cognition.”

If you don’t rely on your mind to make a living maybe the prospect of losing cognition isn’t as scary. Though I doubt it. I’d argue that the primary fear of losing one’s mind has much more to do with feeling one cannot communicate as effectively with one’s loved ones. We tend to get used to our cognitive capacity and finding it lacking can be quite terrifying.

I’m quite lucky that my own disease, ankylosing spondylitis, messes with my spine and not my mind. I’ve generally retained my sharp mind even if my body occasionally fails me. But I’ve still felt the frustration and confusion that comes with reaching for understanding and problem solving and coming up short.

Occasionally if my pain is bad enough my mind feels like it slows. It’s almost imperceptible but it’s still there. Like I am grasping for something that’s just an niche or two out of place on a shelf. You reach expecting it to be there and startle with confusion when it’s not. You adjust and get your grip and can carry on, but you are frustrated as you felt sure that the extra inch wasn’t supposed to be there.

Lucky for me this is fairly rare and easily solved with an NSAID. Once acute pain recedes my thinking is quick again. But what if it wasn’t? How would I learn to cope with that sense that my thinking wasn’t as clear as normal? Sure, maybe aging will do me in eventually, but I wouldn’t chose anything that could slow my mind.

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Chronic Disease Internet Culture

Day 217 and Reasonable Accommodation

Accessibility is an interesting topic for Americans as we pride ourselves on being the land of opportunity. Every citizen has the right to life, liberty and the pursuit of happiness. Of course, in practice the outcomes of this pursuit are wildly unequal. But we all generally agree that every American should be given the same chance to pursue it. We want the American dream to be accessible. Equal access matters.

I feel this particularly strongly because I’m disabled. I have an autoimmune immune condition called ankylosing spondylitis. My immune system attacks my body and it manifests in occasionally inconvenient symptoms like swelling in my spine that makes walking painful.

Thankfully I was born an American and I live in the twenty first century. We’ve got modern medicine. So my life can basically be normal thanks to immunosuppressant drugs. If you didn’t know my medical history (ok that’s unlikely as I write about it, like, constantly) you couldn’t tell I’m disabled. I’ve had absolutely equal opportunity to pursue life, liberty and happiness. I’m deeply patriotic as a result. No one treatments me like a second class citizen.

But I get the impression that some people might try. Invisible disabilities have some upsides, you get treated normally, but the downside is you can see the kind of unconscious discrimination and bias people have because they’ve got no useful signifier like a wheelchair which reminds them to keep their mouth shut around you. Which means I hear a lot more of what people really feel. For which I’m grateful. I’d rather know if you think I’m less equal than you.

Watching able body healthy folks discuss vaccines has been a real trip for this reason. The sick and the elderly are ostensibly the reason we engaged in efforts like stay at home orders and now vaccinations and masking. We’ve made reasonable, and occasionally unreasonable, accommodations for the sake of our most vulnerable. The vast majority of Americans did what they could.

Now the accommodations are becoming more more permanent and less inclusive. And I wonder if they are reasonable accommodations for everyone. New York City is instituting vaccine requirements for indoor dining, cultural venues, and indoor public places.

People are going to get a really clear message: if you want to participate in our society fully, you’ve got to get vaccinated. It’s time,” NYC Mayor Bill de Blasio said at a press conference.

I want to participate in society fully. But getting vaccinated hasn’t been easy for me. I am one of the small number of immunosuppressed Americans for whom the vaccine either isn’t an option at all, comes with significant risks, or doesn’t work at all. It’s a misery to not be able to take advantage of one of science’s most significant achievements. I want to be successfully vaccinated very much. It may be possible but it’s costs are very high for me.

Now I grant I have no intention of going to a concert in Manhattan but it hurts to see people casually suggesting that all people who remain unvaccinated did so as a personal choice. It’s not really a great choice pursue a destabilizing course of treatment that may take away my ability to walk and cause significant pain. But sure. Call it a choice. I wouldn’t wish it on you.

People like DeBlasio do not seem to recognize that the message being sent is I can particulate fully in society or I can be one of those dangerous anti-society anti-vaxxers. It’s “one of us or one of them” and the “them” are bad guys. I’m not anti-vaccine. I think it’s generally safe for the vast majority of people and I hope that if you are healthy that you make the choice to get one. But not all Americans are so lucky.

So I beg you to reconsider your choice of words when discussing how much you disdain the unvaccinated. How it’s your choice to be an outcast of society. And don’t phrase policies like DeBlasio did. I deserve to be a part of society too. You made reasonable accommodations for people like me. Saying that I’m now a societal outcast is exclusionary. It’s pretty fucking in-American. Find a damn reasonable accommodation maybe.

And sure I’m not going to be attending anything at Madison Square Garden. But don’t legislate that into a final demarcation. Don’t caste me out forever. It’s not like I don’t know it isn’t safe for me. But maybe one day I’ll feel like it’s worth the risk to dine inside with friends. Maybe that’s an unhealthy impulse to take such a ridiculous risk, but so is drinking and eating fried foods and I’m allowed to make those choices without legislative interference. If I wear a mask and show a negative test maybe Bill De Blasio can see it in his heart to let me chose my own risks. But don’t for the love of America say that the unvaccinated can’t participate in society. I promise you will not like where that leads. A second class citizenship has never ended well.

Categories
Biohacking Emotional Work

Day 211 and Laughter

I miss being able to enjoy time out in the world. You know that feeling when you’ve spent the last two hours at your favorite bar with your friends just talking about nothing? The ease that you feel being with your community and enjoying being together? The casual camaraderie and easy laughter that comes from no expectations time together has been lost to many of us. I miss it.

It doesn’t seem like those days are coming back for some of us in the near future. If I give too much thought to the impact of things like the pandemic I think I just spike my cortisol. That’s a stress hormone. The stress of reactivity is killing all of us. Constant panic over floods, heatwaves, outbreaks and all their downstream effects is overwhelming our capacity to live. And yes, granted a more globalized war with a changing climate is capable of killing us. But we don’t have to let futility do us in early. We can find our way into solutions. But only if we stay alive to do it.

I’ve been coping with apocalyptic nihilism by shitposting on Twitter. Yes I realize this is a popular upper class pundit class past time. I’ve got some self awareness. But it’s also the only thing that mimics being out socializing with your friends. And I think that’s worth a lot. Shitposting is good for the soul.

You don’t have to shitpost, but if you cannot find a way to lower your stress response, as we say in crypto, ngmi. Everything may be going to hell but you aren’t there yet. You’ve got a life to live, people to love and who love you, and a chance to be happy.

Fuck cortisol. It’s not good for you. That’s some metabolic poisoning eating away at you and you chose to let it kill you. There is no reason to give yourself unnecessary stress. Some stress is good. It makes you resilient. But stuff you opt into? Fuck that noise it’s only going to make you sick.

And despite whatever family trauma circuit you may be playing out in your head, YOU DO NOT DESERVE THAT SHIT. No I’m seriously disease and suffering aren’t a moral good. Everything might be rough but you need to find a laugh. It might just save your life.

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Chronic Disease Emotional Work

Day 209 and Synthesis

The only downside of spending a day intaking a significant body of knowledge is that it’s nearly is that it’s nearly impossible to do synthesis on it at the same time. I suppose this holds true for new emotions as well. Synthesis and understanding takes time.

I’ve been on a tear working through how I feel on a number of topics just as I’m trying to ingest a new body of knowledge. I’ve got some inklings of where I will net out on all of it but it’s still a gut feeling. Any capable articulation that will be external to myself will require some synthesis. I can’t tell you what I’m on about as I don’t yet know.

And while I’ve set personal deadlines for continuous daily writing I cannot simply apply willpower to everything. In other words, I can force myself to write today it’s not possible to force sense on it. The synthesis hasn’t arrived even if the force of daily habit has.

It’s not that I’m admitting defeat on willpower, I’m sure I’ll be able to push my understanding over time. But expecting it today is probably a lost cause. The spirit may be willing but my wetware is fragile.

Fragility is of course one of my life companions this year. I’ve had to face that life is cheap and it’s simply not possible to worry about everyone. I have to sacrifice some of my own goals in order to keep myself alive. I suppose it’s not always a choice, except in that I’ve chosen to live and not die. That’s a choice.

But how I fortify and defend myself against the realities of biology, cultural frustration and freedom is in the end up to me. The pandemic has brought this home in a particularly acute way. Forced choices on us all, but particularly the vulnerable.

But I suppose I’m done trying to protect myself and gain ground. It’s going to be one or the other. It is time to take some risks even knowing that it will harm me. I’m recalculating what kind of destabilizing my body can take in the face of societal exhaustion. But the emotional synthesis of knowing consequences and having made a choice in freedom isn’t done in a day.

Categories
Chronic Disease Politics

Day 199 and Vaccination

I’m not vaccinated against covid-19. It’s not a political stance. I’d very much like to be vaccinated and have it work. But I’m in the small category of folks for whom vaccinations do not produce antibodies. And to make matters worse, the only way I could “potentially” produce the antibodies in response to a vaccine is so destabilizing my doctors don’t want me to pursue it right now. So before being super smug about how this is a pandemic among the unvaccinated and it’s a “choice” for a small portion of us it isn’t.

I take immunosuppressants because my immune system has gotten some dumb ideas about attacking my body. I have had anaphylaxis a dozen times and allergies aren’t even my primary medical issue. That would be swelling in my spinal column. It was bad enough at one point that I couldn’t walk.

I’ve tried a lot over 2 years since it was diagnosed to keep it controlled. I was on chemotherapy drugs for about six months (I don’t recommend methotrexate at all and not just because it’s mustard gas). I was on high dose steroids long enough to develop a chemical dependency on them that required supervised titration down. Plus it made me fat as fuck and that annoyed me. Eventually my doctors settled into the suppressant category known as IL, or interleukin, inhibitors.

These drugs fucking rock and gave me my life back. Thanks to them I can live basically like a normal person with the exception that I need to be careful as I’m more susceptible to infection. We are quite literally suppressing my capacity to develop immune responses. You kinda need immune responses for vaccines to work.

Immunosuppressants and vaccines don’t really mix. I had to go off them to get a flu vaccine and I relapsed so badly my doctor was like well I guess it’s going to be masking for you in the future during flu season. About 5 months later the pandemic hit. Fucking hilarious.

If I go off my IL inhibitors eventually I’ll relapse. It’s possible I can make myself less prone to inflammatory responses but it might all be bullshit. I go to a stupid amount of trouble and money and engage in a lot of woo to make the rest of my health as strong as possible so I am not as prone to inflammatory responses. Maybe it will work. But quite frankly I’m not interested in finding out right at this moment if I can live without the drugs that saved my life.

Why does all this matter? Because you need to be off of immunosuppressants in order to have a vaccine work. And I’m not fucking going off my suppressants. Nor is it recommend except in stable cases.

It takes three weeks to dose them out of my system, three weeks off them before a vaccine of any sort would have a chance of generating an antibody response, and then another 3-6 weeks of injections get back to a baseline of stability. (their effects tend to be cumulative). And that’s because I would only be able to get one stick J&J as I happen to be allergic to the PEGs that stabilize mRNA vaccines, so I have to do one and done. But that’s an aside.

Basically I’m looking at 3 months of intensive inflammation that will cripple me just to get a vaccine. Because of a host of other complicating factors my primary caregiver physician and rheumatologist have recommended against me getting the jab. It will be hugely destabilizing to me (which is its own risk) and even if I get it, we just don’t know if I’ll produce enough antibodies while I’m on the suppressants. It could be for nothing.

It’s basically lose lose for me. It won’t work if I’m on the drugs and if I’m off the drugs I’ll be so sick it’s a crap shoot if I need to be hospitalized for going off them. Which ironically would put me at even higher risk of covid exposure. My doctors do not love this.

With the Delta variant on the rise I don’t know if it’s actually worth destabilizing me or if it’s a risk worth taking. It’s a crap shoot. I isolate. I mask. We didn’t want to fuck me up. It feels damned if I do and damned if I don’t. And I feel super alone in this status as everyone is acting like it’s a choice. And yes it is my body and my choice. But what choice would you make? My doctors aren’t sure either.