Posted by: Randy Allgaier | November 14, 2009

Lulled out of my Life’s Paradigm

Recently mortality has weighed heavily on my mind. Not in a morose way, but not in a detached philosophical way either. I’ve become more in tune with the reality of my mortality and that of those around me and how the paradigm of mortality I have built for myself to feel safe in both my life and my death is not an objective or subjective reality but a contrived mechanism to compartmentalize my life and create a tolerable scenario so I do not have to face those things that scare me the most.

A few events over the course of the year have caused me to reflect on the tidy little world that I created for myself so that I wouldn’t have to face my worst fears- being alone, old and poor.

But for me, and all of us for that matter (with the exception of the Gates family and the Walton family and some of the former Wall Street masters of the universe who probably don’t have to worry about being poor), there is always the possibility that someday we may be alone, old and poor.

I was recently asked by a friend why I have the dedication I do as an HIV/AIDS advocate. It was a generous question because there are many with more dedication than I. My answer was that I am motivated by anger.

But it made me think about my life and my choices and the life paradigm that I have built and how that paradigm has shifted.

As I thought about that a little more- I recognized that my anger is always a very thin veneer for what lies underneath- fear and loss. Fear of my own mortality I suppose. But I am not afraid of death, not because I believe in heaven or have any conception of an afterlife, but because the idea of “dust to dust” is intriguing more than scary and it is one of the most natural parts of life. The fear surrounding my mortality has been more a fear of leaving those that I love. The thought of leaving them is unimaginable. So I mask that fear with anger and address all of that with activism.

It seems odd that the very illnesses that would usually make one confront one’s own mortality- the illnesses that I carry in my body- are the very illnesses that are central to my advocacy- AIDS and Hepatitis C. True advocacy is a way to deal with anger, but I realized that it has a more subtle context than that for me. I can no longer do the one on one, personal advocacy that I did when I was a Shanti volunteer 20 some years ago – I don’t have the emotional stamina, but I revel in public policy and planning. I have found the perfect way to address my fears through a veil of anger and then channel that anger into the least emotionally risky activity.

Advocacy at the public policy level allows me to deal with HIV/AIDS and Hepatitis C but to detach from the personal emotions about living with these diseases most of the time. I get to work on the issues- but in an intellectual way that is guided by compassion and passion but keeps it away from the inner most issues that I personally face with the diseases. I’ve found a comfortable little way to ensure that I feel like I am being emotionally honest (the compassion and passion part) but really I haven’t been that emotionally honest with my own personal issues.

A few things happened over the past number of months that made me confront the mortality of those who I love. My beloved beagle Darwin was attacked by a pit bull and although his wounds were not life threatening it put his mortality front and center. It had been lurking in the recesses of my mind for some months because he is getting older (11 ½ years old) but I brush those thoughts out of my head. I’m like the little boy sticking his fingers in his ears and saying “LALALALA- I can’t hear you” to my inner voice. But that event confronted me more with the knowledge that he will someday die. It was not comforting and I don’t think that there will ever be anything comforting about it.

More recently Lee who is the love of my life, my partner and best friend of 21 years was diagnosed with prostate cancer. For a while I dealt with this news by going through the motions of what a spouse does- making sure we take care of everything he needs and to be by his side as he went to doctors’ appointments and to give him the opportunity to talk to me, or not, about how he feels and what course of treatment he wanted to take. I focused on him and will continue to do so as he faces the next steps of his treatment.

But now as the second portion of the treatment is about to begin- radiation- cancer is more than a word to me now, it is a reality. Yes I knew Lee was diagnosed with cancer and that was hard, but as he starts radiation- that cancer is not as abstract- it has found a way into our everyday lives that cannot be ignored. My medications do the same, but I’ve gotten used to that and there is a big difference between throwing a handful of pills down your throat than radiation- even if those pills can have miserable side effects. Radiation therapy is another level of disease treatment and I am slowly coming to the terms that cancer is in our lives.

I have had many friends who have said- “Well if someone’s going to have cancer, it might as well be prostate cancer”.  I cannot think of a less sensitive thing to say so thanks a bunch for that support. He has cancer and 22,000 men die of prostate cancer every year in the United States. And every time doctors say that his cancer is aggressive I cringe. So now I am coming to terms with Lee’s mortality too.

For 21 years I’ve lived under the delusion that I would not have to be the one to eventually be left alone. After all I have HIV/AIDS and Hep C. It was comforting in a twisted way. I have abandonment issues; we all do. Maybe mine are a little more acute because of my mother’s suicide, but they are significant. Before I met Lee the way I dealt with those issues was to push people away before they would leave me- not the healthiest way to deal with one’s feelings. Through my love for Lee I have learned that pushing people away is selfish and led me to be alone which ironically is my darkest fear. Now I can’t dream of pushing people away. But maybe the paradigm that I have set up is exactly that. I can  begrudgingly accept living a life where I die first, but even contemplating one where I am left alone is intolerable. Isn’t my comfort with dying first analogous to pushing people away before they leave me?
So I no longer have the intellectual constructs in my life that I have built to protect my heart.

I don’t dwell on the possibility of my mortality, nor on Lee’s nor Darwin’s for that matter. But on drizzly, grey, chilly November San Francisco mornings at 5:30 before the sun comes up, those thoughts can take hold. That’s especially true when you look over at the man who has caused your soul to swoon and the dog who has captured your heart slumbering peacefully in bed and think about losing them.

I am less scared though. Oddly, by occasionally thinking about it, I am able to address it better both practically and emotionally and that is liberating. I’m not paralyzed by fear.

Too often we are motivated by fear. Clearly that is how the right wing has manipulated public policy debates for eons. I remember the resolve that I had when Lee and I travelled to Europe on September 20th, 2001- just 9 days after 9/11. Friends and family told me that I was nuts that they would be too afraid to travel. My retort was that ‘s what terrorist do- they terrorize you into paralysis and through fear cause you to act in ways that compromise your convictions, your integrity and your values (torture comes to mind)

Am I afraid of death? No, Am I afraid of life alone? Yes, but I am beginning to be less terrorized by it and I am no longer paralyzed by the possibility. In my own personal way, each and every day, I try to better understand myself- what motivates me, why I do the things that I do and have the feelings I have. I now feel that my soul knows what I knew intellectually – motivation by fear is toxic and that confronting that fear is oddly liberating.


  1. Wow … that’s powerful stuff.

    I’m very sorry about Lee. I’ll be praying (sending positive thoughts, well-wishes, think of it as whatever is comforting).

    That’s a great point about fear. I’ll be steering friends to read this. (I apologize in advance if any of them make inappropriate political shots!)

  2. I would only leave out the penultimate “oddly.”

    Positive thoughts headed your way.

    Oh, and FTN.

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