Illustration by Shino Arihara

In the beginning, I only knew that a kid was sick. It was like one of those tragic but instructively hopeful stories that often appear in the Los Angeles Times’ Southern California Living section at around a thousand words, about somebody dealt a rotten hand by life and somehow turning it into a royal flush. Here’s the first of mine: My younger sister has this secretary who has this nephew who’s had a brain tumor since he was 6. He was given six months to live back in 1998 by every neurosurgeon he saw except Keith Black, a pioneering brain-tumor researcher who gave this kid a reprieve he wasn’t supposed to have. Dr. Black was a miracle worker, this then-13-year-old his latest and most deserving miracle: The teenager and his mother lived rather meagerly on the Chemehuevi reservation near Lake Havasu on the California-Arizona border, and after the mother contacted Dr. Black as a last resort, the doctor not only agreed to perform the surgery, he did it for free. I hoped that would be the end of the story.

But there was more. Over the months and then years, my sister, through her secretary, Juliana, reported complications and subsequent poor recoveries in hospitals where the nephew was alone and too often unattended. Steroid treatments were blowing him up, and he had gone completely blind. This past year, Vincent had grown another tumor, this time on the brain stem, and a local cadre of surgeons had decided not to operate. Keith Black had decided the same thing. Vincent sang to himself to keep up his spirits. He wanted to go to school, but the isolation of the reservation and a lack of money made things difficult. Juliana visited him faithfully, bringing homemade tamales or zucchini bread or other things her sister Hope, the boy’s mother, might be able to sell on the reservation. She brought extra money if she had it. My sister and I went from feeling deeply, helplessly sorry to being outraged about the whole thing. The wild injustice of the tumor became, by tacit agreement, our story. Our initial mist of mutual concern about a likely newspaper clipping quickly condensed into a name — Vincent Hinman — and a presence that assumed a regular place in our daily exchanges about the world and the people we knew. We both became soundly vested in the terrifying fortunes of someone we had never met.

I didn’t exactly want to be. As much as I began to care about Vincent, the dogging shadows of decay and the insuperability of death always scared me if I thought too intently about either. Vincent gave close and uncomfortable measure to my constant but deliberately muddy contemplation of disease and how it waylays a life so simply and completely, without permission. Disease to me was terrorism in its purest form — unsuspected and catastrophic, random but precise once it settles onto a chosen target, impossible to prevent or predict or sidestep. It is also the dark alter ego of life, what happens when life hiccups and slips past all the regulating cells and yards of blood vessels and just-so coils of intestine and myelin sheaths and antibodies and immune-system checks and balances that make life possible, and miraculous, and eminently dangerous. I wanted to know that one could be close by death and keep sane; I needed assurance from Vincent that death didn’t drive life out of the house before life had finished its stay. He must know: Here he was living with death underfoot, in the sighs and squeaks of the wheelchair he was eventually forced into as his motor skills started going in slow but sure degrees.

But he also lived as much as struggled. He made and sold baskets and such, ribbed his mother mercilessly, had a ’70s-themed party for his 16th birthday and danced because he loved vintage R&B music. When I met Juliana a couple of months ago, at a lunch my sister arranged, she told me that, in the middle of all attempts to treat his most recent tumor, Vincent had made a decision himself. He had told his aunt, who was preparing for another visit, that he wanted her to donate whatever extra money she was bringing them this time to her local firefighters, in his name; he wanted to do his part for the 9/11 disaster-relief effort. Juliana did, explaining the history of the modest offering to the firefighters before handing it over. They were so stirred by the gesture they turned around and raised money for Vincent.

I wrote to Hope explaining I was the older sister of her sister’s boss, that I’d been hearing about Vincent for a long time now. I sent along some old-school soul CDs for Vincent as a gift. A couple of weeks later, Hope wrote back, in a letter that ended with a small paragraph dictated to her by Vincent. It read, in part: Thank you for your prayers. Though I have a tumor I’m okay most of the time. I’m kinda scared but I’d like to have another operation if it’s going to make me better. I don’t worry because I have a lot of faith. I look forward to meeting you. Sincerely, Vincent.

I carried that letter from one purse to another, like a talisman, until it was dog-eared. Hope had included her number in the letter, and we talked on the phone for about half an hour before we agreed to meet the following week, in Loma Linda, about halfway between Lake Havasu and L.A.; she and Vincent had an appointment at the hospital there, and they could meet me at a Motel 6. I was thrilled and instantly nervous. Hope went on to say that even though Vincent was pretty doped up — he was getting terrible headaches again and taking painkillers — she could put him on the phone before we hung up. “His memory is getting so bad,” Hope said, “so don’t worry if he doesn’t know who you are. But he remembers things a long time ago like they were yesterday.” Vincent came on the phone; his voice was resonant but soft, and polite, and worn out. He said “thank you” a lot. I constructed our very brief conversation so that he would have to answer only yes or no, which he did: You feel okay? Yes. Did you like the music I sent? Yes, thank you. It’ll be great to meet you. Yes. “I’ll see you next week then,” I said after a minute or so. “See you,” he echoed, dreamy, and as Hope and I talked a little more, he lapsed into sleep.

We were to meet on Thursday. The Sunday before, in the late afternoon, the phone rang. It was my sister. She could hardly talk or gather words. In a tiny, teary voice, she said that she’d just spoken to Juliana. Vincent had died. What? I felt robbed, violated, left standing in a cold wind wearing nothing; I sat heavily on my bed, more distraught than I’d been for family members who had died that I’d known better, and much longer, than Vincent. I had seen his passing, felt it, like I hadn’t felt theirs. The world seemed less to me because Vincent, as far as I knew, had left it. He was no longer part of its computations, or of mine. I thought I might at least feel unburdened, off the hook, but I only felt as keen a pain for his absence as I had for his suffering. He’d been left behind, and I couldn’t go back and get him, and the story my sister and I had so artfully set up and set stock in — we never considered death out loud — didn’t matter anymore. It never had. Vincent allowed me to fantasize that I had some moral influence over death and destiny, that because I had lived cleanly and didn’t take drugs and kept in touch with my sister and drove the speed limit and washed my hair every other day, he would recover. Vincent’s fate became the fate of what I believed about fate, his health an answer to my increasingly strained little hubris about the healing powers of good cream rinse and paid bills. Now Vincent was dead, and I didn’t quite know what I was or where I stood. A small bit of my indignation about his demise was actually petulance — Christ, he’d let me down.

My sister and I left on Friday afternoon for Needles, where Hope was having a wake for Vincent at a mortuary, from 4 to 8. I drove; we battled pre-weekend Southland traffic deep into the Inland Empire, and made it to the mortuary with only about 20 minutes to spare. I met Vincent on a Friday night in his casket, a big chubby-cheeked boy with straight dark hair, dressed in a brown suit and tie. He looked like he had sounded over the phone, mild and asleep. His hands were folded over a dried gourd that Hope explained was the Chemehuevi symbol of warriorhood. We stood close together, admiring, in the soft late evening and disquieting emptiness of the desert.

LA Weekly