Tag: Disability

Categories
Biohacking Politics

Day 946 and Compounding Our Incentives

I don’t want to brag (that’s a lie for rhetorical flourish I am bragging), but I woke up with excellent biometrics today. My first instinct was that I should rush into a long “to do” list for the various priorities I have remaining in the month.

And I do have some priorities I’m very excited about this month. If you are in Montana I’m hosting a get together to celebrate the “Montana Miracle” of the housing reform we successfully passed. Would love to have anyone near enough to Gallatin to pop by and meet me, my husband and our friends in person.

If you aren’t based here, you might be interested in our successful campaign cut out California style regulations so we can build more housing.

We think we can be a model for other western states looking to reclaim rights for their citizens from the government. I believe in individuals pursuing their own freedom as a long term incentive for growth.

The focus on long term incentives is key to understanding both my stance on individual freedoms and how I spend my own time.

Because I’ve got to turn this blog post around to why I was tempted to run into my immediate to do list but held myself to my routine.

I was reminded that my biometrics are good because I’ve been focused on core activities and processes that make my own “system” of incentives tick for my physiology.

I have to sleep, eat, exercise and otherwise take care of my body. If I simply responded to every dopamine hit and desire I had I’d be sick as a dog. I can promise you this is true as I live with a chronic condition I manage with good habits and some better living through chemistry.

I’d prefer we manage as many problems through good compounding longer term incentives. From building for a future that’s arriving to quickly to keeping our bodies from imploding. So get enough fiber, lift heavy things and build more housing.

Categories
Chronicle

Day 933 and Hot Hot Heat

It would seem that we’ve officially entered the high season of summer that even northern latitudes like Montana cannot escaped entirely.

I wish I had the capacity to work out a circadian rhythm that entirely accounted for how miserable long hot days can be even if you are inside in the shade. Siestas and late evenings could work but I’ve got the hang of it. I need my eight hours.

I never get cabin fever in the winter. Even the worst storm usually abates within a couple days. I can happily layer up and enjoy being in the cold and dark. I can be outside if it’s cooler, darker and clearer. If it’s not I’m basically a caged animal.

But there is nothing to be down about the sun being out till 10pm and with temperatures crossing over the 90F/32C degree mark, all that is left is escape indoors to a cold dark place and wait out the season.

Last year on July 21 I wrote about summer season affective disorder so it’s clearly a pattern I notice around this time. I’m simply grateful it’s starter later than it did when I lived in Colorado where hot streaks are beginning even earlier.

With Montana summers, I go to sleep when the sun is still out and I wake up and it’s already sunrise. If the heat weren’t so intense I think it would be bearable but the heat domes are becoming pretty common. I remain grateful it’s only six to eight weeks unlike most of continent where summer is longer and crueler.

Another factor in all of this is how challenging fire season can be for spending time outside comfortably even if it’s not combined with a heatwave. I went out this morning before temperatures climbed to get some sun and exercise. The air quality was still decent but multiple fires are popping off in Montana and I expect this to change shortly. I suspect I’ll need to find a way to manage more time indoors as the summer rages on.

Categories
Chronic Disease Emotional Work

Day 931 and Open Calendar

I am about to sunset a long-standing weekly appointment that has been on my calendar for literally years. And I was surprised to discover how much getting back that time made me happy.

The block on my calendar was for something I very much loved doing and valued highly, so the sheer joy was unexpected. But as it turns out I loathe having a consistent obligation on my time.

This isn’t to say that I don’t like being responsible, reliable, or on time. But rather I like knowing if something comes up that I have some flexibility. And I don’t like to disappoint people by needing flexibility.

My suspicion is that this represents some lingering guilt I have about having a chronic disease. While I rationally know that I did nothing to deserve being sick, I do carry a self limiting belief that being sick is a weakness.

I’ve always prided myself on being a “mind over matter” person. I’ve shown up to countless events, meetings, pitches, and other obligations while in pain. I’ve been known to repeat “Michael Jordan, Game 5” as a mantra to remind myself that I can perform in even the worst physical circumstance.

Michael Jordan famously played and won with the flu. And the logic in my mind was surely I can do the same when something is on the line. So I always have. If someone expects me to show up and perform I do it even if I am struggling.

But as my season of no has begun I think it’s time I stop romanticizing my capacity to work when sick. I love having my time back on my calendar and I love the flexibility that I have to work whenever and wherever I want.

Maybe some people would chose to work less under these conditions. For me though, having more flexibility in when I show up means I’ll find even more time to put into my work. Because I love showing up for me. And sometimes it’s easier for me to show up when it’s not a damn calendar block.

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.

Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Emotional Work

Day 891 and All Alright

I am trying to practice detachment and still enjoy the present moment. A set of secondary side effects from an antibiotic are unpleasant in the extreme. But as the theme of throwback 90s hit “That 70’s Show” so effectively proclaims, “we’re all alright, we’re all alright!”

While it is true that what is in our body will show in our emotions, it’s perhaps more accurate to say that our emotions are showing up in body. A bio-emotive framework gives you more freedom to experience the full range of life without judgement.

I have done my nervous system exercises, I have treated the side effects as best I can with pharmaceutical intervention, I’ve rested quietly in a dark room, I’ve been outside to facilitate circadian rhythm return, I’ve eaten protein and I’ve stretched.

I’ve run the processes and routines that set me up for a good day because you don’t let one bad thing turn into a hundred bad things. Even as I’m experiencing unpleasant moments, I know I have to bear these smaller costs as an investment on a better tomorrow. It’s hard to hear that everything has a cost, sometimes too much of a cost, but being detached about the calculations helps. If something must be done it’s all alright. I promise.

Categories
Chronic Disease Travel

Day 889 and Soul Delay

A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson – Pattern Recognition

I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.

I’m itchy and in pain and simply going about my routines despite it all. Rhythms and processes run my life because I’m a traditionalist. What you do every day is what you become.

Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.

So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.

Categories
Startups

Day 887 and Twenty Twenty Four Hours To Go

And I wanna be sedated. Alas I do have something to do and places to go. Namely home. So I better hurry hurry hurry before I go insane.

As I’ve covered at enormous length, I do not care for travel. My reoccurring nightmare is packing for a trip that never comes. A liminal state of impermanence, in which I must be prepared at any moment to grab all my belongings and leave.

My month in Europe flew by. I hardly noticed the time. Some of that is due to tie up and down nature of travel stresses. Most of it flew by because I was having fun.

I learned a lot on this trip. I learned about racism and pluralism and the ever present dangers of populism. I learned about green energy policy failures. I learned that freedom to travel and transact is a privilege reserved for the select few who have good passports. Colonial legacies and festering wounds from resource wars and genocides still keep borders closed. We are not yet one human species and it will get worse before it gets better.

As much as I am looking forward to being home in Montana for our glorious summers, I am leaving behind some pieces of my heart in Europe. I’ll be back soon. But only once the weather has cooled down again. Climate change and chronic illness are not good bedfellows. But in twenty four hours or so I’ll be home. And I hope to recover quickly from the stress of travel.

Categories
Travel

Day 886 and Breaking Camp

When I travel I prefer to set up a base camp. I do things from one place regionally for a month. I have a lot of accoutrements that come with me and I travel. Having a disability like a chronic spinal autoimmune condition is a huge pain in the ass.

After I have my set up I try to run with a regular daily routine when I am abroad. Additional stresses like jet lag, heat, new allergies, a suppressed immune system that easily picks up a stray infection (skin is my most common vector not lung these days), and other more quotidian travel stresses all hit me hard.

I do my best to take care of myself when I travel as any hitch in my routine can mean lost productivity. I plan my trips meticulously.

Today I am breaking down those routines. Packing them back up into my three bag cascade crisis management packing solution. Because what can go wrong will go wrong so plan for every scenario you can envision. Then you pray the unknown unknowns don’t get you.

Travel is an elaborate cost benefit analysis for me. If you do what you love you will never work a day in your life. And I do love calculating my inputs and seeing if my outputs breaks as predicated.

If not then I learned something new about what to model for next time. Breaking camp is where I see what I can improve. And what I did well. Everything has its cost. And I take responsibility for it.

Categories
Medical Preparedness Travel

Day 884 and Who Hurts First

I spend time in Europe for professional reasons. Some of my founders are unable to reach the United States as our visa program has become untenable. So I spend time in places founders can reach me. Trade crossed all borders.

Just in the last two, I’ve had Nigerian, Indian, Albanian, and Russian Jewish founders years find themselves unable to secure visas to visit America, not even for professional conferences or tourism. It is much worse with HB1 or O1 visas. You may not think this problem doesn’t affect you, or may even benefit you, but can I assure you one day it will affect you negatively. American industry was built by immigrants.

At first I thought I could simply work around America’s travel restrictions. Capitalism will overcome the inequalities our states have wrongly thrown up to divide us.

But I am learning that climate change and failures in sustainable energy policy is making it much harder to travel with a disability or chronic medical condition. Heat is a strain some bodies can’t take. And mine is one of those bodies. Migraine sufferers are too. So are the elderly. It’s quite common.

Last year I briefly did that American thing where we pretend we the Mediterranean lifestyle is aspirational by spending two weeks on the Ioan Sea. Utter disaster. I am not calling White Lotus a liar, but I couldn’t possibly imagine how hell could be worse than a heatwave in Sicily in July.

Watching the Germans treat air conditioning use like some sort of criminal shameful behavior was a vivid reminder that society always chooses who we hurt first. A policy that is for the common good may find uncommon hurt delivered to those we didn’t consider. It’s not deliberate but it may as well be.

If you paid attention during the pandemic you probably learned a lot about how we treat the sick and weak. Now imagine yourself as an one of them. It’s almost enough to make you consider becoming a reader of Rawls.

The end result for me is that I don’t believe I’ll be traveling to Europe except in the winters going forward. I can’t risk the lost days of productivity to something stupid like a default hotel setting for 72 degrees. I feel a bit robbed by this. Grief even that even late May is too risky to be on the road.

It’s a small thing to have your travel be restricted in a world of bigger sorrows, but the feeling of having your opportunities narrowed hurts. I’m sad because a utilitarian neoliberal wonk decided that most people would be perfectly comfortable with slightly warmer rooms. The finance teams at the hotels agreed. It’s not so bad. It doesn’t bother them. I wonder what other decisions won’t bother them. And whether they will hurt me unintentionally.