Little Boy Lost

This is long.

My brother died of cancer in 2002, when he was 20 years old. (If any of that is triggering for you, please don’t keep reading.)

I’ve spent the last 14 years basically existing in the same state of suspended grief that I settled into about 6 months after his death. It hurt to think about him, so I didn’t think about him.

Then my cat died. And maybe that seems like a weird trigger, but all of a sudden I couldn’t keep all my grief packed away anymore.

Anyway, here’s a thing I wrote just after he died. It was published in a modified form in my hometown weekly newspaper, but this is the original version.

549,838 cancer deaths were recorded in 1999 in the United States. Cancer is the fifth leading cause of death in men between the ages of 20 and 39. In the year 2002, it is estimated that 1,284,900 people will be diagnosed with cancer in some form or other.

Unless you have known someone who has died of cancer, these are nothing but statistics. Numbers. But come sit here with me for a minute. Next to the adjustable bed the hospice people have been nice enough to loan us. Don’t talk too loudly, you’ll wake him up. Watch my brother breathe, great gasping breaths through his mouth. Find yourself counting with me the seconds between them as they get longer and longer. Watch.

We’ve held this vigil in some form or other, my sister and I, my aunt and uncle and mother, since Beren got sick in 2000. He’d just graduated from high school and was working lots of hours at Marianne’s ice cream parlor; he figured that was why he was so tired all the time and why he’d suddenly gained weight. My sister, the personal trainer, teased him about it. “C’mon, get off your butt.”

Jutting his chin at her from the couch, grinning that slow, goofy grin. “Woman, get in the kitchen and make me a sandwich.”

Three months later he was in the Stanford Pediatric ER, in a coma.

We, the dream team, my sister and I, made the family waiting room at Stanford Medical Center into Party Central. We brought in games and smuggled food. We poked each other when we started to fall asleep and cracked jokes to all the family members who wandered in with that drawn, ready-to-cry look. There is no crying here! we said. C’mon, any minute he’s going to sit up, he’s going to blink at us and demand to know what he’s doing with all these tubes poking out of him. So no crying!

And then I’d go home and break down and stay that way until the next time I went to see him.

Cushing’s is almost unheard-of in someone of my brother’s age group and gender. It’s a disease of adolescent girls and middle-aged men which affects the adrenal system, flooding the body with cortisol (the “fight or flight” hormone). It happens when the pituitary or adrenal glands are somehow stimulated, either directly (by an on-site tumor) or by a tumor elsewhere in the body (usually benign). In Beren’s case, this had caused his body and face to swell, his heart to race, his feeling of overwhelming exhaustion. He had developed Geiger-esque stretch marks all over his body; these were caused by the breakdown of his connective tissue.

But they couldn’t find the tumor. “He’s very young,” the doctors said. “We’d like to avoid an adrenalectomy if at all possible.”

The coma changed their mind, even though it only lasted about a week; they did the operation shortly thereafter. “And we’ve found a tumor in his liver,” they said in passing, but no one seemed to be able to tell us much more than that. We placed calls; we did internet searches. Finally there was a meeting with Beren’s doctors. “We originally thought that the tumors in his liver and lungs” – liver and lungs? – “were benign, but they appear to behave in a cancerous manner.”

“What does that mean, ‘in a cancerous manner’? Does he have cancer?”

I remember what I was like at eighteen, at nineteen, at twenty. I thought I was all grown up, for one thing, but when I look at pictures I was so young. Baby-faced and cynical, I was sure I knew how the world worked and even more sure that it was out to get me. My old poetry and journals make me want to laugh and give myself a hug. They read a lot like my brother’s poetry, my brother’s journals. “Wow,” I say. “I had no idea he wrote poetry.”

Good  poetry,” my sister says, flipping through.

His case was atypical all the way across the board. His age group and gender don’t get Cushing’s; if they do, the tumors are benign. The type of tumors the doctors found in my brother’s body are usually benign; in the few cases that they are malignant, they are almost always slow-spreading. “But in your brother’s case,” one of the doctors told us, “the tumors are spreading very quickly.”

We were all packed into a small exam room for this. My sister and I were sharing a chair. Beren seemed to rouse himself from his polite stupor (the questions in these meetings tended to come in a rapid-fire barrage from me or my sister) and looked at the doctor. “Can I do chemo?” he asked.

I was relieved. I thought he was going to ask if he was going to die.

Chemo did very little, except make him tired and sick.

You know what? I don’t want to be telling this story. Not like this; not in bullet points and succinct, synopsized morsels. I want to pull you over and show you pictures of him as a baby – look at that face, that smile. He was a fat little thing, always doing things at his own speed, like he knew something we didn’t. The morning after he was born my sister and I shuffled into the living room in our jammies and blankets to see my father lifting this chubby little baby into the air. The baby was laughing. Newborns don’t laugh but my brother did; I was there, I remember.

And I want you to hold his hands while he’s in the hospital bed, his hands that are the same size they always were even though his body is eating itself. Skin and bone; you don’t know what that means until you have seen someone who is dying. I put my fingers around his calf, below the knee, and I can touch my index finger to my thumb. He’s sort of semi-conscious at this point, on a constant oxycodone drip, and his conversations resemble nothing more than beat poems. “I need a table, here, something flat. Flat flat, flat flat. And when I have my table, when when, when when, then we can talk, then we can really talk” and you know he isn’t talking about a table, you know he means something else, but all you can do is nod and smooth his hair and try and get him to drink some water. He talks a lot about a girl – “She’s so sad, so sad, so sad.”

“He’s not alone,” my uncle tells us.

He grabs things; the bed, his catheter tube, people’s hair – so hold his hands, calm him down. He is so strong. How can he die if he is so strong? He says, “I don’t know how to do this.”

“Yes you do,” I tell him. “As soon as it’s the right time, you’ll know how.”

His cancer spread without any of us really noticing; least of all Beren. For several months after the chemo he felt fine. He joined the YMCA, he signed up for more classes at the junior college, he went camping with his friends and got high in the woods. “It’s weird,” he said, “since my adrenal glands were removed, caffeine and alcohol don’t affect me.”

“I’d have thought the caffeine, but the alcohol surprises me.”

“Yeah,” he said. “It’s weird.”

Nineteen years old, then. What is the concept of mortality to a nineteen-year-old? None of the doctors seemed willing to say anything about  how long – we were all functioning on the assumption that he was okay until he was not. Beren would tell us about the classes he was taking (he wanted to be a music teacher), about trips he was planning, about things he still had to do, and behind it all was this unspoken addendum: “if I have time.”

Timeline: he was diagnosed with cancer in April of 2001. He finished chemo that summer. He dated girls and toyed around with the idea of freezing some of his sperm. He called me sometimes, in the middle of the day, to ask me questions about his love life. “I think I want to get back together with Kate,” he said, and we talked about it -the reasons why, the reasons why not. There were parties, during which he kicked all our asses at every board game we played – if you were on Beren’s team, you won, it was as simple as that. No cheating – the kid just had an aura. And during one of the parties, in late January of 2002, Beren started complaining about a pain in his hip.

“Do you want to go to the ER?” my sister asked.

“I don’t know.” Wince. “I can’t decide. You decide for me.”

So we all packed into my sister’s car in our good clothes and hung out in the Emergency Room at Dominican for four hours. We were a blast, my sister and I – my boyfriend told me later that that was the most fun he’s ever had in the Emergency Room. I’d get my sister laughing and once she was gone everyone was; she’s got one of those laughs that you just can’t resist. Beren was in a lot of pain but we had him laughing, too, we had him distracted by what spazzes his sisters were. This was fine by us.

Finally the intern came in with his x-rays, and we clustered around while he showed us all these little spots all over Beren’s pelvic bone, all down his leg, and that was how we knew it had gotten into his bones.

You’d have to see him. You’d have to have a conversation with him to really understand, you’d have to see the way people just sort of gravitated toward him, all sorts of people. His friends are the most amazing kids I’ve ever met. They all hung out around his hospital bed, chatting with him, chatting with each other, watching Anime. His cell phone was always ringing, even after he stopped answering it.

I don’t know if it’s possible to sustain the kind of friendships you have in your early twenties into adulthood; I’d like to think so, but at some point real life has to intercede and you find yourself with all these phone numbers that you never call. But straight out of high school you think things are the way they’re going to be forever. It doesn’t occur to you that it could be any other way. Kate would come over almost every day after work and school, just so she could sit next to Beren’s bed and watch him sleep. It wouldn’t occur to her to go anywhere else.

My brother and his twisted sense of humor. Tripped out on painkillers, he’d open one eye and look at us when we’d be talking among ourselves about some strange thing (circus school, Billy Bob and Angelina, inversion tables) and say “What the hell?” in that slow, ironic way of his, and we’d crack up, same as we always did. He hated his oxygen tube and took it out whenever he thought no one would notice; one night not very long after the meds made his world into one long acid trip, he was talking to my sister and surreptitiously pulled the oxygen tube up and over his head. He started to drift off, so my sister reached over and put the tube back around his nose. He opened one eye. “Son of a bitch,” he said, and blinked at her. “You found it.”

I wasn’t there when he died; I was at home, watching Zoolander. My sister called me in tears and said “Beren’s gone” and I was pissed, fleetingly, because she couldn’t say the word “died”. I went over to the house and there were people everywhere; my uncle and my sister had dressed Beren up in his black suit with the smiley-face tie that he thought was so cool. His closest friends were there – Kate and Arturo, clinging to each other, laughing and crying. I looked at them and wondered if I’d have been that together at twenty if someone I loved had just died.

I wondered what it was like for him.

I wondered if he’d remember.

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