Diagnosis: Short Film as Medical Memoir

by M Tamara Cutler

In 2001 I was turning thirty, in a new relationship, and starting graduate film school. I was also diagnosed with Multiple Sclerosis. I asked a classmate to film my experience. I wanted documentation for a future date when I was ready to process it. Viewing the film for the first time since the screening twenty years ago, I cannot deny the images, the information, or myself.

***

INT. DOCTOR’S OFFICE – DAY

The black and white film opens with me curled in the fetal position, my back towards the camera. “A lumbar puncture is a procedure to collect cerebrospinal fluid to check for the presence of disease or injury,” my neurologist explains. The needle is inserted between my third and fourth lumbar vertebrae. The spinal fluid fills up the line attached to the needle.

INT. LIVING ROOM – DAY

The spinal tap footage transitions to a video of the same procedure screening on the TV in my living room. I’m nestled on the sofa between my mother and my boyfriend, our dog sprawled across three laps.

Confronting the graphic nature of the image, my mother looks both rapt and pained by what she sees. She says, “I’m convinced once you’ve carried a body inside you, and your blood has run through their veins, you feel every single one of these things.”

(This is difficult to watch. I have to turn it off now.)

INT. LIFE CAFÉ – DAY

I sit across from my mother in a busy East Village restaurant. The room noise makes conversation inaudible except for our voices recorded with lavalier lapel microphones.

I blink a lot. I speak to her in stutters. “You can take anything odd and turn it into a symptom, Mom. It’s Multiple Sclerosis. You have to have a second episode. I’ve only had one. That’s what the spinal tap is looking for. I mean it could be something, and it could be nothing.” I reach for my coffee to break from her gaze.

INT. NEUROLOGIST’S OFFICE – DAY

My neurologist recaps, “We did the spinal tap a month ago and sent the fluid for a variety of tests. The test for viruses and bacteria and other conditions that mimic MS were negative. The test for the specific protein which may appear in the spinal fluid in MS was positive.”

The doctor continues, “The inflammation of the optic nerve, as you experienced, raises the possibility that this was not an isolated event, that there were multiple areas of the brain involved. Optic neuritis can be a sign of Multiple Sclerosis, but the MRI is not the diagnostic criteria. You would require two clinical demyelinating episodes, and I’d like to make sure that doesn’t happen.”

“Prior to 1992,” he explains, “we knew the natural history of the disease untreated. We don’t know the natural history of the disease in the Avonex, Betaseron, Copaxone age**. We are fairly confident the numbers are going to be considerably better in the next 10 – 20 years.”

**These drugs, classed as immunomodulators, are fabricated forms of interferon, a protein released by the body’s cells when they are under attack from a virus.

INT. NURSE’S OFFICE – DAY

The head nurse gives me a kit for injecting Avonex. She says, “I’m giving you one take-home to practice on. And if you’re uncomfortable, we can do it together even if you have to come in every week.”

“I know the day after injection you sort of feel sick right? And this is every week?” I ask, notes in hand. “Yes, flu-like symptoms will show up the next day every week,” she confirms.

INT. DOWNTOWN LOCATION – DAY

A dialogue between my neurologist and me makes up the film’s final voice-over. I’m behind an Arriflex 16mm film camera, shooting another classmate’s documentary.

My neurologist assures me, “There are many professionals living with the condition and functioning very well, usually taking medication, and nobody knows, or very few people will know, they have MS.”

“Unless they make a film about it,” I say.

He laughs, “Yes, unless they make a film about it.”

***

Four years later, I asked my lead nurse if she could guarantee Avonex and steroids were saving my future quality of life when my present quality of life was suffering. She sat me down in the same office in which we first met and said, “No, I cannot guarantee that.”

“I want to stop,” I said. “What do I need to do to stop?” I agreed to semi-annual MRI’s to track progression of the disease. After two years of clean, no change MRI’s, I began annual scans. By 2016, I never had another demyelinating episode, and I’ve not had one since.

I’ve been living in the shadow of a diagnosis that never fulfilled its promise. The film projects a reality that overshadows memory. It interrupts the urge for denial or narrative reconstruction. I will never know if the treatment prevented a second episode, or if I only had one instance of optic neuritis due to stress.

I have, however, learned to embrace uncertainty.

M Tamara Cutler is a narrative screenwriter who brings a visual arts background to her creative writing. Essays and nonfiction are published or forthcoming in Under the Gum Tree, Longridge Review (finalist for the Anna C. Barnhill prize in creative nonfiction), Hunger Mountain Review, Trail Running magazine, and Brevity Craft Blog. She holds an MFA in Film from New York University and a Diploma in Advanced Creative Writing Nonfiction from Cambridge University. She splits her time between a major city in California and a rural village in southern Spain with her partner, mother, and dog, Ragazzo. You can find her on Twitter @thatplaceUlove and Substack.