Chronic Illness: The Power of Silence

Chronic Illness: The Power of Silence

by Catherine Hervey December 19, 2017 3 Comments

World AIDS Day, as many people probably noticed, was December 1. Every year, it brings about events, conversations, and lots of profile pictures turned to red ribbons—a showcase of awareness my generation has always been comfortable with. I’m a child of the nineties, born late enough in the previous decade that when I got to that part in The Joy Luck Club where Waverly is repulsed at the idea of having a gay hairdresser who might get her sick, I was confused, plagued with fragmented questions: But that’s not how… Why would anyone think…? I’d missed the muddled, whispery panic that defined the beginning of the AIDS crisis.

Talking openly about AIDS was a given as far back as I can remember, even as a young child. By the time I was a teenager old enough to participate in advocacy campaigns, AIDS had mostly been tied to Africa in the American public consciousness. In popular opinion, AIDS was about Sub-Saharan poverty, education gaps, and that thorny problem of silence in cultures seemingly so different from ours. I learned just enough to develop a simplistic, youthful frustration with all those nebulous people an ocean away who couldn’t figure out how to speak out the way we could, especially when it meant the difference between life and death.

And so, when I decided to move to Uganda for six months, I brought this perspective with me. There were lots of funerals in the town I lived in, but the only indication ever given about why was the delicate phrase “chronic illness.” Everyone I knew appeared to live in a world of code and silence that compounded my frustration and reinforced my ideas, until the day I finally met an exception. She was helping me wash laundry, actually, when she told me she was HIV positive, the same afternoon we met. She was a friend of my adoptive family there, and I was amazed at her—this uniquely confident figure, hands covered in suds while she talked about how badly people like her were sometimes treated and how wrong it was. She was both a nurse and a professional tailor, and over the following weeks we grew to be friends. She taught me to embroider, drawing a pot of flowers on a piece of muslin and showing me how to stitch up one side of the vase with gray thread. The only thing I’d ever sewn before was the ribbon on my pointe shoes, so when she handed the needle to me I fumbled along and drew blood several times.

I only managed a partial outline that first day, but I was still very proud of it and showed it to my adoptive mother that evening when I got home. She made all the right noises of appreciation and then told me that if anyone ever used my needle I should toss it out and get a new one. I asked her why; she said, “They tell us not to share needles.” I realized in a moment what might have happened to me. I remembered all the times I drew blood, and began to think I remembered my friend pricking her thumb too. The fear started in my arms and worked like ice through the rest of me, but I found myself saying something like, “Okay, thanks,” and walking away to take a bath.

For the next several months I watched my own silence as though I had no power over it. I didn’t tell my boyfriend, though it might have been relevant to our conversations about getting married. I didn’t tell my mother back home, or anyone I worked with. I cut my foot fetching water, bled on the front steps, and said nothing to my sisters as they helped me clean it up.

And even now, I couldn’t tell you why.

Sometimes a panicked whine circled in my head as I fell asleep: I’m a good Christian virgin I’ve never done drugs I didn’t do anything wrong it’s not fair. As though it would be if I had.

My friend came to visit again several weeks later and picked up my partially-finished vase of flowers while we were all chatting outside. She started working on it and I watched, silent as ever, as the needle rose and dipped with her fingers. After she left, my adoptive mother came to my room with a new needle and told me to throw the one hanging from a red petal in the latrine. She paused in the doorway as she was leaving and said, “Do not tell her,” and of course I didn’t.

When I got home six months later I didn’t say anything to my family. Instead, I looked up AIDS clinics on the internet and then erased the history on my parents’ computer. I went to get tested on a day everyone was out of the house so I wouldn’t have to make any excuses.

My memories of the clinic I visited are mostly of the shock of contradiction—the sudden, jarring openness of being asked detailed questions about my nonexistent sexual history paired with anonymity and a total lack of eye contact. I remember the woman who ran a stick over my gums and sent me back to the waiting room for what seemed like longer than necessary.  I remember the musical way she pronounced “ne-ga-tive,” when she called me back, and that she still didn’t look at me, even then. And whenever I see a new public awareness campaign I remember the complicity I have in glancing sideways, staying quiet. I know now that the strength to speak openly about the heavy and the shameful can be more hard-won than it seems.

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Photo by Kristina Flour on Unsplash




Catherine Hervey
Catherine Hervey

Author

Catherine Hervey has an MFA from the Sewanee School of Letters. She has written for Books and Culture and The Curator.



3 Responses

Jane Rice
Jane Rice

January 12, 2018

A very powerful piece of writing. I’m sending it on.

Joseph Kramer
Joseph Kramer

December 21, 2017

My wife sent me this article and I’m fascinated by the culture of silence. It’s made me wonder what other injustices and sufferings I stay silent about. For example, maybe the United States is suffering under a silent mental health epidemic the same way Africa is silently suffering from AIDS. Both are the skeleton in the closet no one wants to talk about.

Erin Kramer
Erin Kramer

December 19, 2017

How frightening. This really made me rethink how I’ve stayed silent or avoided speaking up to protect myself, even when it might have helped someone else.

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