Winston Johnson provided Compassion & Choices his story in October of 2020.
I have had prostate cancer for over 20 years and hormones have kept me alive, a very rare length of time for that treatment. When I started having problems in fall of 2019, I was sure that it was my prostate cancer, but it turned out to be stage 4 bladder cancer. I was immediately referred to palliative care – I realized in that moment that I was facing a really bad situation.
Doctors offered to perform surgery, but I knew I didn’t want to go through the agonizing recovery after having had surgery in 1997 for my prostate cancer. I was much younger then and it was still horrible. Two months after that surgery, they discovered the cancer was still present. At age 79, I did not want to endure that. Not being in pain is more important to me than living another year.
I’ve had such a good life, one full of love and meaningful activism. In April of 1968, I met Coretta Scott King and witnessing her continuing the fight for civil rights, independent of Martin Luther King, Jr., inspired me. My partner, Leon, and I helped fundraise for the King Center and developed a loving friendship with Mrs. King.
In 1983, Leon and I got involved with the Human Rights Campaign, the largest national LGBTQ civil rights organization. During the time and being in the South, it did not feel safe to be openly gay and, in fact, I almost lost my job because of my sexual orientation. In 1986, I finally came out to Mrs. King. I said, “There’s something I should have shared years ago. Leon and I have been a couple since 1964.” She graciously responded, “I knew you and Leon loved each other years ago, but I knew we’d talk about it whenever you wanted to talk about it.” As the HRC was starting to plan their 1986 gala, I asked if she would be willing to be the featured speaker for the event to speak for gay rights and, without hesitation, she immediately agreed.
Now my political activism includes the fight for the full spectrum of end-of-life options. Leon, my partner of 42 years, died in 2006 of Parkinson’s and I never expected to reach this age myself. At my age, I’m not afraid of dying. I just want to avoid the pain. I hope my story will inspire Georgians to speak out in support of medical aid in dying.
I’m terrified of being in pain, informed by an experience I had a few years ago where I was in excruciating pain. All at once I couldn’t urinate and I was in immense pain so I was taken to the emergency room. They inserted three different catheters and still nothing came out. It took several hours before any urine came out, and even when it did, it was extremely painful. Throughout all of this, the doctor refused to treat my pain appropriately while I cried and writhed in pain.
My wishes are to avoid pain at the end of my life at all costs. But, I don’t want to move to another state to access the option of medical aid in dying. Georgia has been my home for over 50 years. All my friends are here. My whole life is here. I couldn’t possibly move away. I’d rather be dead than to have to move somewhere and wait. I am angry that we do not have this peaceful option in the South. Of course, we are always last in everything.
I’m counting on palliative care and hospice, when the time comes to enroll, to keep me as pain free as possible. I realize, however, that at some point I’m probably going to endure horrible, inescapable pain. I’m frustrated that I can’t just say, “Ok y’all, I’ve had it. Let me say goodbye to everyone and put an end to this suffering.” The option of medical aid in dying is just so civilized. I would be infinitely happier right now if I knew that it was up to me when it gets to the point that I can’t handle it anymore that I could just go. I should be able to finish my life without being in excruciating pain. It should be my decision.