God's Ejector Seat

I have Morgellon's Disease. I'm not going to go into the gory details of this illness, when google can do the job for me. Suffice it to say, it sucks.

I became aware that I had this disease on January 16th of this year, four days after my 41st birthday, when black hair-like things started to emerge from my skin, all over my body. I had had some crazy skin problems for about 2 months prior but thought it was a staph infection I had picked up at the gym. In Oakland, you can pick up just about anything at the gym, not just guys named Cedric with fuzzy dice hanging from their rearview mirrors.

So, when these black things started coming out of my skin, I marched myself down to the ER at Kaiser Permanente Hospital, because I didn't want to fuck around with the family doctor. I was sure that somebody would have a simple explanation for what was going on with my body, and some meds to clear it right up.

The nurse's reaction immediately knocked that hope out of the ballpark.

"Ooooh," she said. "That's so weird!! I was just hearing on the radio this morning about this weird disease!"

She went off and came back with a printout from the internet. "Don't tell the doctor," she said, "I could get in trouble."

So that's where I first heard, or read, the words "Morgellon's Disease," a strange, horrifying, and to-date incurable ailment that most doctors continue to insist is "all in the patients' heads," and that's when I knew I was in very deep shit.

After four hours at ER, I got to see the doctor, a jaded Asian guy who spent about 25 seconds telling me that they don't do that kind of testing there, before he sent me on my way. A few weeks later, I learned that Kaiser actually has a Morgellon's Research Study or something equally bogus. Obviously, this doc hadn't been informed.

There are enough Morgellon's forums on the web with horror stories about people's experiences with their bodies and with doctors (both of which categories seem to have been possessed by evil aliens) to make any further discussion of same superfluous.

I do want to say that I'm doing great. At the beginning, my plan was to kill myself. I didn't want to die, but I didn't want to live with the modern equivalent of leprosy. On the other hand, suicide is no walk in the park. It takes planning, it takes energy. Most of all, you have to really want to die, and I didn't, ever. And I especially didn't want to die looking like shit.

Then, spurred by my mom's incessant nagging, I actually found someone to treat me, which is the great miracle in the life of any Morgellon's sufferer, and I started to hope that maybe, I could get well, and live. And I did, and I am. Alive, I mean.

I was told from the get-go that this is a chronic disease, but as my condition began to improve, I started to believe that I could heal, completely and permanently.

This has not proved to be the case, unfortunately or fortunately, however you look at it, because this disease forced me to become healthy. I had to start to really take care of myself, nutritionally and energetically. The Jelly Belly-based diet had to go. The daily living sacrifices of my energy had to go. People, situations, even thoughts that dragged on me, had to go. I had to learn to say no, and I had to learn to say yes, at appropriate moments.

How often do we say no when we really want to say yes and vice-versa? How much of our lives and actions are dictated by guilt? If my life is a journey, and my body is the ship, is Guilt really the best captain?

But it's hard to get to the point of mutiny, until something comes along, like Morgellon's Disease, and makes it literally a do-or-die scenario.

Morgellon's Disease got me out of Oakland. It got me out of multiple energy-draining relationships. I'm not blaming anybody else. I offered my energy freely, like baring your neck for the vampire squad, because that's how I was brought up. Put others first.

But it was killing me. Sometimes I wonder if that was the real disease--not Oakland, but the way of life that had gotten me there. The contorted idea that my life was best left in the hands of other people, or fate, or blind chance. The system I had perfected of buying affection through good deeds. The resentment that had built up for 40 years, from always listening, always "helping," but never speaking, never asking for help. Always waiting for other people to figure out what it was that I wanted, or needed, and always disappointed.

Sometimes I wonder if this black shit that I still see coming out of my skin, sometimes, is really resentment, and hate, and anger, manifesting in a physical form. Capricorn is a material sign. Maybe this is just God's way of communicating in a way that a material girl would take seriously.

I don't know. With Morgellon's Disease, nobody knows.

I didn't kill myself, but in some way, I died. Along with my furniture, my car, and the few relationships that meant something to me out there, I left the person that I had been for 41 years in Oakland. If it sounds dramatic, it was.

I went to see a medium sometime in the middle of the really acute part, and to get to her house, I had to cross River Styx Road. I crossed it again on the way back. As far as symbols go, I'd say that's pretty good.

Now, I've started to live again, in low gear, true, but who's to say that life should be lived at high velocity? It's strange because Morgellon's is, in many ways, a secret disease. People look at me and they think I'm the healthiest person in town. Sometimes, they even look at me as if I were an attractive woman, which is a shock. I cannot speak for other diseases, but I know that Morgellon's completely annihilated my sense of sexuality. I didn't feel like a woman, I felt like a monster, and the thought of men made me want to vomit.

Maybe this is TMI, but it is, after all, a blog. Read at your own risk.

Now, my skin is clear, I'm back in shape, and I'm starting to think about how it is that I want to live the rest of my life. I went to a Qi Gong master a few months ago. I didn't tell him about the disease. He told me I was one of the healthiest and most integrated people he had met, energetically.

"Nobody's perfectly healthy," he said. "Everybody's got something. The trick is, find the balance."

So that's what I'm trying to do. I'm trying to do more of what I love--write, be musical, be physical, be silent--and less of other things. I'm trying to learn to be the captain of my ship. I'm learning about control, and love, and how the two can cohabit. I'm trying to do all this with the market in the crapper, and of course, that's scary, but the nice thing about Morgellon's Disease is that practically nothing can scare you anymore, once you've plucked worms from your eyes.

The reason I'm writing this blog is that for a long time, I wouldn't say the words, "I have Morgellon's Disease," and I wouldn't let anybody else say them either, just like nobody was allowed to say, "How are you?". I would say, "This disease has manifested in my life," and I was waiting for it to de-manifest just as suddenly. But that hasn't happened, and maybe it won't.

But neither will I. De-materialize, that is. I'm not going to teleport to some other realm, or go flying off on my broomstick to a better life in somebody else's body. Not because I don't want to, but because the possibility just hasn't been offered to me. Also, I've gotten kind of fond of Cassandra.

I can't say that I'm ready for whatever Life has to dish out. In fact, I'd like to make a special request for Life to ease up for a while. But I am trying to perfect the art of living in a state of imperfection. That's all.