I am on treatment again, i have just a bit more than four weeks to go. Its a 12 week treatment program. About half way thru, it hit me hard. I started out strong, determined, ready to take on anything. I had just survived a major bleed out. I developed bleeding varices in my throat. This happens to us as the disease progresses. Most likely they had been bleeding slowly for awhile. I had refused an Endoscopy so it could be determined whether I had them or not. I had refused to go back onto treatment. My near death experience changed all of that, I could suddenly see it was my only shot in the dark. I survived the bleed out, it was the most humbling experience of my life as I was alone and extremely ill with what looked like the most horrific case of mouth Thrush anyone could ever imagine seeing. It was 2 a.m. I woke up feeling like I had to throw up but I was so weak I could not get out of bed, I recall thinking I would have to just lie there and puke on my bed, I was that ill and weak. Then I was throwing up, I was projectile
I lived in NYC in 2003 when I was told I had Hep C. I was a menopausal woman and felt something was wrong other than menopause. I was also a fierce drinker and felt something was wrong other than the recovery of any hangovers or day drinking I had ever known in my life as a drinking woman. So I had a doctor’s visit. In NYC, they see everything, the doctors there are on it to find out what is going on. I had an elevated liver profile but I’d had one for years but this doctor got curious, he tested to see what things I might have that could be causing it and bingo there was my life flashing back to 1972 when I was a heroin user for 9 months of my life and no doubt contracted Hep C that way. I simply told him when he gave me the news that I was sure where and when I had contracted it, nothing to do but suck it up and move forward but moving forward meant giving up the life I had in NYC, I”d made a life for myself there, I was in the middle of settling into it, I had only moved there in 2001 but had been hand coloring photographs for a photography business for a few years and had worked hard to make this transition to moving there. I had become a member and part of The Exhibition Committee for one of the best and longest standing groups of photographers in the city, “The Camera Club of NY.”
There was a lot of sacrifice, I had to make life changing decisions that affected my entire family and mostly no one understood how a woman could take off and follow her own dreams once her family was fully intact and functioning on its on well without her, they all grew up, it was my turn, I’d been mother bird for almost a life time, I wanted something else now; so I faced the odds and moved.
It took me a year to go onto treatment and in the end I did it because everyone wanted me to at least try it, almost everyone, my acupuncturist sure did not and later I found out why exactly, but later it was too late, the treatment did not work, a year of chemo drugs and interferon and I was still loaded to the gills with the virus tearing away at my liver but now I had nerve damage from the treatment drugs. I was only able to get about with a cane. Two years passed and I was still getting about the streets of NYC with that cane. I was angry. Its a hard city even for a strong healthy person but I loved the city, I loved New Yorkers, I loved the life I’d made there, I had never intended to leave but I had to.
So I spent almost half a year in Australia on a sheep farm near Melbourne and got a lot of thinking done, part of that journey there was bliss and beauty, the other was anger and disappointment as I was not well and no one understood how weak I was. The strong never want to appear weak so we seldom do and when we do at times there is a judgment placed on us that maybe just maybe we are faking it for some reason. I still live with that judgment because today I look ever stronger than I ever have. My Hepatitis C has caused that.
I began after moving here to fight to live well, it was hard to figure out alone and it took a lot of heartache to understand that truly people did not understand what they could not see and I let them go and pushed myself to the top of my list and learned to live in isolation and to seek out company in the post office, grocery stories, shops, streets and on the beach. That is where I began to have my affiliation needs met and this continues to be true.
My journey with my Hep C began on this island after leaving Australia returning to NYC to admit I was not meant to be there any longer and to move to this island of Oahu where I can live in the peace and quiet in the rural countryside of the north shore of the island. In 2008, when I moved here, I was not strong enough to get into the ocean alone, I could not even ride a bike, I could walk and I could dance so I began to do that as practice and I began to experience results that led me to hanging a trapeze and swinging from it for about 7 hours a week as a discipline, I would wake up and walk out onto my deck on Pupukea that was on the edge of the cliff and over looked Waimea Bay up to Keiki Beach and I’d grab that bar and swing for an hour or two like mad, doing that I was able to give up one medication at a time, I came on five medications, anxiety meds, anti depressants, two blood pressure meds. Then I took up throwing a lasso and I became even stronger, after that I got onto Poi Balls and boy did they turn me around, they put me on the beach in front of the surf and I used the force of the surf’s spirit to connect to. From there I”ve graduated to Hoop Dancing and I do this for 7 to 14 hours a week, I have a lot of recovery exercises to keep up with due to the pain in my hands, arms, legs and feet but my god what muscles I have developed to hold me up, yes I am all over the ocean now, I respect it but I sure push myself into its fierceness just so I can absorb its energy. Then I took up cycling, really cycling, I have now both a mountain bike and a race bike and yes I can ride distances, I love how hard it is, I get off on it, of course I do, if I am not engaged in these activities then I am lethargic and sluggish, depressed, my body hurts, my blood barely circulates and my access to oxygen is limited, only endurance exercise makes me feel like I am a fully functioning human being so yes I have fallen in love with all of my disciplines, I live for them because in turn they keep me alive and thinking clearly about how to continue to manage and be strong in my body as well as in my spirit, its the worst possible scenario to let one’s spirit fall down when one is this ill, it destroys ones love for life and for fellow human beings and I want to belong, I don’t want to be separate so I look kind of jock like with my 6 pack abs and arms with long bulging veins in my arms from endurance exercise but that’s okay I don’t have to be a femme fatale I just have to live well.
I’ve got to get out and push it. I need to burn. This is what I do. I rise up against my virus holding me down and I go out onto the shore and I push. I moved here for this work. I grew up in rural Alabama. I had a head full of dreams. I made my way into New York City and got to know myself in a way I’d never known myself before. I had the time of my life which does not mean I had the easiest time of my life. I recall few easy times in my life. I moved there in 2001 and by 2003 when I had everything going for me in the world, I worked at a great cooperative at Union Square and finally was with my people, real fine art photographers who realize that in every photo there is a whole life being exposed, I found out I had been exposed in 1970 to Hepatitis C when I was an IV drug user and shot Heroin for about 9 months of my life. I have the hardest geno type to clear. I did a treatment and it did not kill the virus but it did almost kill me. I did not even know who I was when it was over. All my nerve endings in my gut and brain just for big starters had been fried from the treatment, I had to use a cane to walk. I took off to Australia and kind of lost myself in that country for five months then went back to NYC via Hawaii packed up and moved here to find a woman that I did not know existed but that would save my life or transform it in some way that seemed as if there was so much hope and life left for her. It has worked. I’ve pulled myself up one year at a time. I now cycle and spin hoops and not just for fun. I do it to survive. I do it to channel my dying experience into a living experience. I don’t want to just lie down and give up, I need to rise up against this at least to say, “look at me, I am as strong as you are Virus and when I go I will take you with me so you better make yourself perform for me because this is a 50/50 relationship, destroy me and destroy yourself too. I spin hoops for four or five hours at times and I am always spinning hard and burning them for at least 2 hours and I do this for 10 to 14 hours a week along with riding a mountain bike as well as a road race bike. I’ve become an athlete. I had no idea there was one that lived inside of me but she rises to every occasion and carries to like a great warrior right thru this war inside my body. I ride her energy and spin until I can feel her burning and glowing deep inside me and I know that with her I can face any ride that comes up even the ones I don’t even want to consider. I’ve been flooded with 16 pounds of fluid and I got up and I got me some push and grabbed the hoops and made it to the shore to stand in the hot sun for hours trying at least to jump and spin and transcend this disease. It can cause the trunk of my body to become numb. I have had to accept that my arms and legs would not rise and fall and I could not lift off the shore in jumps because I was so weighted with fluid. I kept doing it anyway.