How Finding Ted Got Started

Ever since this pandemic started, I have had the persistent, pressing, urgent, need to visit my brother. I could not explain it to myself, or others, without sounding crazy. For one, I live in New York City, where the pandemic initially raged. My brother resides in Maryland. Travel made no sense, under, the circumstances. No one wanted New Yorkers crossing their borders, and no form of travel was without risk. And, technically, whatever it was I needed from him could wait, had already waited. My brother has been dead for forty years.

I was 6, my brother, Ted, 9, when he was diagnosed with a rare immune deficiency disease called aplastic anemia, which shuts down the bone marrow, where all red and white blood cells and platelets are produced. There was no cure. Most people died within six months, from infection. The long shot hope was that his immune system would miraculously kick in again, as it sometimes does with this disease.

At first, my parents tried to keep him at home. But one night, shortly after his diagnosis, in early September of 1972, he spiked a fever, putting plan B into effect. On September 7th, 1972, just shy of his 10th birthday, Ted walked into a sterile room, aka a bubble room, on the 13th floor of the National Institutes of Health in Bethesda, Maryland.

He hoped he’d be out by his 10th birthday, a little less than a month away. He wasn’t. He lived in that sterile environment, protected from germs but also isolated from the outside world, for 8 1/2 years. His immune system never kicked in again. He died, at 17, of heart failure brought on by too many blood transfusions, which had caused an iron overload in his heart.

I’ve written a lot, in the ensuing years, about loss. Sibling loss, to be specific. I wrote a book, in fact, part memoir, part reporting, called “The Empty Room,” that tells my story and those of other bereft siblings. I’ve sat on panels at grief conferences. I’ve written chapters for books on sibling loss. I have a posse of friends with whom I share this loss in common, and who support me, and vice versa, on the tough days.

But it wasn’t until this pandemic happened, and we all started living a version of Ted’s life, isolated, protected or protecting others, behind masks and gloves, lest infection creep in, that it occurred to me how much time I’d spent ruminating over his loss, and how little time I’d spent unpacking how he’d lived. How he did it.

My brother’s room measured about ten feet by ten feet, with a bed, a desk, a shower, and chair with a bedpan built into it. It was separated off from the “normal” half of the room by a clear plastic curtain. There was an opening, a door-sized gap, to enter his side of the room. One wall, on his side, served as an uber-ventilation system, pushing all airborne germs out.

My brother did not come out, except on rare occasions in a spacesuit complete with helmet and backpack style air filtration system. Only nurses and doctors, dressed from head to toe in gowns and masks and paper booties, were allowed in. His food had to be sterilized at high heat before he could consume it, which made it barely edible.

It was much worse than what we are living now. Yes, we wear masks, and sometimes gloves. Yes, some things are shut down. We fear getting sick, of dying. We are weary of having our liberties curtailed. We miss our lives. We miss our friends. We miss normalcy.

Some of us rebel more than others, insist that we cannot, will not, be inconvenienced. The baking projects, and self-care, the knitting patterns, that so enamored us for a time, have lost their allure. We’re so tired of it. The news is full of stories about the epidemic of depression and loneliness we are facing as a country, speculating about the coming mental health crisis.

But me, all this time, I’ve been marveling that my brother, this boy, lived this kind of life alone and with a grace that, as I think back upon it, takes my breath away.

Here’s what I remember about my brother: his humor, his kindness, his silliness, his absolute unquenchable curiosity and thirst for learning, his love for reading, his passion for a project, whether it was mastering the guitar (which he did), starting a hospital newspaper (also did), writing a play (did), or memorizing pages and pages of Poe and Shakespeare just because he liked the sound of the words.

People came to visit—DJs, astronauts, authors—-with the intention of dropping in on a sick kid to do a good deed. And then they came back. Again and again. Until something of a salon had formed in the normal half of my brother’s room. Walk in on any given day and you never knew who you’d find. He was never bored, or boring. He loved life, and he found a way to live it, even in what anyone would consider impossible circumstances.

When he died, with IVs in both his hands and feet, and a line into a central artery in his neck, he fought to stay. Unfortunately, his body wasn’t up to it.

How did he do it? Live in what was essentially extreme quarantine for nearly nine years? To be honest, I don’t know. I was 6 when he got sick, and 14 when he died. And while he and his life, my childhood in the hospital, the people who came to his room, are etched into my being, it’s not an easy thing to unpack.

He was my older brother, a fait accomplit. I accepted him as he was, took him for granted as he was. That he might have evolved into the person he became, over those years, was not something I thought about.

Four months into the pandemic I did drive down to Maryland and go to his grave. I brushed the leaves off his stone. I put daisies, my mother’s favorite flower, in his vase. I read to him, as he once had to me. And I asked him how he did it. And, of course, miraculous as he’d been in life, there was no way he could answer me.

I was still happy I’d gone. I’d needed to feel near him again, even if only to his grave.

As I’ve thought about how to understand him, since, and how to tell his story, I’ve wondered how I could ever do it. He’s not here to provide answers. And while I was witness to his life, I was also a kid, and probably missed a lot.

Then it occurred to me how many others had interacted with him, too. The doctors, nurses, friends, relatives, authors, DJs, musicians, among others. I had heard from many of them after The Empty Room was published. Many were people I’d never met, who had relationship with my brother that took place over daily blood counts, or visits while I was in school.

I was not, I realized, the sole owner of his memory. There’d been so many others who witnessed his life, too.

And so I started to Google, and look for email addresses, and search Facebook, for long ago names I remembered. And the response I got, from all I invited to join in on this project, to be interviewed and to share stories about Ted, was an unequivocal yes.

Welcome to the Ted project.