Tag: Chronic Disease

Categories
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?

Categories
Chronicle

On Being Extremely Online

Many folks find social media to be overwhelming. It’s a constant barrage of sensory inputs. It’s not necessarily the most pleasant unless, like me, you live for large information loads. It provides me an emotional comfort get data points. One of the few things I could do when sick was scroll Twitter and read news (longer form not so much) so I have become as they say “extremely online”

I follow shifts in opinion like a rancher can sense a change in the winds. Being extremely online skews your politics in some ways. I can recite minutia in history and policy. Which makes it harder to form firm opinions. It’s all simply too nuanced to be partisan. Then I speak to family members who are dead sure of their position who can’t answer a basic question about how they decided to hold the opinion. It’s not so much that they are low information voters so much as I’m a saturated voter. If a pollster tried to talk to me they couldn’t place me. Which is how I ended up being the token white conservative that voted for Clinton that Frank Luntz brought to Oprah. So being a saturated voter does have its perks.

This saturation effect isn’t just true for politics. I swim in economic data. I follow petty feuds and undercurrents in venture capital. I have entire magazine mastheads committed to memory. I know what stories writers wrote a decade ago. I probably know CV of some editors better they they know themselves.

This also makes it relatively easy for me to move between different types of communities. Code switching isn’t just for race. Online it can be the difference between getting ratio’d or being promoted. And thanks to the constant scrolling and consumption I can talk just as easily to size proud chronic disease communities as I can the swol bros who insist being jacked is a moral authority. Which I find to be genuinely additive to my life. Diversity of opinion makes you smarter. It makes you kinder.

And holy shit does being in the information flow of diverse communities give you an edge. My favorite thing to do on Twitter is to ask someone to explain a controversy or event and nine times out of ten I get a nuanced thoughtful answer…from the source. Just this week I was feeling overwhelmed trying to parse the Bret Weinstein controversy at Evergreen college. It’s one of the original culture war battles on campus but I’ve never understood it. Media was intense and wedded to their priors. I couldn’t make heads or trails of it. So I asked. And within hours Bret himself took the time to point me towards sources so I could become informed. I still don’t know exactly how I feel about it but I do know if you seek in good faith the internet will provide. If you can find a way to intake more media and don’t let it overwhelm you being extremely online will make your life significantly better. Or it will melt your brain. No guarantees.

Media: In which the venerable conservative George Will loses his shit on the venal craven fuck nuts that are senators Hawley and Cruz. I also reread the interview I mentioned above with Oprah and I have to say I was spot on in my predictions.

Julie Fredrickson being interviewed by Oprah Winfrey in 2016 about the election of Trump.

Food: I was out of pour over coffee so I acquired a latte from Spruce Confections. Ok I’ll also admit I got a ham and cheese croissant too. We then made a trip to Costco and acquired quite a bit of meat and vegetables so I don’t repeat that nonsense too often.

Categories
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.