My brother Isaac was dying from the day he was born. Isn't that a lyric from a Lisa Loeb song? And aren't we all, technically, dying from the day we are born? I guess the connection is just more obvious for some than for others.
Isaac, for instance, was born with his heart backwards. A backwards heart is a problem for reasons that are perhaps not immediately obvious. The heart is designed to pump a lot of blood to the whole body from one chamber, which is bigger, and to pump a smaller amount of blood to the lungs from another chamber, which is smaller. The backwards heart gets this backwards. The smaller chamber, designed for pumping to the lungs, has to struggle to pump to the whole body and, with all the extra work, the days of the backwards heart are numbered.
Isaac had open heart surgery when he was two days old to put in a pacemaker. He spent so many hours under anaesthesia as a baby, he was left a little, as they say, slow. But what he lacked in smarts he made up for in humor and attitude. He was a pretty funny kid. A funny kid with a body criss-crossed by fine, white scar-lines, a whole atlas of surgical procedures and invasive interventions, mapped out on his skin for reference. At thirteen he had a heart transplant. At nineteen, he got lymphoma.
After all the different operations and medications and diagnoses and prognoses, it was something entirely random, almost anonymous, that killed him. Chemo was going really well and he was almost done with his treatments, but then his chemo port became infected. The infected port grew scar tissue all around it, which pressed into an artery. His body was painting him into corner after corner: he required blood thinners for his heart, but blood thinners prevented sugery to remove the infected port and scar tissue; he needed anti-rejection meds to keep his body from rejecting that imposter heart of his, but his doctor's discontinued them so his body could fight the infection; he could no longer recieve chemo treatments, but he still had lymphoma, and he still had an infected chemo port compressing an artery with scar tissue.
It was like he'd been blindfolded and left standing in the middle of an intersection. Buses were careening towards him from all directions, and we knew he was definitely going to get creamed, we just didn't know how long it would take the buses to arrive or which bus, precisely, would do the creaming. In fact, even now, five years later, nobody could tell you which of the bad things actually killed him, all we know is he's dead.
When his doctors closed their eyes and tried to invision a solution, all they saw was him standing in the intersection with all those buses bearing down on him, and they knew there was nothing they could do. That's when my dad and stepmother made the radical, beautiful, humane decision to bring him home. They didn't demand aggressive attempts to fix the giant mess his body had become. They just brought him home and let him have a peaceful last few months.
My dad took a leave of absence from work and I flew back east and stayed nearby. For the first couple months, Isaac didn't seem sick at all. He seemed like his usual, goofy self and I would watch him and think "no way, this kid's not dying, why the hell did I come back to Georgia and how long am I supposed to stay, waiting for this healthy kid to die? They've obviously made a mistake." We did whatever he wanted, every day. Which meant we went fishing a lot. And we went to a lot of yard sales and flea markets. I don't know why, but he loved wandering around yard sales and flea markets.
He seemed just fine until the last week. During that last week he did not seem fine at all. I remember most clearly the last day. He hadn't been keeping food down all week, but on the last day he lost the ability to keep down liquids. For every sip of gatoraid he took, he spit up a quart of mystery fluid. Where was all that fluid coming from? I sat with him on the front porch a few minutes, his last trip to the front porch, it turned out. It was the first time I'd been alone with him since he'd gotten really sick and I wasn't quite sure what to say. He just sat with a plastic tub in his lap to throw up in, and stared silently out across the valley into the distance.
I was awed, in that moment, to feel him already gone. As far as his eyes seemed to be looking, he was really looking only inside, drawing inward, attending to something far away from the world I was in, the consensus reality world of the porch, the trees, the valley. It wasn't that he was unconscious. It was that he was preoccupied with something more important and encompassing. I sat with him and looked into his eyes as he stared out across some unimaginable void, and death, for the first time, looked to me like a navigable passage. A voyage into uncharted territory that I would someday embark on with, hopefully, the same level of concentration and interest I seemed to see in his face.
He died the next morning. His last words, god bless him, were "I'm so thirsty." He died in a bed in the living room of his house, with his mom and his dad right there, holding him. Not such a bad way to go, if you have to go. He was twenty. The house filled up with people who milled around crying and looking at his body which had been arranged peacefully on the bed, waiting for the funeral home to come. The hospice nurse came and collected the narcotic meds he'd been on. We were all, probably, wishing she'd just leave a few for us, but she didn't.
My stepmother sat at his side, holding his hand, crying. I walked through over and over. I wanted to touch him, but I was afraid to feel him, growing cold, changing. I didn't want that to be my last tactile memory of him. I also didn't want it to be so public. The house was full of people I didn't even know, I have no idea where they came from or how they arrived so fast. I wanted just one minute alone with him, but I guess I'd had the most important minute alone with him the day before, on the porch, so I couldn't complain. Daddy sent me up to check on Alex, Isaac's twin. I found him sitting on the stairs, halfway to the top, in a pretty secluded spot. I sat next to him. I did what I could.
We had a viewing that evening. It was weird. My brother, I swear to god, was put into his coffin wearing a brand new, black, NASCAR t-shirt and holding a NASCAR ball cap over his belly. Add that one to the line of "you might be a redneck if..." jokes. Jesus. But that was his style, I guess. Alex, at least, had the decency to buy himself a suit for the occasion and guilted my dad into doing the same. I guess Daddy was planning just to wear his crispest pair of jeans before the intervention Alex's civilizing influence. We are mountain people, after all.
After the viewing I rode with my grandmother and cousins to the Huddle House and ate hashbrowns and gossiped to relieve some of the pressures of grief. I felt, for the first time since I was a kid, like I had a family who genuinely cared about me. It was nice, but not nice enough to keep me in Georgia for long. In a little over a month, I came back to Portland and that was that.
I hadn't been close to Isaac for a lot of reasons and I was shocked by how deeply his sickness and death affected me. Being there with him right on the cusp of his death was the most important thing I've ever done, the only thing in my life I wouldn't trade for anything. I learned so much from that experience, I couldn't begin to articulate it all. All I can say is that it changed the way I understand life, and it certainly expanded my understanding of death. Thank you, Isaac, for letting me sit with you as you gazed into the next places, and thanks for letting me see a little of it, reflected in your eyes.