Welcome Back, I'm Dying, JK, Welcome Back
Welcome and goodnight. That’s how I wanted to start and end this new project.
I haven’t written in a couple of years. I wrote a piece for a class a couple of years ago but mostly I have been silent, suffering, getting worse.
You’d think being a writer would be a perfect gig for someone who can’t get out of bed. And it’s true that this laptop also served its actual purpose once or twice. But usually, it’s where I put the soup when I eat dinner in bed. (I advise against this.)
I can’t believe it’s been years since I’ve done this. I guess I felt that the interesting part of my life died when I had to move back to NJ in June 2015. I had just undergone a wicked hospitalization at UCLA in Santa Monica and I could barely walk upon discharge; the virus and then the corresponding DKA took any independent life I had curated and crushed it to fine dust. My mom had to pack up my room in Claire’s house; the hospital was next door to a consignment store. It was closed. We left a huge suitcase full of clothes at its doorsteps and headed for the airport.
And that was 6 years ago. And there was never another apartment. I deferred grad school. I turned down the place I’d found a block from the ocean in Venice. I practiced saying things like "I live in New Jersey now."
And in the last six years, there has been so much joy watching Sadie, Adelaide, and Leo come into this world and then learn to manage it in their own way. (Usually by sheer force of cuteness or in Adelaide's case, intricate pre-planned arguments over daily necessities. Like making up a protest song about yogurt the night before you'll be forced to eat it for breakfast. She was not yet 2 when "I Mixin' My Yogurt But I Not Gonna Eat It" hit airwaves in Interlaken) I have also become a monthly visiting patient to the National Institutes of Health in DC. And my aunt Mary Ellen died, young and beautiful, and it broke my heart losing her. Watching everyone lose her too broke it in a different way. Oh, and Trump got elected, and the world exploded, and women’s and queer rights were diminished, and I came out as queer non-binary, and Black Lives Matter, and I cut my hair, and I stopped being a fan of Hanson because Zac’s a racist transphobe, and trans people were killed and oh, there was/is a fucking pandemic (!!!), so yeah, I guess I had to stop writing because life stopped being interesting.
But I’m back and I promise to not let the second letter be an excuse for why I haven’t written. It's very simple and I can say it now:
I got sicker and it killed me. I got sicker and I almost didn’t survive. That’s why I didn’t write. It’s why I don’t know if I can write now.
Sometimes I worry I am in my twilight years. The day ends before 7 again. Another summer has passed. How many more do I get?
We will try for more time in January. We will try to do a bone marrow transplant and we will try it knowing there’s a good chance that it will kill me, the trying. I can’t even type that without taking a very deep breath first and then wincing because it hurts my chest to breathe deeply and it has for years and I never really ask why. Because everything hurts all the time. And being awake is often a hellish experience. And you're supposed to be the perfect patient who eats perfectly and doesn't ask for IV pain meds and never makes the nurse feel uncomfortable for asking if they're vaccinated. I'm far from the perfect patient, so I'll be writing a lot about that.
It’s been years, welcome back. It’ll be a little darker this time. It’ll be a little more honest. Forgive me. It’s been awhile. It’ll get better. Thanks for coming back. Seriously: welcome back.
xo
kpb