Positive since 1998
It might be considered neglect or thoughtlessness or an uncomfortable topic for some to discuss. It might be a form of abuse or abandonment. It might be that others do not want to intrude, be nosey or don’t know how to inquire. It might be people simply feel it is none of their business.
It could be ignorance or a lack of up-to-date information about the subject. It might be fear, denial or anger. It might simply be forgetfulness.
It could be an uncomfortable shyness about discussing illness and possible mortality as well as sex and morality. It might be fear of dying and death. It might be sadness.
It might be all of some of these things and more. Or, it might be that I am feeling some sort of self-pity.
I am an openly gay man with HIV. Just about everyone in my world knows that I am proudly gay. And, just about everyone knows that I have HIV.
I am doing well and taking care of myself. I am being 100 percent compliant with taking my medications to control this virus and the many side effects I sometimes suffer.
However, there is one thing I am struggling with, and I know others are also.
I am not doing well with the silence. The stigma of silence. The other on-going stigma.
I hear nothing from almost everyone in my life about my infection, my condition, my ups and downs, my fears, my feeling ill some days, my pain, my conflicts, my care. I commonly experience one on-going thing: the deafening silence about my HIV.
Diagnosed in 1998 with AIDS. I was near death. I had critical AIDS-related pneumonia. I was very ill. I had four t-cells—those little, vital cells that keep humans protected from opportunistic illness and diseases. I named them after my four sisters. In a healthy, unaffected person, the normal t-cell count hovers from about 480-1000, depending on what lab is used with whatever health care system a person uses. I get my wonderful care from Kaiser Permanente in Southern California.
I was saved by caring doctors and nurses and caretakers and the incredible non-judgmental support from my loving partner of over 38 years (we were married July 1 this year in California), and from friends and colleagues I worked with at the time and most family members. I was hospitalized several times. I had two HIV-related surgeries, including one to save my eyesight. I nearly died. I nearly died again later after treatment from cardiac problems resulting from older HIV medications.
I have had blood transfusions and I have been through the sometimes-torture of being in voluntary clinical drug trials to help myself and others.
You see, time was on my side. I became ill shortly after new, life-saving anti-retroviral medications were discovered and introduced. I began drug therapy immediately. I threw up a lot. I could barely walk or sleep at times. I could not see well. I did not feel well or strong. I spent a lot of time in the bathroom and I could not travel or stay away from home or a restroom.
But I was saved. I was lucky. Many, many friends and colleagues diagnosed years before me had no time or discovery on their side. They had no medications to save them. They suffered and they died.
I know friends and family members and neighbors with many different illnesses and health care challenges. Most people who are aware are kind and caring and keep up with their illnesses and their care and progress or lack of progress. Friends with serious heart and pulmonary illnesses. Family members with diabetes and lung cancer and other serious and not so serious ailments. Many of these friends and family members have long and chronic illnesses that are more comfortably discussed most of the time. They suffer and hurt and feel scared and concerned. In return, however and in most cases, there is care and concern and questions, comments and medical suggestions.
Not with HIV.
With HIV, there is a whole lot of silence. No discussion. No inquiries. Little knowledge. A quick “how are you” turns into a sudden change of subject. Many times there is nothing said or asked. Nothing. Silence.
I look pretty well because I take care of myself, even at age 64, and having lived with HIV for many years. I understand some silence. I don’t understand a lot of the silence. Silence hurts. Probably no one to blame but myself perhaps, but the silence hurts.
Most problems I experience with HIV come from my HIV medications and side effects. Luckily, the virus is silent itself, for now anyway. I suffer from severe nerve damage, a condition called HIV related peripheral neuropathy. I sometimes feel extremely worn out. I have anemia and severe fatigue at times. There are times when I feel like puking my guts out. Sometimes I have problems standing or walking. Lack of rest and sleep and bad dreams haunt me at times. Sometimes I feel down and very alone. Other times. I feel great, fortunate and loved.
But the silence. What is it? I am not cured of HIV and probably never will be. I suffer from HIV and forever side effects from taking some very strong, heavy-duty medications.
I am on chemotherapy every single day of my life. Seldom am I asked about it and it affects me and my life and my spouse. Seldom am I asked about the many, on-going doctor and lab visits. Seldom am I asked if I am too tired or too weak or too uncomfortable pain-wise to do things. I am expected to keep up and do the things that others can do. No questions. No inquiries. Nothing. Silence.
I do feel people care, and I do feel loved. However, I don’t feel cared about many times. HIV silence.
How do I cope? I stay active as much as possible. I exercise. I eat well. I get involved with politics and learning all I can about HIV. I try to help others. I volunteer when I can. I keep up with world happenings and news and I try hard to be a caring person to others. I read, I write and I keep in touch with others in the HIV community. I do what I can to try to make life easier for people with HIV.
I attend HIV workshops and forums and conferences. I speak to groups about my HIV experience. I read up on HIV and research and new developments and like many with HIV, I search for any good news, any new developments and anything current and new that I can share about my HIV—that is, share with anyone who asks or wants to listen.
I understand that HIV is old news. But is not ever forgotten by me, even for one day or night. It is part of me. It is part of my DNA now. It probably always will be with me, the rest of my life. I am coping pretty well. I am basically fine. I am living well most days and nights.
But the silence. Wow, that sometimes hurts a lot.
What three adjectives best describe you?
Compassionate, caring, concerned
What is your greatest achievement?
Being the best partner, son, brother and uncle I can be
What is your greatest regret?
Getting infected with HIV
What keeps you up at night?
If you could change one thing about living with HIV, what would it be?
Do more about the complacency we now face
What is the best advice you ever received?
Be kind to others and yourself
What person in the HIV/AIDS community do you most admire?
What drives you to do what you do?
Many things, including wanting to make some positive difference
What is your motto?
Be kind to me and others
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My partner of over 38 years (married July 1, 2013 in California)
If you could be any animal, what would you be? And why?
A cat...they are loveable and cuddly and love you unconditionally