Survival in The Stuff That's Not Interesting But Is The Most Interesting Stuff I'll Write

There was one question that hung in my head in the middle of the night: Why am I doing this? My initial reason for going to Thailand doesn’t exist anymore yet here I am still chugging ahead. Why?

This question has been lingering over my head for the past few months, ever since I started getting my treatment and responding miraculously. For the first time in my entire life, I have hardly any symptoms, which frankly are rather nebulous to begin with. My disease is one of those things where you don’t really see any symptoms until they start accumulating, and then you realize a completely different person exists in place of the one that was there before.

My disease has hung over head, like the sword of Damocles, since I was born. I’ve never been normal. I’ve never had to not think about is what I’m eating right now going to make me sick. It’s exhausting. But as I went off treatment for my disease in the 1990s (at the behest of my doctor), I still wasn’t normal because that’s when I was coming to terms with my sexuality. Unfortunately, my disease had left my body weak and somewhat frail… no matter what I did, I could not gain muscle. I didn’t consume enough protein to make any difference at all. It didn’t change much, I had the same weight for 18 years.

Only in the last couple of months has my body drastically changed. My arms and legs have gotten thicker. Apparently a side effect of my PKU is that my body stops producing melanin, so now I’ve actually tanned and my hair has gotten darker (I’m not naive enough to believe that all my grey hair is a product of my disease, but even a lot of that has gone away). My body has almost restarted.

Then let’s talk about the other half of this coin. I was fortunate enough to not have any learning impairments which so many people with my disease end up getting, so the belief of my doctors was that I was fine. This was the ultimate reason I was told to cease my treatment. However, they hadn’t quite figured out the emotional side effects.

I always dismissed it as part of my anxiety about being gay. Coming to terms with your sexuality in the latter half of the 1990s was a very strange and complex experience. Either I was expected to be a character in The Birdcage or some kind of sexual predator… I found someone who helped ease my anxiety (although the truth of the matter is, I was still very anxious and depressed throughout that relationship, always wondering what he saw in me, I feel sure that had he not died, that would have driven us to split eventually). When Joe passed away, I didn’t know how to deal with that.

I also didn’t know how relationships worked. I didn’t have any real friends when I was younger. My mother had remained unmarried until I was in junior high school, and although my grandparents had a stable marriage, they were old and pious, which were very not relatable to a gay teen boy obsessed with 90s alternative rock.

My emotions were all over the place. I couldn’t control them. Doctors were misdiagnosing me like crazy. Because of my shakes (my one physical symptom that started when I was about 14) one doctor was convinced I had early on-set Parkinson’s disease. Another doctor thought I had Epstein-Barr or a form of Chronic Fatigue Syndrome. One thought I was bipolar. Another thought I had a mild form of schizophrenia and wanted to put me on drugs.

In 2003, when I was 19, I was doing a play in front of the largest audience I’ve ever played (3,000 people per show), and I was so sick that when a dance number ended, I collapsed on the ground and had to be carried off the stage by the cast. It was at that point, I said fuck these doctors, I’m doing this myself, they have no idea what they’re talking about.

And I did fine for a few years, mainly because I couldn’t recognize how sick I was getting. I was always told to look for severe lapses in memory or spasms more severe than the ones I’d been having for years. No one told me about depression or anxiety, those didn’t exist in the 1990s, and doctors for my disease stopped treating patients after they turned 18, believing they were past the point where it affect their lives. (Apparently, 2009 is when they reversed that decision, but I’d already been far removed from the medical establishment by then).

I had no real relationships, only surface-level friendships (it was a big revelation to discover that Richard, who I always considered my best friend, only considers me his “longest-known” friend because we were “never that close”). But that’s the truth. I’m not mad about it. I developed a pattern of behavior based on my rising anxiety, depression, and layers of trauma.

That’s why, when I went to Los Angeles, I was actually pretty good at letting a lot of that go (it wasn’t perfect), but if I was anxious, there was something I could do. I could go to the beach and de-stress. I could call my friends, whom I actually had and built very good, lasting friendships with. And I miss my friends down there. Some of the finest people I’ve ever met. If it doesn’t work in Bangkok (since I have a very short timeline to get several things in-line to make it work), I’m planning to head back to LA. Home.

I finished college and came back home to take care of my grandmother as she died, and got locked in this place. My own depression and inability to recognize how much I’d drifted from myself was quite a weird discovery. But then I started seeing those knowledge flags that they warned me about.

I was driving home from work and I drove to my childhood home, which is about 44 miles away from where I actually live, and I hadn’t lived there since 2001. I couldn’t remember where I lived. I finally remembered what city I lived in, drove to my town, and waited patiently in a Starbucks for an hour-and-a-half for my memory to come back (one “helpful” suggestion people always ask is, “why didn’t you just check your driver’s license?” Ugh… you lose your fucking memory and we’ll see how coherent and logical you are, okay?)

I’ve gotten better. I manage my emotions better. My body doesn’t shake. I remember things more easily. But the problem is, all of the patterns of illness from the last 20 years still exist. People still look at me through that lens, and honestly, I’m not really interested in having too many of these people in my life anyway.

My panic attack wasn’t about any of this. I always have this panic attack, that’s why I said I was expecting it. I had one before I went to New York. I had one before I moved to Los Angeles. I had one before I went to Paris. Each of those lasted days upon days. This one lasted maybe 2 hours.

Remember when I was going to move to Paris in 2017 and it all exploded in my face? That was my blueprint for doing Thailand. That was the moment when I realized that I wasn’t supposed to be here anymore, but then my disease progressed very hard, very fast, and I let it go for a while.

My original reason for going to Thailand was to die. Now I want to go to live. I want to eat whatever food I want. I want to meet people and make friends and not be the “crazy” or “sick” one. I want it to be hard, but not hard because I’m making it hard, but hard because it’s new. I want to go where I can relax and not feel the constant pressure of my family or religion or shame of my sexuality.

I just need to be somewhere else for a while.

Last updated June 19, 2021