Categories
Chronic Disease Emotional Work

Day 527 and Accomodation

Last night I was lucky enough to attend CoinCenter’s annual dinner. I’m a big fan of the work they do to advocate for better crypto policy. And their entire team is funny as fuck on Twitter.

But I had a moment of utter embarrassment when I arrived early in the cocktail party hour that was taking place outside. It was over 100 degrees and Austin City Limits has hard concrete floors. There was no way I was surviving 45 minutes on a hard surface standing without a chair in the heat. But they had not opened the doors to the dinner space.

I got completely flustered. But my husband Alex was able to immediately take control of the situation. He asked a security guard if we could go inside. It was a no go. Talk to the front of house. The head publicist was immediately sensitive to the situation. Alex explained that I have ankylosing spondylitis which makes me invisibly but variably disabled. Heat swells my spine and makes it a struggle to stand.

I was absolutely mortified that I couldn’t manage being outside for the cocktail hour. The embarrassment and shame of needing to asl for a special accommodation felt overwhelming. But it was too hot for me to be comfortable and there was no place I could rest comfortably. It was either ask for help or go home. And blessedly my husband has the wherewithal to ask.

The publicist brought us back. The only other person in the dining was Senator Gillibrand getting settled by her team. And then suddenly it wasn’t awkward. The staff completely understood. It wasn’t putting anyone out to be let in early. It was completely fine. I had been willing to leave rather than put anyone out. It no one was put out. Everyone just wants to help.

Categories
Aesthetics Startups Travel

Day 526 and Out of Practice Yuppie

A well dressed, tall, friendly looking white gentleman tried to join me on an otherwise empty blue velvet couch that I had deliberately planted myself in the middle of to avoid socializing. All that was missing was a “closed for business” sign around my neck.

I had attempted to tell him “no actually this seat is taken.” I was confused he didn’t immediately pick up on my body language. I had spread my entire body across the couch and had intensely “don’t come here” body language. I had my purse down to take up more space. I laid my hand with my wedding ring on my knee so it’s instantly visible. He didn’t pick up a single visual cue. I tried verbal. I literally shouted at him that no he wasn’t welcome to join me. “This seat is taken!” Didn’t make a difference.

I don’t think he could hear me as he sat down and tried to strike up a conversation despite his obvious discomfort clinging to the edge of the couch with half a butt cheek in mid air. He tried a few lines of conversation as I doggedly ignored him. I started a tweet and angled my phone screen towards him so he could see me typing complaints. Didn’t help at all.

I really had done everything I could to claim this space as my own. The couch was directly beneath an air vent trying to push cooler air into the crowded house bar. It was as hot inside the bar as it was outside but this one area had modestly more airflow making the summer heat at least breathable.

Which is to say it was over 100 degrees inside the old house. The Rainey Street bars in Austin are all converted old historical houses with wide open full floor windows and open doors to allow people to enjoy backyards with twinkling lights and hipster backyard games. These bars are a cultural treasure in March for SXSW when everyone enjoys the mild 70 degree early spring. In June during a heatwave they are a hellscape for yuppies who have simply forgotten how to socialize like normal human beings.

I was engaging in some incredibly rude behavior yes, but the bar has no other visible seating near an air vent and even the 5 degrees of lowered temperature and the moving air helped a little. I was wearing loose comfortable clothing but it was still intolerable. I regretted not sourcing a wheelchair for the week but then again none of these houses are accessible anyway. It was the only spot in the entire bar where I could even attempt to mitigate the effects of my invisible disability.

I could feel my spine starting to swell within minutes. Ankylosis is a winter disease. Heat and humidity swell the spine and that pain will radiate out to a kind of ambient full body throbbing intensity that cannot easily be ignored.

Actually, pain is just like the heat in that way. It overtakes your willpower slowly but inexorably. Quietly it makes itself known like the stillness of Joseph Conrad’s Jungle.

“And this stillness of life did not in the least resemble a peace. It was the stillness of an implacable force brooding over an inscrutable intention. It looked at you with a vengeful aspect.”

Joseph Conrad “Heart of Darkness”

The amount of determination you have to play mind-over-matter games is simply a fight against time. Eventually you get tired from the effort. You pray you don’t let it take you to the dark places it took Kurtz. But you know one day it could take you too.

Eventually my husband came back. He’d been searching for a bathroom and our hosts for the evening. The yuppie next to me pretended to ignore him. He sat for another two minutes or so just to give the impression he’s weirdly close proximity to me was on purpose as a resting place and not at all an attempt to strike up a conversation with a woman who did not want to talk. A tactic we’ve all used once or twice to conceal a social faux we didn’t mean to commit.

Alex and I used to attend parties like this all the time. We were aggressively on the circuit for both tech and media events for well over a decade. He used to produce TechCrunch Disrupt in a long distant past before he transitioned into being an operator at early stage startups. Then those startups matured to established companies. And now it’s become clear we are established professionals.

We no longer need the social circuit. Networking has lost its payouts. More people want to meet us and ask for things than the other way around. We’ve made it. And it’s a good thing too as the social contract is breaking down all around us. Yuppies have forgotten their manners as we are all out of practice with the basic niceties of the social season. Everything from how we approach someone to begin a conversation to whom we may invite to a private event is now fraught. Hell I can’t even remember how to apply professional makeup anymore so I can’t look down on a man looking to chat. We’ve all lost some of our humanity over the pandemic.

And I find myself mumbling “the horror, the horror” as I walk myself back to the hotel because the streets won’t allow taxis in the downtown core. The transition from soft times to whatever comes next is full of unexpected surprises.

Categories
Travel

Day 524 and Low Recovery

I’m on my way to Austin Texas today. Most of yesterday got eaten up by various preparations to be on the road. I’m scared for this trip as Texas hasn’t made cannabis legal so a core part of my physical stability regimen from my physician can’t be brought with me if I want to stay on the right side of the law. I’m terrified of Paxton the incredibly corrupt attorney general.

I did a bit too much yesterday in preparation for travel and unsurprisingly my Whoop and Welltory are flashing red warning signs. I struggle to sleep before travel because of the anxiety and no amount of magnesium, melatonin, quiet reading and essential oils was going to get me down. Even Ambien was like yeah girl your heart rate is crazy.

A poor set of recovery metrics from Whoop

I’m hoping the flight is easy and I get a good night sleep once I’m in Texas. I’d like to be in the green for tomorrow as I’ve got a few little things to finish in preparation. But my basics biometrics are still so bad a 45 HRV is considered good as I think I’m still in a long post viral thing from May.

The Texas heat is going to quite extreme unfortunately. I’m skeptical all go outside for any longer than it takes to get a cab. I brought a bathing suit but I am not sure frying by the pool will do me any good.

A weather forecast for Austin Texas showing a string of over 100 degree highs for a week.

I’m much more concerned about Texas’ notoriously unstable power grids. What if it goes down while I’m there? Will my Texas prepper friends take me in? Will the hotel be on a generator? Is downtown Austin likely to be restored quickly? What if it’s a cascade event and nothing can be brought up for days like their last major grid event?

I’ve done my best to set the lowest possible expectations for being able to meet up with me socially. Which is a shame as conferences are for networking. My DMs are packed with excited DAO folks trying to get my attention. Meanwhile I’m not even confident I’ll leave the hotel room for anything but my own talk and one meet up with a long time friend whom I’ve not had the chance to be with IRL.

I’d like to do more but so many factors are combining to make me extra cautious about obligations. There are too many potentials for a cascade failure and I want to give a great talk so I’ve got to save my energy for that. I’m not worried about being good for the talk.

I’ve got an incredible gift where I can muster all my focus and energy even when extremely sick. I’ll use every last drop of it to meet my obligations. No one will be able to tell I’m sick. And then it’s entirely possible I’ll crater for days. My autonomic nervous system is very sensitive. It’s a blessing and a curse.

I’d you absolutely must find a way to meet with me (and sorry pitching me IRL might not be in the cards but DM and we will chat) I may try to host some folks at my hotel suite. If you are an actual friend of mine and can respect the disability situation maybe we can make it work. But no promises. Which of course my actual friends will understand so open invitation and such.

Categories
Chronic Disease

Day 507 and Better is Not Binary

A close friend of my husband and I sent me a sweet check in text message today saying he hoped I was feeling better. Our friend is a sincere and empathetic person. Because I know know he does care for me sincerely I said how I was actually feeling to him. I was feeling confused.

lol I never know how to respond to this sort of thing as occasionally I get regular person sick but I’ll never not be disabled 😂😭

“Better” is a bit of a loaded term for me. It suggests so much. Absolute improvement like my flu is over suggests better. Or perhaps improvement that will stay put forever is better. Or maybe it’s a good day in a string of bad ones and that’s better. Better can be though of in both binary and scale terms.

Default healthy people think of better as binary because once they’re good enough they are “better”. The flu passes. They get back to normal. But if you’re chronically ill or disabled then better is on a scale and you never get fully “better” but rather ebbs and flows. I don’t always know how to articulate this to abled well people.

If you have someone in your life who you think of as not being very social, I’d like to ask you to discover if it is because of a physical disability or ongoing chronic disease. Maybe they aren’t social as they can’t accommodate your pace but they would love to spend time together with you if you accommodated their pace. A lot of folks are chronically ill. And we like to be friends with you. We just need you to recognize we require some accommodations from you.

Categories
Chronic Disease Startups

476 and Temptation

When I am feeling healthy I love to over do it. Most days I feel basically fine. Which is a significant improvement over even two years ago. I was living a little low. But maybe once or twice a week now I will just feel terrific.

Today is one of those days. I woke up early after a restorative night of sleep. I didn’t miss anything on my extensive wellness regimen. I was just nailing the day.

The sad part about doing wellness because you have to for a chronic disease is that you aren’t even ever hotter for it. Healthy women be doing yoga & taking supplements and practicing wellness and it’s a fucking Instagram campaign. I do all that shit and at the end I’m “ok.” It’s actually pretty demoralizing. I engage in flawless yuppie next generation wellness because it’s actually keeping me alive.

With this context it’s clear that I resent having to take good care of myself. It feels like a burden. So when I have a really good day. When I’m just energetic and focused and, yes moisturized and thriving, I’m also plotting how to undermine myself.

Because I felt terrific I just hand to indulge in it I took a bunch of calls and did a bunch of portfolio work. I went for an hour long creekside walk to discuss some communication strategy with Alex. I was vibing. Until I wasn’t. I crossed some little threshold and realized I needed to pull back the energy expenditure. I recognized I have given into temptation this time.

Categories
Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.

Categories
Emotional Work

Day 462 and Action is Not Power

Action equals power in America. But at the risk of repeating some basic definitional shit, action is action. Power is power. They are not the same thing. I have a bias towards action as the famous Amazon aphorism goes. I think action is often a beneficial force. But I am learning that sometimes I need to be still in my power without turning to action.

It’s a challenging concept for me. I have more power by allowing it to flow through me. But I prefer taking action to acquire it. I’m in an industry and country where no one is ever satisfied. The need to acquire more is a looming mimetic desire. And the clearest path we see to acquiring more? Take action! Do a thing. Make a move. Be a player.

But sometimes power is found in stillness. The slow places. The quiet places. The interiors of our lives. We meditate and contemplate. All these practices can help us access the power we already have inside us. The capacity that existed all along and simply needed to be honed.

I wanted to beat myself for not seizing more power recently. Why wasn’t I being more aggressive? And then I realized I already had everything I needed in me. I don’t mean this as some bullshit thought leadering either. I slept till 1pm today because I was out late last night. I needed the stillness and rest so my own power can through. I could have been up and seizing the day but that would have only resulted in action and not power.

Categories
Preparedness Travel

Day 460 and The Tropics

When I was a New Yorker, the flight to Miami was the preferred winter escape for everyone from Upper West Side Jews to Lower East Side hipsters. New Yorkers love Miami. We’d all decamp from the grey for long weekend’s beginning in December with Art Basel and ending in February as the various winter equestrian circuits wrapped.

Every restaurant that was popular in New York had its own branch tucked away in some form of boutique luxury hotel. The clothing stores had branches down here too. Even our preferred gyms like Equinox had their Miami outposts. Miami was in my mind the “Winter Borough” of New York City.

So I’ve been a little tickled by it’s adoption in the pandemic years as the New “New York” because it’s still the old New York for me. But it’s never been a particularly viable replacement as an all year respite as it’s the fucking tropics.

Even though it’s only April the muggy sticky soul sapping humidity is out in full force. I was awake at 7am and went outside to forage for coffee and breakfast. I could barely make it a block before I was perspiring. It was 79 degrees and 86% humidity.

Maybe I’m just a wuss. I fully admit that I’ve never liked the heat. I can barely tolerate Colorado’s dry heat. So I feel like I’m wilting in the Miami heat. I’m just not built for the tropics. And I’m not sure society is either if you have to run air conditioning year round.

I don’t think I’ve got the stamina to survive a power outage in Miami. The preppers and doomers that can make it through hurricane season impress me. Imagine going without power for several weeks after a hurricane. Days of a 72 degree dew point and 86% humidity are survivable but just barely. Hot weather doomers are nuts in my book.

Categories
Travel

Day 458 and Jet-Set

I forgot what a pain in the ass it is to be on the road. I had three days back in Colorado after my trip to Frankfurt before I found myself repacking my suitcases to head to Miami. I probably shouldn’t have bothered unpacking in the first place.

I had a whirlwind of doctor appointments, injections, pharmacy runs and visits to various health care practitioners in the three days. Any kind of chronic health condition is a bit of a bad bed fellow with travel. Especially if you have medications that are controlled or require refrigeration. I’ve got both. So I timed my sojourn in Colorado to align with those pick ups and injections.

But that left me precious little time for other daily life type activities. I managed to sneak in a pedicure yesterday and it felt practically revelatory. But I’ve got so many other things to catch up that I’ve got no choice but to find a way to maintain normal life while on the road.

I have a round of blood work I need to get done before my next round of doctor appointments next week. Maybe I can get them down in Miami? They probably have quest labs. Doing a fasting lipid panel in the land of retirees seems kind of appropriate.

And while this may sound kind of stupid I really need a haircut. I just a point where it just can’t be put off any longer. It just started to look rough. So why not get it done in South Beach? It isn’t as if I’ve got a stylist in Boulder I love.

The muscles that come with life on the road are surely coming back if I’m considering things like blood work and haircuts. It isn’t the most glamorous part of being “jet set” but it sure as fuck is the most realistic. Travel has its own glamour and romance but you are never as far from the reality of your own life as you think. And maybe that’s a good thing.

Categories
Biohacking Travel

Day 455 and Jet Lag

I rolled into Denver around 420pm yesterday and I felt excellent about my timing. My ten hour flight from Frankfurt was quite pleasurable. There is something about long haul flights that are existentially quite satisfying, especially if the onboard wifi isn’t working, as one feels free from the outside world for the duration.

It was midnight in Germany when I landed so I made sure to have a coffee an hour or so before touchdown to keep me up for my time zone adjustment. My goal was to make it to 9pm Mountain Time so I could immediately adjust to my new time zone.

A slightly silly goal as I’ll be moving back two time zones in just a couple days as I’m headed to Miami. But I’m a day bird not a lark or an owl so I need my days to be productive. So staying up “all night” was on the agenda.

I managed to stay awake till about 845pm by keeping busy with unpacking and dinner and catching up on all the “couples shows” that I can only watch with Alex. Ironically about half of what I unpacked is going to get repacked shortly but I needed to do some sorting and replenishment. So I did my best to keep the adrenaline pushing me to activity. And it seems to have worked.

I was up this morning at 5:30am feeling rested and basically functional. The only issue I noticed was hunger. I was starving. I immediately got in the car and went to the good bagel place. I got a second bagel with plans to eat it tomorrow and then ended up having a second breakfast around 10am. And yes I still ate lunch at 1pm. And I’m starving now. Just absolutely ravenous all day.

My tracking apps seem to think my body is experiencing jet lag. Gyroscope said it was contributing to a lower health score and “shortening my lifespan” so that was anxiety inducing. I went for an hour long walk and my Whoop buzzed twenty minutes in. Apparently to indicate I’d hit my target strain. A leisurely stroll netted new a 8.8 score when I typically barely break a 4. Their system maxes out at 20 I think but I rarely get higher than a 10-12. And then Welltory gave me reds across stress, health and energy.

I suspect some of this is due to being back at altitude as a month is long enough to lose your acclimation. But in general I seem to be perfectly fine on my time zone and I felt mostly functional all day. I kept it light. Tomorrow when I plan to work longer hours will be the rest test.