Today I am honored to share a guest post written by our very own fearless leader, Nesrin Shaheen, co-founder of The Anti-NMDA Receptor Encephalitis Foundation and mother to an anti-NMDAre survivor. ~ES
I used to HATE the words Anti-NMDA Receptor Encephalitis (ANMDAre)! The name, similar to the disease it represents, is complicated and mysterious. It offers no insight to what the disease entails, unless you are a physician and, even then, you may not have ever heard of this illness, only recently identified in 2007, by Dr. J. Dalmau. Unlike Cancer, Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (better known as ALS), Cystic Fibrosis or Muscular Dystrophy, it is not a household name. I would obsessively repeat this name in my head over and over, determined to make it known, to make it mean something, to make it memorable for those that have not had the misfortune to become intimately acquainted with this cruel, unpredictable, multi-faceted master of masquerade. I witnessed my daughter become a victim of this devastating disease in 2008 and just when we thought she would recover from it for good, it would strike again… and again and again; altogether five times within a span of four years.
AN-TI – N-M-D-A RE-CEP-TOR EN-CE-PHA-LI-TIS
With its 14 unnatural syllables, it slithers, tumbles and drops off the palette like some ancient serpent, even ending on the sound of “is,” as it rises up cobra-like, preparing to strike. But how to publicize and promote awareness of a newly-identified disease that continues to sow fear and leave so much devastation in its wake, with such a tongue-twisting name? The answer, for me, lay in the very name I hated: a long, meaningless string of medical jargon, yet so full of rhythm, that it lent itself easily to a RAP song. Thus The Anti-NMDA R. Encephalitis rap was born, as my first effort at providing meaning to this complex, multi-faceted illness, which is an amalgam of psychiatric and neurologic symptoms resembling, at times, aspects of schizophrenia, schizo-affective disorder, bi-polar disorder, MS, Tourette’s, Parkinson’s, and even autism, all rolled into one.
The Anti-NMDA R. Encephalitis RAP
Let me introduce myself!
You don’t know me yet,
but by the time you do,
you’ll wish we had never met.
I’ll take your memory;
And I’ll take your speech;
I’ll make you see, hear terrible things;
You’ll no longer be able to eat;
You’ll no longer be able to sleep;
I’ll play with your breath,
And I’ll play with your heart,
and just for fun…
I may even make it stop.
Your arms and legs will be at my command,
these are just a few of the things I can do…
You’ll be mine,
Let me introduce myself:
My name is Anti-NMDA R. Encephalitis.
To my delight and gratitude, many in the ANMDAre community, including patients and caregivers found resonance in this poem. One patient in Australia even stuck it to the door of her hospital room! An earlier version of the poem was first published on the website of Susannah Cahalan, author of the award-winning memoir, “Brain on Fire. My Month of Madness” (Simon & Schuster 2012).
The name of the disorder continued to rattle and rumble around in my brain as I searched for meaning. The quest ended sometime in late 2015 or early 2016. I don’t remember exactly how or when, but I must have been looking at this inanimate string of words when I realized how easy it can be to forget to put the hyphen between the “anti and NMDA.” It struck me that by simply dropping the hyphen, and adding an object and a verb in front, the name had a whole new meaning with a powerful message, I am Anti NMDA Receptor Encephalitis.
Simply translated it means, I am against NMDA Receptor Encephalitis. You may catch a glimpse of this tagline on someone’s bumper.
Now our cause has a rap song, an award-winning memoir and a powerful tagline, but I still wanted a visual adaptation of the anti-NMDAre “creature” I had envisioned. The universe intervened once more when a young Italian survivor, named Alessia Bellino, sent a whimsical caricature depiction of her illness and recovery to The Anti-NMDA Receptor Encephalitis Foundation, Inc. (www.antinmdafoundation.org), of which I am co-founder. I was elated at the possibilities… If I could describe my vision of the serpent to her, maybe she’d be able to produce a meaningful image from my words. I was so pleased when she delivered a perfect depiction of what I had described to her. She produced the following images, which were then reproduced as bookmarks to benefit the Foundation.
I hope, someday soon, to see ANMDAre, this formidable, yet not indestructible foe, take its rightful place in the pantheon of other well-known illnesses, as we continue to find new ways to raise awareness and support.
Reading your poem really frightened me. My 18 year old daughter has been at Atkinson Morley hospital for a month now with auto immune nmda encephalitis ….I’ve seen all of those things happen and are still happening to her….I know she’ll survive , she’s brave and talented and a completely wonderful young woman
Well done, Nesrin! Your descriptions of this disease and its effects are spot-on, so clear and easy for the “uninitiated” to understand. Keep the posts coming. 🙂
Brilliant read. I love all of your posts and very clever with the serpent entangled in the words. Just like the serpent, a would be killer that strikes out of no-where. Thank you for your posts.