Love, 2022
This is my annual letter to Mao-Lin and friends that I wrote and sent out in December, 2022. The accompanying playlist kicked off a habit of making playlists to accompany the major pieces of writing I do. I intend to have a "Story Behind the Playlist" series where those interested can go to read about the thought process behind the music choices.
The letter below remains as it was when I finished it, save changes made to protect private details about those around me. In places where I’ve made significant changes, I’ve added an Editor’s Note explaining the change.
Some of the events described below are traumatic in nature. Reader discretion is advised.
The story behind the creation of the Love, 2022 playlist can be found here.
December, 2022: As I start this letter, I dwell on the idea of hope. I have nothing but hope heading into 2023.
Last year’s letter was more impulse than planned. The thoughts swirled, they were written down. Page by page I let it all out. This year’s letter is a bit more planned out, insofar as I’m aiming for a more cohesive narrative than life dump. I reopened last year’s letter and added one more note at the top to close it out. I forgave my mother for her sins against me and Mao-Lin.
Where to begin. As with last year, these thoughts are “as is” with less focus on grammar/form and more focus on documenting my thoughts as they exist. I can hear Ken saying “that sentence would benefit from an Oxford comma.” Imma sprinkle in the occasional typo in his honor.
I got covid in March, a bad case of it at that. I’m not entirely sure where I got it or what came first. The Friday before tested positive I took a 10MG edible that sent me to the hospital, my heart rate had hit 165 BPM, my apple watch alerted me that I had been laying down for ten minutes with my heart rate above 150. Panic ensued. I called 911 - can you help me? I’m dying, I need help. I'm not ready to die. An ambulance is coming, I'll stay on the line until they arrive. I don't wanna die alone. An ambulance came, assured me I was going to live. I called 9-11 at 8pm and was discharged from the ER at 2am. My heart rate didn’t drop below 110BPM until 12:30am.
What came first - covid or the hospitalization? I don’t know. Maybe my brain was finally tired of the drugs I was pumping in it and something snapped, sending me to the hospital where I got covid. Maybe covid was already lurking in my body and this was the first warning shot that things were about to change. I don’t know. No one knows. More questions than answers.
I felt shame for the first hospital visit and didn’t tell Mao-Lin for four days. I was scared, didn’t know what to do. Still don’t know what to do.
I’ve been to the hospital four more times this year, each for a symptom that was scarier than the last. Mao-Lin has gone with me two of the times. One time I took a flight back from Colorado and had a hit of THC when I was home. Something about the combination of THC and stress and the flight made my body extremely vulnerable and I had what turned out to be a massive panic or anxiety attack. My body got this “pins and needles” feeling where it felt like my whole body was vibrating. I thought I was going to die. Mao-Lin called 9-11, help my boyfriend is having a heart attack. Ambulance arrived, assured me I would live. Imagine calling 9-11 because you think your boyfriend is having a heart attack?
Mao-Lin has been by my side through all of this. I love him for it.
Doctors aren’t taking me seriously, they tell me it’s in my head. I mean - yeah sure, some of this is in my head. The Kirby gene is slightly loco, you know? But not all of it. There are real things happening to me.
My symptoms ebb and flow, My world sometimes bounces.My chest will feel like its on fire. My body can’t regulate temperature properly. I can’t do intense cardio exercise cause my body can’t keep up. Biking? Maybe some day again, when I recover. My head and neck will feel like it's being said. On my second day at Disney, my head felt like a flamethrower was being taken to it and I had to drop off a work call.
This is a war I’m fighting on multiple fronts. Baebae - I’m not strong enough to keep going like this. Yes you are, you can’t give up. You’ve been through worse. I’m trying, I just need a break.
I just need a break.
The only reassurance I’ve had is Mao-Lin telling me everything is going to be ok and having me fight for myself. I found a support group for long covid patients, they maintain lists of doctors who understand what’s going on. I make appointments with specialists directly because I listen to my body. I remove doctors who dismiss me as crazy.
I have a PCP now who specializes in long covid. I have something called “dysautomnia”, which essentially means my neurological system is out of whack. It manifests as my body being extremely sensitive to being warm - running hot, as I say. I have a relatively mild case of it, it seems. Long covid also manifests as chronic fatigue - things my body could previously do (such as endurance cycling) are now clear and present dangers to my life. I have a battery each day that I can’t ever let completely drain, the battery life is based on nutrition and sleep. I’ve gotten pretty good at metering myself and avoiding situations that could become dangerous.
My long covid PCP ordered up a tilt table test, which confirmed I have POTS.I now have a beta blocker for the episodes where my heart races rapidly all of a sudden - my cardiologist didn’t take me seriously and wouldn’t prescribe me one but the long covid PCP heard the symptoms and immediately prescribed it to me. The American healthcare system has let me down in shocking ways this year but has also shown, if you find the right doctors and relentlessly advocate for yourself, you can get really good treatment.
There have been setbacks.
At the same time - I do occasionally grieve what I’ve lost. This is both natural and healthy - trauma requires acknowledging the totality of the pain so as to be able to confront it and manage it. I don’t let it consume me, but I do cry it out from time to time. Biking? Gone for now. Coffee? Severely reduced. Taking long walks? Maybe someday, but not today. Simply getting out of bed and walking to the kitchen can take the wind out of me on a bad day.
The psychological toll adds up.
My VP at Vizio was fired in July. Corporate machinations, game of thrones style shit. It landed like thunder. He hired me directly and a few others as well. We were all skeptical of Vizio but believed in him and his vision. The org was being dissolved.
Editor's note: I remain close friends with several of my former coworkers at Vizio.
The new VP pulled me into a 1:1 - your work is pointless, why have you been working on this? The business doesn’t care about any of this. The roadmap was decided by the business before I was hired, these were their priorities. I don’t care, none of this matters. Changes are coming, I hope you’re ready.
I called Mao-Lin - baebae, I might be fired, new VP doesn’t have confidence in me. The Juxtaposition, you know? A couple months prior I got exceeds on my performance review and was the only PM on the team to date who had pushed out an actual product the business could use. Was all of that really for naught? I was all of sudden hanging by a thread.
Panic consumed me. I have long covid, you know? What happens if I lose my insurance? How is Mao-Line supposed to handle his mother with parkinson’s and his boyfriend with long covid who might be out of a job? He handled the situation with tremendous grace. The whole thing is immensely unfair to him.
I lucked out - Disney reached out about a new job with them. The time that elapsed between my VP being fired and my signing a new offer letter was two weeks. As the fog has started to lift I can now see that the stress of it all did tremendous damage to me - my anxiety became out of control. Panic was raging. My body was rejecting medication. Good sleep eluded me.
The two days after I signed the offer letter I slept for 13 hours each night. Exhaustion was the end result. The fog on this whole experience only recently started to lift - the whole thing was traumatizing. It made my long covid worse in permanent ways. I will always resent Vizio for it.
Progress is being made. I retain immense hope.
There are no cures to any of what I’m experiencing, only symptom management and relief. I am blessed that I had really good health to begin with so I had a lot of slack to give, the fall was cushioned. I’m also blessed that a lot of symptoms people have are symptoms I’ve always had due to severe ADHD. I’ve always taken meticulous notes and written things down, otherwise I forget them. I had pretty strong structures for memory recall, which became important. The long covid experience isn't usually one of permanently forgetting, it's usually one of fog that impairs memory recall. I don’t really allow myself to be scheduled in a lot of back to back meetings as to ensure my brain gets rest during the day. I meter my energy and diligently don’t allow dangerous situations to develop.
I have a therapist I see regularly to discuss *gestures broadly in all directions*.
I go to acupuncture once a week, which has proven to be very helpful. I’ve started violin lessons. I’m not very good at it but that doesn’t matter. These things provide meaningful relief to my central nervous system. Calming the central nervous system is a key component of symptom management in my long covid experience.
Would I still be alive if I didn’t have Mao-Lin by my side? No, I don’t think so. I mean - physically I may still be alive. I would still exist - I’ve never, not once, had thoughts of ending my life. But my soul would be hollowed out,I wouldn’t be the same person. I would be broken, torn, shattered. Mao-Line gives me hope, he is a steadying force in a life that has been absolutely rocked. He remains my babushka, my shield. My patronus against the darkness. He remains one of the kindest and strongest people I’ve ever met.
I went to Mexico in early November for the wedding of a close friend of mine. It was the first time in a while that I had that friend group together, the ones that have been there for almost a decade now. Zach was there with his husband and Chris was there with his NO sunglasses and newly minted White House correspondent gig. Ken was the gurl-squirrelfriend of honor, marrying Erick. Mao-Lin wasn’t able to make it, he had a funeral to attend for the mother of one his closest friends. A subtle reminder that life keeps going in all directions at once.
After the wedding was a parade where you basically party in the street and takes shots of mezcal (for those who drink) or drink lots of water (for those of us battling a variety of health issues). It was beautiful in its simplicity - all of us there as friends to celebrate and show our love for our beloved Kenny Spaghetti.
As I’ve been writing this letter over the past few months I find myself returning to the same thought: hope. Despite everything I’ve been through this year I still retain a tremendous amount of hope headed into 2023. Yes, there have been some serious challenges this year and, yes, I’ve been brought to my knees on a few different occasions. At the same time I can’t help but feel good about the progress being made. I’ve done my level best to not give up, to keep on pushing. All I can do is continue to believe in myself and fight the good fight.
On October 10th I started tracking my progress in returning to the bike. On that day I was able to do 20 minutes at low power, covering 4.5 miles. I kept working at it and slowly that creeped up. On November 25th I did 90 minutes and covered 27.2 miles, inching me closer to my pre-covid fitness. I’m aiming to be able to do three hours on the spin bike (in 90 minute chunks with 30-40 miles of rest in between, similar to how I ride outdoors).
I remain immensely grateful for my core group of close friends, including AJ, Ken, Zach, and Chris. Words cannot describe how grateful I am for them. I can be a lot to handle as a friend (let’s be real, amirite?). They’ve never given up on me and have cheered my progress throughout the year. Someday when I’m back to full health we will all rage together again.
So once again I pause for a moment, I’m going to let all of this rest. In the name of the House of Kirby, the House of Shen, and the House we are building together, may these thoughts rest in peace. Amen.
“I believe in hope. I believe in Believe.”--Ted Lasso
Love,
–Kevin
