NONFICTION

Being & Numbness

By Timothy Cook     VOLUME 58 No. 3

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As a cripple, I swagger.
—Nancy Mairs

Receiving a $23,180.94 medical bill is a sobering experience, a reality check, a come-to-Jesus moment, though I’m uncertain about what kind of healthcare plan Jesus is currently offering. Against my will, I have become adept at navigating the healthcare financial system. I was fairly calm when reading what I owe. Many other times, though, have spiraled me into devastating anxiety, and the first time, amidst a cavalcade of terrors, was terrifying.

After a week of blurred vision, smelling like sushi from her shift, Lucy lay beside me in bed, smiled and laughed a little to herself, told me to close my left eye, held her hand up in front of my face, and asked, “How many fingers am I holding up?” I could see her palm and the bottom of two fingers like severed tree trunks, but everything straight ahead was a blur. “I don’t know,” I said. “Two?” I opened my left eye and clearly saw her holding up two fingers. Her smile had disappeared.

She forced me to go to the ER, even though I was an unemployed grad student with no insurance, where I underwent a CT scan. The next day I visited a neurologist, and the day after that I had an MRI on my brain. In the weeks that followed, I would receive bills for all of the aforementioned appointments and tests, whether or not the results indicated any explanation, but before that, on April 1, 2008, the day after the MRI, I was diagnosed. Later I would be told, and later still would accept, that I was fortunate to be diagnosed quickly and accurately, but in the moment, things seemed very unfortunate.

April 1st, April Fool’s Day. I am the fool. The joke is on me.



I have been thinking about trauma. As far back as I can remember, I’ve had headaches. I used to eat Children’s Tylenol like M&M’s. During second grade, I ran with the other kids through a tunnel to outdoor recess, remembered I’d forgotten something, and turned back toward the tunnel. At the corner, both of us running full speed, I collided with a shorter boy, slamming my nose into his forehead. All of the cartilage bled out of my nose, leaving a stain on the cement still visible when I returned to school a few days later. Running against the stream of other people and meeting disaster, I think, is some sort of metaphor.

I’ve always had difficulty hearing. I had two different operations for the insertions of tubes into each of my ears. In eighth grade, a benign tumor was removed from my right ear, and I still have a scar from where my head was cut and my ear pulled open like a door. On my forearms are scars from failed bleeding time tests administered in advance of the operations. A nurse would push a button on a small device that would plunge what is basically a razor blade into my skin, making a tiny slit, then periodically wipe away the blood, waiting for the expected clotting. But, with my mom or dad sitting beside me, I would continue to bleed and bleed until my arm turned blue.

I was diagnosed with Von Willebrand disease, which may or may not be an accurate diagnosis, but one that saved my face. My nose was broken at such a young age that reconstructive surgery was not viable, but by the time I was thirteen, my parents and the doctor were pressuring me to have a nose job. The doctor told me that someday I’d be interested in girls. That would have perhaps been an opportune moment for my dad to retell the always embarrassing story of catching me at five years old playing doctor with the neighbor girls.

All over my body are scars from various nicks and scrapes, my nose itself is a kind of scar, and there are scars, or lesions, on my brain and along my spine.



MS, multiple sclerosis. The reading material I initially received described a disease of the central nervous system in which the myelin sheaths, the covering over the nerves, are “attacked,” disrupting the body’s internal communication system. Everyone, friends and acquaintances, seemed to know someone with MS, but the only person I knew with MS was me, and everyone thinks they know the best treatments for MS. Laypeople become armchair neurologists, prescribing cod liver oil and meditation and pot, prohibiting dairy and red meat and heat and stress (stress?!), but no one, amateurs or professionals, seems to listen to my symptoms. I have actually tried all of these treatments, some with more success than others, mostly having to do with my standard of living rather than in any way affecting the potential course or severity of the condition, but pharmaceuticals have maintained my baseline.

A day after being diagnosed, pumped up on Solu-medrol steroids, wired, unable to sleep and not really needing much sleep, unable to taste food, even the spiciest Indian food I could find, but so hungry that I ate five full meals, figuring I’d need to know how to easily pronounce the condition, I practiced over and over saying out loud “multiple sclerosis,” a tongue twister of sorts. Hence the quaint acronym. I wish there was a more convenient or cooler way to describe myself, like hemophiliac or diabetic or schizophrenic, rather than having to say, “I have MS.” I am shy. And I think I’ve been trained not to talk about trauma, particularly medical difficulties, so revealing that I have MS, to new friends or prospective romantic partners or potential employers, regardless of the law, is for me a difficult, continuous coming out process of sorts.

I couldn’t figure out if I should refer to MS as a disease or illness. I wondered over the connotations of each. Is a disease something a person contracted, the result of someone’s choices, a thing that can be spread? Is an illness something that can be cured or can be fatal? It seems that MS is for me a fluke of biology and heredity, and I am not contagious. I cannot be cured. I get to live. I am not for all intents and purposes sick. Perhaps the words are just synonyms, but I choose “condition.” MS is a perpetual, continuous state. A condition. A medical condition that qualifies me as disabled, though neither the average bystander nor the United States federal government considers me so. The language from within, from many Disability Studies authors and other artists, is “crippled,” and I like that term, but I question whether or not I’ve earned it. People who have been disabled their entire lives face innumerable repercussions, socially, developmentally, educationally, and while my day-to-day life involves many physical struggles, many people, both those with MS and those with other conditions, struggle more fiercely.

So I am afflicted.



An MRI is a particular kind of experience. The process begins with the usual mind-numbing paperwork, a lot of questions that are already in the system from previous times I’ve completed these forms. There is a diagram of the body, both front and back, with instructions to notate any locations of pain. The first time I got an MRI, I wanted to circle the location of my wallet.

The form asks about piercings and tattoos because, I guess, the magnet is so strong that a nose ring would be ripped out of my face. The machine itself resembles an alien probe, or some other such contraption from science fiction, and some are manufactured by GE, the same company that produced the refrigerator my parents bought at Sears. I am given earplugs to drown out the machine’s racket and lay on my back on the plastic slab with my head encased in a kind of plastic football helmet, which is supposed to prevent me from moving my head or neck, since it is important to remain perfectly still during the entire scan.

The accommodations are not exactly comfortable, and this is complicated by the fact that I am always already physically uncomfortable before I enter the room. After the slab slides into the plastic coffin, through the earplugs I hear the machine alternately rattle, hum, pound, drill. It’s quite a to-do, so much so that I can’t even take a nap, so I am left to think. And what else is there to think about than the reason I am there in the first place?



The first episode was optic neuritis, and I have permanent blurred forward vision in my right eye, though I can see very clearly with both eyes open. In fact, the state of North Carolina once issued me a commercial driver’s license, even after I miserably failed the portion of the vision test when my left eye was covered. I hadn’t told the nurse administering the physical about my condition, and when I said I couldn’t read any of the letters, not even the largest one, she exclaimed, “What?!”—perhaps horrified by my intention of driving a large vehicle with passengers. Even after the optic neuritis and an MRI that revealed lesions on my brain, I could not officially be diagnosed with MS because a diagnosis requires a second occurrence to coordinate with the other two facts. But an ophthalmologist and the neurologist I saw a month later both felt certain, so I was prescribed Betaseron, a subcutaneous injection I had to give to myself every other day, rotating between my triceps, quadriceps, and butt cheeks.

I didn’t feel physically sick, or ill, or diseased. The condition was hidden within me and hidden from me. On the MRI scan, though, was physical proof. The neurologist sat at a desk in front of me, clicked through images of my brain, and pointed out the white blotches, the lesions, the scars that indicated MS. Under the best conditions I probably wouldn’t do well with looking at images of my brain, but amidst the stress, I was horrified. I almost threw up.

Eight months after the unofficial diagnosis, after seven months of injecting myself with Betaseron, my body tingled from the neck down and I struggled to lift my right leg into a pair of pants or up a step. This occurrence, or relapse, the second episode, led to the official diagnosis of relapsing-remitting MS, that at any time an episode could happen from which I might or might not recover. For three days straight I received infusions of Solu-medrol, followed by a twelve-day taper of prednisone, an oral steroid. This is the standard operating procedure for an MS episode, the same treatment I received for the optic neuritis. This form of treatment will someday seem archaic, barbaric, like bleeding with leeches.

During examinations, the neurologist will watch me walk up and down the hall, check my reflexes, scratch the bottoms of my feet with a toothpick, have me move my index fingertip from the front of my nose back and forth to his extended index fingertip. It’s like a DWI traffic stop.

While the original steroid treatment only slightly improved my vision, this treatment returned my body to its baseline. A month later, though, the same thing happened again. The third episode. That time, my left limbs were affected, and I did not recover. The neurologist suggested I switch medications to Tysabri, the most potent medication on the market at that time, since the Betaseron was clearly not working for me, though it may be quite effective for other individuals with MS. Tysabri is a once-every-four-weeks infusion, often administered in a hospital’s oncology department, and was at the time still a relatively new medication. After the FDA had originally approved Tysabri, several people developed progressive multifocal leukoencephalopathy (PML), a neurological disease that causes irreversible nerve damage, or died.

The neurologist casually asserted the possibility of death at something like 1 in 20,000, or 1 in 2,000, or 1 in 200,000. The numbers somewhat escape me, and it doesn’t really much matter because any percentage above zero percent was a higher percentage than I was prepared to hear. The options seemed to be to try a medication comparable to Betaseron and risk further relapses or to try Tysabri.

Was I willing to risk death in order to avoid the chances of becoming more disabled? I was, apparently. At thirty years old, I made a conscious decision to chance death, a decision I’d made many times before, though never so purposely.

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TIMOTHY COOK graduated from Loyola University with a BA in philosophy and from the MFA Program for Writers at Warren Wilson College. His poems have appeared in such journals as Rogue Agent, PANK Health and Healing Folio, pioneertown, and San Pedro River Review, and he received a grant from the Mookie Jam Foundation, which supported artists living with multiple sclerosis.


VOLUME 58 No. 3