Discovering purpose

In 1983 when my youngest child was three years old, I decided it was time to go back to work. I had interviewed with a private school for a position that I particularly wanted, paid what I believed I was worth, and wasn’t too far from my home in Miami. I felt certain that I’d be hired, and waited for the phone call saying so.

I waited for what I felt was a reasonable time. Anxious for an answer, I called the decision-maker, only to be told she was on vacation and wouldn’t return till the following week. In the meantime, a church friend heard I was job-hunting, told me she needed a clerical person right away, and if I wanted it, the job was mine. Although I wasn’t at all familiar with her organization, I eagerly accepted and agreed to start the following Monday.

Over that weekend, I received a call from the school – and a job offer. I told her that I had already accepted another position, and despite her plea to come work for her instead – along with an apology for not calling sooner – I told her that I couldn’t go back on a promise.

And so I began to work for – and learn about – hospice. As is often the case in life, I hadn’t an inkling how important my decision to take one path instead of another would turn out to be.

I had taken a first step on a Path.

At this time, I lived in a small S. Florida town – a largely conservative farming and military community – attended a church where the membership was mostly conservative, and had abandoned the more liberal political and social views with which I was raised. I had left the Democratic Party and embraced the “family values” of Ronald Reagan and the Republican Party. After all, how could I, a married church-going woman and mother of three sons, be against family values? Wasn’t that what it was all about?

One of the central tenets of these “values” was a rejection of homosexuality, and a belief that it was a choice rather than an inborn trait. Because of my faith, I adopted a hate-the-sin-love-the-sinner attitude, including the belief that it was an abhorrent lifestyle that, with love and mental health treatment, could be changed. I was sure that I had struck the right balance.

Soon after I took the job with hospice – which at the time was primarily medical transcription and light office duties – filing, answering phones, learning about end-of-life treatment for cancer patients – we began to see our first patients who were infected with something called HTLV-III, or the “gay virus.” At first it was just a trickle of people – always men – one or two every few weeks, but soon we were seeing more and more of them. At the time, transmission was incompletely understood, but it soon became apparent that “gay sex” was the culprit – although our medical staff carefully avoided all bodily fluids, including urine and tears, just in case.

Over time, I was promoted and given new areas of responsibility, first as office manager, and later as the lead secretary and trainer for the patient care team. Our hospice was growing and our patient census was being filled more and more with those with the “gay virus” – now known as AIDS. Part of my job was now “intake” – taking calls from physicians and families who were referring men with this disease. I heard stories that reduced me to tears. Parents who refused to care for their sons with the disease because of the stigma attached to having a gay child; families refusing to allow long-time partners to visit a child who was dying; or kicking that partner out of a house or apartment that he had shared with their child; young men being left to die alone; fathers refusing to pay for medication that would postpone the inevitable – one even saying, “You aren’t going to live long enough to pay me back.” Even when some tiny part of me kind of understood, the larger, more compassionate me couldn’t fathom how a parent could treat his or her child like this. I was deeply conflicted.

Another step on a Path that was filled with curves,
hairpin turns and boulders

It was during this time that I was approached by the principals of this hospice and asked to take the position of Program Manager for their newly formed foundation. Since it would mean not only a generous raise and more responsibility, but an opportunity to provide resources otherwise unavailable to those who were dying, I eagerly accepted.

As the onsite manager, I had a small staff and several volunteers under my supervision. Much to my chagrin, almost our entire focus was on people with AIDS, and all of my volunteers were gay men. Although I kept my beliefs about homosexuality to myself, I silently, internally, judged them. Over time, as I came to know them better – especially Jon, Ed, and Gregg, who were a committed threesome – I tried to determine from their stories why each of them had “chosen” to be gay. I was never completely satisfied with these internally constructed rationales, and soon gave them up. They were fun and funny young men, and we enjoyed our time together. We attended fundraising events together, planned and executed community activities and parties, and they invited me to their beautiful home for a delicious dinner. It was during this dinner that Ed showed me two antique dolls that his grandmother had left to him. He told me that he didn’t know what to do with them, nor did he know why she had given them to him. I admired them, and told him of my love for dolls and that his might have some monetary value. Several weeks later, he confided that he needed money for his medication and had taken the dolls to a dealer to see what they were worth. Sadly, they had no real value, but Ed was able to find resources through a friend. Two days before Christmas, I found a beautifully wrapped gift on my desk, and the three of them standing in my office eagerly waiting for me to open it. Inside were the dolls. A gift beyond measure, and more than 30 years later, Edwina and Jonelle still hold a place of honor in my home.

My Path was growing straighter,
the hairpin turns fewer.

This is all preamble. This was all preparation. My heart was being changed and I didn’t fully recognize it until, in 1988, my oldest son – who was then 18 years old – tearfully, agonizingly, painfully, told me that he’s gay. To say I was stunned is an understatement. This beautiful young man who was sought after by nearly every girl who saw him – how could he be gay? Our family went to church every Sunday and some days during the week. He was involved in the youth group. His friends were primarily boys and girls in our faith community and in his church-sponsored school. He knew – dammit, he knew – that homosexuality was wrong! But I held him and cried with him and offered what comfort I could.

And then came the guilt. What had I done to cause this? There was a popular belief at the time that an overbearing mother was a strong factor in the “choice” to be gay. Yes, I’m strong-willed and come from a matriarchal family. Was I too strong? Was I really overbearing? Domineering? All questions for my psychologist, who rushed to assure me that I bore no “fault,” that medicine was beginning to accept that homosexuality is inborn, that it’s the way the brain is wired, that it’s not an aberration but a normal behavior, probably determined at conception. Prayer, spiritual direction, and counseling did their work. Instead of rejecting my son as I had heard so many parents do in my work with hospice, I embraced acceptance. Nothing about him had changed; he was exactly the same person he’d always been. The only thing different was that I had a new piece of information about my child. Yes, it was an important piece of information, but that’s really all it was. I began to find peace in my heart and in my mind. I felt sad for the times that he’d heard me speak out against homosexuality; how painful that must have been for him! How many times had he wanted to tell me about a crush – as his brothers had felt free to do – but held it back. Had his heart been broken and he was afraid to seek the comfort of his mother? It was a hard time of soul-searching.

I began to recognize my Path. I believed I saw where it was taking me, that it had clarity.

Then I began to be afraid. AIDS was still a real danger, and I cautioned him over and over again about its dangers and how to be safe. At one point I even told him, “Don’t you dare ever tell me you have AIDS! You know how to be safe; you know what to do. Do it.”

In 2006, after I’d moved to Oregon, he called me from Miami to tell me that his partner, a man he trusted, had infected him. He had full-blown AIDS. I cried. I asked how he could have let this happen when he knew to be safe. He apologized. He told me that he thought his partner was clean. He assured me that he was on medication, that it was no longer an automatic death sentence. He told me that he’d been afraid to make the phone call because I’d told him not to ever tell me he had it. I felt that I’d failed him once again. I told him I was sorry, and that I love him. I would always love him.

This Path of mine had hit a rockslide.
I couldn’t tell where it was leading me.

A year ago, in the fall of 2019, Martin was diagnosed with liver cancer. It’s unrelated to his AIDS diagnosis, and has resulted from “cryptogenic cirrhosis,” which means they don’t know why he has it. Initial treatment appeared successful, but this past July a CT scan and an MRI revealed that it’s back with a vengeance. In the space of only eight weeks, it’s grown to the outside of his liver, metastasized to the lining of his abdominal cavity, and there’s no treatment possible. Anything medicine can do would only cause more damage to his fragile liver. He’s in pain all the time – sometimes bearable, but often not. He sleeps about 20 hours a day. The cancer is pressing against his other organs, causing difficulty breathing, and extreme discomfort eating. His food intake has dropped to about one-fourth of what it was even a month ago because of the feeling of fullness after small meals. Despite this, he’s gained about 30 pounds since his diagnosis. Fluid is filling all of his body tissue rather than pooling in his abdominal cavity where it could be drained. His official prognosis is less than six months. Privately I’ve been told he may not make it till Christmas.

Three days ago, Martin signed on with hospice.

A simple decision made nearly forty years ago set me on a Path that now has a clear destination. I learned. I grew. I accepted. I can look back now and see it clearly from where I started. The hairpin turns, the curves, the boulders and rockslides – all are gone. I don’t look forward to see where it will end. Instead, I live each day, I welcome each day. I treasure each day.

This has been, is, will be, my Path.
Unknown, unexpected but filled with growth and lessons.

I call my Path “Love.”