Tag: Disability

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Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

“Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.

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Emotional Work Medical Politics

Day 765 and Kobayashi Maru for Women

I woke up to a totally off handed tweet of mine going viral. I had done some googling on the cost of pregnancy surrogacy and learned that it would probably cost $200,000 a pop. I’d never really considered the cost as to be honest as I didn’t think I’d be having children that way. The responses to the tweet left me feeling despondent.

Five years ago I did IVF to freeze embryos (and eggs too) and it kicked off a massive health crisis that I only feel I’ve gotten under control recently. It took everything from me. I was on medical leave, I sold my startup, and my marriage got to learn what “in sickness and in health” really means. It was awful. I am crying just remembering.

It took years to get healthy again. Of course, I first had to get stable at all. I spent years, and a huge chunk of savings, biohacking my way back to a body healthy enough to work. I’m thrilled to be back doing what I love most which is working with early stage companies. But work wasn’t the only goal of getting healthy.

I’ve had a fantasy that if I just kept at my biohacking that one day I’d be off all these medications. That I could truly be healed. That all this trouble and heartache wouldn’t be permanent. That I could heal myself. Unsaid in all of that, is that I cannot be pregnant and on the medications that saved my life. How is that for a kick in the teeth.

I’ve got two embryos and ten eggs and a fleeting dying ember of hope that I could ever carry them. I don’t know if having them via a surrogate is my path forward. Maybe there is still hope I could be healthy enough. I frankly don’t know and I’m not ready to say where my fertility is headed.

All I know is that this feels like a no scenario. That having a child in America is a fraught and expensive endeavor even when everything goes right and you are healthy and young. There is no winning as a woman as any decision around family is going to upset someone.

It’s the Kobayashi Maru for American women. Juggling your partner (or partners), your money, your home, your health and your fertility means balls get dropped. You are going to lose somewhere. And it really hurts.

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Internet Culture Politics

Day 764 and Natalism

There are a number of cultural streams in American life that have all aligned around being natalist. You want your country to have babies because it’s good for the economy. And presumably also good for national security.

This fairly basic insight means everyone from techno-libertarians to Catholic homesteaders believes that Americans should be having more babies. It is not just the Quiver-full types having six babies anymore, so are our wealthiest aristocratic titans of industry.

But this alliance is missing some crucial basics. Like for instance the fundamental civilization level things we need to do to make it desirable and affordable to have children. It’s expensive to be pregnant, it’s expensive to raise children, it’s expensive all around to be parents. I spent $40,000 on IVF and it ruined my health. If I counted lost wages and being forced to sell my startup I’m the total costs is seven figures.

I don’t know if you’ve looked at just the costs around having a baby but it will shock you every time you turn a new corner in the fertility space. I learned today you will spend between $100,000 to $200,000 to hire a surrogate. It’s a person’s salary and a lot of medical care so sure that seems right but damn.

I guess I am interested in the math of Natalism to see if I could afford it. I am one of those “tech elites” that thinks we have to have children to drive the innovation of tomorrow. Our future is based on an optimistic hope that maybe we can push for a better future. Humanity won’t continue without children.

But I don’t have a body that is all that healthy without medical intervention. I live a normal life now and can work full time again because I take some exceptional medicine.

But it’s not medicinal regime that can be combined with pregnancy. So if I want to carry a child I have to go off what amounts to life saving medicine. Without it I’d be on bed rest. You can imagine the math I’m doing in my head? Do I want to pour another million into having a family?

So what’s a girl like me to do? Surrogacy right? But I’ve got 10 eggs and 2 embryos so assuming a third of them make it, that’s nearly half a million dollars in surrogacy fees. To get three kids. That’s a heavy price tag on the future. If more of them take it gets even wilder.

Now ok sure I’d rather we encourage a world where younger healthy folks do things naturally but don’t we want everyone going at maximum effort for a better tomorrow? Shouldn’t we want technology to solve this? Where are my artificial wombs at?

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Biohacking

Day 742 and Careful Balance

I don’t think I’ll be getting my best writing out today. I’m plugging through my work while balancing out my personal chemistry against my obligations.

I am a bit scared to find myself balancing a delicate body chemistry in a foreign country. I don’t care much for taking a steroid like prednisone but when it’s a choice between hives and yellow weeping eyes or a modicum of comfort, you pick comfort.

It’s of course not without its side effects. Steroids make you feel great till they make you feel a bit crazy. They are very good at tamping down every reaction your body has which can ironically give you some autonomic issues. For me it can feel like I’m in fight or flight.

I left my Airbnb as the more I tapered the steroid dose the worse my symptoms got. I’m a little concerned about fighting Airbnb for a refund but better to lose a few hundred dollars than need steroids. I did find a very nice and crucially clean hotel that will do the trick for now.

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Biohacking Emotional Work

Day 733 and Rollercoasters

I felt amazing last night coming out of my weekly therapy block. I was emotionally present. I was kind to myself. I felt like I was making progress. What a way to kick off the New Year I said to myself. I was riding a high.

I went to bed at my usual time feeling relaxed. I definitely thought I was doing the moisturized, thriving, in my lane meme perfectly. But then I woke up at 1am completely alert. Fuck.

I usually have more trouble falling asleep than staying asleep. Coming down from an emotional high like therapy can often take me a few hours. But every once in a while, I will wake up in the middle of the night and find myself unable to fall back asleep.

I felt like I was on a roller coaster. I was up then I was down and then I was up again. I was energized and completely awake for three hours in the middle of the night.

The sleep hygiene folks tell you it’s best to get up and do some sort of activity if you find yourself awake during your normal circadian sleep cycle. I decided to read a book.

I’m in the middle of Tomorrow and Tomorrow and Tomorrow. It has been recommended on numerous “best of” lists. I am enjoying it quite a bit as it’s about friendship, a gaming startup, disability and creativity.

Eventually I felt myself getting drowsy around 4am. According to my sleep tracker I was in and out of light sleep until around 6am when I finally transitioned into deep sleep. The rollercoaster had ended its ride.

Categories
Medical Startups

Day 696 and Edge

I’m enjoying a migraine this weekend that was both strong and as of yet unbeaten. Perhaps I overdid things on Thanksgiving and Black Friday. But I’ve been stuck in bed in a dark room for the last 48 hours or so.

While this sounds a bit miserable, I can assure you it is also part of my edge. When my physical works shrinks my cognitive capacity unfurls. I very much liken it to the traditional super hero dilemma of being gifted with something that makes living a normal life a challenge.

I may be stuck inside struggling with light, noise and smell but I can still do most of my core deep work. I can’t take calls or go to meetings but I can be on my phone and my Kindle. I can intake information and I can synthesize that information when I’m in darkness.

And that is 90% of my job. Be informed and make the best decision you can. Those decisions are generally done when you are calm and fast. And I get the benefit of being in rest and digest as often as possible as it’s what keeps me alive.

I’ve got a generalized theory related to finding one’s edge. It’s pretty simple. If other people perceive it as a weakness but you understand how to wield it as a strength then your got an edge. People dismiss you sure. But being underestimated is one hell of a way to get on the better end of a trade.

And so while I’m here looking like I might not be worthy because of some set of heuristics that’s have typically worked well for you I’m actually the one that has a leg up on you. You would do well to think about all the ways in which you can leverage talent and insights that trade below their value. You can make a lot of money betting off of truly underestimated viewpoints.

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Biohacking Chronic Disease

Day 668 and Health Multitasking

I didn’t take my own advice recently. When folks ask me how to begin biohacking I tell them to take it slow. You should change only one variable at a time.

Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.

Day 91 and A Beginner’s Guide to Biohacking

My biohacking has been focused on improving my core inflammatory markers for several years. Secondary metrics like pain and energy got better as my erythrocyte sedimentation rate and C-reactive protein went down.

What I did to improve those metrics was complex, time intensive and expensive but it was pretty clear what outcome I was pursuing. My broad goals were simple. The tactics merely a function of one overarching strategy to lower inflammation.

Recently I’ve been a bit sloppy about my goals as my SED rate and CRP approach normal. I got excited that I might be stable enough to pursue some new goals. I am always looking to lower my doses of pain management medications. But the real shiny object for me has been fat loss.

I’ve struggled to stay lean as several medications that improve inflammatory markers have weight gain as a side effect. I struggle with shame about my weight. So much of popular culture portrays weight gain as a function of poor impulse control. It embarrasses me on some deep core level that others might think I’m lazy. If immediately trigger’s defensiveness for me.

I can rationally know I was pursuing a responsible health by taking prednisone during acute phases of my illness, but a part of me is still so embarrassed by the side effects. What must people think of me? Even if I explain that it’s a side effect of medication I fear that it’s still perceived as been slovenly.

So I decided to go back on metabolic drug called ozempic because I just hate carrying excess fat. I thought I could add it into my routine. But I am not doing as well as I’d like with the side effects of the injection. I’ve now vomited two Sundays in a row and been unable to eat. That is destabilizing enough that it is impacting my other goals like a slow dose down of non-steroidal anti-inflammatory drugs.

Maintaining low inflammation rates with lower pharmaceutical intervention is obviously a huge goal of mine and far more crucial than dropping a few pounds of fat. Especially because my metabolic markers are all in the clear.

I just so badly want to put behind some of the visible markers of my disease. It was hubris to pursue ozempic when I know I have other metrics that are more important than my shame about having steroid fat. So next time you see someone who is overweight I encourage some empathy. You never know the whole story of someone’s health.

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Politics

Day 664 and Political Disabilty

I did not watch the Pennsylvania senatorial candidate debate between Democratic Lt. Governor John Fetterman and Republican tv personality Dr. Mehmet Oz because I live in Montana. Why the fuck would I do that? But I have caught the discourse surrounding it and I do not like it.

If you are not following this saga, Fetterman had a stroke a few days before the primary in May. He is recovering but but is still having trouble with speech. People who are not familiar with neurological recovery processes (otherwise known as 99% of normal humans including me) are freaking the fuck out about what it means that his speech is impaired. It looks particularly egregious when compared to Dr Oz who is professionally competent at communicating clearly on television because that is his job.

Naturally we are seeing the absolute worst possible response to Fetterman’s current disability from just about everyone. Supporters of Fetterman are insisting that there is no evidence of mental degeneration or acuity issues. Which might be true but I don’t know. But the general sense I get from supporters is one cannot even suggest that there might be processing issues because doing so would you an awful ableist human being. Neat!

On the flip side, Republicans and other opponents are insisting Fetterman isn’t fit to hold office as he is not capable of speaking clearly. The Republican position seems to be that a speech impediment is a clear sign of mental decay and electing him is maybe a diverity and inclusion policy so wrong it should insult us all. Also extremely neat!

I’d say naturally both positions are ridiculous but I’m not sure this is natural to anyone. Ableism, or discrimination against the disabled, is an exciting new front in the culture wars. Being being disabled is a hot new identity marker despite the fact that a quarter of Americans have some form of disability. It’s not that unique or cool to be disabled. But modern medicine is a miracle so we can’t rely on Darwin anymore to keep us damned cripples out of sight anymore making light eugenics kind of a popular position. I don’t love it.

I am someone with a modest disability. I have a spinal condition called ankylosing spondylitis which is basically arthritis in my spine. So I don’t find any of the commentary surrounding Fetterman’s disability status encouraging. I don’t love that the basic assumption is being less than abled bodied is disqualifying for work. It depends! This shouldn’t be a whole fucking thing.

A disability doesn’t mean you can’t work like a “normal” person but it does mean you have some limitations to work around. This doesn’t make you better or worse as a person. Being disabled has no moral valence. Alas we tend to valorize suffering and demonize perceived weakness. Neat!

My position is most disabilities are sort of a modest inconvenience that on balance forces you to hone other abilities to be competitive. This is my super hero theory of disability and might be a contributing factor to the side that valorizes disability. How cool is it to be an X-Men? Extremely! But I don’t overweight this position as I largely think a market economy fixes by forcing us to all to compete and find our niche.

If this is scandalous to you, I’d say everyone has something that is a struggle to overcome even if most people’s thing is just being kind of an idiot. Half of us are by definition below average. But imagine if I thought you being stupider than me was disqualifying for holding political office.

My whole point in this long ramble is that the Democrats are being ridiculous in insisting we cannot look at the strengths and weaknesses that come with bodies being sick. We are on year three of the pandemic so that ship has sailed. The Republicans are being ridiculous insisting that speech impediments are disqualifying. Tump didn’t even have the benefit of a stroke to blame for his speech patterns.

It isn’t ridiculous to ask someone to be transparent about recovery and abilities. I’ve got no idea if Fetterman has slower thinking after the strike or if it’s just slower speaking. I don’t really care to be honest. Not my senator.

But if we all keep insisting on physical and mental perfection from our elected officials we might not have any politicians left. Which actually on second thought might be ok.

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Emotional Work

Day 647 and Socializing

I thought I was being quite careful this weekend about not over socializing. Last weekend I was hitting up pancake breakfasts and running errands and I thought I was going to pass out come Monday. So I was much more conscious of needing to rest and privacy this weekend.

But no matter how much I dial it back it seems like any amount of interaction is just too much. I backed it down to two hours on Thursday, Friday and Sunday with a recovery day on Saturday. But here I am on Sunday afternoon fighting off a migraine from overstimulation.

Folks bitch and moan about Zoom and how it takes away from the human element of interaction but fuck me if that isn’t the entire appeal of it to me. I myself prefer asynchronous communication to buffer myself even further from the onslaught of audio, visual and emotional inputs. But I’ll take a day full of Zooms as it’s still so much less input.

Perhaps the downside of having the hair trigger central nervous system of an autist is I am simply absorbing more from the inputs than the average person. Every noise, every visual cue, every smell is hitting me. Others may need all those cues but I absolutely do not.

I wish there were a way to articulate this to friends and family that didn’t make people feel rejected. But socializing in person is simply so taxing for me that I need much less of it. And it’s not because I don’t like you. It is just because I’m absorbing way more of you than you think!

Categories
Chronic Disease Emotional Work

Day 636 and Waves

Yesterday I was on top of a wave of positivity, so naturally this means today I was prepared for that wave to crash. The rhythms of both life, and my body, must accommodate the full range of highs and lows. After several intense days of work and activity I spent my day reading and absorbing news and financial reports in bed.

I am becoming modestly less indignant about having to monitor and meter my energy carefully. This is a new development in some ways as I’ve struggled quite publicly with mixed feelings about accounting for fatigue and pain in my workflows. I have in the past easily fallen into envy and jealousy when I see how much able bodied friends give little thought to their physical realities.

I have slowly let go of negativity around around around my body and come to embrace the rhythms of requiring rest. I’ve even come to see it as a strength as being forced into mitigating stress loads and cortisol spikes means I have more control over my sympathetic nervous system. Rather than give in to fight or flight, I am able now to able to choose how I respond.