John L. Lipp is a husband, doggie daddy, uncle, writer, speaker, nonprofit leader, advocate, concerned citizen of the world, and a person living with Parkinson's disease. His newest book, "The Monsters Anonymous Club: Extinction" was released in February 2019. In recognition of his lifelong commitment to a more humane world for people and animals, he is the recipient of the Shanti Project's 2019 "Dede Wilsey Champion of the Human-Animal Bond Award."
After I was diagnosed with Parkinson's disease at the age of 49 in 2015, I made a point of telling everyone. The waiter, the Lyft driver, the guy stuck next to me on a six-hour flight, the new neighbor -- none were spared. I referred to it as my second coming out, a not-so-veiled reference to my coming out to my family as a gay person at the age of 16. (A rather bold move back in 1981!)
I felt the need to own my disease, to become an instant advocate, and to explain to people why I was limping, why my hand was clenched, or why I use a credit card as a straight edge for writing -- a practice I had actually adopted long before my diagnosis. In spite of some of the awkward moments (the poor bartender didn't need to know why I was spilling my martini), I do believe that coming out empowered me during those first couple of years. It allowed me to take control of the most important part of my life -- my story and how I tell it.
Lucky Man, Michael J. Fox's celebrated autobiography, was one of the first books I read after my diagnosis. I was hoping to find a guide to what a life interrupted by a neurodegenerative disease would be like. Instead, I found the story of what a life rediscovered could mean. That's why I will never forget the thrill of meeting Michael the night before I ran the New York City Marathon for Team Fox in 2016.
I remember how excited I was to introduce Peter, my husband and best friend of over 20 years. I explained to Michael how, through months of sporadic training interrupted by minor injuries and major self-doubts, Peter had made my journey to the NYC Marathon possible. From coaching me to "swing your arms," -- as truly annoying as it sounds -- to getting me to the start of a half marathon training run, and making sure I ate healthily and tried to sleep. He supported me unconditionally as I squared off against Parkinson's disease by taking on one more challenge. For better or worse, my diagnosis had become our diagnosis.
"He's your rock," Michael said. "My wife is my rock. I understand." I realized at that moment that, just like Michael J. Fox, I was also one very lucky man.
Prior to the marathon, I had come off a particularly rough patch in which I discovered that dopamine agonists, a class of drug that works wonders for some people, made me paranoid, depressed and angry. As I slowly lowered my dosage and changed treatments, I experienced "in between" moments. These were periods where I could step outside of myself and see what was happening but was powerless to control what I was feeling or how I was reacting. Peter took the brunt of this.
I'll never forget coming down from one of these periods and asking him, "Why? Why are you putting yourself through this?" Holding me tight he said, "If this is what it takes to get you better, it's worth it."
When people ask me how I am doing, my standard answer used to be, "I have good days and I have bad days, but so far the good days are outpacing the bad ones, so I can't complain." I've recently modified that statement to say, "I have good hours and I have bad hours, but so far my 'on time' is outpacing my 'off time,' so I still can't complain."
Such is the nature of Parkinson's. It is constantly changing, sometimes in big ways, but most often in small, incremental ways. Many of its symptoms are internal or imperceptible. People don't know I have a hard time swallowing unless they see me trying to choke down an arugula salad. They don't know that my eyelids don't open in the morning unless they catch me using my fingers to pry them open. Plus, no two people experience the disease in the same way and it can be a lonely journey. Even the most positive, forward-thinking Parkinson's warrior can sometimes feel overwhelmed, despondent, and afraid of what living with a degenerative disease will mean for the future.
Still, I truly believe I am one of the lucky ones. I live in a progressive community that has long valued equality. I have access to excellent healthcare and a specialist who views herself as a co-partner in my wellness. I still work full time as the director of a vibrant animal shelter, and I have a large support network of friends and family who want to see me happy and healthy. Most of all, I'm one of the lucky ones because I met and married a man who loves me unconditionally. The fact that he's impossibly handsome and likes to cook is just icing on the cake.
Sometimes at Parkinson's events, I am introduced as a "patient" and Peter is introduced as my "caregiver." I'd like to eradicate that language once and for all. Words matter in how we describe and see ourselves, and they evolve and adapt with us over time. I don't see myself as a "patient," but as a person living with Parkinson's; active, independent and equal. I don't see Peter as my "caregiver," but as my husband; active, independent and equal.
It's important that people see the diversity of lives that make up the Parkinson's landscape. But in telling my story, I hope people discover the universal truth that we all share this journey together. At the end of the day, it's the power of love that gives all of us hope and the courage to keep fighting.