The Blast Radius of My Body: On surviving disability, shedding shame, and living in the wreckage of a body you no longer recognize

A Personal Essay by Dakota Parks

✨ Health update, ramblings of a tired, worn-down poet exploring her garden, and a little personal essay on surviving illness in a world that doesn’t slow down. 💌💊

My health has been a rollercoaster for two years. I’ve struggled to share about it—or really to post anything on social media—because what can I offer the world when I spend every morning begging for mercy, crying with yellow bile on my lips above a porcelain bowl, clinging to my ribs that feel like they’re being snapped and pried out of my body like medieval torture? Or pacing my house for hours, popping Zofran like candy, begging my body to please accept toast or a banana, and stirring through my pharmaceutical cornucopia for any solution to the day’s new ailment?

I often think about how few of my friends have experienced illness so severe that you confront death itself— the realization that you may not survive how sick you are—or what Johanna Hedva calls the “blast radius of disability.” You are standing in the carcass of a bombed crater—dirt on your face, blood leaking from unknown places, unsure what’s wrong with your body or what damage the time and radiation will cause later, staring at the life you had before, and the one you’re left with after disability.

Before, you could work 60-hour weeks across 2–3 jobs and nonprofits while going to grad school and maintaining a 4.0 GPA, writing multiple term papers, and still have the energy to submit regularly to literary journals to publish your poetry, attend art and literary events every week, and see your friends nonstop. Now, you struggle to even make plans with friends or acquaintances because you don’t know how your body will operate tomorrow—let alone in two weeks. And god knows it’s easier to cancel lunch invites than explain that the only food I can reliably eat outside my house is either some random $55 entrée at a high-end restaurant—or Moe’s burritos and sinful fast-food chicken I should probably be morally ashamed to buy as a queer person.

You are in the blast radius—losing friends, losing jobs, losing hobbies, losing the spark of a life that no longer exists as it once did. These days, I wage war with my stomach and the contents of my kitchen every morning. I am thankful to stomach any scraps of food and sit down by 1 p.m. to work on poetry, tend to my freelance marketing and tourism clients, churn out news coverage, or write pro bono copy for friends and nonprofits. But I’m often too ill to write, or garden, or ride my bike, or bake sourdough, or even see my friends. So I fall into this well of despair that I’ll never write again, or love again, or feel the joy of pollinators grazing my skin on a hike with the Florida sun glistening on my shoulders—just screaming into my toilet bowl, chewing on the knowledge that capitalism has brainwashed me into thinking I am a bad person for not being able to do the things I love or work a standard 9–5 job.

Over the past two years, I’ve had extensive and repeat testing done by three separate hospitals, visited over 15 specialist doctors, and tried 20+ prescription drugs, diets, life changes—even a six-month sabbatical from work. I like to think I would try anything at this point. I have a tattoo on my leg from poet and my personal literary father figure Allen Ginsberg that says, “If I had a soul, I sold it for pretty words.” The truth is, I would sell my soul to stop this near-constant nausea that eats away at the core of my personhood. I recently started reading Jean Paul Sartre’s ‘Nausea’ to see if he captures it accurately.

So far, I’ve been diagnosed with bile reflux gastritis—which slowly corrodes your stomach lining day by day, leaving you nauseous, unable to eat, nutrient deficient, brain fogged, with random excruciating rib pain and feeling utterly exhausted until you either vomit yellow bile nonstop or fill your stomach with nutritional or medicinal binders to soak up the bile. It has no cure and very little research funding, but online support groups have taught me how to manage it. Then there are the weird symptoms no one can explain like the chronic dry eye and my eyes swelling up like painful, red puffy balloons for days and weeks at a time no matter if I’m home or traveling. I’ve also been diagnosed with endometriosis, potentially mast cell activation syndrome, and the devilish twin diagnoses of POTS and Ehlers-Danlos. While we still have more testing and answers to gather, let me tell you though, the taste of a diagnosis on your lips after years of screaming and demanding with profit-driven doctors who truly don’t care about long-term health that something is seriously wrong… a delightful benediction in a silver chalice. I have finally found an arsenal of feminist, badass female doctors who are listening to me and demanding the care I deserve.

Last week, I had endometriosis surgery to check how badly it was growing onto my colon and GI tract to see if it would alleviate my GI symptoms and to potentially receive a hysterectomy. Luckily, it was stage 2 endo instead of stage 4, so they removed my fallopian tubes (hell yeah voluntary female sterilization in Trump’s America), a golf ball-sized endometrioma from one ovary, another small cyst from the other ovary, and a lot of scar tissue. While I got to keep my old trusty uterus for now, this week has been hell. I did not recover from surgery like most people.

I ended up getting admitted to the hospital for surgery complications and thought I truly might die like a Victorian woman—feverish diarrhea, dehydration, clinging to my empty, throbbing womb and screaming delirium for a hint of mercy. It has been physically and mentally exhausting, and I still have 300 emails and 100 text messages to respond to. As an inbox-zero girlie pop, it’s driving my anxiety through the roof. So, if you’re my friend, colleague, or one of my freelance clients (hiiii queens, we both know I scheduled all of our deadlines perfectly, so I will send you copy and my love soon), so stay tuned. I’m feeling so much better, but I’m still dealing with my normal daily disorders and ailments too—so we push on. Nothing can beat the joy of dancing in my kitchen to some lesbian pop music this morning, icing my uterus, feeding my sourdough and making oatmeal after seven days of being in so much pain I could barely walk or breathe.

My partners, family, and friends have already been amazing so far, but I am VERY bad at asking for help when I’m in a health flare. I’ve had SO many people ask how they can support me through surgery recovery. If you want to help, I can always use home-cooked meals, basic groceries like even a nice fruit or pastry left on my doorstep, and help around the house—mowing the yard and tending to my garden, light housekeeping, etc. I’ll need another week or two to fully recover, but I already struggle with food on a good day, let alone now. The grocery store is truly my own version of hell that I visit multiple times a week. So, any food that I don’t have to think about purchasing or preparing right now is a genuine blessing. I cried today asking one of my best friends to cook a few meals for me, which they immediately jumped to help. It’s still hard accepting help sometimes.

If you are culinarily blessed, I’m happy to share my food restrictions and would love some easy soups and meals that freeze well. (For those who want the basics: I mainly need dairy-free food with chicken, turkey, and tofu as the only “meat” protein sources, and I LOVE all Asian and Mexican cuisines as well as pasta, pot pies, stir fries, sushi, etc. In general, most American dishes are impossible for me unless they are vegan. Too much meat, fat, and dairy. I also still eat trace amounts of everything to keep my body from becoming truly anaphylaxis allergic to a food group, so you will not harm me or need to worry too hard about cross contamination, I promise.)

Thanks y’all.

Love and rambling,

Dakota

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