I am dying, and that’s okay: an extraordinary life-history of love and accomplishment
My full-body paralysis is accelerating. I have come to acceptance of my eventual fate. Here is why:
Dozens of doctors, nurses, specialists and other professionals have done their very best for me. Whatever medical predicament that has shown up in my life has proven to be so rare that it can’t be identified, cured or slowed down.
So be it. I can’t keep fighting it, because it just stresses everyone out, and doesn’t improve a damn thing. The last year and a half have proved that.
We all die eventually. If I were to be hit by a truck, I would die quickly. I would hate to go away without hearing from my loved ones first, and without telling THEM how much pleasure it has brought me to know them.
Life stuck at home would be boring if I was alone and friendless. I am as far from alone and friendless as any human could ever be. My loved ones (particularly my husband of nearly thirty years) have been vigilant, loyal and attentive. Every day is an exercise in gratitude and blessings.
Now that so MANY fine folks know what is going on, I get love all day, every day. It’s a little overwhelming, but I am coping. I’m going out with a bang, but one that just keeps happening over a stretch of months.
I have never been motivated by awards - I have always been determined to achieve RESULTS, over and over, for my entire adult life. Well, I can’t do that any more, so now it’s time to allow people to give me loving approval, blessings and awards, big and small. I continuously get emails, phone calls and texts, with folks checking in, which thrills me, and fills my days with loved ones sharing kindness, and generosity of spirit.
We are completing our relationships with each other, while we have the chance. What could be better than that?
If it was just the QUANTITY of friends that was showing up, that would be pretty darned nice. However, the folks checking in are examples of QUALITY that have brought richness and deep, meaningful satisfaction to my entire life. Absolutely nothing else could bring so much joy to my existence. We are loving each other for the very best reasons.
I am glad to say that my love for so many people has been returned at full measure, all along. My natural, affectionate ways have made me show up with the personality of a big, sweet Saint Bernard puppy.
That was because I had made a conscious decision to be that way, all of the way back in 1976.
At that time, I was a desperate young leather punk who had survived a violently abusive childhood, and had attempted suicide twice already. I was heading downward fast, until the day that I asked my oldest brother what I had been like as a small child.
He told me that I had been the sweetest child ever - Whenever there was something fun going on, I was right in the middle of it. If someone was sad, I was the first one to comfort them. If it was time to dance, or to sing loud and proud, I was the one who got the party started.
In the course of that long-ago, brief conversation, my life transformed instantly. I made an adult decision: the only path out of my deep despair was to be true to my loving, open-hearted and generous nature. I decided to treat everyone as my favorite sister or brother, and to always see the majesty and worth in everyone. I have never regretted that decision.
Shortly after that, I found my Tribe - I was surrounded with love, respect and mentoring in the gay leathermen's community. While I was in my early twenties, I interviewed men who had been together since the 1920’s, 1930’s and 1940’s, asking them how they had managed to make their love last. I questioned hundreds of older, wiser men, asking them about interpersonal dynamics, finances, sex, coping mechanisms and everything else that could help me to be a better man.
Then, things got so very much worse, just a few short years later. The men in my life started dying, and FAST. The men who had meant so much to me were the first to go, and I felt so incomplete - I had never had a chance to tell them how much they had impacted my life for the better.
At that time, nobody knew how AIDS was spread. Was it transmitted through saliva, or touch, or could it be breathed in through the air? We were all terrified. The tightly-bound community that had shared the 1970′s rocket-ship to the stars instantly crumbled as we ran away from each other in terror.
I showed up at the hospital to visit a young man who had changed from a thriving, lively 21-year-old into a dying man in only three weeks’ time. Nobody would go near him or comfort him. The nurses and doctors wore those full-body Hazmat suits, IF they even dared to enter his hospital room. Most didn’t.
My young friend was dying fast, and he knew it. In his fear and despair, what he wanted more than anything else was to be HELD, but nobody would come within fifteen feet of him. As I stood in the doorway, he cried and cried. I made a fateful decision that I have never regretted. I crawled into that cold, sterile hospital bed with him, and I gave up my fears. I held him, loved him and comforted him.
This shocked the shit out of the medical professionals, but I didn’t care. I was there in that same hospital bed, holding him on his final day, telling him “It’s okay to go now.” After he died, I kept going back to the hospital again and again, and did the same loving service for around fifty men as they were dying. I knew none of them before I came to them - they were all my brothers in need, and I had pledged whatever was left of my life to bringing them comfort when they needed it most.
While this was going on, I was attending two or three funerals a week, for years. I stopped counting at 140 friends and loved ones who died in my life. This left a terrible wound in my heart, and I suffered terribly from Survivor’s Guilt. For years after, I stopped allowing myself to have friends, because I couldn’t bear the pain of investing in someone, just to watch them die. AGAIN. I had burned out.
Then, one day, I realized that I couldn’t hide out from life any more. My life had led me to the point of taking on leadership in the kinky leather community. Nobody loved us, wanted us or trusted AIDS-ridden, kinky scum like us. So, _I_ would love us.
I started creating thousands of “Guaranteed Safe Spaces” - social events that were kindly, sweet and manifestly diverse. I was determined that every man who showed up would KNOW that he was welcome, valued and would get what he needed most - affectionate brotherhood. At that point in gay leathermen’s history, sex was easy to find, but true friendship and long-term love was difficult to find and maintain - We were too wounded from loss, and fear of intimacy.
My goal was to end the AIDS Holocaust phase, and to bring on the NEXT phase, which was kinder, contained more variety and was downright joyful. I worked every day to make this happen, until I couldn’t any longer.
My physical limitations have caused me to hand away the next phase to those who have gladly taken on the job. I am surrounded by those men and women who have brought their courage, heart and idealism to the challenge of uniting us all in the best expressions of ourselves.
In the old days, San Diego’s kinky community was a toxic stew of bitterness, competition and zero-sum philosophy. Decades later, we are known worldwide for having the lowest level of cynicism of any city on earth. I like to think that I had some small part in San Diego’s well-earned reputation for sweetness, diversity and cooperation. It takes a village to make that happen. We all have to agree that we will settle for nothing less, and we DO.
I can rest now, knowing that the bright, eager and idealistic faces among us are taking on new challenges for the new days ahead. I know these folks, having intensively mentored and befriended many of them. I trust their bountiful natures, their true hearts, and their admirable character. I’ve seen our worst days, and after so many years, I see that our best days have arrived.
At this end of my life, I am endlessly grateful for the true friends who have brought me the deepest satisfaction. I never got around to making my first million dollars, but that was never the goal. In my opinion, I am richer than I ever could have imagined. Yes, I have had challenges and setbacks, but with so many folks standing shoulder-to-shoulder with me over the years, we are co-creating the possibility of younger generations standing upon our shoulders.
I can ask for nothing better. My work here is done.
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