Transitions in my Hepatitis C Journey


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.Hooping



Hooping At Kawela Bay

Hooping At Kawela Bay

I love to cycle in these woods and spin hoops…This is where I go to push myself thru my disease and into the feeling that I am so far beyond anything that can hold me down for long. 2012 image shot.

Kawela Bay north shore of oahu

Play at Turtle Bay

I am in love with this island. This is Turtle Bay where I play on the shore climbing the trees and throwing my Lasso. Centrifugal Force is a healing force. I throw the rope for two to four hours about twice a week. Dragonflies try to enter the center of the force inside of the rope but they never come close enough to be hit by the rope, they are drawn to the feeling created by the force radiated out from it and I am held in the force of inside as well as outside of it. The Hapu Turtles come onto shore at times when I am throwing it. They often pop their heads out of the ocean to watch and I laugh out loud with joy. I almost cry when they come onto shore where I am throwing. I stare out at the surf, the Stand Up Paddle Board surfers, the locals who fish the reef there, the tourist from the resort down the road who ride horses through the woods. I climb and hang from the trees on the shore and soon I will surely make my way into climbing the Banyon Trees in the forest there at the shore which I walk past to make my way to the beach. Its so very oh oh la la Aloha…I feel as if all the gods are shinning on me at the most important time in my life, I suffer from End Stage Liver Disease so I am not much longer for this planet and headed for the Galaxy of who knows what and where and I find its all good…written spring 2010