Saturday, May 16, 2009

Praying for Rain

I watched the Farrah Fawcett documentary, Farrah's Story, last week about her two-year battle with cancer, and it was extremely moving, particularly since she's seemingly so close to death. Rarely do people document their health ordeals in this way, and what struck me most was her journal writings, which she'd narrate as a voiceover throughout the film. What a writer.

It's easy to dismiss Farrah, as she's been a pop icon for so long, but so often we forget that the caricature of someone portrayed in the media really has nothing to do with who the person is as a human being.

What struck me most was her simple, compelling journal description of rain drops, seen through the window of a German hospital where she was receiving alternative treatment, and how she would miss them and the senses they evoked since childhood if she died.

By this time, I was a crying, babbling idiot, not only because of Farrah's suffering and bravery, but because of the stark realization that I had no idea of what she was talking about.

When I heard her description, I tried to remember the last time I had any affinity for rain drops, or for any aspect of nature for that matter, and instead could only feel the sharp disconnect from life in general that one experiences when in chronic, untreatable pain.

Here was this woman repeating over and over how much she wanted to live, yet so often in the last five years or so, I've repeated over and over how much the pain has made me want to die, rain drops be damned.

What's also curious about Farrah's struggle is my familiarity with it, not due to this current health crisis, but to the one I had in 2002, when I was hospitalized with portal vein thrombosis (a blood clot in the liver's major vein) and Budd Chiari Syndrome (a clotting of most veins within the liver itself).

As the clot had happened apparently over time, it had calcified and spread to my splenic (spleen) vein, and the upper mesenteric (stomach) vein, the latter of which is almost always fatal. As my body had created "collateral veins" around the clot (thus supplying my liver with the blood it needed), doctors decided that nothing could or should be done, and my chronic abdominal pain would simply be handled with painkillers.

Even though this abdominal pain was chronic, like the jaw/face pain I have now, there was something very different in how I experienced it, mainly because the painkillers gave me complete control over it. All I needed most of the time was Tylenol, but when breakthrough pain occurred, about three times a week, a single Vicodin pill would do the trick, and I could go about my life.

In a strange way, it was all an exquisite experience, because I did indeed look at life differently once the ordeal settled down. I was so much more appreciative of all I had--friends, family, creative pursuits, a successful freelance career in writing and editing--and everything in the world had a new poignancy to it that could easily bring me to tears, not with sadness, but with a type of deep compassion for all living things. I began rescuing bugs, even, from the shower or from a drink that had a tiny gnat in its grasp.

I was living with a sense of urgency I'd never known, acting on creative ideas immediately and fully with a new selflessness, caring not so much anymore about accomplishment, which used to define my worth, but more about making connections. I was living so differently that I was actually glad this catastrophic health complication had happened, as my life had become so much more fulfilling as a result.

But then 18 months later, in March '04, the hemorrhage happened and I lost seven pints of blood in 24 hours. The ordeal was far worse than the blood clot of '02, and the extreme loss of blood caused the worst complication of all--the return of this jawbone infection, heralded in by an explosion of pain in my face.

I can remember the day it happened, because the fear that accompanied it was akin to what one would feel entering a torture chamber. When I first experienced the jawbone infection in '99, my research offered a grim prognosis, as I learned that there was a very high rate of suicide among patients with this affliction. I felt damn lucky that within two years or so, the infection somewhat resolved itself, as most patients must live with it their entire lives, which was an unthinkable existence.

But here I was in 2004, knowing full well that my luck had run out, and the beast was back worse than ever. Instead of pain being a reminder of all I had, this pain was a merciless taunt about all I was about to lose, because I knew full well that it was going to take everything out of me for a long time.

While the clot experience of '02 was ultimately poignant and enlightening, connecting me deeply with my world, the health disaster of '04 was its polar opposite--cold, harrowing and a walk in complete and unending darkness. As this bone infection is so rare, there was no one who could relate to this experience in any way. And the top pain specialists in my area could offer no hope at all, either for a cure or for treatment.

In short, I was on my own in a way I didn't think possible, and I've been walking this dark road for five years now, with both pain and painkiller addiction my primary companions. The only way I've been able to survive is to have made a certain amount of peace with them, which has been a lesson in patience indeed.

On Tuesday, I'll be having more surgery on my jaw, and God-willing, I will finally reach the end of this long, dark journey and get my life back. I'm curiously feeling fear at the thought of either outcome. If the surgery doesn't work, I may have to resign myself to a lifetime of chronic pain, but if it does, it will be a whole new me who returns to the land of the living. If I'm fortunate enough to experience the latter, I doubt I'll ever complain about rain again.

1 comment:

Joey B said...

Hey Mar - hope surgery goes well and I'll be in touch to see how you're doin'!