Finding Solace Between Two Covers

Sometimes I just need to relate.
 
I need to see my experiences, my struggles confirmed instead of negated and misunderstood. I need to remind myself that I am not alone in my fatigue, in bouts of cognitive fuzziness, in my hair-pulling frustration.
 

I have been reading books written by those who are living with multiple sclerosis and other chronic illnesses. I’ve been quite voracious about it, collecting these tales as a way to see myself reflected, helping me feel seen and heard.
 
I have been plowing through books like Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine, a collection of 25 essays about everything from coping with three different bouts of cancer before age 40, to living with cerebral palsy.
 
Rebecca Housel, whose “750 Words about Cancer” essay discussed her multiple cancer diagnoses, likened illness to an interruption, rudely butting its way into one’s life while you’re trying to live it. As I was thinking deeply about Housel’s description, I read the essay by Deborah Burghardt, “Spared,” that just stopped me: Burghardt’s mother, sister and daughter struggled with multiple sclerosis, while she, who did not have the disease, helplessly watched the slow erosion of their mobility.
 
Reading Bodies of Truth led me to Pain Woman Takes Your Keys, and Other Essays from a Nervous System by Sonya Huber.
 
In a poignant chapter called, “The Status of Pain,” Huber started to second-guess herself when others questioned her openness about her health. A comment from someone suggesting that her Facebook page was just “pain, pain, pain,” triggered embarrassment and shame. Huber wrote about the comment, “... I began to worry that I’d set up an inadvertent Wailing Wall on social media, even though I’d tried to do the opposite.”
 
As she combed her page and realized that only a small percentage of her posts were about pain—hers or about the issue in general—Huber thought deeply about healthy people’s reactions to and impatience with someone whose illness will never go away. She likened the chronic nature of some ailments to “a weird project you have to manage in addition to everything else you already have going on. A weird project that will never go away. Imagine remodeling your kitchen for the rest of your life.”
 
Last summer, I was on Twitter when I learned about another book, a memoir, The Beginning of Everything: The Year I Lost My Mind and Found Myself. It helped me feel a sense of camaraderie. It started with a harsh coughing spell in a stiff March wind which set off a chain reaction in the life of writer Andrea J. Buchanan. Her cough caused a small tear in “the tough membrane covering [her] brain and spinal cord.” This tear led to a leak of cerebrospinal fluid that caused “nine months of intractable pain,” Buchanan said, marked by “brain fog and cognitive impairment.”
 
After an exhaustive odyssey for a diagnosis and, ultimately, a fix for her leak, Buchanan began to heal. Although there are not yet any cures for MS, I related to many passages of the book on a subterranean level, particularly with Buchanan’s questioning of herself and her attempts to explain her invisible wound to the healthy world.
 
People with chronic illnesses often struggle to find their way in the world as their bodies have involuntarily catapulted them into a new realm. Although we yearn for our “before”-illness selves, this is where we are, squarely in the “after.” As I read these human tales, of human bodies, of human spirits doggedly fighting to thrive in their altered realities, I find my own spirit lifted. I, indeed, we, are not alone.
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Meredith

Meredith O’Brien

Meredith O’Brien is a Boston area writer and journalism lecturer. She is a die-hard Red Sox fan who lives with her husband, three kids ,and two noisy dogs. Her fourth book, "Uncomfortably Numb: A Memoir," about her MS experience, will be published in March 2020. Follow her on Twitter @MeredithOBrien, or visit her website at mereditheobrien.com.  

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