Last Wednesday, September 23rd, was the 7th anniversary of my being diagnosed with Parkinson’s Disease (PD). And October 8th will be the 1st anniversary of my DBS (deep brain stimulation) surgery to treat my PD. In this strange, surreal space between these two milestones, I’ve been thinking a lot about my journey, and all the befores and afters I’ve experienced.
Immediately before my PD diagnosis, life wasn’t all that great with my health. For the better part of two years I had been battling back pain and dealing with the increasing interference of various symptoms into my everyday life. I could still indulge in “magical thinking” during this time. Maybe I just need a nap? Or to work out a bit, and I’ll be fine? Maybe it’s just a back problem the doctors can fix? But after my diagnosis, I had to confront an incurable, degenerative disease, with no predictable path or duration. Although being diagnosed and starting treatment was honestly the best thing that had happened to me health-wise in some time, and while I began to feel somewhat better physically after being diagnosed, I also experienced a kind of grief; I could no longer engage in wishful thinking, because I now knew for certain what was wrong, which in a funny way is sort of the same as being diagnosed as human. Life is a chronic, ultimately degenerative condition with no predictable path or duration. But that doesn't mean it can’t be an amazing journey.
My response to PD was the same in some ways as my response to Life. I had always tried to carry on, make the best of things, see the funny side, and try hard and do good. Suddenly, however, although you’ve come to accept that your disease is just a heightened state of awareness of Life as usual, you realize you’re scaring the crap out of everybody else. Suddenly you’re heroic, and brave, not really for overcoming your own fears, but for helping others to overcome theirs, and publicly to boot. Being told you may lose your independence and slowly deteriorate is awful news, yet you’re forced to deal with it. But when you “out” your condition to others, they need to confront not only your fate, but also their own. The reactions, good or bad, from friends and strangers, are about them facing their fears, and are not so much about you. So a lot of the After is learning to comfort others, because what I’m facing isn’t so different—it’s just on display and more visible.
I have had some experience with scaring people before PD. When I was 17, my mom died of pancreatic cancer during Christmas time of my senior year. Before mom got sick and died, I had the usual assortment of high school highs and lows. But after was different. I felt like I was an alien from another planet, and I soon realized that it was because I scared the crap out of people. There’s a reason all those fairy tales start with dead mothers. It’s a primal, instinctual fear in all of us. Yet it will happen to everyone. Everyone's mother will die sometime, whether you’re around to experience it or not. People felt bad for me, of course, but really they also felt a mixture of fear—that it could happen to them—and relief—that it hadn't yet occurred.
I’ve also been thinking about the Before and After of my surgery. I am now in a place far beyond where I was before. It feels incredibly good and amazing. But I also know it isn’t over. The Before Surgery is still true. I do have PD, and the DBS surgery and implant is just another, wonderful way to help me soldier on. My disease is still chronic and degenerative. But so is Life. All I can do is try to learn from the Befores, and try and make the Afters meaningful. To me, this is the meaning of being an “Unshakable Optimist.” We all have Before & After moments as individuals and families: illness, recovery, marriage, relationships, divorce, breakups. And while Life is incurable, no matter what happens, we can meet the huge moments by choosing to face whatever comes after with hope, and resilience, and optimism.