In an exciting and terrifying turn of events, I have journeyed into the realm of publishing. A recent artist residency allowed me the time, space, and clarity to determine the tone and direction of a book proposal that is in early development. While I initially expected the book to live in a resource-driven manual genre, the words that flew from my fingertips told a much different story - one of illness and resilience, limitations and creativity. It became clear that my professional journey and the successes therein cannot be accounted for without acknowledging the intricate interplay of health and productivity. Therefore, I have found myself leaning into the vulnerable realm of memoir. Luckily, there are plenty of writers out there from whom I can take inspiration.
During the early days of the Covid-19 pandemic, I participated in Suleika Jaouad’s ‘The Isolation Journals,’ a 100-day project that reconnected me with my inner writer. An added perk was getting to know this impressive woman, survivor, and creative leader. With each prompt, I gained a sliver of insight into the medical struggles that shaped her, and the people and practices that kept her vibrantly alive. Soon thereafter, the publication of her book Between Two Kingdoms: A Memoir of Life Interrupted was announced. It was pre-ordered in a split. I joyfully anticipated its arrival and the gems of inspiration to be found within. Jaouad did not disappoint. As she recounts the ins and outs of illness, the author journeys from cancer to remission - a story arc in and of itself - and then from remission to reentry into the day-to-day activity of a “normal” life. The medically situated plot resonated deep within my bones; however, it was the act of living amongst healthy individuals while holding citizenship in the “Kingdom of the Ill” that spoke most profoundly to me.
This is where I learned what it is to be in conversation with a book, with a written account and its creator. Jaouad does not seek pity with her words. The book is not a call for martyrdom, nor for heroic championship. It simply is the honest account of a brave woman making what she can out of the scrappy material she has been given in this life. It is a book of creation.
Of all the books I have read on illness, Between Two Kingdoms impacted me most. It takes its launch (and titling) from Susan Sontag’s seminal work, Illness as Metaphor - which was followed by AIDS and its Metaphors. Other medical tales include the lyrical beauties of comparative illness like Joan Didion’s Blue Nights. Then there are heart wrenching accounts of diagnostic duress (Sick: A Memoir by Porochista Khakpour, The Deep Places: A Memoir of Illness and Discovery by Ross Douthat, Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain by Abby Norman), there are research laden reports on chronic pain and fatigue (The Pain Chronicles: Cures, Myths, Mysteries, Prayersl, Diaries, Brain Scans, Healing, and the Science of Suffering by Melanie Thernstrom), and there are self-help guides on making the most of a life with chronic illness (How to be Loved: A Memoir of Lifesaving Friendship by Eva Hagberg, The Invisible Kingdom: Reimagining Life with Chronic Illness by Meghan O’Rourke, How to Keep House While Drowning by K.C. Davis, Everything Happens for a Reason: And Other Lies I’ve Loved and No Cure for Being Human: And Other Truths I Need to Hear by Kate Bowler). Over the past decade, I have read the vast expanse of these titles, and more.
Here’s the thing, in all of these acts of medical storytelling, multiple sclerosis was never the final diagnosis - usually just a question that gets ruled out on the way to definitive answers. Even with Joan Didion, who lived most of her adult life with an “exclusionary” MS diagnosis, the ruling is eventually nullified when MRI technology becomes available and brain scans prove the disease to be absent. How can there be an estimated 2.8 million individuals living with this disease worldwide, and no encounter with their voices in the larger conversation? I yearned for perspectives that shed insight on the varied lived experiences of life with MS, so I set out to dig deeper.
A bout of internet sleuthing led me to one MS title after another. And another. And another. I can read voraciously and still have a “to-read” list that multiplies in number. This is what I was looking for, right? And yet, a cruel doubt creeps in, a small, antagonizing voice that whispers in my ear, See. Your story has already been told. What makes you think you have anything more to contribute?
Personal writing is made up of a strange concoction of humility and confidence. The writer must trust the ego enough to write a personal account for the consumption of others, and then be able to step back and somehow say “this isn’t about me.” Therefore, personal writing also holds an inherent responsibility to provide an assembly of words that enhance the grander dialogue. It is not a competition. It is a conversation. And a courageous one, at that. I am grateful to my fellow MS writers, those braving the dark night of their illness in order to break a new dawn for us all. And I am honored to journey into their ranks. Here’s to our collective conversation.
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