In January of 2013 I went to India. I never had a desire to go to India. I was asked and I went. The primary reason was to talk to health professionals about addiction and explain the concept that addiction and alcoholism are a disease not just weakness, lack of will power or bad character.
This morning as I was walking my dog, I was doing a mental checklist about what I need to do before I take my upcoming trip to India. I thought I should get some blood work done before I go. Then, as my mind sometimes does, it wandered. I thought Why not get another HIV test? It has been 22 years since I had one. As I continued my walk down to the ocean I started to fantasizing about what it would feel like to receive a negative result.
It is the middle of summer in the Caribbean. The cruise ships have slowed down. Everything has slowed down. I have slowed down. For the first time in my life I have taken whole days, even multiple days off to do absolutely nothing. The contest is officially over. I know I will still die in this lifetime but I have lost the urgency I felt for years (28) living with HIV and Idiopathic thrombocytopenia purpura (an acute bleeding disorder).
Every morning I feel so fortunate to wake up to another day. I have been calling this time of my life the "bonus rounds," and they are. I live by the sea in St. Thomas, Virgin Islands, in an amazing house right on the ocean. It is not for everyone because living here is not at all like taking a vacation here. It is a little rough and tumble. For instance, the other night as I slept I felt something warm and alive plop on my head in the dark.
World AIDS Day makes me sad. For me it is a day of mourning and grief. Even though I will stand up in front of yet another group of students and talk about how this is a preventable disease, I have no delusions after 22 years that my one talk will make much of a difference in their behavior. I might plant some seeds. I might be part of a cumulative message that eventually helps some of the people make better choices. But regardless, I will continue to speak about the need to advocate for better safe sex methods and accessible information for all types of groups around the world. I will write, paint and perform in hopes of finding alternative ways to reach the hearts and minds of the human race when it comes to AIDS education.
Since moving to Water Island in the Caribbean, I have kept a low profile. Most people here think of me as a painter, and I run a non-profit art alliance called sevenminusseven on St Thomas. I did do a couple of programs for the department of health but they were also low key and on other islands (St. Croix). So when another non-profit art group asked me to do a short performance at their women empowerment evening, I said yes. As soon as I did I realized that I would no longer be under the radar. These islands are like very small towns where no one can leave and the national pastime is gossip.
Recently my life fell apart financially, emotionally and spiritually. I had hit bottom. I have been in recovery for 25 years but I found a new addiction, or really not so new -- it might have been my first addiction -- and that is control. For the first 13 years of living with HIV infection as well as acute, chronic ITP (idiopathic thrombocytopenia pupura) I came to accept I was powerless. It is one thing HIV, if you are willing, will teach you in spades.
On the second day I cried / I could not hold it in any longer / I was strong, brave and courageous / on the first day
It is 6 a.m. and I am sitting on my porch drinking my first cup of coffee of the day. This is absolutely the best part of my day. I empty my mind and listen to the birds with my little poodle mix (which you could call a porkie or a perrier -- they used to be mutts; now they're labradoodles and shitles). I feel his warm little body settled in next to my hip and all is well with the world. No e-mail, texts, phone calls. I don't think about schedules, contracts or packing for the next trip, what I will wear today, and the long list of to-do's sitting in my office. This is the time of day when unsolicited thoughts settle into my consciousness like a fresh blanket of snow. Maybe it's a new way of looking at a painting, the right turn of a phrase for a poem or an idea for a book, blog or column.
Hello from Vienna! It is the last day of the International AIDS Conference and I have survived! I came here to perform my one-woman show, Sex, Cellulite and Large Farm Equipment: One Girl's Guide to Living and Dying, as well as present a short film I made on women and HIV, A Positive Life. Both went very well.