From the time I was 4 and attended my uncle’s graduation from Harvard Law School in 1987, there has been no separating Boston from Harvard for me. This was reinforced in the late spring of 2006, when I attended an admissions weekend for newly accepted doctoral students. For two days I schmoozed and gawked with other twentysomethings as we tried to downplay our awe at this invitation to a new world.
Like many transplants to the university, I arrived with plans, both to impress and to explore. I figured if I’m going to devote a decade to a degree, I should invest in the place I’ll be living. Fenway Park and the Freedom Trail were on my list for that first fall. But I’m embarrassed to say I have yet to make those trips. I was too busy visiting Longwood, a medical mecca that has become the other place I associate with Boston.
I’d noticed some weird things about my body, and scheduled a physical that September. I felt silly telling the doctor how weak my left arm and leg would sometimes get, or how I couldn’t always unfurl my left hand to type or to button a shirt. I was 24, and other than a childhood case of chicken pox and a bad bout with the flu, I’d never really been sick. The physician sent me on a three-month tour: from her office to a hand surgeon, back to her office, to a therapist followed by a consult with a psychiatrist, then back again to the physician, who sent me to a physical therapist to learn how to live with “whatever this is.”
The physical therapist asked me to perform a series of movements. Then she looked me in the eyes and said, “This is not a physical therapy issue, you need to see a neurologist.” I started to cry. “It’s OK, you’re not crazy,” she reassured me, “but you need an MRI.” I am still grateful to this woman for talking to me as a human being with a problem, rather than just a problem.
I was in class in early December and stepped out to take a phone call from the resident neurologist at Brigham and Women’s. He was direct about the MRI, as one might expect from a doctor whose patient has been peppering him with questions he couldn’t answer. “It’s MS. Probably relapsing-remitting. We’ll get you started on an interferon; you’ll get a call later today from one of the nurses about injections.”
“OK,” I said, and went back to class. We were giving final presentations, and since I now knew I could double down on worst case scenarios of having multiple sclerosis, I didn’t want to miss my chance to wow my professor with my research on the Tuskegee Syphilis Experiment and the 40-year lie the federal government told to 600 Black sharecroppers.
Later that afternoon I called my parents to give them the news. They cried, I did not. I told them everything would be OK even though I had no idea what “OK” meant. My dad called me about 10 minutes after we’d hung up and was silent. “I still have MS since the last time we spoke, Dad,” I said, smiling.
He did not laugh.
Now it’s 2007 and I’m sitting in an office at St. Elizabeth’s Hospital in Brighton. “I see that you’re angry, Linda, I do. You’re angry that you have this disease and, as far as I can tell, there will not likely be a cure in your lifetime. So, it’s a fact you’ll have this disease most likely for the rest of your life. But, it is not a fact that you will be angry the rest of your life. That is a choice.”
The woman in front of me wants to know why I’m seeking her opinion when I was already under the care of one of the world’s preeminent MS specialists. I’d confessed to her that every time I left that doctor’s office I’d still feel upset, confused, and angry at my situation. “That’s because you are angry,” she said matter-of-factly.
Since my diagnosis, I had been pretending everything was fine. I’d have casual interactions, attend class, smile and nod, and when I came home I’d feel nothing but white-hot rage or despair. It hurt to hear her say it, but I also knew that she was exactly the kind of doctor I needed.
At the time, multiple sclerosis was considered to be and treated as a primarily Anglo-Saxon/European disease. I had my fair share of experiences of being an object of curiosity to doctors who thought my body was not meant to have its illness. Back then nearly every specialist I’d meet would ask if I had any mixed race ancestry, and I would joke that as a Black American of course I did (slavery’s the gift that keeps on giving, amirite?). But this is not an essay about racism in our medical system, though I am keenly aware it would take another 10 years for American health care to acknowledge MS as a significant disease in Black communities. My own treatment has been fantastic, which I feel both glad and ashamed about, knowing I am an exception to the rule.
Boston is where I received the most devastating news of my life, but also where I received the most elite and comprehensive care and support. Here I learned the answers to a fundamental question: what to do with a body turned sick?
The next seven years would be an ongoing cycle of doctor’s appointments, steroid infusions, and hospitalizations mixed with the process of becoming an academic, where I’d try to be what I thought was normal for a twentysomething graduate student. I was learning to live in a different body. Boston became my training ground for how to be both a Black woman scholar and a Black woman with an invisible illness.
I still get angry sometimes, especially when I disclose my illness to someone new, and hear But, you don’t look sick! No matter how well intentioned the words, they always sting like a slap. As if I am bleeding to death and begging to be helped and everyone around me just smiles and shrugs because I look so nice in red. I’ve learned that when we are confronted with injury, we instinctively try to correct it. It is a way of survival, to keep going in the face of disruption. It is my hope that by sharing my story and living transparently with my illness I can suggest to others the many different shapes survival takes.
In 2017 I returned to Boston to take a job at Harvard University. I live near my old apartment in Cambridge, so every day I encounter scenes from when I hadn’t yet embraced living with a chronic illness.
But I am no longer newly diagnosed. I’ve been on an immunotherapy treatment since 2012 and it has been great for me. I see my current moment as liberating. I know now my choices determine my well-being. And I am finally exploring all that Boston has to offer.
Linda Chavers is a writer and a lecturer in African and African-American studies at Harvard University. Send comments to firstname.lastname@example.org.