An Act of Resistance Against MS

“What are you wearing Friday night? Something that will show off those legs?”

It was the week before Love to Erase MS at the Beverly Hilton, and I was on the phone with Jeannette, going over our plans from our respective homes in New York.

Jeannette is Jeannette Perutz-EIsner, my client (I am her co-writer and editor), collaborator and now friend. Living with multiple sclerosis for 27 years, she is working on a memoir. For the past nine months, we have been immersed in an intense, intimate, ongoing conversation about her battle with this terrible illness and its metaphorical value in her life. 

As the daughter of Holocaust survivors who grew up on the premises of a variety of institutions for the criminally insane in upstate New York, Perutz-Elsner has been zapped with a cruel yet entirely apt affliction. Her MS imprisons her within her body as her parents had been so imprisoned as Jews in Europe, as she had been so imprisoned as a child.

Her MS is the Nazi storm trooper that has invaded the house of her body, exterminating her slowly, by degrees.

And yet Perutz-Elsner stubbornly persists — in staying alive, in believing that life is better than the alternative, in the determination to be a mother to her sons, in her quest to tell her story.

In writing the first draft of her memoir, she opted for radical revelation.

Nearly a decade ago, at the urging of her therapist, Perutz-Elsner set out to write her memoir, producing a stark prose poem, a cri de coeur, her Book of Lamentations. The writing opened a vein. Originally compelled to shield her boys from the traumatic truth of her tortured childhood, she offered a wholesome, if vague, vision of her childhood in upstate New York. Mortified that they might experience anxiety from the knowledge of her illness, she took great pains to disguise and even defy her diagnosis. 

Until the need to tell the truth overcame her need to shelter her sons, now teenagers. In writing the first draft of her memoir, she opted for radical revelation. 

Helping Perutz-Elsner tell her story has required an intimate engagement with her. My role is far more than editorial; I am the instigator of joint exploration into her past, witness, scribe, advocate, private investigator. I have embedded myself, to a degree, within her family. For the better part of this past year, I have explored the fascinating horror of her childhood and family life, uncovering memories that are as multifaceted as they are tragic, pushing her to disclose more.

As Perutz-Elsner details her daily struggle with MS — in spoken conversation, texts and over our periodic dinner or theater dates — she is stubbornly forcing the healthy world to pay attention. This is what it is like for me to lift a fork. Here is how long it takes me to pull a sweater over my head. This is what my brain looks like, populated with lesions. This is why a gorgeous riff or melody can destroy me, filling me with its beauty, overwhelming me, destroying me for the rest of the day.

Early into our collaboration, we created an MS word game we called “My Soul”; she wrote to me, one day, “MS.” “My Sister,” I volleyed back. “MS.” “Magnificent Shira, MS,” she might say. “Mother Supreme, MS,” I will respond. “Mi Senora, MS.” “Melancholy Songstress, MS.” 

Our MS wordplay is our way of redefining the dreadful letters, appropriating and repurposing them, unshackling them, giving them wings. 

Perutz-Elsner was thrilled by the idea that I might wear a dress that shows off my legs. Only someone with impaired mobility can appreciate that this prospect has nothing to do with looking sexy. She is neither pimping me out nor is she flirting. My long, strong legs are her surrogates. 

She, the sultry, dark-haired goddess, once danced with abandon.

This past Friday night, in addition to spotting actress Selma Blair, you might have seen me and Perutz-Elsner — Mighty Sorceresses, MS! — as we walked alongside the red carpet. 

Though we are not Movie Stars, MS! we are Magical and Sultry, Marvelous and Sensational, a two-headed creature of wheels and moving legs, dark-haired sisters in hot pursuit of the truth.

Shira Dicker is a writer living in New York.