60 Birthdays and AIDS at 30
This piece all started after reviewing a few of my e-mails from different AIDS organizations reminding me that it is 30 years since the AIDS epidemic began and how i’d come to realize I had lived with it nearly half of my life here on earth.
What makes this so remarkable to me is that i’m still here, relatively healthy, working the same job i’ve been working since I got out of college. Thanks to the blood, sweat, and tears of many advocates of the 80’s and 90’s, some of whom i’ve met along the way and many more whom we have unfortunately lost, my current wife and I are still thriving on our ADAP provided drug regimens. We are maintaining a comfortable lifestyle, including an ability to enjoy our annual mecca to the ocean for much needed rejuvenation, and the endless joy we share while spending time with our 5 grandchildren, something neither of us thought we would ever experience.
On a wall in my living room is a framed poster of a NAMES PROJECT AIDS MEMORIAL QUILT display from Utica, NY in October, 1995 when a handful of survivors presented a panel dedicated to members of our HIV/AIDS support group, SOLIDARITY, including the name of my former fiance,Joanne. What an emotional roller coaster those days were, back when so many people we came to meet in that fireplace room of the local unitarian church were having their lives cut way too short. The obvious question then we never dared ask out loud was “when was it going to be our turn?”
I met my current wife, Cindy, in that room 19 years ago. There came a time when, what started out as a group of some 35 people, regretfully dissolved into a handful of survivors. Even our facilitator was among those we lost. But something also became very apparent to those of us who were still alive. We were surprisingly healthy, and therefore, thoughts of a life living with HIV began to dominate our discussions around the circle. Cindy and I got married in the fireplace room soon thereafter.
One Sunday we survivors got together to make that panel we presented to the NAMES PROJECT, to honor those who shared their stories, fears, and dreams of what was never to be. Cindy and I even made the trip to Washington DC to see our panel become a part of the main body of the QUILT at its’ final formal display in 1996.
As I sat on the grassy mall next to our panel I couldn’t help but feel a sense of validity knowing that Joanne was finally together with everyone else who had fallen to this dreadful disease. She too was a victim of the silence which fell over our nations capital during the 80’s, inside that same building which was no more than 500 yards from where her memorial was now displayed. At least that president came to witness our fallen warriors.
I seldom think back to those days anymore, preferring to distance myself from the nightmarish events of a time many of us still living hope we never have to see again. I decided instead to follow in the footsteps of those who helped to create a better life for those of us who continue to live with HIV/AIDS, and to try to inspire others to do the same.
However, based upon the recent actions of certain members of Congress, those days could needlessly return if their agenda of reduced funding for HIV/AIDS treatment and services, as well as to effective prevention programs is passed through congress.
What a disastrous step backward that would be, especially at a time when the current administration has unveiled a long overdue National AIDS Strategy, and recent studies are recommending earlier treatment as an effective prevention method. Ever expanding ADAP waiting lists across the country are making this prospect increasingly unrealistic.
Back in 1989, on the same day Joanne passed away from AIDS, I learned my dad was diagnosed with ALS (Lou Gehrigs disease). He was to die a year later. Over the next 20 years many of us living with HIV/AIDS had benefited from billions of dollars pumped into state and federal research, treatment, and aids related service programs. Over that same period there was little to no money earmarked for ALS research. As a result, the medical community has yet to develop one effective method/medication for treating those living with Lou Gehrigs disease.
Don’t think that hasn’t left a lasting impression on my soul as I enter the 21st year of a fund-raising golf tournament I had organized in my dad’s memory. Although we will eclipse this year over $1 million raised for the only ALS community based organization in northeastern NY, it pales in comparison to what monies congress has appropriated for AIDS over the same period of time.
The point being, if Congress were to open their purse strings to the scientific leading researchers of our nation, maybe other diseases might benefit from the urgency for a treatment that was once shown for AIDS, instead of looking to cut funding from proven programs and services which return healthier americans back into the work force, and less of a drain on our once vibrant economy.
Rescinding our recently passed national health care law is another example of government gone bad, especially when doing so becomes a vote to deny access to health care for all american’s.
In honor of those who fought so hard for what now keeps us alive and healthy, we must take the time to remind our legislators to do what is right for ALL who are in need of treatment for what ails them. For in the long run it will save our country billions of dollars in unnecessary health care costs, and quite probably help to prevent the future spread of HIV.
In the meantime, I will continue to count my blessings and try to provide for those less fortunate than I. Somehow I believe Joanne and my dad would have expected that of me.
Some might say that is why i’m still here to enjoy watching todays Belmont Stakes, listening to music of a happier time when there was life without HIV/AIDS, and making the best of a rainy Saturday by sharing my thoughts with fellow survivors of HIV/AIDS.