Death, The Blue Note, etc

Thinking on death, thinking on life.

February 3, 2024.

The hospital doctors seem pretty sure, when I tell them I’d like to join José on stage for a week at the Blue Note in April, that it’s impossible.

(They encourage me to focus on staying alive instead.)

And while the doctors’ priorities are likely better, I maintain my place on that stage as a carrot dangling directly ahead of my extremely swollen face. I’m not as ready as they are to pronounce myself dead or permanently ill just yet.

(Though I’m here in this hospital room for a reason, I’ll give the hand wringers that)

I have pleural effusions in both lungs.
My cholesterol levels are clocking in at a whopping 661 while my liver desperately tries to compensate for my failing kidneys.
I’m on a megadose of IV diuretics every 6 hours in a (failed) attempt to try and remove all my excess liquid. This poses a problem as my body has swollen to hilarious proportions thus rendering my legs too enormous to function.

It would all be comical if it weren’t so dire.

Thinking on death, thinking on life.

The weight gain of 45 pounds in two days is what ultimately spurs us to crash land into a Los Angeles ER at 5 am. The whole thing moves quickly, slowly, quickly.

An absolute masterclass in powerlessness.

It takes 9 hours to admit me. Everyone eventually agrees with my mega-smart-doctor-mom’s first thought (high five, pediatrician queen!) - a nephrotic syndrome diagnosis. Then the question becomes why I have nephrotic syndrome. Generally it’s brought on by something really serious, so they start checking for lupus, rheumatoid arthritis, a whole host of other things.

Thinking on death, thinking on life.

I let the medical professionals worry about what has caused my kidneys to throw their kidney-hands up in frustration (renal rebellion? biological blockade? lazy bean syndrome?). I’m more concerned with how long this bout of nephrotic syndrome has been around without my realizing. It seems clear it has been a least a few months.

(My body had to go full “we’re killing you” mode for me to get the message.)

I take a lot of my seconds in the hospital to think about that.

(Why, for example, was I unable to distinguish literal kidney failure fatigue from my normal life?)
(Why did I insist on working until the literal day I went into the hospital, furiously certain that my hands, too swollen to type, were “fine”?)
(Those questions, and the answers that I continue to find, are for another ttalk)
(But spoiler alert - one big one that I’d like to shake is that it appears I am more comfortable/alive in a crisis [woof!])
(I resolve to change this)

The whole thing moves quickly, slowly, quickly.

I become best friends with the nurses. The day to day doctors, though they’re doing their best, are not paying attention and are therefore making critical and dangerous mistakes. I decide to take matters into my own hands and become the self-appointed project manager of my team. Despite how ridiculous and on brand this sounds, it really helps my best-frond nurses.

(Plus, I figure, it’ll be a hilarious fucking tidbit for the inevitable ttalk I finally write, if I get out of this alive.)

Thinking on death, thinking on life.

And then I do get out of it alive. A ringer/genius nephrologist named Keith Klein gets called in on day 7. He has a wooden business card and zero nonsense tolerance. The whole thing moves quickly, slowly, quickly.

It turns out my case of nephrotic syndrome was not brought on by something permanent or serious. It was brought on my minimal change, a rare disease that almost exclusively affects children and is, miraculously, 100% curable. An absolutely fucking monster dose of prednisone leads to, in my second queen nephrologist Ann Moore’s own words, “the fastest recovery [she’s] ever seen in her career.”

My angel parents fly in to help with the transition. I learn that help is, indeed, a thing you can ask for. That it gets easier the more you do it.

And then, somehow, blown up by prednisone and with a whole lot less hair on her head, your girl is indeed in New York City for a week at the Blue Note.

April, 2024.

photo by Janette Beckman

Thinking on death, thinking on life.

Lorraine Massey, absolute living legend of curls, is cutting my hair today. Turns out we’re soulmates, a little bit. She cuts a small amount at first, but then I see the light go off in her eyes - she’s ready to make some art out of this whole thing.

It ends up way shorter than I anticipated. I have my usual haircut panic, but then I remember that I’ll likely love it the next day (accurate!). I thank her. I hug her. Add her to the guest list for the show.

Thinking on death, thinking on life.

Every night of this residency at the Blue Note feels like the miracle that it is. I am exhausted and I am excited and I am so very conscious of what life is and can be.

Thinking on death, thinking on life.

On one of the nights Casey Benjamin’s brother comes. Casey’s early and unexpected death has shaken José and me to our core.

Kevin and Casey were twins. You can feel Kevin’s grief, but you can also see Casey in his face. They have the same face. And he glows, even in grief, with the same spirit. 

Thinking on death, thinking on life.

I take my prednisone every morning. Down to 20 milligrams now. It goes down easier, I’ve found, with dragonfruit. A yellow magnificence Tete introduced me to just before it all took a turn for the better. 

Thinking on death, thinking on life.

For our final night at the Blue Note I put a white wide brimmed stetson over Lorraine’s handiwork. 

We fly over the Manhattan Bridge. The train obscures the skyline view that used to be my everything.

(I used to define my literal self from those craggy building shapes)
(A major lesson from the hospital is that my soul is whole and unique and not defined by other people, my career, my art, the town I live in)

Thinking on death, thinking on life.

José is asleep in the seat next to me.

(I used to define my literal self from our partnership)
(A major lesson from the hospital is that my soul is whole and unique and not defined by a partnership)
(Though I remain ridiculously grateful for that man)

Thinking on death, thinking on life.

We pull off the bridge onto Canal.
My ghost, my shadow on every inch of these blocks.

I’ve ceased chasing shadows, at least for now.

I thank these streets, the week, every person who bought a ticket, helped breathe life back into this body. This body that remains alive, that has stared down death two times in 365 days. I wear a Kapitol skeleton dress just to really drive the point home for myself.

Photo by France Mayori

Sometimes I catch a glimpse of my reflection in the Blue Note mirrors and every time the reminder is sweet.

I am alive.
And it is so very good to be so.

More soon.
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