Spoiler Alert: This post contains references to former First Lady Michelle Obama's debut book "Becoming." While I was still a mere seventy five pages in when this post was written, the unfolding of this book has been a major source of inspiration in fighting for my own voice to be heard. Thank you Michelle.
I was diagnosed with Multiple Sclerosis at, what I felt was, the height of my academic career. I was attending Washington University in St. Louis (WashU) with my eyes set on becoming a doctor in the future. Barely surviving the academic rigor and social shock of my first year at the University, I entered my second year with more caution, but also greater certainty that I would survive. My social network was tight and I was finally "learning how to learn" as my four-year academic advisor and long-term mentor, Dr. Harvey Fields, would repeat during many difficult Chemistry tutoring sessions. WashU might have won Round 1 but I escaped with enough energy to maneuver smarter and punch harder in Round 2.
During the first semester of my Sophomore year, I received more A's than not and was actually connecting the subject matter between my classes. From Biology 2970 to Black Feminist Theory, I felt myself growing stronger in my abilities to connect the dots and work through unfamiliar concepts. I was transitioning from being a "high achiever," whose main concern was getting the best grades, to a lifelong learner actively participating and contributing to the curious world around her.
Then my brain hiccuped.
On the first day of finals for the academic year, I woke up to an unmoving left arm and hand. My roommates and I were perplexed but assumed my limb was "asleep" after possibly laying a fourth of my body weight on it all night. However, as minutes turned into hours and then into half the day, I suspected something might be going on. A few steps out the residence hall door, ready to take my Statistics final, I decided to stop by the Student Health Center for a second opinion.
The health professionals guided me through the usual motions: weighing me, taking my blood pressure and heart rate, and asking the reason for my visit. After describing my symptoms and showing my body's unwillingness to respond to my brain's command to move, the tests changed. I was asked to hold out both arms in front of me and close my eyes, to walk in a straight line, to follow a finger from left to right and up to down.
The doctor disappeared to another room leaving me alone for minutes that felt like dinosaur years.
A nurse finally returned to ask if I would like to call a parent to receive the news along with me. The tears started rolling before I could even dial my Mom's number on the phone provided by the nurse. On speaker phone my Mom's worried voice repeated "Hello" as the nurse m delivered the news that I would be transferred to Barnes Jewish Hospital for further evaluation, with a 99.9% chance of overnight stay.
Days passed with my family and friends alongside me in the cushy hospital bed, with various tests being performed at all hours of the day and night, but with minimal sight of diagnosis. Until finally one day my care team came by my room during their morning rounds to deliver the news that I had been diagnosed with Multiple Sclerosis (MS). Few words can express the remainder of my stay at the hospital nor the healing process that occurred after my release, but in that moment the room seemed to go mute as I processed the gravity of my situation.
My next two years at WashU felt like the heaviest climb up a mountain with a dimmer horizon, but I graduated. I walked out with a B.A. from a prestigious University with friends and experiences that would continue to shape my trajectory in life.
That is a piece of my MS/chronic illness story. I have heard many others since. Some from family and church members, others from patients at the hospital I started working at shortly after graduation. Many are filled with rocky starts but happy (or as happy as can be) endings, and others with current struggles and permanent marks on life.
But the most recent story has stopped me in my tracks.
In the first few chapters of Becoming, Michelle Obama paints a vivid depiction of her childhood on the Southside of Chicago. Michelle masterfully welcomes the reader into her relationship with her schoolmates, neighbors, colleagues, and, most importantly, family. There are so many points in the book putting a smile on my face as a Chicagoan being able to visualize the street signs and parks mentioned with my own pair of childhood eyes.
Michelle Obama tells a story of taking piano lessons from her great aunt and downstairs neighbor, and the determination she possessed to improve her skills. Reminding me of my own memories of soaking up tunes from the proximity of my cousin taking piano lessons, Michelle found herself thriving in a mindset of achievement. In the conclusion of the story, she describes her piano recital with mention of her Dad's own determination to attend. Michelle ponders on the passion her Dad had with caring for his Buick as a direct correlation with his increasing disability from Multiple Sclerosis, which revealed itself in his thirties. During the piano scene, she mentions that her Dad was walking with a limp and had gotten in the habit of picking a parking lot closest to their destination to shorten the walking distance. Later on she explains "whatever was eroding inside my father, withering his muscles and stripping his nerves, he viewed it as his own private challenge, as something to silently withstand."
Many chronic illness and disability stories I have heard share a central theme: silence.
Silence in enduring symptoms that may not translate as disability to the able-bodied. Silence in expressing feelings of depression and hopelessness to our loved ones. And the worst of them all: silencing from physicians who "know best."
In Becoming, Michelle Obama tells many stories from a place of vulnerability rarely portrayed by the powerhouse leader. Her Dad's story is one of many on her path to becoming the strong, outspoken mother, lawyer, daughter, mentor, friend, wife, advocate, sister, and human that she is today. These stories also share a theme of silence and doubt, but always transcend past these initial moments into outcomes of triumph and success.
On the back cover of the book, the final few sentences lay out the importance of our individual stories in the collective story:
Together, in our cramped apartment on the South Side of Chicago, they helped me see the value in our story, in my story, in the larger story of our country. Even when it’s not pretty or perfect. Even when it’s more real than you want it to be. Your story is what you have, what you will always have. It is something to own.
I am still making my way through the book, and may be jumping to gun, but Michelle Obama seems to be telling the story so many of us experience in our determination to persevere. It is these stories of resiliency that continue to motivate me on my own journey in transforming healthcare in this country. Though merely at the beginning stages of this process, I look forward to centering people's voices and needs on our collective journey to becoming better.