Tag: Disability

Categories
Aesthetics Travel

Day 547 and Cruel Summer

The cruel summer is the season after silent spring. It’s hot out. Unnaturally and unseasonably so.

And people aren’t really prepared for it. Whole countries haven’t invested in air conditioning yet. I made the mistake of being outside during high noon. I was under shade and there were fans but I let my insides get simmered a bit while I ate lunch.

The exhaustion that overcame me was enough for ten siestas. A dozen forced naps would easily overcome even the most fervent consciousness. I’d simple done too much by existing and eating at the height of the day. What a foolish hubristic nature this mortal has.

What little defense the air conditioner has against the full force of noon will have to be enough. Sleep will find me if I can find an even small restorative space. One I know will disappear the second the key card is lifted from the auto electricity system.

Categories
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

Categories
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

Categories
Chronic Disease Emotional Work

Day 542 and Energy Budgets

I’m not much for active time off. Or being active at all really. I have a limited energy budget so I watch my energy expenditure carefully. Other people budget their money. I budget my energy.

I’ll often find myself jealous of other people who enjoy active hobbies. My husband plays tennis and shoots competitively. Every weekend he is off doing fun shit outside. He could easily play a sport, socialize afterwards and still have the energy to go out for dinner.

Meanwhile I’m probably in bed. I have plenty of fun, lower energy usage hobbies. I read a ton of fiction. I play games. I am working on my foreign language skills (be my friend in Duolingo), and of course I’m a notoriously active Twitter shitposter. All things that can be done while laying down!

And while I love all of those activities I wish that I didn’t have to run the math on how much a coffee with friends would set back my energy budget. I long for the opportunity to simply throw on clothing and head out the door without fear of how that might impact the rest of my day or even my week. But I run on the spoon theory just like your average disabled person.

My fear is that my energy poverty is isolating me. I struggle to explain that I’d love to spend more time with people but I need them to commit to cheaper energy expenditure options. But even the energy required to explain how friends and family can accommodate me is a challenge. It embarrasses me there I need everyone to work around my needs. And I’m often too scared to be demanding about what would work for me. So instead I just spend my time and energy alone.

If you are interested in learning how to make the effort to spend time with someone with energy poverty I hope this post helps. For instance instead of playing a round of tennis, perhaps you could come visit me at home and we could quietly chat on the couch. Instead of going out to dinner we could order in takeout. And no I don’t mean cook at home because then I’d need to plan, shop, cook and clean up afterwards. I very much mean order food on disposable plates so it’s minimal energy outlay. Disability accommodations are not very eco-friendly. It’s a different calculus of resources.

You may have to do a lot more work to be friends with someone managing a disability or a medical condition. If they don’t respond it’s not because they don’t want to see you necessarily. It could just be that you messaged on a bad day and it slipped through the cracks. We need you to actively work to be present for us. It’s a big ask but it is appreciated.

Categories
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Aesthetics Emotional Work Travel

Day 531 and Overpacking

I used to be an expert packer. If you do some deep Googling on me you will find lots of travel tips as at one point I was the co-founder of a travel cosmetics company called Stowaway. I was on the road a lot and became quite practiced at getting my entire life in a carry-on.

I can’t seem to pull it off anymore. At first I thought it was because I didn’t travel during the pandemic. Then I blamed it on being modest disabled from all my various health nonsense. But I’ve just stumbled onto the real reason

I’ve got fantasies of having a life where I still do things.

By packing high heels and nice dresses and several colors of lipstick I am telling my disability “not today Satan!” Except then of course I don’t use any of it. Because I am in fact still disabled.

I packed an outfit for a black tie gala when I went down to Austin. Because you never know when you might appreciate having a gown on hand and it didn’t take up much space. Now mind you I still attended an actual gala, but I ended up wearing a tank top and camouflage pants. Crypto is low key that way.

While I am introverted, and not terribly keen on socializing, I haven’t quite given up on a world where I go out if I want to. I want to feel like I’ve got the option to say yes to a nice dinner or to a meeting up at a cocktail bar. Leaving behind my favorite pair of Gucci heels is cutting off some part of my life in my mind.

If I only pack comfortable clothing and sensible skincare I feel as if I’ve conceded something to my disability. If I don’t pack a nice dress, even if my entire trip is planned around being casually at home in an Airbnb, I feel I’ve somehow given in to the pain and fatigue.

I’m not entirely sure if this is something I can work through. Or even if I want to work through it. I hate having to make room for medication and supplements and knowing it means there is no room for a hair dryer or a second pair of heels. I’d rather overpack. I’d rather have some sense of optimism and ambition.

But then I’ve got to get through customs at Heathrow and I’ve got no intention of checking any of my luggage during a chaotic summer for travel. So it might be time to try getting back to traveling light. And that means fewer cosmetics and clothing.

Categories
Preparedness Travel

Day 528 and Oppressive

I would love to be writing about my impressions of the Consensus experience in Austin. I had a terrific time seeing friends & colleagues, the content was good, my talk was well attended (and well received) and I genuinely felt the experience was worthwhile. My general impression is winter is good for crypto as we will get back to building.

But as I wrap up my trip all I can really focus on is how oppressive the heat feels. How exhausting it is to consider it’s consuming nature at every step of your day. The heat is edging towards the point of being hostile to life. 29 million people live in Texas and there is no focused effort to harden infrastructure for climate extremes or drought. If you want to picture what life might be life here for your children read the Water Knife by Paolo Bacigulipa.

Last night I found myself literally sitting on top of an air conditioning vent in the attic of a private house to avoid the evening heat. I was hosting a little gathering with a few close friends (and new folks) on top of what eventually turned into a Burning Man reunion. As the older folks (otherwise known as anyone over the age of 35) and the square folks decided it was time to head out for dinner, we piled back into the night heat. The sound of revelers dancing and laughing in the 95 degree heat impressed me. Texas was showing life in the face of death.

In what I can only call a rookie move, we went to a community meet up in the backyard of some sort of coffee house and Eastern European bun shop. Even at 10pm it was too much for me. The adults decamped to a nice restaurant for air conditioning and steaks. It was bliss. Expensive privileged bliss. And yes I enjoyed consuming more than my share of resources. I’d contributed to the resource depletion that has changed our climate and made me suffer.

My period started this morning so I’m obviously tired, bloated and cranky. The last thing I want to do is cope with heat that’s supposed to get up to 109. I’m doing the dance where I rush as fast as I can into a waiting car. I try to avoid the natural world and it’s cruel requirements. We’ve not conquered nature, merely found ways to shield ourselves from its worst ravages. But those protections only intensified the natural patterns of our planet.

I idly thought to myself if I was ever to have a daughter I’d name her Cassandra. That could be quite a parental trauma to give a child. Imagine the anger she might feel dealing with a world where it’s either innovate your way to safety or accept a declining living standard with degrowth. It’s a horrifying choice. I want to be an optimistic natalist that thinks we can innovate a better future for our children. I want their confidence.

But it’s hard to be confident about a future where an enormous vibrant place like Texas will be forced to run the gauntlet of a chaotic age to a singularity not everyone will live to see. I wouldn’t place my fate in a place with drought, extreme heat and reactionary right wing populism. But I’m also not sure I’ll ever come back. But I hope I do.

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.