An autoimmune love story

Megan Giller
Brooklyn, New York, USA

 

Our relationship with our bodies is the most constant, most intimate we will ever have. (Image courtesy of Flickr)

When I was twenty-three, my body attacked my liver. My doctor checked me into the hospital and my boyfriend and I broke up. That year, the year my body snatched my youth, ushered in nearly a decade of medical and emotional relapses and ruined relationships.

The doctors call my disease “autoimmune hepatitis,” a term I hate almost as much as the illness itself.

“Don’t sit on that dirty toilet seat or you might get hepatitis,” a first (and last) date once joked.

“Autoimmune, like AIDS?” friends asked me.

No, like a rare disease where my body suddenly decided my liver did not belong to it anymore and wanted to break up as painfully and loudly as possible. I have spent my whole adult life searching for a long-term relationship and all the while I am trapped in an unhappy marriage between warring parts of my biology that cannot call it quits without ending my life.

Our relationship with our bodies is the most constant, most intimate we will ever have. In my case, the union is so dysfunctional that it not only takes medicine to keep us together but also interferes with any other connection I try to create. It has taken more than a decade to change my mindset, to accept my body’s problems as part of my life – or at least learn to live with them.

Throughout my early twenties, my illness relentlessly disassembled my life. I spent a month without sleep in the hospital and at my mother’s house in Dallas, my skin and eyes the color of a rotten orange, my swollen organs racked with pain from medicines that promised to deflate them.

At midnight on the day before I was supposed to check back in to the hospital for a liver transplant, the silence reverberated in my bones like a symphony. By 1 a.m., I could not take it. Things were tense between my boyfriend and me since I had been in Dallas for weeks, in and out of the hospital, while he remained at our house in Austin with an endless supply of Natty Lite, saying he could not afford the bus ticket. But in desperation, I called him.

“I’m getting a transplant,” I told him.

“I’m at a bar,” he shouted into the phone, laughing at a joke I couldn’t hear. “Can I call you back?”

I lay awake unil 5 AM waiting for his call, but my cell phone stayed dark and silent.

I narrowly escaped that transplant. The medicine finally began to work and my dangerously high liver enzyme counts started to drop. I forced my way back to Austin despite my doctors’ recommendations. When I arrived, my boyfriend was still at our house, drinking heavily and cheating on me.

Oh, we were breaking up, all right. But not until I was more stable. But not until our lease was over. But not until we had helped each other move into new apartments. But not until after Christmas. But not until – we clung together in our angst and sadness about what had happened, what I had learned about my body and what he had learned about himself, hiding together in our house on New Year’s Eve until the sun set and we went to our separate parties.

I spent two years trying to break up with him, a familiar story by that point. My codependent streak ran as crimson across my life’s canvas as my body’s betrayal.

“You are your body,” my therapist often gently reminded me, but that harsh truth, that I am stuck in and with this body, felt like I was in an abusive relationship I could not escape. When it worked correctly, I hardly noticed my stomach rising and falling with each breath. But when my immune system stopped working – when my fatigue wrapped its fibrous rope around me and my right side swelled, weighing me down like an anchor – it was the most awful marriage I could imagine.

Four years later it was another boy and another relapse. My immune system practically shouted, “Something’s not right here, and it’s you, not me,” to my liver.

I was dating a computer programmer who spent most of his time manically pursuing his latest brilliant idea only to drop it for the next brilliant idea. He had decided to commit to a relationship (brilliant idea!) before meeting me, which I did not recognize as a warning sign. When my numbers and my fatigue reached a fever pitch, so did his enthusiasm. “Come on,” he barked as his lanky legs carried him across the Home Depot parking lot and I flagged behind. “I can’t wait for you.” My frailty did not fit with his plans, and he left – suddenly and devastatingly.

I, on the other hand, could not leave. Wherever I went, there I was – along with my body, at which I wanted to scream, “I deserve someone better than you!” and march away into the night to find my true love.

To add injustice to injury, that year I stayed in a job I hated for the health insurance. At that time, my preexisting condition meant insurance companies did not want me any more than the computer programmer did. I was an “undesirable candidate” for an individual plan and would be immediately rejected, countless representatives told me coldly over the phone. I spent my life working at my desk and crying in bed. I had my health, I felt, but not much else.

The year I turned thirty, Obamacare finally seemed secure enough to join. I left my job to work for myself, broke up with a short-term fling, and hoped to hell that despite what everyone told me, my twenties weren’t going to be the highlight of my life.

Seventeen days after my birthday I met the kindest, funniest, best person ever, a man named Marcus. He was nothing like the clowns I had dated before, which I liked to joke was because a friend had picked him out for me. Left to my own devices, I would choose the most dysfunctional one in the bunch. We quickly fell in love and after a few years together moved from Austin to New York. We had a great time exploring the city, then coming home to cuddle in our refinished Brooklyn brownstone with our uncoordinated but lovable dog. I felt lucky, content.

So it was a surprise to discover my immune system was unimpressed with our happy, healthy lifestyle. That September my routine lab tests came back abnormal, and my doctors prescribed on a mammoth dose of prednisone. Quickly I developed the classic side effects of the hormone: My face swelled to a balloon, my stomach ached 24/7, and, most attractively, I cried hysterically day and night. I was frozen with the fear that things would get worse. Yet as the medicine did its work, the symptoms lessened, and as I weaned off prednisone, the mood swings dissipated.

Then in April, a little piece of mail arrived, announcing that my crummy insurance plan would no longer cover my liver doctor. I whirled into panic, simultaneously paralyzed and manic with fear. I thought about taking a random desk job for the health insurance. I thought about moving back to Texas.

“Let’s get married,” Marcus said, holding me in his sweaty arms after returning from a workout. “Then you can be on my health insurance, and I can take care of you.”

He bought me an antique engagement ring and gave it to me in a secret garden on the Lower East Side. We rushed to City Hall in May and started planning a party for our friends and family in September, one year after I had been sick.

But when I tried to apply for his health care, the company told us about a caveat we had not anticipated: I was only eligible for the crummiest plan, a high deductible version that would cost us thousands per month for prescriptions, lab tests, and doctor’s visits. As I realized that even Marcus’ love couldn’t save me from my illness and our messed-up system, the 2 AM sobbing sessions returned, soaking our sheets, newlywed or not.

The truth is, I still do not know what will happen. In a few months I will be able to apply for a better insurance plan through his work, and I hope I can make it until then. Day by day, I am putting my life back together. I even caught myself laughing recently. “I’m going to tickle the shit out of you,” Marcus warned me before he launched. As I ran around our kitchen island grasping a spatula, laughing over the dog’s protective barking, with my favorite band, Wilco, blasting in the background, I thought, This is what there is. This life, this time, this body.

Then the laughter let up and I heard Jeff Tweedy’s raspy voice. “Oh, I didn’t die,” he sang. “I survived. That’s good enough for now.”

 


 

MEGAN GILLER is a writer of prose and poetry, and sometimes whimsical vignettes. She has been published by The New York Times, Slate, Zagat, Food & Wine, and Texas Monthly. Her first book, Bean-to-Bar Chocolate: America’s Craft Chocolate Revolution, was published in September 2017 and her site Chocolate Noise was a 2016 Saveur Food Blog Awards finalist.

 

Winter 2018  |  Hektorama  |  Personal Narratives