I was going to write one of those clever end-of-year round-ups of all the good and bad things from 2021. And then I abandoned my draft a few paragraphs in. For how does one even distinguish between the embers of our seemingly never-ending dumpster fire of life in modern-day America and the pixie dust of magic that encircles us all if we slow down long enough to take the time to see it?
Instead, I’m going to address a question I’ve been asked many times since my book, My Unexpected Life: An International Memoir of Two Pandemics, HIV and COVID-19 was published in October.
Why did I write my memoir?
Because my story was eating away at my soul.
Personally, I needed to write this book and tell my story because nobody else could.
In the fall of 2008, I became very ill and HIV began to ravage my immune system. All the numbers went in the wrong direction and I knew that without starting medications–which I’d not previously needed–my body would begin to fail. All of this happened rapidly. At the same time, by chance or maybe not, I was helping close up the estate of a dear friend who’d died unexpectedly of a brain aneurism at the age of 32, and documents from her attorney arrived regularly at my home. She hadn’t had a will and things were complicated. Aren’t they always. She became more present in my daily life in death than she had been when alive just as my own mortality loomed closer with a more visceral urgency than I’d previously experienced. Coupled with my inability to think clearly in the most literal sense made for one of the most surreal periods of my life. Like climbing out of a storm cloud.
I wasn’t particularly afraid of dying, indeed, probably not afraid enough. But if I am one thing, I am ever the pragmatist. I knew I had a lot of unfinished business to attend to. I needed to update my own will as a first-time property owner. And so many other mundane tasks that I didn’t want left to someone else who might have to clean up after me should I leave a mess of paperwork and unwashed laundry.
But a strong contender for not allowing HIV to consume me was that I felt compelled to tell my story. Beyond being pragmatic, I am extremely stubborn and when I set my mind to a task, I will see it through. This book became my mission; encouraged by some, dismissed by many, but one I would not let go. There are many–too many–women living with HIV, but far too few of us have our stories told. Even fewer told by our own pen in our own voice. I knew that unless I got my unique story onto paper and out into the world so that others could learn from my experiences, mistakes and all, then my soul would not be at rest.
Once my health was back to a semblance of normal, I began writing in earnest. I took classes here and there. In-person when I could. Online when I started traveling again for work. Eventually, I applied to writers retreats and workshops, and, ultimately, I entered and completed an MFA program. Later I would shift careers to become a writing professor and found the art of teaching to be education unto itself. Through these various stages of finding a community of writers, I honed my craft and discovered like-minded individuals who supported me through the process and made sure I didn’t give up.
Politically, once I wrote the memoir, despite my many inclinations to give up and shred the manuscript to use as stuffing for crafts I don’t actually do, I persevered. As mentioned earlier, the voices of women living with HIV are far too rarely heard or read, even today in 2021/2022. And my voice, or more specifically my experience, was one that I wanted to make sure was shared because all of our experiences matter. All of our contributions to the fight to mitigate this pandemic matter. We’ve all been in this together, and all voices matter.
As the first openly HIV-positive staff member at UNAIDS, I helped fight for a seat at the table for people living with HIV and I hold a tiny piece of history in this pandemic.
This fight was started long before me in the early 1980s and continues to this day, to ensure that people with HIV are included at all levels of decision-making bodies of entities that impact our lives. From grassroots organizations to pharmaceutical companies, to national governments, on up to multi-national organizations like the United Nations, and everything in-between. That fight allowed me a seat at the table on the governing board of UNAIDS before I joined their staff. All of these firsts matter. And so I wrote my memoir and I made sure it found its way out into the world. For myself, but also so that others might find themselves on the pages as well for my experiences reflect those of so many others whose stories you may not have heard. At least not yet.
Emotionally, the need to write my story was burning into my soul. Now that I’ve released it for all to read, I feel freer. It is still my story. I own it. But it is also now our story because you can share it and learn from it and enjoy it, or find it horrendous, or funny, or anything you like. But it will no longer consume me whole. I’ve extracted that beast, shaped it into something beautiful and worthwhile in the hopes that my experiences will be of service to others. To be sure, I am a writer and have many other stories, but this one, in particular, needed to be told.
And, socially, as a matter of civic responsibility, words live on, much longer than we mere mortals. So, with luck, young readers and future generations will be able to garner something from the experiences of the HIV pandemic, and of women within our history, and put that information to use. Perhaps, too, the links between COVID-19–which we’re still very much in, sadly–and HIV will become instructive whenever we emerge into whatever comes next. As I am so blessed to learn from writers who’ve come before me or are my contemporaries, I hope that others can learn from me. Even if one line registers and helps someone feel less alone, all of these years put into writing this book have been worth it.
This is why I wrote my memoir.