Last night I hung out with my old friend Eileen, who's passing through town on her way to Montana. We hadn't seen each other in years, and there was a lot of catching up to do. Of course I've followed her career somewhat, and she's known about my struggles with health issues, but it's hard to know anyone's real story from a distance. And we all have REAL stories, don't we? What's struck me lately, whenever I see an old friend, is how tough and resilient and fucking awesome we are. Us New York City kids from the eighties, often transplanted from other cities, other countries, occasionally other planets (take a wild guess who I'm talking about) - we've kicked ass. We've taken names, too - and a good many of us have not only lived to tell, but are rockin' the telling and rollin' the living in a way that's inspirational. In a way, frankly, that underscores a salient point about this whole "eighties revival" we've seen. It just seems to keep on going, and going, and going... it's the energizer bunny of retro revivals.
That, to me, is a testament to our sheer awesomeness. Whenever an old pal passes through, it's the BEST! Seems like, regardless of how long it's been, or how little we've kept in touch, the connection is still so close it's rightthere. And I believe it's got a lot to do with having lived through the 1980's together and, as Eileen pointed out, having lost so many of our friends at a young age. We've survived, and mostly we've thrived. Whether it's Eileen with her poetry and teaching, or Kiki and James and Michelle and Zoe and Linda and a whole bunch of others with their art, or Barbara with her jewelry, Tamera with her handmade shoes, or Ann or Marga with their performances, or Richard and Jimmy, or Sally or Adele, James and Dee with their music, Richard with his writing and producing and uh... whew, Lydia of course and wow... we keep going, and going and going. I defy you to tell me that all of us weren't defined by that moment in time that we shared. This has been apparent to me for a while, but more so now that we're a decade into the oughts. We were blessed to come together in this life at a time that defined the End of a Century.
But getting back to last night... man, it seems like every time I try to answer a question lately, I end up sighing... "it's a long story..." Moving out here? That's a long story. Do I ever play music, or what have I been doing, what kind of work? Looong story there. Going back to school at 46? That's another one. And the long slow progression of my Measure of End Stage Liver Disease? Holy Encyclopedia, Batman, that is one long-ass story. At a little more than one year since my liver transplant, it's a good time to reflect. And as I prepare to start treatment for Hepatitis C, I'm leveling up on my knowledge of the disease yet again. The support that I've gotten from family and friends has literally kept me alive, and I'll continue to rely on that for strength. Keeping you all informed as I embark on this stage is a pretty vital component of my strategy. In case you didn't know, I have every intention of beating this motherfucker and keeping this liver for a long, long time. Word.
WARNING: This part of the story may contain details of a graphic nature:
A little background on my history with this scourge of an illness. Contracted it in the 80's, no surprise there. Most likely from a brief dalliance with substance abuse, but hell... could also have been from an unsafe sexual encounter (yes, dear readers, I like boys too... maybe not as much as I like girls, but I like 'em just fine) and maybe even from my first tattoo. Remember how those used to be illegal in NYC, and you went to somebody's apartment, and who knows whether or not they replaced those needles? Damn. Those were the good old days.
So then I got clean and sober, and after that I saw a doctor, and blah blah blah and AIDS was happening and so I was checked for HIV and told that I was negative. I did, however, have some weird "non-A, non-B" hepatitis that was so new it wasn't even named yet. With a great doctor I kept pretty good tabs on my health. Through friends I learned a lot about nutrition and other types of healing. Stayed good and healthy while others were not so fortunate.
One day the doc tells me that he's about to embark on a study - a new treatment plan for what's finally being called Hepatitis C. Because of my awesome good health I'd make an excellent subject for the study, with a chance of clearing the virus from my bloodstream. Hmm, interesting opportunity. Get an expensive treatment, totally free of charge, and remove a potentially life-threatening illness. Risky, but other than a slight case of anemia (we couldn't ever pin down the cause) it seemed like a no-brainer. I said yes, and Dr. James Braun sent me to his partner Dr. Douglas Deitrich, who was heading up the study and managing the treatment.
At that time, the experimental treatment plan consisted of twice-weekly injections of Interferon and a daily dose of Ribavirin. Sorry I don't remember the dosage, but it was higher than what's currently in use, and it was a bitch. Loss of appetite was so severe that the doc would remark (off-the-record) that I could benefit from smoking marijuana if I was so inclined. I wasn't so inclined, because I honestly didn't like it. Lord knows I'd smoked plenty of it over the years, especially as a teenager, but probably because that's what everyone else was doing. Anyway, if it were only the weight loss and the fatigue, I might have gotten through. Depression was also a side effect, but anti-depressants seemed to take care of that.
Throughout all this I was still able to make it to my job selling real estate; my boss was wonderfully forgiving and understanding. At about two months, the drug combo was kicking the virus' ass. The level of HCV in my system had started out at 16,000,000 and was already way down in the 1,000's. There was no doubt that a complete span of treatment would clear the virus. But what really started to kick my ass was anemia. Not just the anemia I'd started out with, but such devastating loss of blood-cells that I began to look and feel like walking death. The drug pro-crit was prescribed; I was taken out of the study, but advised to remain on pro-crit, which eventually turned out to be ineffective and probably shouldn't have been prescribed.
Now, let me tell you something that many of you may not realize. When you enroll in an experimental drug treatment you sign a form stating that you understand the nature of any risks involved; that you will not hold the doctor or the hospital responsible for any potential negative outcome; and that, should you be unable to complete the treatment, your results will not be included in any on-going study. Yeah, that all makes sense. But here's the kicker... somewhere in the fine print... and what you really didn't pay attention to when you signed, was the proviso that you yourself would have to take full responsibility for any medical costs that may be incurred, in the event that you withdrew. Hmm... remember that drug, pro-crit? The one that the hematologist prescribed to "fix" the anemia? The one that ended up not working, but that I was told to keep taking anyway? That stuff had to be injected... daily... and it cost about $100 a pop. My insurance at the time covered about 60%, with 40% coming out of pocket. Yeah... that's right... I'd been clean and sober for over ten years and suddenly had a $40 a day legal drug habit.
Okay, as you ponder that, let me interject a thought. While it totally sucks that this illness has defined me, sometimes for years at a time, I've somehow managed to grow through it. I'm not going to call it a spiritual awakening, because there's always been a relationship with a higher power in my life. But there's a strong sense that the universe will provide. That what is meant to happen will happen. And that regardless of what happens, it's going to be just fine. In fact, to paraphrase a lyric, better than fine.
So... long story short, in the aftermath of this, a casual acquaintance appeared... a friendship blossomed into a relationship... A long-distance affair ensued, and being more than ready to leave the big apple, I headed to the mini-apple. I've never really looked back and I've certainly never regretted that decision. This city has been good to me. My partner's support was, of course, invaluable. There was time to heal, and then there was time to embark on a different way of life that fit me like a glove. Parks and bicycles and lakes and gardening. Farmer's markets and lots of music and interesting new people. Time to heal and figure out who I might be now, and what I might do. A big house and filling it with art. Music and more music... not playing much, but listening a lot. Not being very ambitious, to be honest. Just being.
Somewhere along the way I began to trust the medical profession again, at least enough to get back on the horse. I found a terrific doctor named Craig Peine at Hennepin County Medical Center, who correctly diagnosed me as having celiac disease, which turned out to have been the cause of my anemia. Thank you, Dr. Peine, and that dreaded procedure known as an upper endoscopy. In case you've never heard of it, it's where a little tube with a camera goes down your esophogus and photographs your intestinal tract. Yes, this does involve being sedated to relax the gag-reflex, but you're awake during this procedure. Pretty weird watching a camera go down your throat... and could be really cool to watch if you weren't being choked to death at the same time.
Now, a gluten-free diet is the only cure for celiac disease, and being gluten-free pretty much guarantees a 500% improvement in health immediately. Anemia? Gone. Asthma? Allergies? Pretty much gone, except for animal dander and dust. Flash forward... gluten-free girl, that's me. And, as I said last night to my friends, Minneapolis is probably the best city in the world to live with this particular disease. We have great food co-ops and gluten-free bakeries and restaurants that serve gluten-free meals. Sheesh, as most of my friends know by now, we have gluten-free pizza in compostable boxes, delivered to our door by guys and gals wearing super-hero costumes and driving electric cars.
This is a pretty roundabout way of saying that I'm not scared about the new and improved Hep-C treatment. In fact, I'm pretty excited about it, ready to kick the virus once and for all. I know that I'll need your unconditional love and patience when I bitch about being tired. I'll need your emotional support and I know that you'll be there for me. Every time you make me laugh or inspire me with your music and your art or share your favorite recipes, you keep me going. Your triumphs, your failures, your loves and your losses, that's the good stuff that nourishes me. Thank you for that, my friends. I love you, and I love your stories, every one of them. And thanks for being interested in mine. It's a privilege to share with you.
xoxoxxo - Laura