Today Ronan is alive. Given the amount of days he has to live, this is no small thing. He ate coconut yogurt, prunes and bananas, spinach and potatoes. He took two naps. He bounced in his exer-saucer. He played with his favorite toys. He pooped and peed and had a bath. He was ferociously snuggled. He reached for things, he put his hands together, he giggled. He fussed and whined when he was tired. He stared, mesmerized, at the Dr. Who toy from Ryann and batted at his Fishy Tales book. He touched the sweet petals of a lilac bush and the branches of the prickly evergreen tree in my parents’ backyard. At the end of the day, squirmy and grumpy, he was walked around on a shoulder. This was his day of living in this world, right now. One more alive day, and also another day closer to death. We cannot have one without the other, although we are constantly fueled and even motivated by the delusion that we can.
An “alive day” is the anniversary of a close brush with death, and the internet lights up with these stories around Memorial Day. Alive day: an opportunity for the living person to celebrate the fact that the date in question is not the one carved into a tombstone or noted on their Wikipedia bio or in an official military letter to their loved ones. Soldiers have been celebrating alive days since the Vietnam War, and perhaps for decades before that. Celebrations of life-in-death and death-in-life. Truly as ancient as war. A chance to celebrate that an individual has not yet been snatched from this world as we know it, has not yet staggered into the world of “what’s next,” whatever that world may be. Not today, not yet.
Memorial Day makes me think about the kids who have died this year and in previous years of Tay-Sachs and other shitty metabolic disorders. As the car lots and department stores advertise their weekend sales events I think about the kids and babies who will die this year, a group that may or may not include Ronan, the new babies who will be diagnosed, and what those parents will go through, that terrible pre-mourning for an inevitable death. The burden of knowing what will happen (although not necessarily in what order) and knowing you will be there to witness it: a kind of death experience, no doubt. Make no mistake: fighting these diseases is a battle all its own and there is no “fighting back”; there is no “overcomer” narrative to cling to. The cause has no celebrity spokespeople, and the disease is so rare that it’s hard to attract attention for funding, or sometimes any attention at all. Insurance companies throw hissy fits over requests for “special needs” kids (yet another dubious distinction in this category-happy world). Self-identified “well-meaning” individuals, whatever that means, ask inappropriate questions and openly stare at affected kids. For parents like myself, every day is an Alive Day with my kid, and built into that celebration is the dark shade of a future Mourning Day. Not a war exactly, but a fight nonetheless, and believe me, we parents feel battle-scarred. The constant push-pull: here but not for long; what will come next? Why is this happening to my child? Why is this happening to me?
When I was growing up, the only amputees I knew were Vietnam veterans. I did not fully understand war (my notion of it could be summed up by the David and Goliath story and the infamous slingshot; this was decades before the video games that attempt to so precisely mimic war). In the prosthetist’s office, a smelly, dirty, dusty place full of outdated magazines and overflowing ashtrays and weird receptionists who flirted with the odd, pale-faced prosthetist who always gave me the creeps, I would sit next to the vets and ask them about their tattoos of red dragons breathing blue fire, busty ladies riding missiles, trails of Latin words snaking around their upper arms. I liked to hold the ashtray when they were ready to ash their cigarettes; this seemed like a very important role. It made me feel like a stewardess, which was what I wanted to be when I grew up (this was before we called them flight attendants). One of the vets once said to me: “I don’t know why I’m alive.” At the time it made little sense to me: he was alive because he was alive. Why not? But now I hear the darker, more tortured question in that statement: why me?
I liked the vets because they understood that the world was a dangerous place, even a terrible place at times, and that people could be irrevocably changed, hurt, and altered. Bodies and minds could be wrecked; lives could be ruined. I sensed this without being able to articulate it or fully understand it. I could only adore these guys in my exuberant, childish, black-and-white way. I didn’t know (and still don’t) what it’s like to go to war, but I did know physical fear and danger, and I felt I understood, in my young girl way, their wounds, their stories, their fear and their hope. I remember their sad faces and the spectacularly dirty jokes they told while my parents were occupied with paying some astronomical bill or discussing some new leg part or treatment with the prosthetist. And I liked the vets, quite simply, because they also had wooden legs, and although a six-year-old girl and a 40-something vet might have very little in common, that was enough to bind us. I wanted to hear their stories; it wasn’t until much later that I learned that many others did not. These were the vets who were shunned, ignored, and outcast; vets without the Wounded Warrior project, without support and websites, without a government that was eager to recognize their sacrifices.
In the 1990s, I started to meet men who, at the time, were my age and coming back from the Gulf War. I found myself sitting in a cast or a boot or in the first shape of a new leg with its exposed metal calf, looking at some buff, super hot guy sitting across from me with the identical, Terminator-ish contraption on his leg. For a teenage girl, this situation was massively awkward. I burrowed into whatever book I was reading and attempted to make myself invisible.
Today, in 2011, I meet vets who are 30, 25, sometimes as young as 19. Women and men who are being fitted for legs and arms, braces and hands. A few months ago I met a guy who was practicing walking in his two new legs because he wanted to walk down the aisle at his wedding. “After that I’m chucking them,” he said. “But I want to stand up when I say ‘I do.’” All of these veterans have alive stories too unique to enumerate here, but suffice it to say that the narratives are powerful, and largely unheard, although this country makes a big dog-and-pony show about Memorial Day. Stores are plastered in American flags, the president makes a speech, people truck up to graves to place flowers. But what about those Alive Day stories? I’d like to hear more of them, not so much to exalt bravery or fortitude, although that’s certainly appropriate, but just to hear the stories, just to know them. What I’m learning from other Tay-Sachs parents is that the listening is what’s important. Listening and witnessing.
Driving to Wyoming with Ronan in the backseat batting at his Websies toy, I saw something incredible. I’ve seen a lot of weather in my life, but nothing quite like this: a sheet of dust moving both vertically and horizontally across the road, like a wave of heat but grainier and more textured and complicated. I held tight to the steering wheel to keep the car steady in the turbulent wind. Tumbleweeds became speedweeds, thorny rockets scraping across the windshield. A thick bank of gray-black clouds hung low in the sky like a platform, and above and below it stretched an expanse of bright blue sky polka-dotted with sweet round clouds. Windmills looked frantic, spinning so fast they looked like they might fly into the air. The sky was red-gold and slightly apocalyptic. But Ronan and I were alive in it, together, the two of us, speeding down the road, headed straight through the dust and into the oncoming rain storm. And on that day we rode through the storm to find sun streaming from the sky as strong as any downpour and the clear outlines of the mountains in the distance, some of the peaks still capped with snow.
Someday I’ll be alone on that road, but on that day we were alive together, and for now, on this day, today, we still are.