Hepatitis is a word I have always known, like “volcano” or “earthquake.” To me, it meant “big sick.” Hepatitis was the reason my mother repeated the second grade, which placed her in the same graduating class as my father. They became high school sweethearts. They told me stories like the time they got caught kissing in the halls after Mom passed her French test. As a child, I relished hearing their love story, MY story, and hepatitis was part of that story.
In the second grade, I told a classmate that I might have hepatitis. I knew this was a lie because I didn’t have a big sick; rather, I had perpetual medium sick—but I didn’t have a word for that. My mother had been using the word hepatitis in my doctor’s appointments. She seemed sure that I had some sort of big sick and that once it was named, it could be treated. Once treated, I could let go of the infections, the ever-growing list of allergies, and the so-called "growing pains.” I told my classmate I had hepatitis because I had no other way of explaining whose fault it was that I had missed so many birthday parties.
When I was in the fourth grade, a Thalidomide survivor came to speak at my school. He played piano for us with his toes and explained the concept of teratogens: something that harmed babies when they were still growing in their mothers’ bellies. That same day on the playground, I told my best friend that my mom had taken a pill when she was pregnant with me; it wasn’t Thalidomide, but the pill she took was the reason I was so sick all the time. I told my friend that the pill had also caused my younger brother to have Down Syndrome. If it was a pill, then it was an honest mistake. If it was a pill, then it wasn’t my fault that Mom had to come into the school twice that day to take me to the bathroom, strip off my clothes, and apply cream to the residual rash that covered me from knees to neck. When that rash had started, Mom took me to the urgent care clinic where we waited in the plain white room. It took three doctors to diagnose me with Rubella. Each of the doctors shifted my underwear aside to get a better view of the marked skin on my inner thighs as I lay silent and nearly naked on the paper-covered plinth. There must be a reason why I needed three doctors in the plain white room when my brothers and sister only ever needed one doctor and were always allowed to be in the colorful rooms filled with toys. My mom must have taken a pill that, instead of stopping the growth of my long bones, made me perpetually medium sick. It was not my fault.
In the eighth grade, we had sex ed and my counselor was a kindly older woman who taught me that Down Syndrome was caused by an egg that had too many copies of something. I approached her after the recess bell had rung while she was packing up her diagrams and pelvic models and I asked her, “If Down Syndrome could be caused by a bad egg, could I have come from a bad egg too?” Was it my mom’s ovary’s fault that I had to pull out my blue asthma inhaler twenty minutes before every gym class? I needed to know that it wasn’t some sort of behavioral choice. When people got annoyed with my barking lungs and told me to “Just stop coughing already!”it felt like they expected me to be able to stop. Did they know that the growing pain hadn’t stopped, but rather that I had just stopped talking about it?
It was never hepatitis, though I have been tested for it repeatedly in my thirty-odd years spent living with perpetual medium sick. It was never a pill, and it wasn’t a bad egg, but I was onto something with those ideas; environment and genetics were certainly at play. Big sick did come for me, and in my homebound state, I sketched out my past, desperate to understand what had happened as the diagnoses came slowly into focus and a clear picture started to form. I see myself now as a series of tectonic plates: one plate is my DNA, one is my parents’ stories, one is my sleep apnea, one is my connective tissue disorder, one is my immune deficiency, another is sheer dumb luck, and, admittedly, one of them is my behavioral choices. All these plates make up the continent of Laura with my mountains of determination, my valleys of shame, and all the detailed topography in-between. The symptoms show themselves when these plates converge, when I feel the quakes of flares that erupt unpredictably. Over time, I have slowly been able to lay fault down and push it into the cracks between the plates. My illness is so deeply a part of who I am, and fault has been muted as I mapped that understanding.
Fault found its way back to me this week. My seven-year-old son, who is in the second grade, looked at me through tears of pain and asked, “Is my bendy body because of you? Did you give me this bendy body?” I hadn’t seen that question coming even though we told him no white lies once we knew he had inherited one of my conditions. I was surprised that I had an answer. I held his shoulders firmly in hand to turn him towards me. I brought my forehead to his, gently pushing us together. I told him, “Absolutely, yes. I did give you my bendy body. It sucks, I am so sorry, and I am here for you.” Until he is old enough to map his own unique fault lines, I will hold the fault for him.
Laura Frégeau is an occupational therapist and doctoral student living in Montréal, Canada with her partner and two children. Laura manages several chronic health conditions which became disabling in 2019. At the height of her illness, when the health care system offered few answers, Laura relied on the stories shared by others with chronic illness to learn how to create a satisfying life with her limitations. These stories inspired Laura to write personal essays, which continue to help her process and communicate her experiences during long diagnostic delays. The importance of sharing stories is the basis of Laura’s clinical practice and research in rehabilitation science.
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