I've Got a Secret

I've been sick my whole life

After 22 years of being sick, I’ve been offered a life-saving bone marrow transplant at the National Institute for Health in Washington, DC. So why do I feel so betrayed by the idea that I will probably now have a full and healthy life?

When I was 14, I first became ill—a fever of 105, rapidly dropping blood counts, in and out of a state of consciousness. I found out years later that my parents were told I wouldn’t make it through the weekend. No one could figure out what was wrong. I spent all my teenage years in and out of the hospital. At one point, a doctor told me directly that I had only a few months to live. I can honestly say there were times during that period when I faded in and out of this plane. I had intensely vivid dreams about meeting God, about lives that had come before this one, about what a soul untethered to a body was capable of.

I made peace with death. More than that, death became my confidant. I never feared it. What I did fear was being stuck sick in the hospital for years. So I made a pact with death: while I was alive, I would live to the absolute fullest. I would do any crazy thing I thought of. The rules of life that everyone else had to follow didn’t apply to me, and I took full advantage of it for the little bit of time I thought I had. I organized music festivals. I showed up at the now-defunct Indie 103.1 radio station until they gave me a show. I opened a venue. I led mass bike rides storming through the streets of LA, setting up bands in obscure and forgotten corners of the city. As life continued, my main pillar to live by was that if I wanted to do something, I could find a way to do it. I took life in large gulps, eventually traveling the world. I made art that I am still proud of all these years later, and I tried to make as much space for others to do the same.

As time moved on from those early years of being so sick I had to drop out of high school, the feeling that life was always almost over didn’t leave and informed my approach to the time I had. When I turned 30, I couldn’t believe I was still alive. There was no part of me that had ever dreamed I would make it all the way through my 20s. After a visit to the ER for a fever, I was unceremoniously informed that my blood count was normal. It honestly took years to internalize that and start to think about what a life could look like with a different mindset. Three years later, at a routine checkup with the hematologist I barely ever saw anymore, I found out that the ER was wrong and I was, in fact, still sick.

That’s when COVID hit. Through the pandemic, I was confronted with a lot of my younger self that I had chosen to put away. For the first time, everyone was experiencing things I had spent my whole life dealing with. Isolation was not new to me, but as time progressed and my partner, as well as several friends, started to come to terms with their health as a disability, I started seeing the power in it—the grace it affords you in every situation, the empathy you gain for others. The strength you have as a sick person can be so much deeper than those who haven’t experienced that compromise yet.

So, here I was a year and a half ago, finding my power and deciding with my partner Sarah what we wanted our lives to look like. That’s when we decided to finally do something we had both dreamed of for a long time—move to Europe. I thought I’d be an adult and see a hematologist to get full blood work before we made our trip. Admittedly, it had been longer than it should have been, and I didn’t have a steady hematologist anymore. So, when I saw a new one, they decided to run full tests. Two weeks later, I got a call from a geneticist telling me I have something called GATA-2 deficiency, a disease discovered only 10 years prior, and that this was the underlying problem behind all my health issues. The only cure was a full bone marrow transplant. After that, I would most likely go on to live a healthy life.

What does that mean? That idea of a healthy life when you’ve been actively sick since you were 14? It’s not something that ever even occurred to me. Now, at 35—which, as much as I don’t want to say it out loud, is middle-aged—the rules have been changed on me. I was guaranteed death, and I was given life. What do you do when you’ve spent your whole life thinking you are right at the finish line? I am grateful for the chance, but I’d be lying to say there aren’t days I feel betrayed.

Over the next year, I will be going through a procedure that will literally change the very fabric of my being. For the first time, I’m starting to actively think about what the next 30 years could look like. I’ve spent the first half of my life holding this as a secret to most, but I want to do my best to let the world in now. Through this writing, I’ll be exploring sickness, health, spirituality, and asking: why the heck am I still alive?