Osler-Weber-Rendu

by Terese Svoboda

Bending over the broccoli in the grocery store, I might suddenly find, like Snow White, a drop of my own blood on my blouse front, with more to come. Or in the middle of an interview, on a high dive, boarding a bus— the bleeding becoming more frequent as I grow older. I have Osler-Weber-Rendu, a/k/a hereditary hemorrhagic telangectasia, a genetic disorder that leads to abnormal blood vessel formation, its most telltale symptom being bleeding from the nose. You think second grade nosepickers? No. My mother, the carrier, bled onto her pillow at night while she slept. Only the brother born right after me had it worse. By the time he was eight, doctors had blown up balloons inside his nose to dam the blood. He bled into pots, leaning over the bed, he bled when he sneezed, he bled all over his opponent when he wrestled in high school—a tactic that always shocked them to his advantage. Pale-faced, he had seizures as a result of an abnormal blood vessel formation in his brain, and died young. You can’t cauterize the problem away in the brain or the nose, even if you show a hairless nose to House who diagnoses your “medical mystery” in a 2007 episode as Osler-Weber-Rendu. One in five thousand people of all races have it, and the disease occurs evenly throughout the world. The French Carribean islands of Bonaire and Curacao, off the coast of Venezuela have the highest incidence, 1:1331. It’s not in the brochures.

When I was nineteen and in love, I ran off with my high school sweetheart, a kid whose most dramatic gestures always involved walking. He was studying pre-med at McGill and once walked barefoot across the Montreal ice for blocks, pleading for me not to leave him. The gesture proved persuasive—for a while. When he had all of winter break to walk across Nebraska, he arrived to ring my family’s doorbell and cast his cow-like mournful eyes on my brother to ask if I were in. It wasn’t two hours of passionate exchanges later that I agreed to hitchhike with him to Seattle where he had found a job as an ironworker. There was a big scene, my enraged mother shook her toddler at me to underscore my wickedness with his innocence. Having reached the age of rebellion, I threw an apple into my backpack and walked off with my boyfriend.

But ever the dutiful daughter—or was I rubbing her nose in my escape?—I called home the day after we arrived to give my mother my address. She wrote it down, repeating it as if she couldn’t believe I’d actually left, then said she was coming to visit. I was shocked. The year before she had dropped me at my college in New York without so much as a single word of advice, or even much of a goodbye. Maybe I finally had 282 her attention.

She arrived in Seattle alone, another anomaly, but Dad was busy plowing or welding, whatever farmers did in January. She had hired a housekeeper to take care of the other eight kids. Usually if my parents traveled together, I babysat. When they went off to Europe for three weeks the summer before, I cared for everyone, including the three-month-old baby. They returned to a Welcome Home banner, Sunday dinner, and a homemade cherry pie. My sister said my mother went into a collapse after I left for college.

Mom included the boyfriend in her invitation to dinner at her hotel. At forty-five, she was stunning and knew it: thick black hair cut in a sleek Seventies cap, dark eyes, jewels around her neck and fingers, a perfect smile, and a green silk shantung suit. My boyfriend was half in love with her. Half in love? They talked in whispers and told each other jokes. Appetizers arrived with her second scotch, and he ordered another. She had nothing against him, he was attractive, intelligent and fawning—I was her target. Would she hiss whore at me again the way she had when I left home? Would she apologize?

Steak arrived. We had ordered big. We had little money for anything for another week since neither of our new jobs had yet to produce a paycheck. Of course we didn’t admit that to her. Both of us moved the food around on our plates and ate little, hoping to bag the rest for later. What did we talk about while we chewed our tiny pieces? The beautiful rain of the city, the view of the water from the window, the trouble with all airlines. Why are you here? wasn’t a question either of us could ask outright. That would be treating her like another person and she was not another person, she was my mother. The reverse—that she would treat us like adults, like some other parents rumored to exist, and that she was here just to see that I had settled in—I couldn’t imagine.

By the end of dinner, she laid down her cards. Doctors had found a hole between her heart and her lungs, caused by Oslo-Weber-Rendu. In those days doctors sawed open the sternum and stomped around inside, tying up blood vessels, making the operation quite dangerous. (My brother had a similar operation in the 90s and attended a cocktail party afterward.) The operation was scheduled at the Mayo Clinic, the disease rare enough to have interested them, interested them quite a lot, she said—she bat a set of false eyelashes that everyone wore then—but she was postponing it until I came home.

Intact.

We giggled.

I had to pretend to decide. My mother’s life or mine?

She was asking me to remain a child, to acquiesce that she still held all the power, especially when it came to sex and men. Or was her plan to grandstand so the suitor would be frightened off by the genetics? Either way, I was expected to agree with her tactics and humbly return to her domain. Nevermind whether it was too late to protect the particulars. 283 Many years later, I struggled to give her the benefit of the doubt: maybe she wanted to prevent me from being stuck with a child born too soon. A mother in that era, especially with her level of fertility, could not imagine any other outcome with regard to sex. After all, she’d had me a month too early for the wedding date, an embarrassment no one ever talked about, although I had done the arithmetic long ago. My untimely arrival forced her to abandon any possible artistic career for the good Catholic girl’s life of meal preparations and diaper folding. Mixed up in this was the idea that the pill could never be involved—the church forbade it.

I imagined her bleeding uncontrollably, her lungs swamped, the heart straining and stopping because I had refused her—the Sacred Heart, pierced and draining.

What about my heart?

The table was cleared. After my mother’s stunning revelation, my boyfriend and I forgot to ask to have the food bagged. We whispered together while she went off to freshen her lipstick. He was gallant enough about his part in the situation—of course I could go back to my mother—and I hated him for it. Six months later, he walked away one weekend with another girl more gullible to the dramatic gesture, and was not missed. Oh, but what did I say to my mother that wet Seattle night before we left the restaurant? She flew back alone.

It never occurred to me she might have visited to say goodbye.

She died forty years later, not of anything to do with her condition, just old age. For the rest of her life, she was furious whenever I managed to accomplish anything outside the maternal role. I had cheated—that’s what she thought of contraception. On the board of Right to Life in her state, she campaigned and marched and leafleted against birth control and abortion. She put work into justifying her position. In response, I made a documentary about how Margaret Sanger manipulated the media to draw attention to birth control as an issue. The Getty named it one of the two best bio-pics of the decade. But in the end, my mother won. I had a fifty percent change of handing down Olser-Weber-Rendu to my own children— and both my sons have it.

Now—have I bled all over you? There it is, the great tide that is inside us, outside, and the reader recoils. It’s not my blood, I’m hollow. Or should I have sat there, great gouts pinched back in my hankie, staring at the blank screen, swallowing?

A 2013 Guggenheim fellow, Terese Svoboda’s most recent book is the novel Bohemian Girl. Her biography of the radical poet Lola Ridge is forthcoming from Schaffner Press in 2015 as is When the Next Big War Blows Down the Valley: Selected and New Poems from Anhinga Press.