A few years ago, in 2015, I started to get sick. While I’ve struggled with digestive issues for about ten years (and been able to mostly manage them with diet), this was something new- one day on the CDT I woke up with a flu-like fatigue, akin to the lead blanket they put on you at the dentist’s office, dizziness, and blurred vision, as well as joint pain and overall inflammation. While I was in this unfamiliar place I couldn’t think, read, or remember things very well. I felt fuzzy and disoriented and was overcome with what I can only describe as a massive, shapeless, impending doom. If you go back and read my CDT journals from 2015 (here or click the link in the menu above), you can see the exact moment when I get sick (and after which the entries become a little… dark). It was a few weeks after I drank water from a cow pond in New Mexico that my steripen wasn’t actually capable of purifying (it was brown and opaque) and after which I stopped filtering my water altogether, in Montana. While I had no digestive upset, I finally found a clinic that agreed to test my stool and I tested positive for giardia. I treated the giardia with flagyl, felt better for about two weeks and then wham- the sickness came back, even though I no longer tested positive for the G. And the mystery sickness has been coming and going ever since, alongside my long-standing digestive issues. I ordered some chinese herbs from my acupuncturist that help me for some reason I don’t understand (but she does) and eventually transitioned to the autoimmune paleo diet (most of the time). These two things have allowed me to live my life… about two thirds of the time. Unfortunately, along with intense exercise (no more five month trails for me!) The Sickness is triggered by acute stress, which is, unfortunately, a sometimes unavoidable part of life. As of May 2017, I have days, weeks even! Where I feel almost normal- where I can run and hike, think clearly, remember things, where I dream and scheme and the future is suffused with possibility- and I have days where I can hardly do the dishes and walk my dog. Days where I don’t recognize people’s faces, can’t organize my thoughts, and the lead blanket of doom and dizziness keeps me in my bed and knocks down all my plans, all my schemes and dreams and any sense of a future at all, brings me back to the most basic level of embodiment- breathing. Existing. Just being alive.
I recently got health insurance in Arizona (which will last just until trump takes it away) and started seeing a (condescending, borderline mean, and surprisingly young?) primary care provider who seems to know nothing about anything and doesn’t actually believe me when I tell her that I’m sick. I got a colonoscopy, the results of which came back normal. Last week I had the TSH test for my thyroid, and that came back normal. I’m trying to get the doctor to give me the (more) accurate test for lyme’s disease (western blot, I guess?) (I’ve had the apparently rarely accurate one already- the ELISA test, it came back negative)(I’ve never had a rash from a tick but I have been bitten so hey, you never know) and I’m trying to get a referral to a GI specialist so I can get tested for far-flung parasites that are not commonly tested for but which- who knows! Maybe I have.
I’m not the first person to get giardia and afterwards develop some weird chronic autoimmune-y thing. There are a number of studies where this has been shown to be a thing- give it a google if you feel like falling down the rabbit hole of the medical interwebs. In some ways, my search for a diagnoses is arbitrary- I have a thing that is similar to a thing a lot of other people I know have, and here we are struggling, all together, mere mortals in the grinding maw of existence having our brief go of it before we blink out entirely. Through most of human history, the average life expectancy was 35. I’m 34. Life is a gift, I know. Who am I to think I am entitled to anything else but what every other living being has experienced for infinity. Life is suffering, life is striving, life is brief moments of transcendence. Nothing is promised and in the end, everything we love is taken away from us. Not one living being is exempt from this ultimate and final law- no matter if you are rich, or powerful, the top of the food chain or at the bottom of the sea, if you live a thousand years ago or a hundred years in the future.
Seven years ago I was in a serious relationship with a wonderful human named Corinne. We planned to spend our lives together because even though “forever” might only mean “four years”, this is still a good and proper thing to do. We discussed the trajectories of our lives, growing old, aging. We talked about dementia. When we were old together, we decided, we’d wear little vials of poison around our necks. Each day we’d watch the other do crossword puzzles. As soon as cognitive abilities began to slip, the poison would go in the pudding. We’d do this favor for each other because dementia was, we agreed, a fate much worse than death. We’d do this favor out of love. We laughed while we talked about this. “In the pudding!” we said.
The worst part about The Sickness, when I’m having a flare-up, is not the fatigue, the joint pain, the digestive issues. It’s the loss of cognitive abilities. When I’m sick, and often in the time it takes me to recover afterwards, I cannot write. I just can’t. I can hardly organize my thoughts, let alone create interesting new ones. All my writing projects- and I have a lot of them! Sit untended. When I’m in this place, the one thing I have always had, no matter what, in spite of everything, the thing on which I base my self worth, however misguided that may be, is taken away from me. I have never ever not been able to write. Not being able to write is the thing that really knocks me down, that brings me back to the most basic level of embodiment. When I’m in this place, I breathe. I exist. And I cry. Sometimes I cry.
I’m trying really, really hard right now- we all are, and I know I’m not alone. I don’t exist in a vacuum, my god I have so many friends with chronic illness all on their own journeys, I am just one of many, and I have support too, and I’m also lucky, in many many many ways. We all struggle in this brief time we’re allowed as humans and then we’re reincarnated as a flower, a coyote, a tree, a saguaro, and then a human again because the struggle never ends, it goes on and on and on. I’m here to witness that, to be honest I have no idea what the fuck is going on- isn’t that what life is? Just enough time to say “what the fuck is going on” and then it’s all over. I’m here to witness the confusion for as long as I may, for as long as the universe, which is more powerful even than trump (thank god) allows me to. Maybe I’ll finish the three books I’m writing or maybe there’ll be a nuclear war and the only thing that will get finished is modern human civilization. Fuck, I don’t have any answers. If anything, I’m trying to approach all of this with a sense of curiosity and, if I’m really really lucky, with wonder. Also I have a dog, and when I’m in the just-existing place he lays in bed with me and I smell his good old pennies/salami-on-a-hot-dashboard smell and watch his little chest go up and down with contentment and I know that if he can be grateful for what he has (nothing), then I can be grateful too.
I’ll write a more positive thing soon. In the meantime, thanx for listening.