Limited

by Mara Cohen

Hiroshi Tsubono

I can’t recall a single conversation with my brother, Danny. Not a solitary one. Here’s a sampling of what I do remember: taping the Halloween decorations on the living room windows, sneaking into the pool at the Writer’s Manor Hotel before it was demolished and dancing the west coast swing at the Black Angus steakhouse. But what did we discuss while we did these things? Our favorite plot twists on Star Trek? Whether Geraldine Ferraro was a viable choice for vice president? For the life of me, I have no idea.

One thing I’m certain of is that we didn’t discuss our feelings about his disease, familial dysautonomia—or for that matter, my absence of disease. As children, the topic probably never occurred to us. I for one avoided it once we were older.

I never asked my brother if he feared the debilitating and potentially fatal “autonomic crises” that struck out of nowhere—the cyclic vomiting, the wild blood pressure swings, the fevers. I never asked if it hurt when the nurse tried and failed and tried again to find a vein for an IV. When his vision deteriorated and he couldn’t keep up with the reading load, I didn’t ask how he felt about transfering from the university to the community college. When his walking and balance slipped, I didn’t ask if he fell on the street or if anyone came to his aid if he did.

When his renal function began shutting down, I didn’t ask if he was worried. I never asked if he resented living in a body that constantly betrayed him, or if he resented me for my good health. It’s not that I wasn’t curious about Danny’s inner world. I was a considerate little sister who respected his privacy. Also, I didn’t know how to ask.

I did know that Danny’s disease was genetic, and I grew up feeling lucky I hadn’t inherited the same mutation. Later, his death at the age of 28 and when I was 24 made me feel unlucky—robbed of the opportunity to have an adult relationship with him.

Recently I stumbled across a collection of essays written by adult siblings of people with disabilities. Some of the writers described the toll of caring for their siblings—careers derailed, marriages strained, finances stretched to the breaking point. The entries got me wondering, am I lucky Danny died when he did—before it fell to me to provide for his care, before I was an age to even contemplate that possibility?

Several days passed before it occurred to me that the thing that actually would have been lucky was if Danny hadn’t had his disease in the first place. Danny’s disease was something I’d always just taken as a given, same as his right handedness, brown eyes and fondness for stupid sitcoms.

When Danny died, a well-meaning friend said, “Now you’re an only child.” The comment didn’t sit well with me. I’m not an only child. I had a brother once. I wish I could press a rewind button in my brain and remember what that felt like. If I could piece together some specific conversation, it might help.

A few of Danny’s trademark phrases do spring readily to mind. During a discussion with friends concerning matters of Great Philosophical Import, my brother might clear his throat, point his index finger skyward and announce, “I’d like to make a remark.” Upon taking his first bite of whatever he happened to be eating, my brother might—like God in Genesis—proclaim it to be “Good.”

But the closest I can reconstruct to an actual conversation goes something like this: Danny and I are heading into the Spencer’s Gifts to check out the selection of fiber lights when some girl working at Orange Julius calls, “Hi, Danny!”

“Who was that?” 13-year-old me asks.

17-year-old Danny shrugs in reply.

Naturally, it was reassuring to see my brother liked by pretty girls working at the mall, especially when so much about him could have made him the object of ridicule. It wasn’t just his erratic health, his physical disabilities or his cumbersome corrective apparati that concerned me. It was also the fly he’d forget to zip, the gooey eye booger, the black peach fuzz above his upper lip our mother insisted looked debonair or the faint smell of urine and A&D ointment that occasionally followed him. I didn’t dare bring up any of these grooming issues with Danny. It just didn’t seem right given everything else he had to contend with. Still, I wasted tremendous energy worrying these little things would compound the very real impediments my brother faced in the world.

I don’t know how Danny experienced it, but what strikes me now is that there were plenty of people who either didn’t see those minor flaws I obsessed about or at least saw past them. Much of what comes to mind when I picture Danny aren’t conversations but the validation I experienced when I saw my affection reflected in others’ eyes, like at his high school graduation when his name was called out for a special award and the senior class sprang to their feet, and the entire high school gymnasium joined in and kept on applauding the whole time while Danny, grinning modestly, proceeded at his usual turtle’s pace toward the podium.

Or down at Gold’s Gym, where they loved all 90-pounds of my brother so much they hung a photograph of him on the gym’s “Wall of Fame,” along with the autographed shots of the elite athletes who trained there—former players for the Denver Broncos, boxers, wrestlers and competitive bodybuilders at their ripped and oiled peaks. Smack-dab in the middle was Danny, shirtless and striking a front-double bicep pose with stick-figure arms.

Or when I knew I was in love, the time my college boyfriend came for Thanksgiving. He held the casserole of mashed potatoes so Danny could serve himself. My boyfriend’s smile grew and grew along with that pile on Danny’s plate. Watching my brother eat was like watching a snake swallow a hippo. Seeing him eat was a wonder to behold, and that smile on my boyfriend’s face showed the nourishment flowing both ways.

Danny wasn’t one of those disabled people who scale buildings or jump out of planes. His disorder was such that just getting through the day could be a death-defying feat. He was an extraordinary ordinary guy just doing his thing—devouring whatever was on his plate like it was the greatest thing he’d ever tasted, laughing like a hyena if something was funny. It feels good to be around someone like that—someone who takes pleasure in living.

If Danny hadn’t had been born with familial dysautonomia, he’d be in his 50’s. He’d be handsome like our father, only more fine-boned like our mother. It’s hard for me to picture that—my brother “normal.”

Maybe we’d sit together on his backyard deck and listen to the sounds of our kids playing. What would we talk about? His work in the lab or his job in sales? His glory days playing high school football?

I regret there’s much about my brother I either can’t remember or never knew to begin with. I regret my imagination is so limited I can’t even picture this other version of Danny—a Danny born healthy—and the difference that would have made for each of us.

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Mara A. Cohen, Ph.D. is a writer, public speaker, civic activist and mother working on a collection of autobiographical stories about family and resilience. Her writing has appeared in the Los Angeles Daily News, the LA Business Journal, La Opinion, National Civic Review, Chicken Soup for the Soul, The Doctor T. J. Eckleburg Review, The Nervous Breakdown, The Hairpin, Alimentum and numerous other literary and peer-reviewed journals. Her greatest joy is cultivating meaningful connections with other humans. Read more of her work at http://maracohen.com/