Learning to Live in a Body That Fights Itself

At 6:15am on the Tuesday before Thanksgiving, I am rolled into an MRI machine. “This first round will be thirty seconds.” The clinician’s voice enters the machine through a speaker from somewhere I can’t find and penetrates the two forms of ear plugs I’m wearing. “The machine will be loud.” I wore lipstick to the appointment, but I had to take it off because it had glitter in it and no metal is allowed in the machine.

I close my eyes and focus on not moving. I only clear my throat when prompted. I am in the machine for seventy-five minutes.

*

I have spent most of my life hating the fact of having a body. It makes sense that my body would eventually start to hate me back. The problems started two years ago, with numbness in the first three fingers of my left hand. It felt like I had burned them by putting out a candle. I pressed them together in the bath, feeling the callouses on the pads of my fingers thicken. In the ensuing days the numbness moved up my arm to my neck and down my left side. I dropped things, I couldn’t type, and I became an energetic kind of panicked: Googling pinched nerves; looking over the matted roots of the nervous system; reading about sciatica, carpal tunnel. I went for an X-ray during the first wave of pandemic shutdowns, sitting in the waiting room and trying to not breathe deeply.

The X-ray came back normal, and I saw a doctor (virtually) for the hand, and for ten months I got chiropractic, acupuncture, and saw a neurologist. I got a new desk (might come from bad posture), a new bed (could be the mattress), and bought a special grooved memory-foam neck pillow (desperation).

A year later, I lost the ability to walk. It began with a slight stiffening in my toes and turned into the inability to wear socks, put on most shoes, and cover my usual miles. I couldn’t sit or lie down either, my legs irritated and full of pain in ways I couldn’t make other people understand. Which led me to the MRI machine right before Thanksgiving. Lying there in the loud, plastic coffin, I made a deal with my body: I wouldn’t hate it anymore. I was going to be inside it, we were going to be okay, and move joyfully together. I set the promise to the beats I created in my head that aligned with the clanking of the MRI machine: You aren’t sick. You’re going to be okay.

*

The person in any story that’s easiest for the reader to relate to is the person forced to stand by as terrible things happen to people they love. The secondhand recipient of bad news. The boy who shoots Old Yeller. Oddly, there’s much less of a script for how you’re supposed to react when you yourself get bad news. My petitions to my body went unanswered. I got bad news. The MRI results were consistent with Multiple Sclerosis, and my doctor warned me that while the diagnosis wasn’t confirmed, it was likely. He immediately orders an MRI for my brain.

My petitions to my body went unanswered. I got bad news.

MS is an autoimmune disease where your body starts attacking your central nervous system. Nerves in the body are coated with a sheath called myelin that gets eaten away, leaving scarring called lesions in your brain and on your spine. According to what I’ve scraped from the internet while unable to sleep, symptoms are varied. I find myself wanting to keep the discussion of it as hand-wavy and noncommittal as possible because I don’t know how to say I’m afraid I will end up in a wheelchair and wouldn’t know what to say if someone said that to me.

*

I spend my Thanksgiving holiday getting on the imaging center’s calendar. A very kind voice on the other end of the phone said, “you’ll want to remove your facial jewelry before you come in.” That night I cut my septum ring out with tin snips, careful to not slice my nose, leaning closer to my bathroom mirror before applying pressure. What new thing will I compromise for illness, other than folding myself up politely into a plastic coffin filled with magnets to look at the root system of sensations?

In the five days between the MRIs—after getting the MRI of my spine, still awaiting the one ordered for my brain—I learn the prolonged tunneling of fear. For the first time in my life, I am suddenly afraid to be alone. I have lived alone for a decade. I love my people, but I flourish and produce in solitude. But left in my room with only test results I have misread several times, my mind floods with the worst parts of fear and loneliness.

My usual fantasies of fleeing to the woods now leave me with an organ-crushing loneliness. Instead, I want to lash myself to the urban concrete, to put as much of Oakland in my mouth as possible. I want to swallow all the people I love so they cannot leave me, so they cannot tire of me, and so that they press down all of my panic under the weight of their love.

I tell my mother it is probably not cancer. That there is nothing immediately coming for me. She offers to fly out to Oakland as Covid rages, and I tell her not to. My sister will be visiting with her new baby soon. My stepfather’s father is sick. It’s a long journey from Florida.

*

In the darkened days of daylight savings, I reread my results, poring over words like “lesion” and “extensive” and “demyelination.” I have to admit I am probably sick. Not probably—definitely. I feel my identity center shifting from the hero of my own life to a supporting character. Tragically ill characters come to mind: Beth from Little Women, Melanie from Gone with the Wind, timid and delicate and here to move the plot along. The tragedy is not in my mortality; I’m dying at about the rate of everyone else. It’s the loneliness of being inside an illness, which feels like trying to make people understand what it’s like to be abducted by aliens. Their skepticism or wonder makes me feel like a sideshow.

I look up things like stem cell treatments. I look up the costs of stem cell treatments. I look up the cost of MS treatment in a country without universal healthcare. I look up whether my insurance covers MS medications, and it informs me in a very cheerful paragraph that some doctors don’t even recommend medication for MS. I read the statistic that 40% of MS patients ration their medication due to the expense and the figure loops in my mind endlessly. I look up prognoses on websites with good SEO but bad information. According to their terminology, people with chronic illness are “warriors” fighting “brave battles.” I am discerning enough to know that it’s bad to do this, but I am fixated on research, on planning some version of an escape.

When I told my friends, I got four marriage proposals. I turned them all down. They are sweet, and also I am furious. Immediately, the men I know understand their greatest value is their health benefits, and it makes my chest tighten that they feel the pressure to offer; that this is what adult friendships are reduced to.

Friends and family offer to come spend time with me. I live in a major city and have many friends and loved ones, but we are all getting bad news of some flavor or another. Still, people offer to put down whatever crisis they’re holding to be with me. I wave them all away.

Instead of agreements made inside a machine, I decide to get a library of tattoos; I pledge to take more naked photos; I join a gym that will let me hang upside down from chains. I am overcome with the desire to take things for granted. To impulsively purchase, compulsively eat, walk away from meals half completed, not text loved ones back. I want to disappear and to worry people in the same breath.“There’s nothing I can do now,” I tell my mother, “Might as well drive it like I stole it.”

*

In Joan Didion’s essay, “The White Album,” she briefly mentions her own MS diagnosis. She calls the fallout of her symptoms “a sharp apprehension not of what it was like to be old but of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” Didion’s diagnosis gets to be brief, a glimpse of insight into a writer listing the strangeness of an age, but despite the brevity I can see the door. The stranger with the knife has no comedy to it, no embarrassing mask or sinister glances. The stranger is your height, your weight, and eating at your comfort and mobility. I’m locked in a body that in an attempt to protect me is harming me.

In the narrative of medicine that makes winners and losers of us all, fighting the stranger with a knife is the success. With medicine and doctors on your side. Bottomless resources. But, with my humming hands and feet that feel their center as a narrow slice of sensation, I find I now have to learn to live with this stranger. To operate in a body that doesn’t have a simple exterior enemy. The door is ours. Now we must build a house.

*

A cranial MRI is a series of photographs a person in scrubs takes of my brain. There are twenty minutes of round one, and then they inject me with contrast fluid and take another ten to fifteen minutes of photographs. I am not to move. Inside the machine is a padded hospital bed, there is a pillow under my knees, and the attendants give me a heated blanket, but I am still folded up in a small tube while a voice reassures me from a speaker that I am doing well. There’s a face cage, really a helmet, a thick plastic dome with cut-outs; I am not normally someone who experiences the fear of walls closing in, but it’s hard to imagine anything else as I’m rolled back into the machine. There is a mirror inside and the people that help me into the machine tell me it’s there if I want to see out. They are kind, courteous, and not too coddling. I can see them through the mirror, focused over the computer as they warn me “this next one will be three minutes.” I don’t make music of the screeching and vibrations this time. I dig my nails into the meat of my hands and know that regardless of the deals I strike, things have changed.

I try to keep my breaths small so I don’t move, and I struggle to feel how far I can let my legs relax before they fall off the table.

When I get too scared in the machine, I close my eyes, listening to the drilling sound and feeling the vibration of the table. I remember learning about coffins with bell cords fed into the ground for the accidentally buried alive to ring if they woke up. I imagine scratching at the lid hoping passersby outside the cemetery could hear me scream. At some point the whistling of the machine becomes the bell I ring to announce I am alive and in distress. That is all I feel—the ever present urge to push against the ceiling and declare that I am alive. That I am not dead. That I am one of the mistakenly buried.

*

The doctor, in a virtual call that will cost me two hundred dollars, tells me it’s very likely MS, and assures me that, with treatments and given how my body is responding, despite its advancement I could be one of the people who goes on to live a relatively normal life. All I can hear is the roar of the MRI machine playing in my head.

I have to practice my understanding of being unwell with little guidance.

My sister asks me if a diagnosis is validating or helps, and I tell her that notion is just something we tell well people to make them feel better. I do not feel more secure or more realized for having a diagnosis, I just feel capital-S sick. I am tossing words from one hand to the other for better examination—sickness, illness, well. They feel new and awkward; they have gone from categories to identities. I have to practice my understanding of being unwell with little guidance. Every time I think about it my mouth fills up with dirt. I suppose it makes sense that I would feel despair more acutely, what with my raw nerves and all.

*

Despite persistent numbness in my feet, I have recovered enough to start taking my usual long morning walks. At least I can get my sneakers on. I practice saying I have a chronic illness aloud. My voice breaks every time. I do not know how to occupy a disability without other people making it the only thing they know about me. I have some experience with this from my neuroatypicality. Some of it is a certain type of camouflage. I was diagnosed with ADHD at ten. I survived enough of the stigma, the begging for teachers to believe it was real, sneaking down to the nurse to take medication, poorly transitioning to college, poorly transitioning to adulthood, figuring the semblance of something out. Now I have something else. The stranger with a knife doesn’t live silently in my head.

*

I tell everyone I am fine. They call me, can you imagine? You know what sort of hell makes a millennial call anyone? But they do, urgent and worried. And still I tell them I am fine. It’s a lie no one pretends to believe.

I feel like a liquid, passing from cup to cup, and the questions what can I do for you or how can I support you are some of the few pieces of flint I can strike against in resistance. How should I know what you can give me? How should I know how to exist in myself alone? How would I know what I need?

*

Being human means that adaptation and acclimation kick in fast. Onward is in the marrow. In six months, I know I’ll know more. Have talked to more people, perhaps find my younger self dramatic. But right now I am so scared. I resent the assignment that I need to be a fighter. That this is some battle I must find purpose in. The real task is much harder. I have to learn to work within a body that is sick. That is ill. That already fights itself.

I have been tracing the pathways of miracles, a skeptic pulling tarot cards on a situation I can’t change. I pull the Death card, strung together human bones perched on a skeleton horse, a victory flag waving in the right corner, and read that it means change. Mysticism is used by seekers who believe in transformation. But I tend to be a nonbeliever, groping around in the dark, unsure I’ll pull any magic out, until somehow, inevitably, I do. And it’s never in the way I expect. I spent the dark night of my diagnosis squeezing cabbage into sauerkraut. The YouTube video told me that after minutes of working the shredded vegetable, water would drain out of it. I didn’t believe it until minute three, when droplets appeared in my fingers.

I tell my mother she can come visit.

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