To Be Irrefutable
“No,” the rheumatologist says, “we don’t know what causes joint pain. Your pain is not normal, it’s not just aging. But you don’t have rheumatoid arthritis, and there’s nothing that you can do to prevent yourself from getting rheumatoid arthritis. If biking makes the pain feel better, keep biking. Buy yourself some presents to keep going. Buy yourself a Peloton. Go home and tell your husband that I said you could buy yourself a present.”
…
She wanted to write an essay about chronic illness and invisible disability. She thought about this essay as she drove to the dispensary to get a different kind of CBD because the CBD that had worked yesterday and the day before wasn’t working anymore. She thought about the essay as she read the email from her ex-husband explaining all the reasons why he did not think he needed to pay more child support although he had just inherited $1 million and had no mortgage. She thought about the essay while she made another dinner, after the first dinner made her oldest, sickest child feel more ill. She thought about the essay and how she should write the essay, how she wanted to write the essay, and then she did all the other things that had to be done.
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She wanted to write about being chronically ill but she had to teach this morning. At the start of class, at the start of the semester, she said for the first time, I have an immunocompromised child at home and we’re in a Covid surge, so I’m requesting that you wear a mask if you’re able to. The students nodded. Three out of twenty took out masks and put them on. She tried not to hate the rest of them, their peachy cheeks and their straightened teeth gleaming at her like dull knives.
She wanted to write about being ill but she was not as ill as her child—her child who was seventeen, who had left for college and everyone had said, So amazing! So wonderful! You did it! like a bunch of fools.
She’d cried so hard she got headaches from dehydration, stacked the pile of damp wood in the garage to tire out her panicking heart, couldn’t sleep or eat for a week, waited for the text or call to come, saying they needed to be taken to the ER.
It did come.
She wanted to write about being chronically ill, having an invisible disability, having a severely ill child, having a child who was visibly disabled when they were able to leave the house, and another ill child, less ill, less visible. She had a week where there was a little ease, a little space, and she wrote a few words on Instagram about it.
“Hope you get better soon!” one of the comments said.
She hated them. Hated her before-diagnosis self, that self who might have said something just as ignorant or more, that self who was very sick but didn’t understand that yet. Who was kneeling on the bathroom floor again in the deep night, vomiting and begging silently for it to stop. Who had been to the doctor, been told it didn’t seem to be lactose intolerance and they didn’t have any other ideas. Who wanted to be well, who thought, shivering and wrapped in towels that she would throw off in the tsunami of heat moments later when the next heaves came, that being well was a thing that could still happen. That even though this had already happened dozens of times, that surely it never would again.
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She wanted to write an essay but first the twelve-year-old had lost a pound in the last six months and had no appetite. First the paperwork requesting disability benefits from the insurance company had to be filled out, printed, signed, and mailed. The intake forms and intake calls for the two pediatricians for a medical cannabis license for the seventeen year old had to be completed.
Do you carry a diagnosis that is either a terminal illness or a permanent disability? Over the last year, how many times did you seek professional medical care for any of your concerns? Out of 10, how many of your days come with anxiety / stress / grief ?
The grey tabby curled up in the basket in the window. Fairy lights strung around the seventeen-year-old’s bed and a rainbow silk cloth above it. The wooden shelf, the clear plastic bin with needles filled with saline, heparin, green caps, alcohol wipes. The lace white curtains found in a free bin. The buckwheat pillow, covered with a heating pad. The body pillow with a blue heathered cover. Another heating pad. A purple fuzzy cat bed.
Maybe we could propose a project for the leadership center about disabled and chronically ill leadership, she wrote to a colleague, who replied, I would love to but I’m totally swamped. And they were. The stories needed to be heard, the leaders deserved to be recognized and funded, and everyone was so fucking tired.
She wanted to propose a project where disabled and chronically ill leaders got to take a nap and then smoke a joint and eat some snacks and cry together and not explain a damn thing.
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She appreciated the author’s description of chronic illness that gets very very bad, being like Alice falling through the looking glass, falling into an upside down world where many things appear the same except nightmarish, clownish versions of themselves.
Except that Alice didn’t have to look out on all the people she’d left behind, didn’t have to talk to them and answer their Monday questions.
She was as disappeared as Alice, but much worse than that, because she was also still right here.
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The chiropractor says, Listen, you’ve got a lot going on, there’s this patch that I used to recover from long Covid and maybe it would help you, my friend told me about it, it’s definitely a pyramid scheme, but I think she told me not to sell it to me, but just because she really wanted me to feel better, you can go on their website there’s hundreds of testimonials I know it’s the Internet you can’t really tell but they sound like real people and it’s almost doable it’s $99 a month and so this patch it activates the copper in your body and stimulates production of stem cells it’s almost doable how much it costs, you can become a distributor but you don’t have to really sell it to anyone, you can just get it at the wholesale cost for yourself it’s almost doable you might want to try it, it might—
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She wanted to write and she knew that she didn’t have the brain or the time or the energy to revise and revise to make it right. To make it sound good. To make it believable.
And it filled her with rage, how careful she felt she needed to be, how it was the same shit all over again to have to sound proper and correct to be believed. To have to sound smart to be worth listening to. To need some pretty pictures.
Rain licking the windows like a cat going at a bowl of milk. The golden chickens on the red front steps, clucking softly to themselves as night came on.
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She was tired of trying to explain herself before she even began because she had, actually, been trying to explain herself for over forty years now.
It had not worked.
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She wanted to write about being chronically ill and invisibly disabled, but she hadn’t read enough disability justice books, enough out of the closet chronically ill and disabled writers, and she was sitting with her child who was trying not to throw up and she was telling them jokes, talking about kittens, trying not to break down crying herself.
Her biggest fear these days was getting sick, getting really sick and no one being there to care for her young people, to cook the very specific foods in the very specific ways, and then make them again when the first round didn't work. To drive them to appointments, to go to the pharmacy, to call the doctor when the prescription hadn’t been sent yet, to read the medical papers, to drive them to the lab for tests, to message the doctor again.
She was already ill, but mostly not very ill these days, mostly not in pain, not vomiting, mostly not awake most nights crying with obsessive thought loops that did not end. She was mostly not sick but still sick, and she could not get more sick.
She lived in the best case scenario—she was white, she made little enough money that her young people had free health insurance, she lived in the US, she had beloved supportive friends. She lived in the worst case scenario—she was a woman, she made little money, she lived in the US, she was a full-time single mother, her family had illnesses that were difficult to diagnose and had no cures.
…
“No,” the pharmacist says, “we can’t sell you a syringe without a prescription. Uh, I think it’s federal law…no? Well, I guess it’s state law.”
“No,” the pharmacist says, “we haven’t received [dead name]’s prescription yet you’ll have to come back tomorrow.”
“No,” the pharmacist says, “we got the prescription but we’re out of those syringes you’ll have to come back tomorrow.”
“No,” the pharmacist says, “there’s no law about that. I'm so sorry that happened to you, people get uncomfortable and make things up. Please take these. No cost.”
…
When you’ve been sick your whole life, you are vulnerable to not realizing when you have become sick in a new and dangerous way.
When she was thirty-four and had a ruptured ectopic pregnancy, she ignored the severe cramps for weeks, ignored the day when she walked into work and immediately vomited and had to leave. She had been mysteriously vomiting her whole life, had had severe cramps before, so this didn’t seem all that remarkable until the pain was so bad that she couldn’t move and she realized her appendix might have burst. Instead, she found out that a fertilized egg had burst open her fallopian tube and she was bleeding internally.
When she was thirty-eight, she had a migraine that lasted two weeks and when it finally seemed to lift, she was unable to eat, unable to walk down her own driveway. She had just been diagnosed with hEDS after a lifetime of being sick, a diagnosis which could include any part of the body going wrong in a whole variety of ways, so she thought, ok great this is just a new way I’m sick now.
Until a friend asked her to get tested for tick diseases, and it turned out she had anaplasmosis. The problem with being sick all the time is that you are sick all the time and new sicknesses and new symptoms could be deadly or they could be just another fucking thing you have to deal with.
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She wanted to write but if she started writing, she might never stop. How would she ever put in all of the complexities, how could she write it in a way that could do justice to all of the pieces, and so the essay would just go and on and on. To never end might be just as bad as never beginning. Might be worse.
She wanted to write about what a mind fuck it was to have to protect yourself from doctors, after nearly being locked up at seventeen for an eating disorder she didn’t have, after being given meds that included death as a side effect listed right there on the bottle while she was breast feeding and the pharmacist said, I wouldn’t take this while I was breastfeeding. To not see a doctor for nearly ten years and then have your child be so sick, so often, that you had to start going to doctors all the time, all the specialists, the hospitals. To have doctors tell you again and again that it’s just anxiety, to have them tell your child again and again it’s just anxiety, and furthermore, you’re the most complicated case they’ve ever seen in their careers and they have nothing else to tell you, they don’t know why you’re telling them your new symptoms, the week before the tests come back with the diagnosis for the still-rare-but-less-rare-everyday chronic illness. To have to talk to a doctor ever again after that.
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How terrible it felt to be invited to things and have to cancel at the last minute so many times, and how terrible it felt to stop being invited to things. To get a text from friends with a photo of them all at the lake, standing in sunshine, damp and big smiles, saying we missed you, you were with us in spirit. Except she hadn’t been there in spirit. No one had told her they were going, no one had invited her and she knew why and also it sucked.
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Statistically, it’s more likely that you who are reading this are also chronically ill and/or disabled than not. If not already, you soon will be. So why is it still so hard, so scary to write to you?
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She wanted to write the essay but you can’t write an essay where the sentence just cuts off every time the sick child calls out that they need to vomit, that their IV has started back flowing blood, that they—
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To say it beautifully was also a trap. If you could make a thing that sounded lovely, it must not be that bad. The choice to communicate in as neutral—almost flat—a way as possible. To be irrefutable. To be believed because it’s just the facts.
Not that that has ever worked, either.
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Not the hero’s journey. Not getting better soon. Not manifesting it. Not brought on by her own secret desires. Not just anxiety, or in her head, or just a phase. Not normal for teenage girls. Not pulled up by bootstraps. Not grown out of. Not just that one time she— Not an apple a day. Not a cure. Not getting better soon. Not a cure. Illness as the spot where a foot steps in dry sand, the sand holds the shape for a moment then dissolves into itself.
