|Photo courtesy of Maia Evrona|
“But you have an accent. Where are you from originally?”
I have learned to expect this question whenever I make a new acquaintance, whether the meeting occurs outside of the United States or in my home state of Massachusetts. There are few experiences more surreal than trying to convince a fellow American in the city of my birth that I was born here too, and that English – the language that, because I am a writer, is particularly entwined with myself – is in fact my native tongue. Often, my questioners are only satisfied upon learning that I lived in Israel for a number of years and that I do, with varying levels of fluency, speak foreign languages, most notably Yiddish, which they assume I must have learned at home.
I lived in Israel as an adult, however, and taught Yiddish to myself with a textbook as a teenager. The lilt in my speech is indeed present because I grew up in a place that is foreign to many of the people I meet, but it is not a land easily explained in a casual first meeting: “the Kingdom of Illness” as Sontag named it. I contracted Lyme disease when I was around eight years old, but was not properly diagnosed with the infection until I was nearly fifteen. Had I been treated right away, the illness might only have been a barely perceptible blip on the radar screen of my life; instead the infection entered my nervous system. I lost the sense of where my feet were in space, as well as how to form words with my tongue, and often became confused about how those words should be pronounced, a problem exacerbated by moderate aphasia.
When these and other neurological signs became evident, a neurologist at one of Boston’s many reputable hospitals theorized that I was developing a rare, juvenile-onset form of multiple sclerosis. An MRI was inconclusive and over the next few years I collected other diagnoses – chronic fatigue syndrome, dysautonomia, fibromyalgia – all incapable of addressing the entirety of my symptoms, but necessary in order to explain why I was unable to go to school. Eventually, my younger brother became ill as well, and doctors decided to evaluate Lyme as a possibility for both of us, given that illnesses in siblings are likely to be caused by environmental factors. Deer had always made frequent appearances in my parents’ backyard.
There is controversy regarding how long antibiotic treatment for Lyme disease should last, and how to proceed if symptoms persist after an initial course. Often left out of this discussion is what should be done in cases as advanced as mine was at the time that I was diagnosed. Because of the extensive neurological involvement, doctors recommended intravenous antibiotics, a treatment that was far from easy, nor free of complications. The process was further muddled by the discovery that I had several endocrine disorders that had also gone undiagnosed, and – though they were most likely caused by an autoimmune reaction to the untreated Lyme infection – were continuing to worsen even as my neurological symptoms improved.
Despite the controversy, long-term antibiotics largely worked for me, though the process was hit and miss and took roughly as long as I had already been ill. Gaining conditioning after so many years of being largely homebound and bedridden was itself a lengthy, but also rather magical struggle, and one that may be ongoing. The energy and time I spend on my health today constitute, at times, a full-time job. While some of my endocrine disorders eventually resolved on their own, I grapple with an enduring thyroid condition that can throw me off for weeks or months at a time. And I have never regained the natural way of speaking I must have had before my illness. When I speak in English, it feels to my tongue – though not to my brain – as if I am speaking a language learned as an adult: I have to recall how each word is pronounced and put effort into doing so correctly. The language does not simply roll off my tongue.
Of course, I cannot detail this history in a casual conversation with a new acquaintance, particularly given that neurologic disorders are difficult for lay people to understand. There was a time, however, when my health had only recently improved enough for me to begin meeting people outside of the world of illness, when I would have tried. I had to back then, when I was eighteen and was constantly asked about high school and college, neither of which I was well enough to attend. Even the nurses who had visited me weekly at home during my adolescent years would ask first about school – what else can an adult talk with a teenager about?
Part of me misses that time of being forced to relate my history at every turn, though it was fraught with frustration. I needed the people I met then to know about my illness: how otherwise, could they possibly understand who I was? Underlying this need was a fear that I, myself, was not going to know who I was once I became fully healthy. This anxiety seems silly to me now, not because my fears about identity were necessarily unfounded, but because I have learned there is no concrete border between healthy and sick, and though today I can dance and love to walk long distances, I will never feel one hundred percent healthy.
Over the past few years, it has been a relief to encounter people in the disability community who treat disability as an identity. This exposure, however, has come at a time when I am no longer sure where I fit in. I rarely talk about my illness with my newer friends, not because the memories are painful, but because it is difficult to convey in conversation that my illness was not simply an unfortunate event, but rather the formative experience of my life. My health has improved to such a degree that I doubt acquaintances will be able to visualize how sick I once was. Yet if they are able, I do not want to be responsible for them turning to another sick person and claiming that because my health has improved so much, anyone’s health can: when I was sicker, such responses added insult to injury. The controversy surrounding Lyme disease does not make these conversations easier, nor do cultural assumptions about illness and disability. For example, growing up, I did not think about my illness in terms of loss: I was too busy becoming myself.
In the earliest, more insidious years of the disease, as I was gradually becoming disabled but did not fully comprehend what was happening, I was terrified by the knowledge, festering deep down, that something was “wrong” with me, and I responded by over-achieving in school. When my ability to function left entirely, and the only activity I could manage was to lie in bed dreaming, I was freed from that pressure, though it took me a few years to realize and to appreciate the freedom. While I have always written poetry, I am not sure I would have had the conviction to follow through on making a life as an artist if I had not become so sick, both because suffering tends to send one on a slightly more urgent search for meaning, but also because my illness rendered any traditional paths in life impossible for me to follow.
I gradually lost some of the pressing need I once felt to tell every person I met about my illness when I began writing a memoir about it, and was able to articulate in writing what is difficult to communicate in conversation. When I was twenty, I used excerpts from the memoir to apply to a Master’s program in writing, which accepted me without a Bachelor’s degree, turning my lack of official schooling into a sudden non-issue, though I have always been proud of my unschooled history, and had a number of complicated feelings about accepting a degree after being excluded from traditional forms of schooling for so long. Last year, I was awarded a fellowship from the National Endowment for the Arts to translate a book of poetry from Yiddish, the language I taught myself during a year when I was pitied for being unable to go to college.
Lately, I have come to consider my improved health as an adult to be a privilege in part because it caused me to question my sense of self. This questioning pushed me toward a deeper understanding of the very concept of identity, which I have accepted as a phenomenon that should always be evolving and straining against its borders. In the meantime, as tiresome as it can be, I draw a certain comfort in being reminded of my own history when people ask where my accent is from, even as the question requires a memoir to answer.
MAIA EVRONA is the author of several poems and excerpts from her memoir on chronic illness that have appeared in Prairie Schooner, New South, and elsewhere. Her translations of the Yiddish-language poet Abraham Sutzkever were awarded a 2016 Translation Fellowship from the National Endowment for the Arts and have appeared in Poetry Magazine. She recently wrote on the importance of the NEA for Artnet.