Posted by: Randy Allgaier | March 18, 2009

10 Years With AIDS


On March 21st, 1999 my doctor admitted me to the hospital with a very severe case of Pneumocystis Pneumonia and on that day the HIV diagnosis I had lived with for nearly 15 years was “upgraded” to AIDS. I guess I had enough frequent flier miles for the upgrade.

Every year near the anniversary of my AIDS diagnosis I write a message of reflection and gratitude for the people who have touched my life during the year. I’m a fan of ritual and tradition. Maybe I’ve read too much Joseph Campbell, studied too much Jung or went to too many Episcopal eucharists , but the ritual and tradition of writing this message are important to my health and my spirit.

This year is a milestone: ten years- a decade. Back on that day when I was lying in my hospital bed with an oxygen tube and God only knows what other tubes and IVs in my body, I certainly did not think that I would be writing a note to mark that occasion a decade later.

The first lesson I learned was that I am a little crazy. The day before the AIDS diagnosis, on Sunday March 20th, 1999, I spoke at a rally – the first coming out of California’s new LGBT organization – California Alliance for Pride and Equality (now named California Equality). I had been one of the founders of CAPE and I was damned sure I wasn’t going to miss this rally that’s planning had been all consuming for me during the previous 3 months. My wonderful partner Lee was hesitant to let me go but he relented when I cried. During the weeks leading up to the rally- I was running fevers and my breathing was increasingly labored; but I paid little attention. When I convinced Lee to drive me up to Sacramento on the 20th, I made the deal that we would see my doctor the next day. I was so pathetic that when I walked up to the podium Lee had to help me walk. My doctor told me if I had waited another day or two I would not have needed her but rather a mortician.

I’ve learned a lot since that time. I’ve learned to listen more carefully to my body . The biggest concession to that was when I realized in March of 2000 that I just didn’t have it in me to work and retired from a job I loved at the San Francisco AIDS Foundation. I still do more than I should at times, but if I didn’t push myself a little I wouldn’t be me. Over the course of the last decade my health has been a roller coaster.

Drug regimens that worked for a while, regimens that made no difference, drugs that made me incredibly sick, bouts of fatigue that could go on for weeks, periods of depression, a case of bacterial pneumonia or bronchitis annually, basal cell carcinomas, a melanoma and a variety of other skin problems, a diagnosis of a long standing case of Hepatitis C with a disastrous round of treatment on interferon and Procrit, and many days where I just feel flat. This past year has been the healthiest I have had in 10 years. My drug regimen is working well and the side effects are basically non-existent. Clearly I don’t have the energy I once did- but not only do I have AIDS and Hepatitis C but I am over 50 and need to get my butt to the gym once in a while- so there are factors that lead to this state of low energy that are mundane and “normal”.

But what matters more than the trials of this disease and the drugs that have in varying degrees of effectiveness kept me alive are the people in my life and the projects that keep me busy. They challenge my mind, feed my soul and fill my heart. 

I’ve been incredibly fortunate to meet some of the best and the brightest people I have known thanks to my work on HIV/AIDS issues before my retirement and after. Before my retirement my former colleagues at the San Francisco AIDS Foundation, staff from Project Inform with whom I worked closely and a select group of activists who helped me form the organization that is now California Equality etched a special place in my heart. But I have been incredibly lucky to continue my involvement in the issues that I care about even during my retirement.

The only difference is that I don’t have to worry about losing a job if I can’t get out of bed for weeks. My work with PAWS, the HIV Health Services Planning Council and the Prevention Council, the CAEAR Coalition, the National Working Positive Coalition and now the Coalition for a National AIDS Strategy has not only been incredibly rewarding, even when some of the processes have been challenging and sometimes frustrating, but it has provided me the opportunity to work with some of the most dedicated, passionate, visionary, smart and strategic thinking people I have ever met. I am honored and humbled to be working with these awesome people. They make me a better person and keep my mind strong.

My friends and extended family here in San Francisco and throughout the country provide me with support and love daily. I cannot imagine my life without them. Often the distance between us causes many of these connections to be more through email than in person- but the support is clear. When Lee and I got married this past September the outpouring of love was overwhelming. Those that attended our ceremony in the Board of Supervisors Chamber touched me in ways that are difficult to express in words.

My family- my sister, my father and Janice, and the Allgaiers in the metro DC area have provided love and support. It’s hard to imagine life without talking to my sister almost daily. The emails and calls with my dad and Janice often lift my heart. When I’m in DC I treasure the limited time together that I, my aunt, my uncle and cousins are able to eke out. I know how fortunate I am to have family that love and care about me and whom I love dearly.

Last but not least are Lee and Darwin.

Darwin our beagle is a gift. Truly he is- we got him on our 10th anniversary and he changed our lives. During my down days and my sickest times he curls up with me and seems to instinctively know what I need. When I am very ill and Lee has the unpleasant role of nurse, Darwin provides an escape through walks and time together at the dog park. Darwin inspired my work as President of the board of PAWS for four years, twice annual beagle get- togethers that raise money for the Sausalito Dog Park, and a chapter in a book about gay men and their dogs that was published a few years ago. Darwin is my constant companion and when he was recently attacked by a pit bull in the dog park and was injured I was reminded very profoundly how much this little guy means to me and the depth of love I have for him.

Lee- my beloved partner and I will celebrate 21 years together in September. Lee provides me with calm and equanimity; he sustains my soul and fills my heart. His love helps keep me alive and his humor reminds me not to take all of this so seriously. He is my touchstone and as I say often, somewhat paraphrasing James Joyce, he makes my soul swoon slowly.

I would not have the rich and rewarding life that I am privileged to have if it weren’t for all of the people who touch my life in so many different ways. I have not only lived for a decade with AIDS but my soul has thrived during that time.

Thank you.

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