Tag: Disability

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Chronic Disease Chronicle Media

Day 21 and The Fast

A perennial topic for the harried is the benefit of fasting. A timeless religious tradition and spiritual practice, fasting cleanses the mind and body. Typically when I fast I do it with food. And I generally do my 7 day water fasts over the Holy Nights between Christmas and epiphany. But as I push through the final stages of healing my previously chronic illness I am considering a media fast instead.

I have a consistent meditation practice but the kind of mindfulness that comes from a break in the information flow seems more appealing. I’m exhausted from the constant crisis of the past three weeks as we careened from Georgia to the Capital insurrection to media deplatforming and silencing to finally the Inauguration. I had my hilarious shopping binge where I picked up every relaxation facilitating product I could find. But perhaps it’s time to admit I need some forced distance between me and the information firehose.

A proper retreat requires a significant break with outside stimulation. Which I’m not entirely sure is necessary. But I am concerned about overstimulation from media arcs both political and pandemic related. In Dr. Sepah’s original writing on dopamine fasting he presented it as a way to regain control over automatic rigid behaviors that have negative stimulus triggers.

In his words this type of cognitive behavioral therapy “weakens the classical conditioning in a process called ‘habituation’, which ultimately restores our behavioral flexibility.” So perhaps rather than seek a fast or a retreat or a detox I’m simply looking to break the impulses and anxiety that the media arcs have implanted in me. I do not wish to engage in the narratives of anxiety or jubilation (neither have inherently more truth) when they are not my own impulses or emotions.

My energy and my emotions are my own. I need them for my own health. They are not meant to be manipulated by outside players with their own agendas. That I need my energy for my own reasons should not even need saying. Media or political players don’t own me. There is no moral obligation that I stay tuned in. My attention cannot save anything but myself. So I will explore putting some distance between myself and the media for a but. My goal is to break from reactivity that was created externally. I’ll still be writing daily. And I suspect I’ll dabble in the bits of Twitter that bring me enjoyment and connection. But I’ll give myself the space to heal.

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Chronic Disease Chronicle

Day 18 and How Much Money Did My Unborn Child Make You?

I’ve never been much of a privacy nut. I figured I came of age too far into surveillance capitalism to ever truly recapture the dignity of my own body. I thought the classic tag “Your Privacy Is An Illusion” on Gawker was genuinely funny. What was the worst that could happen to me?

I was an early adopter of quantified self. The industry’s rise dovetailed just well enough with the security Obamacare provided. By outlawing insurance companies from discriminating against preexisting conditions I figure it was safe to use my data to improve my health now.

Prior to that I engaged in various bits of dodging having my chronic conditions logged, avoiding telling doctors I took even the most banal of medications like a daily allergy medication. After it passed I joyfully logged everything.

In hindsight, this may have slowly shifted my mindset towards my own commodification. Again, an issue never at the forefront of my mind as I worked in aesthetics. My job has often relied on putting metrics on the physical ephemera of bodies. But the inexorable progression of viewing my body as a commodity led me to a terrible choice: I froze my eggs.

At the time my husband and I were busy with careers. We had the disposable income to “buy an insurance policy” that would allow us to treat a life altering decision like having children with the casual mindset of buying an insurance product or making a moderately sized investment decision.

We were referred to the “La Mer” of fertility clinics by a friend who had successfully conceived through their help. Mind you we didn’t know if we had fertility issues, this was purely about optionality. Indeed genetic testing didn’t reveal anything shocking. We did it because we thought “why not, it’s just some money” as we may regret not having given ourselves the option. God damn we were stupid. We got sucked into the marketing hype.

Freezing my eggs was invasive in a way I simply couldn’t conceive ahead of time. No pun intended. I thought it was some extra time and drugs. At every step of the process our fears and questions were allayed with the utmost professionalism. The risks were low was repeated over and over.

It felt like we were buying a mutual fund. Sure there were some risks in the fine print but really we were investing in our future. It’s only now that I realize if I thought it was such a wise investment why were both sides so clearly invested in the transaction closing? The legalese and paperwork ran was hundreds of pages.

Surely at some point someone would have pointed out it’s not without risks. And it’s also not remotely guaranteed. The cohort of women in my social circle were all sold on the benefits of egg freezing with its potential to finally liberate us (from what who knows) only to find it was just another product that had a high price tag physically and emotionally.

You see pregnant women are worth a lot of money to data brokers and advertisers. So of course the people at the start of that arc are going to cash in on that land grab. The clinic was getting upwards of $30,000 from a few months of care from me. Plus a subscription fee to keep them on ice. No wonder the egg freezing game is quickly becoming a status symbol for the upwardly mobile making it just another purchase for well funded venture backed millennial girl bosses.

I’m honestly astonished no one said a fucking thing. Not a peep. Just a glance at the fine print. No maybe you should talk to a counselor. No here is what could go wrong. No here is how you might feel. No disclosure or discussions of some of the outlier cases of how these hormones might impact me. Where were the angry right to life folks when I needed them? All those abortion laws that tell women the risks might have actually been useful here. Ironic huh?

Because I wasn’t a picture of health. I’d struggled with some inflammatory conditions as a kid along with a never ending parade of “allergies” and aches and pains I mostly ignored with an Advil. But no one ever brought up that being stimulated to produce eggs for harvesting might set off a chain reaction with my latent autoimmune complaints. Highly unlikely anything goes wrong. It’s low risk. It’s just not discussed beyond platitudes.

And so I thought it wouldn’t be a big deal. Except that it was. After two rounds of retrieval (11 eggs of which a portion are fertilized) life was supposed to go back to normal.

Except that it didn’t. Slowly but over time I became quite sick. I developed an autoimmune disorder that leaves me in constant chronic pain. I had to sell my startup and stop working entirely.

Of course, it is still not definitive that the hormone treatments kicked off my illness but the endocrinologist and the rheumatologist tell me it’s the most likely culprit. So what I want to know after having my life completely torpedo by an elective procedure, is who made money off my unborn children? Children I may never have as (updated on 12/10/22) five years later my health has not fully recovered. I am still too vulnerable to carry a pregnancy.

Who profited off my poor health? Who thought this was a consumer product? And why oh why was I dumb enough to believe them. My best guess? The business of birth is simply too lucrative for us to treat it any other way. I’m just another outlier. Maybe someone else will use those eggs and unwittingly trap their kids into the next cycle of commodification of their bodies.

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Chronic Disease Chronicle

Day 17 and The Break

I’ve been putting my energy into other people for the past few days. Drawing on my reserves to help me and mine solve problems. Mostly emotional issues but all with a professional set of implications. Everyone has working solutions now which has given me the space to realize how tired I am. I see just how much work I put into others in the space of very little time. Quite frankly more than I should have because I have been feeling physically quite well so I thought I had more capacity. The closer I get to good health the more tempted I am to act like energy is an infinite resource.

This makes me feel bad as I often think I should be more generous with my time and energy. I remember being able to give more. I thought saying no made me unlikable. Now I realize boundaries are appreciated. They make us feel safe which lets us open up.

So I have tried to take today to rest. I put my routines on a bit of a pause. And frustratingly it only made me feel worse. The build up from the adrenaline spike wearing off. But it was a reminder that living life with highs and lows may sound fun but ultimately takes more out of you than being diligent about routines and rhythms.

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Chronic Disease Chronicle

Day 10 and The Migraine

When I committed to writing a long form piece every day I told myself a lie. I told myself It was no big deal to make a daily commitment. I told myself I’d find a way to put fingers to keyboard no matter what.

I told myself this lie knowing full well that willpower was never issue. My addiction to my willpower was the issue.

You see I’m a workaholic. And I made my physical illnesses significantly worse because I tried to exert willpower over them. I tanked my body into a kind of rock bottom that forced me to stop my whole life.

I told myself I physically couldn’t do it anymore. But that was a lie too. Even at my worst physically I had secret. I could still work through it. I could muster up my resources and be “on” for just long enough to get a job done. And then I would crash. Bed ridden. Pain addled. But I could will myself to action. I only began my recovery when I admitted to myself that I wasn’t willing to pay the price anymore. I knew eventually I wouldn’t just crash. I would force myself to perform when weak and I’d kill myself. I knew deep down my sickness was that I had the willpower to kill myself with work. So I decided to turn that willpower towards recovery. I stopped. And I healed.

So I’m a bit sad to see myself caught in the same lies again. That willpower is what matters. That I can always do what needs to be done. That I lied to myself by saying that it was no big deal to write every day. Because some days I won’t feel well. And I’ll be tempted to use my willpower to overcome it in order to keep my promise that I will write every day.

I bring all this up because I have had a migraine for the past 24 hours. It came on as was writing yesterday’s post. I felt it in my forhead building. I crashed out of an important virtual gathering last night crying on the floor as I dumped my dresser drawer searching for an Imitrax. I’ve been struggling with the migraine all day. So the post I had planned to write (media training for normies part 2) has been at the edge of my addled brain all day. It took till 6pm for me to realize I’d relapsed. I was going to use my willpower to power through the lie that that I could do it.

Except I can’t. Noises make me cringe. Bright lights make me shrink back. I’m sick to my stomach. I couldn’t bring myself to go for a hike in the fresh snow today even though I love stomping through undisturbed powder.

So I’m giving myself a pass. I’m admitting the lie to my teller. I won’t write up some advice on media today. Maybe I won’t write it tomorrow either. I’ll do it when I do it. I won’t try to prove to myself what I already know. Willpower isn’t the issue. Willing myself to recognize my limitations is the challenge. One day at a time right?

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Chronicle

Time Rich But Energy Poor

I’ve got nothing but time. It’s been two years since I was diagnosed with an autoimmune disease that took my ability to walk and work. Thankfully only for a time. I’m on other side mostly which has afforded me a chance at introspection on the experience of living with all the time in the world but none of the energy to live it. When you are busy you have fantasies about time. The freedom it will afford you. What you will do with it. Canceling a plan is a delicious pleasure. You crave free time. Which is a misnomer really. Nothing about time is ever free. It’s the most expensive commodity we have. And you can’t really buy more.

So it’s an an odd sensation going from being busy to have total control over your time. It’s being wealthy in the truest sense. I’m a time billionaire. I have most of my life ahead of me and no real claims on my time. But when I was working on recovery I found that despite having no schedule or obligation I couldn’t make any use of my time. I was like the bibliophile Henry Bemis in Twilight Zone who is stranded in a library after a nuclear apocalypse but breaks his glasses before he can even crack a book. He had all the time in the world but no way to spend it. It’s a heartbreaking realization.

For the first time in my life I answered to no one. I spent my day in bed. But not because I wanted to. Because I couldn’t get myself out of bed. People would ask me well how do you spend your time? “If I were you I’d binge watch television or catch up on all the great works of literature.” I’d try to be polite about it but I was too tired to hold my head up on a pillow and follow a plot. My mind was too foggy and slow to take in insights. I lay in bed in a perpetual twilight. Barely cogent. Like Henry Bemis just as I thought I would have all the time in the world human frailty intervened. Without his glasses he couldn’t read. Without my health I couldn’t think. And like Henry my greatest pleasure was ripped away.

Unlike Henry Bemis I got better. We will never know if he found another pair of reading glasses in his bombed out world. I like to think he did. Maybe he wandered stumbling for miles and found an optometrist store with just the right prescription.

A new section I’ll add to each day with some media and consumables I found interesting.

Cosmetics: I’ve recently become diligent about applying vitamin C as a skin serum and my face has never looked better. I use this Superdose from Beauty Pie.

Media: New York Magazine is laundering the ZeroHedge conspiracy that the virus is escaped from a lab. So that’s fun to see come full circle to media legitimacy. Zero Hedge walked so NY Mag could run?

Food: I ate pulled pork from West End Tavern in Boulder.

Clothing: For my own amusement I wore a pair of pink sweatpants while taking my daily hike.

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Chronicle

The Sickness Unto Wokeness

Everyone has their own cross to bear. You never know what suffering someone is carrying inside. Platitudes designed to increase empathy towards the other are a common linguistic trope. Humans need reminding of our essential condition to keep us from holding others to higher standards than we hold for ourselves.

I think about empathy a lot and the way we often struggle to extend it towards others, as I live with a chronic disease. When pain is a constant companion it’s easy to demand that others see our full humanity. Even when at the bottom of our own well of suffering, we struggle to extend the same kindness. If anything it is because we often live without the light of an easy existence we are willing to do more to accommodate another human soul. Because the thing about regular reminders of human frailty? It works. Slowly those with challenges do become more attuned to the struggles of their fellow man. Their heart softens when reminded that others suffer as they do.

Because the true blessing of disease in all its forms is the persistent reminder it provides to cut your fellow man some fucking slack. Someone blocks you online? They must be fighting their own hardest battle. A stranger is an asshole to you for no reason? You don’t know what is going on in their heart. Those of us that live with chronic diseases and disability have a special superpower that short circuits the tendency towards cynicism. Having uncharitable thoughts towards a friend who is chronically late or unreliable is almost impossible when you too fight for the normalcy of consistency and timeliness, as a disease flare can occur at random. We aren’t saints but we know human frailty is no sin.

I’ve long thought that anyone with significant disadvantages in life, like a chronic disease, is more likely to be sympathetic to a gentler, kinder set of societal conditions. We aren’t all leftist or committed to equity work. Hell I’m a libertarian. But the chronic disease community has more than its fair share of people who believe in social safety nets and the role of government in protecting its citizens. And the tendency to police for ableism can be sharp. Screeds toward self reliance or even off hand jokes about the morality of sickness just don’t land for chronic disease patients. And why wouldn’t it? Asking for the golden rule seems reasonable. It’s a bare minimum.

All this is to say I’m more likely to empathize with the social justice warrior set than those who are convinced it will be the downfall of civilization. Is it irritating to always be reminded of the multitudes of the human conditions and the identities that are built from suffering? Sure. Do people abuse the hierarchy of perceived victimhood for personal gain? That is as American as apple pie. But we are engaged in a constant existential battle to get ourselves out from the bottom of the hierarchy heap. The churning inhumanity of systems beyond our control makes us more attuned to hypocrisy. It makes us less rigid about opportunity, access and outcomes. We can see someone suffering and realize “there but for the Grace of God go I.” I’ll not defend the byproducts of a polarized society. I’ll will defend extending an extra beat of human kindness in your journey.

So the next time you find yourself tempted to be snide about an activist and the language they use remember me before you let less complaints about the softness or stupidity of woke society. Because what most of us are asking for is a reasonable accommodation of our humanity. You know me to be a good faith person. I’m asking that you approach me with the empathy and kindness that comes from being genuinely caring about the plight of someone you know. That’s what being woke is; empathy. And if someone you respect asks for it you grant it.