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  • ENA


    Excerpted from
    The Empty Room: Understanding Sibling Loss
    By Elizabeth DeVita-Raeburn

    My parents made this easy. It was they who had set the shroud of silence on the subject of my brother. They never talked about what had happened. And they would talk about Ted only on rare occasions, when I was alone with one of them. None of us brought up my brother when the three of us were together. I didn't even know if they would talk to me for the book. My mother, at first, greeted my request with an emphatic "No!" Then she relented and said she would talk to me if I didn't quote her directly. She said she considered what happened to my brother a private matter, and that she didn't like to air things. It wasn't her way.

    There were complications on my end in getting together, which my mother seemed happy to accommodate. We could do it later, she said cheerily. Finally I realized that I would need to interview her by phone. When I called her and asked if we could talk then, she sounded cornered. Frightened. Faint of voice. But she agreed. I explained that because I'd been a child when my brother died, I'd never understood the story from an adult point of view. I wanted to know what happened.

    It was interesting, hearing her try to find a way to tell it. She sounded like the version of me who had struggled to type the word "I" and go on. Finally, she began with the night of the bruises. She told me, again, of my brother sitting at the dinner table when she commented on them. Although this time, she said that my father had brought him into the hospital that night, not the next day. It was clear, she said, that something was very wrong. This, according to my brother's records, was September 6, 1972.

    The next day, my father met her at the entrance to the hospital. As she walked in he said, "It's aplastic anemia." She almost fell to her knees. She'd known about the disease already; my uncle had once called our house in the middle of a dinner party to ask about a friend's child who'd been diagnosed with it. Then, hearing my father explain the disease had sent only a small chill up her spine. Thank God. Not her child. And then here he was, my father, saying yes, her child. Her whole life, she started to say ... and then she stopped and corrected herself. Our whole life had changed over dinner.

    They brought him home two days later. They were going to try to treat him as an outpatient. They were hoping he wouldn't get infected and that he might spontaneously recover, as some people with this disease do. We went out for Chinese food that night, because that's what Ted wanted after his ordeal. It was September 8.

    Sometime in the next week, the doctors tested me to see if my bone marrow matched Ted's. My mother told me I hadn't thought much of that. Ted, she said, was very supportive. He comforted me. I had remembered this scene, in a foggy way, but I'd never been sure if it had really happened. What I remember is feeling attacked by adults, while my brother, one of my own kind, had stood by my right side, telling me that it would be okay. Her retelling evoked the physical sense of him standing by my side again.

    He started school. His hemoglobin count was low, and he was tired a lot. My mother couldn't remember how much time elapsed between his diagnosis and the next crisis, but I'd read the records. I knew the next one had come on the evening of September 13.

    We were sitting in the family room watching TV when Ted said he felt warm. The thermometer confirmed the fever. A neighbor was called to watch me, apparently after I'd gone to bed, and my parents hustled him into the hospital. The decision was made to put him in The Room. In his medical chart from that evening, there is a page with a six-step plan:

    1.) Laminar airflow room but without antibiotics

    2.) Complete bacteriological work-up (virus, fungal, bacterial)

    3.) Chest X-ray

    4.) Routine blood work-daily counts

    5.) Consider transfusion of platelets and packed red blood cells, when indicated

    6.) Skin care to areas of eczema

    What it didn't say was step number seven: Wait and hope. For how long, no one knew. The technology behind these rooms was in its infancy. They'd been used to protect leukemia patients from infection while they were undergoing chemotherapy, which could temporarily decimate their immune systems. No one had ever lived in one for longer than a few months. No one whose immune system wouldn't automatically rebound on its own had been harbored there.

    Would this be the beginning of a new way to approach aplastic anemia? Nobody knew. It was an experiment, putting Ted in there. A gamble. A way to buy my brother some time. Ted hoped he'd be out for his tenth birthday, a little more than two weeks after he went in, my mother said. Both of us started to cry at the surety of his disappointment. How could he have known that he would spend eight and a half years there, that at the time of his death, he would set die record?

    They were open with him, my mother said. He was far too smart not to be. They explained that The Room was to protect him from infection until his bone marrow recovered. But they didn't tell him everything--that he might die if he wasn't in The Room, and that he might die anyway. She cried when she remembered one night, soon after Ted entered The Room, when this had been revealed to him. Ted's doctor had been trying to start an IV on him. My brother was being difficult. To enlist his cooperation, the doctor said that if he didn't get the IV, he might die. At this point in die story, my mother gave voice to what had become a refrain-a horrified, painful refrain-in my own head: He was just a little boy. When I was a child, my brother had seemed big and all-powerful to me. The combined horror of his youth and his illness hadn't registered. It's only now that I can see him as a little boy in extraordinary circumstances. It is an unexpected and new grief.

    The first year had been very hard. In my brother's medical notes, I saw a repeated entry entitled "Room adjustment." When I'd first seen it, I thought it meant they'd had to tinker with The Room to get it working just right. When I looked back, I realized that they were referring to my brother's psychological adjustment to The Room. In these notes, he is alternatively hostile, angry, and cheery. My mother remembered the tantrums. The time he'd thrown everything out of The Room. Like what? I'd asked. Everything, she'd answered. There was another story about a very bad day in which he was supposed to get a transfusion of platelets. He did not want another IV. He was screaming. Yelling. At one point he'd even pulled his mattress on top of himself.

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