Categories
Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.

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 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

Categories
Emotional Work

Day 512 and Not So Glamorous

Remember that respite I had yesterday from the flu? Yeah me neither! I barely crawled out of bed this morning after some pretty gnarly dreams. My subconscious was going through it.

I had a three hour session of biofeedback yesterday working through some of my self limiting beliefs. It’s truly wild how you will just perpetrate the worst emotional violence on the people we love the most. Alex and I in particular love acting out various O’Henry stories in our marriage. Gift of the Magi is a particularly favorite where we will actively sacrifice something we love for the other only to discover we’ve destroyed the very thing that our partner loved. It’s a super fun cycle and every time I think we’ve found a way out of the cycle we manage to do it all over again. The problem is the glue.

So I was a bit frazzled today from working through all the emotional stuff. I need to stop giving Alex power by letting him take care of me. He needs to drop care taking me. You know standard marriage stuff. I can write whole love letters about it. Anyway I digress.

I was a bit fried today as I was recovering from pushing yesterday. I happened to have a friend that wanted to talk about how I was doing. I think he was expecting a more glamorous even sexy answer. People often think I’ve got a more interesting life than I do. Which is funny as I feel like I write about the mundane details of chronic disease with some frequency. But today I was not swanning about in Europe or writing love letters. I was in a dark cold room fighting off a migraine and some spinal pain. Because sometimes life just isn’t all that glamorous. And honestly that’s ok.

Categories
Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

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
Aesthetics

Day 485 and Reality Shows

I’ve been watching Netflix’s reality dating shows this past week. I’m absolutely obsessed with the Nick and Vanessa Lachey properties in which twenty and thirty somethings do preposterous social experiments because they want to be married that badly. I’ve now watched Love is Blind and the Ultimatum.

I’m not typically a reality show person. I’m a yuppie startup bro living in the golden age of prestige tv. I like expensive scripted dramas and the media has provided me with ample options. But I’ve often wondered how much I’m missing out on popular culture by avoiding reality television.

I’ve got girlfriends who are obsessed with the Bachelor but I’ll be honest I’ve never been able to focus on unscripted tv. I admire the hell out of the product empire the Kardashians have built but I’ve never actually watched their anchor television show. There is clearly a deep cultural cross current that reality television has in America and I’ve largely let it pass me by. Well except for having to live through the Trump administration.

I’m particularly interested in how these reality shows reflect our cultural desires. I wrote this week about how the vibe shift is showing an emerging camp of right wing counter culture. The single minded obsession with marriage and traditional family structures in both Love is Blind and the Ultimatum make me think they both reflect the cultural power of traditionalism. Twenty five year olds offering ultimatums to their partners that they must get married now is a bit wild to me as a geriatric millennial. It was considered a bit retro to be married before 30 during the Girlboss new left Obama years. That’s clearly changed.

I’m curious what else is changing culturally that will be reflected in reality television. Love is the most universal so perhaps I’m projecting a bit on the medium. Maybe marriage is easier to transpose onto unscripted television. But I’d be willing to bet there are a lot of other traditionalist vibe camps that will arise on America’s favorite entertainment genre.

Categories
Aesthetics Emotional Work

Day 481 and The Mood

There is a scene in Dune where heir apparent Paul Atreides is dismissing the danger he is in from the Harkonnens. He tells his instructor he is “not in the mood” to train.

It proceeds to be a standard issue coming of age issue. Paul realized being responsible means finding the mood if the need arises. The circle of manhood. You’ve read Joseph Campbell too so you can fill in the hero’s journey.

But I’ve recently noticed an uptick of people not being in the mood. This isn’t for lack of desire to build and and will manifest. People are exhausted by the increasing chaos. The entropy pulling on all of our lives is weighing on us. People have let big life decisions go by as the uncertainty plays out. We want to stop to attend to those problems. We’ve got health issues we’ve not checked out. We’ve got family members who are struggling. We’ve put off buying homes and making trips and investing in things b

But we cannot let the pace and uncertainty of the now prevent us from setting the foundations for our future. We may not be in the mood. We may be tired and scared and overwhelmed. But the occasions that require action do not care for our moods.