The Dress Rehearsal
Nine days ago, my gastroparesis caused a vomiting episode that lasted for four days. It felt like a meat grinder had materialized in my gut, turning everything into mush and then expelling it, all while serving up pain that had me doubled over and whimpering. I was home and I could not stop vomiting. My blood sugars were so high even though I was dumping an insanely expensive amount of insulin into my body! Honestly, it was almost impressive, the lengths my body went to destroy me. By the time I'd waved the red flag (I peed on a strip and I was spilling ketones, which is bad) and arrived at one of the seven layers of Hell, the Emergency Department, I was in big trouble. My body was no longer using food to burn energy; instead, it was using body fat. (Take it, I say!) I was prone to shock, seizures. My limbs were thrashing wildly from an electrolyte imbalance; I had my dad to hold my knees down so I wouldn't jerk around was much as they searched for a vein.
That part was particularly brutal: finding a vein. Over the last 37 years, my veins have been open to the public. They are tiny and they are sclerosed and scarred. And after vomiting for a couple of days, they were also invisible. And I was there, hunched over in the bed vomiting, crying because of the misery and because I could literally see the drugs, the labels on the bags of fluids, anti emetics and pain meds. And yet I couldn't get it! The frustration and annoyance made me shake with rage. I cried, and then I, a famously gay and decent heathen, raged at God. And then I begged him to stop this. And then I cried.
The doctors soon realized that my body was going into diabetic ketoacidosis, a highly dangerous condition that kills thousands of diabetics yearly. I’d been saying this since I came in but they were finally sure of it after seeing my labs. (A lot of these deaths are from insulin rationing, which diabetics do to save money by getting insulin less frequently. To which I say: #insulin4all.) I was brought to the ICU, where for the next few days, I was monitored on an insulin drip, with constant infusions of magnesium, potassium & saline. I was hooked up to a heart monitor and I had an ever present blood pressure cuff that went off every 30 minutes (which was fun when I was trying to sleep!) I have never in my life been so connected to that many tubes and wires. It made going to the bathroom nearly impossible. When my mom was there during the day (kicking ass and taking names, I must add), she would expertly unhook me without tangling me up. When I did it alone, I resembled the world’s largest rubber band ball; just a mess of wires, all connected, and all seemingly trying to strangle me. My nurse was fucking PISSED every time this happened but I mean…answer your call bell, friend. I see you standing outside the nurses station on your phone there, bud. And so since I was a freakin mess, I was told to pee my pants; those who have given birth reading this will know about a catheter, but there’s this newfangled contraption that basically vacuums your pee as soon as you let go. I was horrified by this because...well, I had stage fright trying to pee in front of all the nurses. Not just in my room but across the hall in the nurses’ station (who see this every day and weren’t even looking, but my crazy mind couldn’t comprehend that!) I couldn't pee, and I was too weak to walk to the toilet; plus my ball of wires had me leashed to the bed. And so they set up a commode next to my bed. My room was directly in front of the nurses station; the sliding doors in and out of the room did come with a curtain that I insisted on for my dignity. It was rarely used after that first pee. I no longer gave a fuck because I had accepted that I felt and looked like an extremely sick person—which I was, something I was reminded of as the funeral home came to pick up my next door neighbor a few hours into my stay.
The nausea and insanely high blood pressures did not abate until nearly the end of my stay.(Which was unfortunate, as I am a bit devoted to the hospital jello.)
After a few hours of misery, not only in the ICU but earlier in the emergency department, my brain and thoughts began to feel different…not compromised, but exceedingly weak and at a loss for why we insist on resilience.
For some reason, when I am in that deep, vomiting state, my brain hyper focuses on something that's going on and it will not let go. Like my dog Pete with a pork chop, the subject will not be dropped. And so I obsessed over the recent death of an old friend’s father. I thought about how he died and why, and I thought about who he'd left behind. And then I thought about my own death and how in this moment of great, interminable misery, I would be extremely tempted to take it if offered to me. This, from a person who almost had "keep going" labeled on themselves via tattoo not 5 weeks ago.
This scared me. This was a misery I'd faced before but it somehow seemed worse this time. I was coming to realize that my resilience is not a renewable source. I have been resilient for so long that even typing that word makes me itch. Resilient. Ugh, I imagine my body thinking. Yeah, I used to fuck with resilience but now we are ships in the night. I'd lost it over too many hospitalizations. Hell, I had the right to lose it based on my every day pain, which is overwhelming and clouds my joy. But I was mostly thinking of the moment I was in, the sound of another ultrasound machine rolling in so that the ICU nurses could try to find a vein to place an IV in. It’s not as if the placement of an IV was very painful, but it was invasive, and it has become a huge issue whenever I am inpatient.
Keep going, keep going, I always chant. But I'm starting to wonder if maybe that should no longer be my signature phrase given to all who message me. Maybe it should be “you’ve fought long and hard and it’s okay to take a break, or to let go.” This current positive spin branding places too much pressure on the patient, especially the younger set. For those who are suffering beyond what a normal person can fathom (and this includes me!) this strict adherence to positive thinking and finding the bright side can be damaging, because you feel guilty for not appreciating life. Because let me tell you, there’s not a single bright side to throwing up for four days with severe chest pain because your blood pressure is 200/100. (Well, except for my mom to activate beast mode and get shit done.) No bright spot in waking every single morning in pain and knowing that the disease is progressing, and realizing that the good days are going to be less and less as time goes on. But I still enjoy the hell out do those days.
I am sure that absolutely no one wants to hear that it sounds like I am giving up, right before the biggest test of my life. But, and let me be very clear, I’m NOT! This is not about giving up; rather it's about letting go of searching for a positive spin for this misery; it’s about telling myself to keep going when I cry just from moving some days; it’s just me examining a mantra that no longer rings true to me, all of the time.
I have decided that I don't need to hear keep going, because I already have decided to keep going. No matter what. By the act of embarking upon transplant right after this experience, I am, in fact, keeping going. But I wouldn't blame myself or anyone else who had been fighting for their lives and then had to experience days like the ones I had last week and decided to stop fighting, to let go of the fight because it’s not a life, to live like that. Peeing without a curtain. Weeping because the nausea has taken a hold of you and you are not yourself, just a body in extreme distress. My mom said she’d never seen me so out of it, so restless with pain and vomiting and nausea and I wasnt’ on drugs or anything; I had just been taken hostage by my disease. And I kept going, for me, because I felt that that was the right decision for me. But quitting “keep going” is not the same as giving up. It’s just stopping what doesn’t work for you anymore. Because as my girl Mary O, these are our one wild and precious lives.
Last week one of the girls was upset. She said I always promised to do something with them and I don’t go. It broke my heart, crushed it, pulverized it. It’s true though! Let’s face it: I make our family vacations way more fun. But in the past year, I have declined. I spike high fevers at night; I had covid for four weeks. I missed their entire basketball season. I missed our annual Presidents Day trip to Cape May. And that particular day, they’d been over for hours and I no longer had the energy to take them to the mall. And it bothered and possibly angered her; I walked in on the conversation and she asked me directly and I couldn’t answer well in the moment. I freakin’ choked. Fortunately, Kristie is their mom.
A few days later, I tried to explain to them that for me, doing something is always hard, always painful and when I'm with them, always worth it. And they don’t have to feel guilty for wanting me around more when I’m sick. It’s hard on them. They are 7 and 10, and it’s hard to explain this disease. I have been an extremely active part of their entire life and they will miss me. Adelaide in particular focused on 100 days. The 100th seems so far, like school’s 100 days. They know I’m going to look different but Sadie still insists on visiting me. In this instance, “keep going” is vital as it reminds me of the joy I experience with the kids and how I want more. Sure, it led to pain and fatigue but goddammit I’d do it again.
But maybe, if I become a therapist for sick people after this, I'll stop imploring them to “keep going” is the best option. And if you can summon the strength to read past “death”, please consider this subjective perspective here: it's not dark to think that you can stop; it's dark to suffer and plaster on a smiling face in your hospital bed and sing "keep going, life's worth itttttttt" to your nurse while you chug down a pharmacy's worth of pills. (I def never did this.)
I'm no longer trying to go into this transplant (approximately four weeks away) as strong as possible; I’ve droppped the try. I am going into transplant as strong and positive as fucking possible. Yeah, it's fair to say that 2 weeks knocked me down and out. But now it's Monday and I’m in the car on my way to Sloan and I have the biggest smile on my face because of how well I was loved last week; I saw friends, I tilted my face to the sky, I embraced hugs for the first time for my entire life. (Barf.) (Hugs are amazing, why have I held back for years?)
Just being around family filled my cup. Staring at my mom with awe for her amazing advocacy; she saved my life. My dad, steadfast, keeping everything running. My sister, who knows exactly what I need and when. And I’ll get to see Gregory and Nikki next week and the simple act of listening to music, bringing Pete to the park and getting coffee making me so damn happy. And man oh man, those freaking kids. We can be doing nothing and yet they delight me with their idiosyncrasies. Sadie and I bonding over me teaching her a skincare routine and the Babysitter Clubs Books (Can you hear my squeal of delight from there?0. Adelaide and I being Adelaide and I. And Leo, and his magic; his haircut and Air Jordans and his new alter ergo Jongo…I’m shaking my head and laughing at this new development. But just the normal nights I go to Red’s for dinner; the girls and their giggles as I showed them the Princess Diaries and they hooted at Anne Hathaway telling Mary Poppins to "shut. up.".
And my sister and friends and family is enough, right now, for this moment in time, to keep going. I am sure in a month I'll have absolutely horrific time where I want to die. And Kristie will intrinsically know the exact moment that happens and she'll send me a video of Leo and save me. My life is about to turn to complete and utter shit, but despite all of it, I promise to keep going.
Talk more soon. Please share, subscribe, and like. Love you all.
Also if you hear of a sublet on the UES from April to August, holller.