Tag: Illness

Categories
Chronic Disease Finance Internet Culture

Day 46 & Time Value

My day went entirely off the rails around 5pm. A doctor with a very particular specialty that my current general practitioner wants me to see didn’t have any availability until mid April. I took the first available appointment and said I will take literally any cancellation you have. Well they had a cancellation for tomorrow at 11:20am and it’s now been 18 minutes since their email was sent as I was, ironically, in another doctor’s appointment (my therapist).

Upon getting out of my appointment, my husband (who is on my healthcare email since being sick in America is basically a part time job) immediately tells me to check my email as he checks how far the drive to Denver will be and if he can drive me as I frantically check calendars. We email another commitment we had saying sorry we have to cancel for a crucial medical appointment. We discuss if this drive is feasible as he has a 10am. Decide that it will be fine. Approximately 23 minutes since the email was sent have elapsed. We email to say yes.

They email back thirty minutes later telling me that someone else took the appointment. I literally scream. I tell them to again let me know if any other cancellations I will take anything available I am a 35 minute drive away.

Meanwhile I get an email from some global consulting firm asking me if I would talk to them about direct to consumer cosmetics companies for $500 an hour. I initially say yes sure why not. And then I see their questions.

Can you discuss the following: Key drivers to expand digital outreach?

I scratch my head. I mean I guess. Key drivers to what? For what purpose. Digital outreach to whom to achieve what ends? This sounds like management consulting drivel. So I look at the next question.

Can you discuss the following: Strategies to effectively utilize online+offline channels?

At this point I lose it. Utilize what channels for what ends! I’m an entrepreneur for fuck’s sake. We either deal in complete pie in the sky or incredibly detailed absolutes. We do not faff about discussing utilizing channels for …strategies. I email the recruiter saying these questions are better suited to a management consultant and I can’t be helpful. Sure $500 is a lot for an hour of my time but an hour of my sanity?

Meanwhile one of my absolute favorite human beings, who is also an investor, has emailed me to ask for help with an opportunity a founder I introduced him to has on the table. I tell him my entire afternoon is available to run the numbers and I’ll pull out my previous actuals for a similar situation so we can figure out a way to help her score this win.

This is all an elaborate way of saying that the time value of your life doesn’t have an easy dollar value attached to it. If it’s your health? Literally will cancel everything to get to a doctor. So will your spouse. Your friends will understand if you prioritize the doctor. If it’s relationships that matter to you then you will go out of your way to help someone succeed. But $500 to bullshit someone? I guess I’d take a pass on that.

Categories
Chronic Disease Chronicle

Day 40 and Forgetting

When I first committed to writing “something” every single day I didn’t have a lot on my schedule. I was busy with routines for my recovery (I’ve been busting my ass to overcome an autoimmune issue that presents in my spine) but most of those obligations didn’t require coordination with anyone but myself and my doctors. It can be a full time job between medicines, supplements, treatments, testing, and insurance. But it wasn’t hard for me to find time to write something. Hasn’t always been polished but I’ve always got “something” out the door.

Today is the first day since that commitment to write pushed up against a building set of obligations to other people and projects. My medical stuff felt easy and part of a natural routine. And I didn’t take any downtown for recovery between obligations. I used to buffer my obligations with naps or even whole days of rest. Increasingly I have the capacity to do big blocks without any breaks. Which is how I find myself at 9pm without having set out a quiet block to write my thoughts.

I cannot tell you how exciting it is to have a productive day of work and healthy habits and find myself thinking well huh 15 hours have gone by since I woke up and yet I found no time to write? I look back and see no there really wasn’t an hour or two where I was in bed on my phone. That’s a first for me in quite sometime. I don’t feel exhausted or depleted. I feel if anything pleasantly energetic. Like I need to begin my bedtime routine to let myself come down. And I cannot wait to pick back up what I didn’t accomplish today first thing in the morning.

My human capacity to forget is kicking in. I’m forgetting what it was like to be unable to walk. I’m forgetting what it was like to be in so much pain I couldn’t think clearly. I’m forgetting the soul crushing exhaustion that took all but the most basic activities from me. I wouldn’t mind forgetting the bad parts to be honest. If I could just remember the emotional depths and new strengths I discovered I’d be pleased. I’m sure I’ll have a flare soon and become newly intimate with the ways pain overtakes all life. But I enjoyed forgetting it today. And maybe if I’m lucky I’ll have more time to keep forgetting.

Categories
Chronic Disease Chronicle Politics

Day 36 and Responsibility For Yourself

As a libertarian, personal responsibility is a foundational philosophy. Owning your decisions and their impacts on others is crucial for freedom. It’s also an impossible standard at which we fail daily.

Humans are selfish and fallible creatures, prone to rationalization and justification. We tell ourselves stories about our innate goodness in order to shield ourselves from the pain of our sins. We believe our own lies first.

This has been particularly apparent to me, once again, during the pandemic, as I’ve watched family members make choices over and over again that show how much they need me to forgive their sins. As if I was their own personal Jesus and not their daughter or sister. Ready to tell them that leisure travel is fine because well they are probably being safe and oh sure winter is just so hard. Mental health is just such a struggle isn’t it?

I’m no messiah. I am not here to take your sins and wash them away. I’m just as much a sinner as you. And I’m certainly not the best person to ask forgiveness of when it comes to the health of others. I’m the personification of how your decisions actually affect real people.

You know our little stories about how “the sick and elderly should stay home and keep themselves safe because…list of rational reasons.” We’ve turned it into an entire political stance. We’ve built it into a moral edifice. When it’s just a lie we need to feel better about our sins to survive.

And so I stay at home. I don’t interact with other people. I see my husband and my doctors. Because I know I’m responsible for my own life and my own health and nobody else will be. I’m not asking others to be responsible for me that haven’t actively chosen this as their life path (with thanks to my husband and mother who did).

But I am asking my other family members be emotionally truthful with me. I’m asking them to admit to themselves and to me that their pleasures are more important to them my quality of life. That by taking a trip to a far away beach that they perceive as safe for them, they add to the aggregate set of decisions on a collective level that forces me to stay at home. That those decisions will keep me at home alone cut off from normal activities for longer. Basic life.

If you engage in those choices, admit the truth to yourself. And admit it to me. That your enjoyment of life is more important than me living mine safely. To not do so is to lie to yourself and to me. I can accept your choice. I cannot accept your lie.

I’m shouldering the sum total of all the bad decisions and little sins of everyone else who either can’t or won’t take responsibility for the impact that their own choices add up to at the societal level. It makes me angry, I’m a libertarian not an ubermenschen. I don’t want to carry responsibility for everyone else. If I was I’d probably have different politics. I’m only responsible for myself. So stop asking me to accept responsibility for yours.

Categories
Chronic Disease Chronicle

Day 34 and Absence of Evidence

I’ve been rising through a noticeable uptick in energy and functionality. If I compare myself to where I was over the summer it’s practically night and day. I credit a small portion of this to moving back to my home state of Colorado. But it’s largely due to turning over my healthcare to some fairly unorthodox health practitioners.

I felt like I wasn’t making any more progress with my traditional doctors. I suffer from an autoimmune condition which is treated by a rheumatologist in New York. He’s world class and took me in as a patient when I could barely walk a few steps without a cane. Thanks to steroids, chemo drugs, and biologic injections I have back basic functionality but I wasn’t living a life free of pain nor did I have the energy to be out of bed more than a few hours a day. So when I arrived in Colorado and was, through pure kismet, referred to what I can really only describe as a healer I said “fuck it why not?”

I’m not fully prepared to go into all the details now but she threw the book at me. Supplements, herbs, weird machines, biofeedback, and other stuff I fear to put into words as it sounds like quackery. But god damn if it isn’t working.

I’m quite tired from a busy day (a nice change from just always being tired for no reason) so I won’t belabor my writing just to pad the word count. But if you feel like you have health issues that aren’t being helped by traditional medicine what have you got to lose by asking around for some alternatives?

Categories
Chronic Disease Chronicle

Day 24 and Going Easy On Ourselves

I keep a daily journal with some terse observations. I found it a manageable habit over the course of several years. So I was disappointed to look back over January 24th’s 2020 log today. It seemed as if everything in my life had slightly better metrics.

I couldn’t quite figure this out as I think in general my life is going quite well. I’m happily living in Colorado. I’m near my parents (even if needed isolation has meant seeing a lot less of them than hoped). I’ve had some excellent health breakthroughs thanks to more holistic care available in Boulder. So why did it seem like I was struggling more year over year?

And then I realized, oh of course, I just got used to the pandemic. The stress is clearly more but I’ve acculturated. Last January it hadn’t hit daily life yet. The daily stress and turmoil of an uncontrolled disease was still in its “oh shit if this hits us it will be bad phase.” A year along and I’ve become accustomed to the little indignities and struggles of pandemic living. But even as I’m happy with the changes it’s brought to my life it has sadly lowered the quality of life in meaningful ways for everyone. I don’t like dwelling on this as I need the improvements to be meaningful too. And I’m sure they are in ways I’ll appreciate once (if?) this all goes back to normal. But I know it’s going to be another six months from here.

I’m generally optimistic about my preparedness for all types of outcomes. And I am thrilled for the four year reprieve that comes with not having to constantly hear about political news. But this is all still taking its toll. So maybe it’s ok if my medication load is a little higher. I’m alive and well. Who cares if I need a bit more support. If I don’t feel like I look and move as beautifully and easily as I hoped that’s alright in the face of a generational crisis. I can take it easy on myself. If it’s all frustration and pain that’s no way to live. I don’t need to fight for progress every inch of the way. Sometimes it’s alright just to be comfortable and alive.

Categories
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.

Categories
Chronicle Politics

Day 12 and The Shopping Binge

It’s always the after effects that get you. Last Wednesday’s insurrection riots in the capital left me reeling. This of course is a choice. But taking responsibility for the emotional turmoil is taking a few more days than I’d hoped. I let in too much stress and worry over an event that I can do nothing to improve and is miles away.

Which isn’t to say that I shouldn’t be upset only that I know I’ve let more stress into my life this week than I can comfortably handle. And while I’m lucky to have many routines that help reduce unnecessary anxiety like a meditation practice and a daily hike into the mountain foothills, I decided I should greet this crisis with a bit more force.

So ironically an exercise about about creating more is now chronicling what I consumed today. What an American way of handling things. I went on Amazon and binged on through an essential oil diffuser, a salt rock lamp, some paper and pastels, a white sage smudger and a Tibetan singing bowl for more meditation practice. Lets hope some improvements in my environment and a little bit of creative activity can keep me from worrying to much.

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.