Posted by: Randy Allgaier | March 15, 2010

11 Years with AIDS- An Anniversary of Steel


On March 21, 1999 I was diagnosed with AIDS after more than 13 years of living with HIV. That was eleven years ago. Every year at this time I recognize this anniversary with a reflection that I share with my friends, family and colleagues.

The 11th Anniversary is the “Steel Anniversary”- less glamorous than silver for 25 or gold for 50, but I cannot think of a more apt metal or metaphor for this anniversary.

On that day in March eleven years ago, I never thought I would be alive today; I never thought I would be working again; I never dreamt I would be planning my 22nd anniversary with Lee or celebrating our 2nd year of marriage; or having our 12th year with our beloved beagle Darwin. Steel- is strong, hard and implacable. It evokes thoughts of determination and strength.

Yes, indeed 2010 is a year where I am relying on my internal steel to face a renewed future of hope. But steel is an alloy that’s structure is dependent on a precise and exact combination of elements to create a strong and durable metal.

In my case that unique combination has come from a synergistic constellation of good fortune, inspiration, colleagues, friends, and family.

I have definitely had good fortune. I have a remarkable doctor and excellent healthcare; something that nearly fifty million Americans do not enjoy. I am not going to turn this reflection into a political treatise- I’ll just say that I have what I believe should be the right of every American- good healthcare where my relationship with my doctor is at the center. Oh yes- I have Medicare- a government run program that puts a premium on the decisions my doctor and I make. I am fortunate that as a disabled person who has been a Medicare beneficiary I can continue accessing Medicare by paying into it now that I have gone back to work. I will not have to rely on the vagaries of the private insurance industry and its intrusion on my relationship with my doctor in order to protect its bottom line.

I have inspiration. The work I did before I retired in 2000 was one of the great joys of my life. Having the opportunity to be a small part of effecting positive change for people living with HIV/AIDS and have it as my career was an amazing privilege. Over the past 10 years I have been fortunate to be continually inspired by the social justice and healthcare access issues that are important to me and to find ways to involve myself in that work while being “retired”. Back in the early ‘00s I had the good fortune to work on Medicare issues for people living with HIV/AIDS and got to know a colleague who helped guide my work on that issue and I count him as one of my mentors. That colleague is Jeff Crowley. Jeff is now President Obama’s Director of the White House’s Office of National AIDS Policy and he is one of the smartest people I have met doing this work and is a down to earth and nice guy on top of it. Jeff is just one of scores of amazing people that I have met. The work has been part of my life’s inspiration but the people doing the work are those that are awe inspiring. My colleagues in the CAEAR Coalition, the National Working Positive Coalition and the Coalition for a National AIDS Strategy have kept my brain nimble and my passion invigorated and they inspire me every day through their passion, their remarkable intelligence, and their generosity of spirit.

Then there are the San Francisco HIV Health Services Planning Council and Shanti. These two entities have woven their way into my life in pretty significant ways for many years.

About eight years ago my friend and former San Francisco AIDS Foundation colleague Laura Thomas encouraged me to think about becoming a member of the Planning Council. At the time, I thought I would rather chew on nails- the politics, the array of strong personalities (yes, I know I am no shrinking violet either) – I wasn’t sure I wanted that stress in my life. I had left work because of stress and didn’t want to dive head first into a situation wrought with tension. But I was appointed to the council and over the years the work drew me in. I recognized the amazing work of this group of people who commit themselves to maintaining the best possible system of care for people living with HIV/AIDS in San Francisco, San Mateo and Marin counties at a time of diminishing resources. A wide array of people with an amazing diversity of experience and backgrounds coming together to make difficult decisions. Community planning- it can be messy, but by God it works and it is a beautiful thing.

It was at Shanti 22 years ago where this then 30 year old newcomer to San Francisco decided to volunteer so I could connect with my new community. It is where my passion around HIV/AIDS began to move outward from my own internal battle with the disease. It is where I found my center in San Francisco. A spark was lit at Shanti 22 years ago that lit the candle that has guided my community work for the past two decades. Another spark was ignited at Shanti 22 years ago as well- that’s where I met Lee and some of the most important people in my life.

Could I have ever imagined ten years ago that the inspiration provided by both the Planning Council and Shanti would converge with my good fortune of good health to open the door to a new chapter in my career? Once again I am able to do the work that I love as a profession. I can do the policy and community planning work that I adore with the support of an agency that it fundamentally tied to my life. The Council has given me the opportunity to have every role possible in its organization- a member, a committee co-chair, a workgroup co-chair, a council co-chair and now director. Shanti has done the same- a volunteer, a board member and now staff.

As I embark on this new chapter of my life and the newest exciting challenge in my career. I am supported by remarkable friends, family and colleagues.

I mentioned earlier that I have had the good fortune to work with people with remarkable intelligence, commitment, passion and generosity. That good fortune continues with my colleagues on the Council, my colleagues on the Mayor’s Hepatitis C Task Force, those that work in government both in San Francisco and in Washington, the federal and local advocacy communities- especially my fellow advocates living with HIV/AIDS and/or Hepatitis C, and my amazing co-workers at Shanti- both agency wide and the Council staff.

Friends are at the cornerstone of my support. Throughout the nation I have met compassionate and loving people because of my advocacy work and because of my beagle Darwin (yes- my beagle has brought me scores of loving and wonderful friends- dogs have a knack of doing that!). I have also reconnected with some amazing people from my years at Cornell and prep school from all corners of the globe. The support of all these friends has sustained me. Some of my friends are gone, taken too early by a disease that I have been fortunate enough to survive. I carry their memory in my heart. For six of these friends from New York I am the sole living caretaker of the flame of our collective friendship- a responsibility I am honored and humbled to have.

My family gave me many of the building blocks of my life. My parents instilled a drive to learn and from the emotional tumult that is part of every family I was fortunate enough to develop a sense of duty, compassion and social justice. My sister Linda is one of the strongest sources of support in my life and I love her dearly.

Last but not least there are Lee and, of course, Darwin.

Darwin, our nearly 12 year old beagle, has not only provided me with calmness, unconditional love and affection but he has brought into my life people who are dear to me and an organization, that touches my heart- PAWS.

Lee is simply the love of my life, my best friend, my confidant and to paraphrase James Joyce, as I oft do, he makes my soul swoon. His battle with prostate cancer this year scared me and completely shifted the paradigm that I had assumed for my life. Like my battle with AIDS and Hepatitis C, Lee’s battle with prostate cancer was another challenge that we have faced together that has strengthened us individually and as a couple while we travel on our lives’ journey together. Lee is my bedrock and he is my joy.

The last eleven years have not been easy. Many of those years were hell and at times I didn’t think I would make it. But now- at this moment- I feel like one of the luckiest people on earth. I know that my good fortune, the steel that I have, is not available for everyone. Many have died, a number of them were good friends who remain in my heart, and some of them were personal heroes. Too many people both in this country and worldwide are not availed of the healthcare and opportunities that have brought me to my current fortunate circumstance. That is unfair and it should not be and none of us should ever accept it.

Nearly a quarter of a century ago I was diagnosed with HIV, eleven years ago I was diagnosed with AIDS, ten years ago I retired for health reason, three years ago I was diagnosed with a long standing case of Hepatitis C and 2 weeks ago I returned to full time employment. What an amazing ride.

On this eleventh anniversary of my AIDS diagnosis- that day I was admitted to the hospital at the brink of death- I have a renewed life and renewed commitment to those that do not have the opportunities that I have had.

Thank you for being part of my journey. None of us can get through life alone. I am blessed with a great abundance of support and love. You are the component parts of my life’s steel. Thank you for the important place you have in my life and for, in your own way, making this world a better place.


Responses

  1. Congratulations on reaching your 11th anniversary and wishing you many more healthy ones. I am in my 29th year of living with HIV and 20th year of living with AIDS so I did not expect to still be here either. But because of activists like us, others have the hope of a better tomorrow and the newly diagnosed have the hope of living a “normal” lifetime.
    Wishing you health, hope and happiness.
    big bear hug,
    Dab and Dab the AIDS Bear


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