My doctor was not taking my endometriosis pain seriously, and it was time to advocate for myself.
When I eloped to Key West in 1998 with an HIV-positive guy 20 years older than me, it seemed like a laughably bad decision. This, my friends and family warned, would not end well. I understood their point but wasn’t dissuaded. I’d found true love.
Besides, when does marriage ever end well? Even if two people stay together through thick and thin, in sickness and health, they eventually reach the death-do-us-part part. Theo’s immune system was holding steady at the time, but between his age and HIV, I had to assume he would go first.
So by marrying him that balmy Florida morning, I also wed myself to the idea that, at some point, I’d have to watch him die. I tried to prepare by picturing how it would go down — in a hospital room or, a better scenario, at home in the New England farmhouse we dreamed about owning one day.
I imagined feeling sad and lonely after Theo’s death, but also grateful for whatever time we’d be lucky enough to share. No regrets. My widowhood was the price I would pay for our happiness.
I don’t really believe in soul mates, but Theo and I did have an immediate connection when we met at the health food store where I worked on summer break from college.
I was 19, an idealistic wannabe-hippie with fantasies of living on the land. Theo was a regular customer, an adorable landscape architecture grad student who ate an inordinate amount of brown rice. I’d never had the hots for a seriously older guy before, but we shared so much in common — musical tastes, political leanings, religious beliefs — that our age difference seemed irrelevant.
Everything about him appealed to me. His strong arms and blue eyes, his love of gardens and art, the obvious care he took with his health. And what other women might’ve considered a red flag — Theo’s 12 years of sobriety — I took instead as a good sign. My father was an alcoholic who kept drinking even after losing all his family and friends, his career, his money, and his liver. I had given up on my father ever getting sober, but Theo proved that at least some people were capable of change.
At the store I flirted as best I could, awkwardly, but he seemed hesitant to get involved. Then we went out for sushi one Saturday and, in the car afterward, I kissed him. Theo gasped in surprise and held perfectly still, as if I were removing a splinter from him. He had never dated anyone so much younger, and I figured he was freaked out by my age.
About a week later, Theo sat me down on a park bench one night and confessed the real reason he’d been holding back: He was HIV-positive, the damage left by a dirty needle from his wild past. My first thought was that this explained everything. The distracted mood he often fell into, his refusal to do more than kiss, all that fucking brown rice he ate.
It made total sense, but my body registered shock. I felt as if I were sliding off the bench, toppling into the darkness even though I hadn’t moved a muscle. I had hardly drawn a breath since he said the word HIV.
It was the summer of 1992, and the same summer that basketball players at the Olympics in Barcelona were refusing to get on the court with Magic Johnson. Back before the drug cocktails were developed, when HIV was considered 100 percent fatal.
While I sat speechless, Theo explained that his T-cell count was still normal even after 12 years of infection. No sign of AIDS. He didn’t know whether it was due to his diet, or sobriety, or sheer random luck. He said he hoped to survive long-term, but accepted that he might not. He was sorry for not telling me sooner. He understood if I never wanted to talk to him again.
I still can’t explain why I reacted the way I did. But my first impulse was to move closer on the bench, put my arms around him, find his face in the dark and kiss him. I was a sex-ed savvy college student and understood about HIV transmission (saliva okay, come and blood not). I also understood that even if Theo never got sick, having babies together would probably be impossible.
That was okay, though. I liked kids well enough, but I’d always felt a strong gut instinct to not procreate, and to not pass down my father’s shitty genes to an innocent child.
That night on the park bench, a similarly clear instinct told me to stay with Theo despite the risks, to take reasonable measures to protect my life, but not live it in fear.
My poor mom. She was appalled and totally convinced that I was repeating her mistake of picking the wrong man. I could see her point of view and could see how reckless my choice looked from the outside, yet from the inside it felt so right. Not in a sick, blinded-by-love way either, but in a calm, certain, facing-life-and-death-square-in-the-eye way. I really believed I was following my heart. Mom believed I was following it straight into an early grave.
Over the next two years, Theo and I built our relationship long distance while finishing our degrees in separate states. Then we lived together for two years in Ithaca, then two years in a funky old Winnebago, and finally eloped at the tail end of our road trip.
By that time, Mom had stopped actively trying to break us up, but she still opposed the relationship. No matter how often I reassured her we were being safe, she kept imagining me dying, childless, of AIDS.
I mean, I get it. I can’t blame her for being pessimistic. She didn’t know how things would turn out. No one could have guessed that, after 23 years together, I would still be married to Theo today, still HIV-negative, and enjoying such a happy and healthy life with him, here in our falling-down farmhouse on the coast of Maine.
Or I thought I was enjoying a healthy life. In the summer of 2010, I was diagnosed with Stage III breast cancer. At 37 with no real family history, I hadn’t begun getting mammograms yet. I felt a lump, asked my gynecologist to check it out, and one head-spinning week later, I found myself huddled in the chemo chair hooked up for my first infusion. Scans showed the cancer had already invaded my lymph nodes, so my doctors wanted to shrink the tumors before surgery.
Still in shock from the diagnosis itself, that dose of chemo left me feeling as if I had simultaneously contracted food poisoning, dropped acid, and been mauled by a lion.
Over the next month, I gradually adjusted to treatment and braced myself for my upcoming mastectomy. I also waited for the results of genetic testing, although doctors said a mutation was unlikely. My only relatives in three generations with breast cancer were two great-aunts, one on my father’s side, and one on my mother’s.
But since life can apparently never ever go as expected, I tested positive for a BRCA2 mutation that causes a 50 to 85 percent chance of breast cancer. And, in yet another fun twist, it turns out I didn’t inherit this mutation from my crappy father whose crappy genes I’d always been afraid to pass down. No, I got the mutation from my mom, the woman whose primary mission in life has been to keep me safe. The woman who spent years of sleepless nights worrying that I would contract HIV, get sick and die. Now I have gotten sick and very well might die. But not from any virus.
How bizarre that the man Mom swore would give me AIDS has become my devoted caretaker while I battle the disease she accidentally caused me.
From the moment I found the lump, Theo has been by my side, taking notes at doctors’ appointments, cooking vats of soup, crying with me, and making me laugh. He insists I look beautiful without hair or breasts and actually convinces me he means it. The morning after surgery, a nurse came to check my vitals, and when she pressed the stethoscope to my bandaged chest, Theo told her, “Just so you know, that’s the best heart you’ll ever hear.” The nurse looked up at me with tears welling in her eyes.
Even my mother, who thankfully remains cancer-free, has to admit this guy is a keeper. And after testing BRCA2-positive, Mom finally stopped lamenting my lack of children. I know she misses having grandkids, but we’re both relieved that our mutation hasn’t been passed down to another generation. Which very well might’ve happened had I listened to everyone’s advice instead of my gut and chosen a more conventional life with a younger, more “suitable” man.
These days I try not to waste time imagining what the future holds, since I obviously have no fucking clue. My latest scans are free of cancer, but that doesn’t mean I’m in the clear. My tumors were aggressive and breast cancer is like a weed. Unless the root is eradicated, it often returns.
So every night I swallow my Tamoxifen, Theo throws back his handful of meds, and we joke about who will kick the bucket first. It’s not such a safe bet anymore that he’ll go before me.
Now when my mind insists on picturing an end to our story, I visualize a tie. Some freak accident many years from now, a falling pine tree, or a nice propane explosion that claims no other victims, just the two of us, at the exact same moment. Preferably while holding hands. Hey, it could happen. You never know.