My battle with Lupus in non-sequential order.

Sunday, September 13, 2009

The Ballad of Chemical Dependency

Five months ago, April 13th, my world changed. I do not say this flippantly. I mean that I sit here today the same person, while also totally and wholly different.

One of the things that is clearly different about me is that I am now more open to telling my story. I have always been one to try and control all information about myself, holding onto my secrets, desires, failures, etc, like a prospector grasps hold of hope for rocks full of luster.

In the past, I would carefully distill information about myself and scatter it in a very controlled way, hoping to orchestrate, to the last note, how others viewed me. I wanted to keep an air of mystery about myself, to make sure people whose company I enjoyed would not become bored or tired of me. One of my biggest fears was that I bored people.

As most people bore me, I do not want to inflict this torture on anyone else. And frankly, I often find that I bore myself. Or did. And I really think this was a major stumbling block to my development; because, when I bored myself, I shut down. I quit on myself. And trust me, this is a problem, as it only brings apathy and quite a bit of self loathing.

Well, that was the old me. As I said above, my whole world changed. I have stepped out of the pupa of chemical dependency as a totally different person.

So in celebration of this change I am going to give freely of my story, be open and honest about why and how this happened. And while I understand that writing is, in essence, controlling the flow of information, I am letting it flow freely and doing my best to not hide or disguise anything -- though lessons learned over 30+ years are often hard to unlearn. But, I am trying. I am different.

So what happened on April 13th that such a change could happen?

Well as some might know, I have been suffering from Lupus (SLE for the completeists) for many years, though it was only diagnosed a few years ago. I was being treated with regular doses of Prednisone, among other slighter meds (including the one that turned me red as a lobster and caused me to itch for 2 days, the one i really should remember the name of so I can make sure that I never take it again, but for the life of me I can not remember what it was called...). The meds were working adequately in controlling my lupus, but sadly doing nothing to help it go into remission. As remission was a major goal, we added another med to my treatment late last year and like being shot with a magic bullet, everything in me started to go bad. It was like my sour disposition was finally metastasizing and overtaking my desire to get better.

I was in a bad way. The one treatment that had been controlling my disease - the wolves eating my kidneys, as I like to refer to it - stopped working. And my condition was getting worse. This occurred just as winter hit the Northeast, and as those who were here know, it was an especially harsh winter.

Of course, as someone with an inflated sense of self, I viewed this as a metaphor about me. So with each temperature plunge below freezing and each snowfall I fell faster and faster into despair. Just at the time when I finally realized that I wanted to live - and trust me for most of my life I was lucky if I was just indifferent to this idea - my body was conspiring against me. I was on the path towards death. Well, we all are, but my path looked like a 5K run. And that was pretty much the definition of unacceptable to me.

So against my better judgment, I did the scariest thing I could think of; I opted for the nuclear option: the existence of which I withheld from 90% of my friends. In my mind, I would either win this war with a massive game-changing solution or end up as a metaphorically radioactive glowing corpse. So on April 13th, I began a five-day massive onslaught of a chemo treatment that the Oncologist informed me would be "far worse than the worst thing I could imagine." I thought he was joking. He was not.

You may be asking yourself, “Why use a cancer drug for lupus?” Trust me, you are not alone. I had fought this idea for over a year. The thought of pumping myself full of highly toxic chemicals is not my idea of a good time. Hell, I try to eat organic food whenever possible. Chemicals are the last thing -- the very last thing, I want to introduce into my system. I had also wrongly believed that chemo = radiation, and that was a total non-starter for me. But so was dying.

The treatment was designed to take me to zero and restart me, killing not just a tumor, but damn near everything inside me. The theory is this: the treatment should kill all of my blood cells (Lupus causes white blood cells to see healthy organs as invaders and attack them.), so when the stem cells in my bone marrow start producing new blood, they will not be inflicted with the same taint as my current cells. So going forward, my white blood cells should not be retarded and target my organs as foreign objects, invaders.

The treatment has an amazingly high success rate, but just the same, it cannot be seen as anything but a drastic step. But I took the plunge because it was that or plan for how I wanted to spend my last days: who I wanted to see and where I wanted to visit before, well yeah...

And as I said, the Oncologist was not joking: It was truly the most miserable experience I have ever endured. I saw both life and death flow out of me. My skin cried death. My hair turned brittle and gave up. The one thing I craved, control, molted off me. I tried to save it, grasp it, keep it attached to me. I failed. I had a whole week of failure. I was sure I was dying, that my life was failing. In fact, the only thing that did not die inside of me was failure.

I still cannot tell you what is more humiliating: shitting your pants while sleeping and winding up with the remnants of a fecal explosion encrusted on your legs, and knowing you have to shit again and slowly making your way to the bathroom, trying to make it without falling down and just as you get to the door having your ass explode, once again shitting yourself. Or standing crying - with one hand utterly useless, wrapped in a plastic bag (protecting the catheter) - in the shower, trying to clean the remnants of poisoned shit off with just your right hand and uncontrollably puking all over yourself.

That was likely the lowest point of the treatment for me. I sat under the hot shower stream feeling terribly embarrassed and crying tears far warmer than anything the shower head could provide, and sliding to the ground as the will to stand sort of fell to the ground faster than the retched puke could slide off my listless limp skin. I wondered what the point was. That was the nadir of my life.

I spent 38 days afterward trapped in my apartment, full of fear that leaving could kill me, as I was without any semblance of an immune system. Whereas in the past this would have made me feel like repeatedly driving a Buick into my skull, I was beyond happy that I had made it. I no longer felt that I had to speed everywhere, cram in as much as I could, etc., mainly because I just could not.

I move far slower today than I did four months ago. I cannot do nearly as much as I once could during a day, as I am still in the midst of recovering from this treatment, which was clearly taxing on my body. But I have suddenly learned to enjoy the slowness, and not just out of necessity. I see things now. I hear things now. Things I would have easily missed before. Things that inspire me. Things that fascinate me. Things that disgust me. But nothing that bores me.

I am not saying that I lack the capacity to be bored. On days that I lack the energy to get up and do things (and there have been many, but they are far fewer now), I am frustrated, and the walls around my bed bore me to tears. And I admit that maybe I am still living on the euphoria from just being alive. After having one's existence nearly wiped out, experiencing and feeling each cell commit suicide; well, let’s just say life becomes a long euphoric trip.

But I see it more as a chemically-induced metamorphosis. See, I sit here typing this today as a very different person than I was. Anger and venom used to flow though my veins. Simple things would make me seethe uncontrollably and rant about my opposition to anything, given the chance. In fact these traits came to define me. And while I still do not enjoy stupid and/or inefficient things, they do not provoke me as they once did. How did I ever let myself get to a point where inanimate objects could pull my strings like a puppet? Seriously?

And even though I have about a year to go before I am completely recovered, I feel better than I have in over 20 years. And I love that most of all. It is like I accelerated the process of becoming the new me. Supposedly, one regenerates every cell in one’s body every seven years, so that in seven years from now, you will not be the same person that you are today, at least physically speaking. The chemo was an expectorant that made me cough up a more healthy version of myself, both physically and mentally. One that is allowing me to kick Lupus's ass and become a better person.

My continued existence is owed to toxicity. Toxicity that worked so well that it seemed to have expunged much of my own self-developed toxicity. The ironic notion that the one thing that I tried to keep at bay, chemicals, helped purge this venom does not escape me.

People who know me well could easily be convinced that I used to be a person of extremes. Okay, so you would not have to convince most people. I was very much an either/or person. I loved or hated things. Now moderation is my mind-set, and each day the specter of who I was dissipates further.

I titled this after Nan Golden's Ballad of Sexual Dependency for a reason. Her stark images were filled with haunting dread. In fact most of her subjects died within years of being photographed. She captured most of them in the late winter of their lives. And even though it still chills me to think of myself nearing the completion of my life, prior to my embrace of a chemically-dependent life, I was a sort of an echo of her pictures, creeping towards completion. Now, I seem to have been given a second spring in my life. And it is amazing. Perhaps I should have titled this piece The Aria of Chemical Dependency, but... well, it just does not have the same je ne sais quoi. Just know, be it ballad or aria, I am belting it out to the amazing power of chemicals.

If only I knew chemicals had such power before....

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