Post-transplant day #480. Waking The Dead
Coming back to life has been a long haul. It is more than rehabbing the body; it also involves rehabbing one's life.
As I slowly deteriorated in the years before transplant, I had to cease activities that I loved, and felt like I was dying piece by piece; my corporeal death would merely be the last death of many. First I couldn't climb anymore. Then I couldn't motorcycle. I stopped writing for Thunder Press. I quit teaching at FIT. Then running became impossible, and finally cycling. It could have been worse: I could have gotten so weak that I couldn't walk anywhere or climb any stairs.
The transplant itself, while not uncomplicated, is a fairly straightforward event. A sort of K/T Boundary separating the Before from the After with a traumatic and (systemically) calamitous event.
Once the damage is done, the body slowly comes back to life and the mind follows. I have remarked in this journal before on some of the major milestones: My first night of good sleep, my first run, my first miles of cycling. Then, back in NY, my return to work, both design and tutoring; I picked up climbing again a couple of months ago, reveling in an unexpected strength and endurance, even if it's obvious I'm out of practice.
Last summer, I borrowed a buddy's Sportster 883 to participate in the Long Reach Long Riders ride. It was a brief return to motorcycling. Sort of a litmus test as to whether this was still for me. Was I still interested? Could I still handle the rigors of biking? It was obvious I was far weaker than I used to be and I think that contributed to my parking lot drop that caused my ankle injury.
But now, after another nine months of steadily growing stronger, I have brought home a new motorcycle, a Harley Davidson XL1200T. I feel I'm once again a biker.
Some of the neighbors don't like Harleys. They think they're unnecessarily loud. Strictly speaking, that's not true - from the factory they are fairly well muffled and have a comforting rumble. But most people change pipes or at least the mufflers in a bid for more power. They change the air cleaner and the EFI mapping, too; altogether a change known as the Stage I conversion. These pipes tend to be ... more open-throated. A wise biker chooses a pair of mufflers with a balance of power and silencing. I hope I chose well. I'm not trying to be a bad neighbor, honestly.
Now, my first bike had a name, which she earned after my first and only accident on that bike. "Roxie." (After the murderess Roxie Hart, of course.) Many people name their vehicles. Heck even my bicycles have names, which they whispered to me after a period of time.
I wasn't going to name this bike yet. Wanted to break her in and see what bubbled up. But something happened two days ago, when I signed the final paperwork at the dealership. I got to talking to my dealer about why I'd been gone from biking for so long and another dealer overheard me talking about my transplant. He asked what organs I'd gotten and said double lungs. He then asked a question most people don't usually get around to asking at Question #2: what was the underlying condition? I told him about my CF. Shortly after he brought a young saleswoman over from the merchandise side of the store, who introduced herself as Katie. She is young, owns her own Sportster...and has CF! We stood a respectable distance apart. She sees my old CF doc. And she is far, far from transplant. She could be my age or older before she'll need one.
But just meeting this young woman made me aware of the nerve-like connections throughout our two communities, CF and bikers. It is bucket-list material for a lot of transplanted CFers to get a Harley or get back on their old ones. And Katie and I had both been friends of Brian Jonson, who founded the CF Riders. Perhaps it is our burden to take up - we who are living on after him. We have a lot more to talk about in the coming months, but something about her reminded me of so many of the other fresh-faced CF youths. Those who you just want to reach out and hug and say "I'm so thankful you're alive!"
On the way home, I thought about that encounter and about the CFers I'd never be able to reach out and hug again. I looked in my little bag of goodies the dealership had given me and there was an angel's bell, given to me by my dealer. (You can't buy these for yourself.) "I'll certainly need an angel watching over me as I enter this next phase of life," I thought. And it became clear I had to name her after a CFer. The name of my new bike had suggested itself to me.
But dare I name a bike after a dead woman? I mean it as token of respect; a pledge to never forget. Some people get vinyl lettering put on their cars, trucks, or bikes for deceased family members, or get friends portraits airbrushed on their tanks or tattooed onto their skin. Isn't naming your bike for that person as basic a way of ensuring their immortality as any of those other rituals? After all, we name our KIDS after dead relatives; this could hardly be more creepy. Could it? Fuck it; I stopped worrying about it.
And so it is that yesterday afternoon I received delivery of my new baby, Ellie. This afternoon, Ellie and I will go for a long spin together, given decent weather. We will start to get to know each other. And if there are angels, I hope the real Ellie will be riding along, with her arms wrapped around my waist for safety.
Tonight I am reminded of the religion of the road; the hundred little practices and superstitions that bikers follow, hoping to ward off bad luck and bad weather. The blessing of the bikes. The prayer circle many groups engage in each morning before hitting the road. And I promise, to my donor, my friends, and my family, that my most reverential prayer for blessings and my most sincere promise to drive my safest will be encompassed each time I breathe my bike's name: "Ellie..."