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Rare Disease

On Writing My Rare Disease Memoir

I have always wanted to write a book. I just never planned to write about my rare disease. It started as a graduate class assignment. During the spring of 2020, I took an elective class called ‘Race in Contemporary America.’ The final assignment was to write our own autoethnography of race. Mine began: “I cannot write my story of race without writing about rare disease. I have been very sick all of my life.” When I was complete, the document was twenty-three pages. After I submitted the paper to my professor, I was so emotionally exhausted that I did not do much work for a month afterward.

I was born with a rare metabolic condition called phenylketonuria, more commonly known in its abbreviated form as PKU. In this context, the only important facts to know about the disease are that it is lifelong, and the symptoms are neurological, but patient compliance to treatment greatly determines the degree of impact. In my paper and throughout my life, my disease story wove itself into the larger narrative of race and diversity in America.

Of course, it is not self-evident that a perspective on intersectionality would have been the outcome of my condition. But my disease made me an outsider in my predominately White, middle-class, suburban environment. While I was never overtly ostracized by my peers, I also never really felt like a participant in my own culture either. The ones who were often on the sidelines with me were not White, and they became my friends too. I preferred spending time with people who were not affirmed by White normative standards, likely because of my own ‘other-ness’. And thus, diversity of friendship was normal and common to me. I did not realize this was also a rarity until recently.

I wrote my paper during the height of the George Floyd protests, with the constant wail of sirens and whirring of an overhead police helicopter as the soundtrack outside my Chicago home. When I received initial feedback from the professor, I determined it was going to become a book. Because what I do know is what it feels like not to be believed; to be minimized or invalidated over difference of experience. My illness is cognitive and invisible. It is discrete to my body and recognizable only to people that live with the condition.

It is taking me much longer to write than anticipated. Many days I do not have the energy to pour internal anguish onto a page for potential future judgment. The articulation of a condition that others may not affirm experientially because it is not normative is vulnerable. You bare your soul and then it is invalidated because it is too far outside the reader’s own experience to be accepted as truth. The words need to be precise, because they already carry high risk of misunderstanding. Throughout my life, I have witnessed the friction on the faces of others as they attempt to respect the gravity of my situation.

Although there are differences of both kind and degree, I cannot help but think this must be what explaining systemic racism to those who don’t experience it feels like. I have certainly observed the contortions we as White people go through to justify, minimize or invalidate the experiences of BIPOC individuals, even recently going so far to create conspiracy theories about broader society as a counter-argument.

My stories also tell themselves as I write them; I am not always in control of the direction they take. My book is really going to be a story about identity and self-discovery, I think. Because I am not done, I cannot be fully sure yet if this is my core message. Self awareness is a blessing and a burden. At times, it is easier to remain unaware of how your self shows up in the world. Without awareness, there is no accountability. But only after you become aware of the parameters of your own space can you begin to change larger spaces.

Life is incredibly complex. My rare disease story can never be divorced from my stories of race, or geographic boundaries, or religious upbringing, or socioeconomic status. None of our stories can, whether they carry extra burdens of chronic illness or personal hurdles or do not. And yet, there are universalities and truths about the human experience that resonate across differences of race, religion and socioeconomic status. If I share my personal story for any reason, it is because my hope is that we resolve to reach across, rather than negate our American cultural diversity, inclusive of the burdens others carry that are unfamiliar to our own.

Speaker and Consultant: Diversity, social impact and organizational change. Rare Disease Warrior. www.profoundhopeindustries.com

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