Decades ago, June was a time of hard but joyous work. I was a volunteer for Heritage of Pride, New York City’s Pride organizing committee. I somehow managed to snag the merchandising job, and it seemed like every waking moment in June was spent thinking about buttons, banners, and T-shirts.
These days, however, June has another, more somber meaning. June is also Alzheimer’s & Brain Awareness Month, and my husband, Tim, and I are again busy being advocates; but now we’re planning an Alzheimer’s awareness and fundraising event.
Two years ago, at age 54, I was diagnosed with early-onset Alzheimer's. The diagnosis was incredibly jarring. There were long months of deep sadness and overwhelming fear, but Tim and I quickly decided that we would do everything in our power to fight this disease, both for myself and for the more than 5 million Americans living with Alzheimer’s and other dementias. I enrolled in a drug study, and we both dove head first into work with the Alzheimer's Association.
I had learned about an opportunity at the national Alzheimer’s Association for people in the early stages of the disease and was delighted to be selected as a national early-stage adviser for the association. In this role, I am asked to share my story to help educate others about Alzheimer’s. So here goes.
It was in July 2016 that I announced to the world — or at least my world — via Facebook that I had been diagnosed with early-onset Alzheimer’s. For the first time, I shared with family and friends that I had long been worried about memory lapses and big vacant holes where my recent memories should live. I confided to my “followers” that I had tried dismissing these concerns — attributing these lapses to getting older and the stresses of work. But now a series of tests and brain scans had confirmed my worst fear — Alzheimer’s disease.
My journey to diagnosis was atypical to say the least. My sister shared with me an online advertisement looking for people concerned with memory loss for a drug trial. I called the number, passed the initial screenings, and was brought in for additional testing, including a cognitive assessment. I scored a 71 — well below the 85 or less needed to be admitted to the trial. The director of research for the trial let me know that there was likely something seriously wrong and I could be facing a diagnosis of early-onset dementia or Alzheimer’s.
I sat there quietly trying to absorb the news. When I got in the car with Tim to leave, the tears began to flow and the full likelihood of what we would face began to set in. Tim was by my side on that fateful day and has been there for me every day since.
Soon after my diagnosis, the man I had lived with for more than a decade agreed to marry me, despite what the future was likely to bring. It was a somewhat ironic moment: Although I furiously believed that gays and lesbians should have the right to marry — I had, in fact, spent 15 years working at the American Civil Liberties Union, many of those years advocating for marriage equality — I myself never really wanted to get married.
My diagnosis changed my feelings about marriage. I knew that there were going to be important medical, financial, and other life decisions that needed to be made, and I didn’t want to make them alone. I loved and trusted Tim and wanted his help. So we made an appointment with the Bucks County Clerk in Doylestown, Pa., and showed up for our big day. My sister, nieces, and nephew all arrived to surprise us and serve as witnesses.
We exchanged our rings — bought hastily at a flea market the day before (we forgot!). We capped the day with a celebratory lunch at a nearby Italian restaurant, before returning to our quote-unquote “normal” life, which has been anything but.
On our first-year anniversary, I wrote, “A year ago today, a very kind and loving man agreed to marry me even though we had just begun to confront my life-altering diagnosis of early-onset Alzheimer’s. He has been by my side for the last year through eight or so MRIs, a couple of PET scans, 12 drug trial treatments, and countless visits to the neurologist. Most amazing, he's been there for me through endless tears as I face the changes that have already taken a toll on my psyche and ability to move successfully through the world.”
I ended by thanking Tim for loving me and standing by me on this oh-so-scary journey. I said I would never, ever be able to adequately express my thanks and love, particularly as my ability to express my thoughts continues to deteriorate.
Yes, despite my fight and enrollment in a clinical trial, I feel myself regressing. While there are good days, there are many others on which I struggle for words, displaying blank stares when asked to remember one thing or another. I wonder how much longer I can work and drive. Loud movies and large gatherings of people overwhelm me and can cause me to break into tears.
So while I’m still an advocate at heart, I’m by necessity a more cautious and quiet one now. Luckily, I’m surrounded by family and friends and my passionate husband, who joins me in working for the causes important to my life. Without them, it would truthfully be difficult to continue moving forward.
PHIL GUTIS is a longtime activist.