As a long-term HIV survivor, I have realized that it’s becoming increasingly less likely that HIV will kill me. I just came from my regular doctor checkup last week. After 30 years carrying HIV, I am undetectable and have 937 T cells.
I can remember when 937 T cells were enough for four people. I can’t help but think about those who didn’t make it. I am also reminded of the countless family members who lost precious loved ones. We were not allowed to have “spouses” then. The best phrase hospitals, doctors and clinicians came up with was “significant other”. Your dying life partner, often your only family was referred to as your “significant other”.
It’s 2017, and the reality of HIV/AIDS has dramatically, indeed, exponentially changed. The availability of new treatments, the widely-accepted concept that “HIV Undetectable = Untransmittable”, the advent of “PrEP” have all contributed to the overall perception that we are indeed in a much better place regarding our HIV status than before. All of these variables have painted a completely different picture and have changed the face of HIV/AIDS in the 21st century.
Why am I still here? What has given me the strength and endurance to survive this plague? Why me and not so many others? I was no different from others that lost their battle. Like most other HIV positive people in the early 90s, I thought I was going to die soon. I partied, spent my money frivolously, lived fast and expected to die soon and hoped it would not be a painful death. That was the gloomy nature of our HIV/AIDS reality in the early 90s.
When I tested HIV positive, I was already in a relationship with a man who turned out to be HIV negative. In those days, the fear was intense and couples with different HIV statuses confronted many serious and crippling circumstances that were all related to the constantly present fear of dying soon.
My relationship with Richard lasted eight years. It was bumpy, confusing and in many ways out of control: “We can’t share the same shaving stuff. Don’t touch my teeth with your tongue when we are kissing. My teeth might cut your tongue and you might bleed”. Pretty romantic, right? Fear brings out all kinds of stuff.
Those times were difficult for both of us. Richard was very supportive, just scared and I could relate to that feeling very well. In 1997, after eight years with Richard, I met Denis. We’ve been together now for 20 years, and married for five. “Husband and husband” is a far cry from the “significant other” days.
It is here where I am going to answer the question I asked before: what really gave me the strength to survive this epidemic? I’m going to go out on a limb and say that it was Denis, my husband Denis, who has kept and continues to keep me alive.
In the year 2001, I was diagnosed with progressive neuromuscular disease called “Inclusion Body Myositis” (IBM). This auto immune condition, causes chronic inflammation in my muscular system, ultimately deteriorating and disintegrating the muscles. By 2005 I was forced to retire from teaching and by 2012, I was full time in a power wheelchair. According to my doctors, IBM is not at all related to HIV.
The steady deterioration of my body led to an equally steady struggle with increasing depression. Slowly but surely, my arms and legs lost muscle mass thus making my basic daily chores significantly more difficult and in some cases wholly impossible. Before I knew it, Denis was feeding, dressing, bathing and grooming me.
As my body slowly deteriorated, it became increasingly difficult to deal with the equally debilitating depression that was leaving me increasingly helpless, and sometimes even hopeless. But I do deal with it on a daily basis. I do not and will not give up.
I sometimes wonder how I would have been able to deal with this new disease had I not been dealing with HIV for all these years. So, for the record, “Thanks HIV”. So, one more time: what really gives me the strength to survive my daily health struggles? The love and commitment of my husband Denis is the answer.
Denis is not new at this whole issue with HIV. Denis tested HIV positive in 1985 when AIDS was “gay cancer” and HIV was “HTVL3”. He has been HIV positive for more than half of his life. He nursed and cared for his lover of 8 years who died of AIDS in 1988.
When my stamina is down, he lifts me up. When my arms don’t work, he gives me his arms. He feeds me, he feeds my body and my spirit. When my days look dark, he would (like the song, thanks Debby Boone) “Light Up My Life”. Interestingly so, by seeing him deal with my reality as well as his own, I’ve learned to validate life again. I am reminded what it is to love, laugh and live!
This piece is to give thanks to my husband, my friend and my lover who became my caregiver, indeed, my partner in this life journey.
I totally understand now the real meaning of love. The healing power of love, the eternal blessing of knowing that somebody out there, whether is a family member, friend, doctor, neighbor, or spouse, are sharing with us their most beautiful possession. The gift of time, the ability to appreciate it and the conviction that today must be lived to the fullest because today, is all we have.
Thank you to all the hidden heroes behind the scenes, thank you to all that give the best they have to enhance the quality of life for those of us LIVING with a degenerative disease. Let’s not lose hope, there is always a hidden blessing on its way. Only the strong survive, find that strength anywhere you can. Maybe the stronghold is right next to you.