Writer and stand-up comedian Marc Jaffe may be best known professionally for his work on the hit show Seinfeld. Together with his wife, Karen, who was diagnosed with Parkinson’s in 2008, they founded Shaking with Laughter and have since raised over $1 million for the Michael J. Fox Foundation in the name of Parkinson’s research.
When I was originally asked to write this article, I was told that it was for National Caregiver’s Awareness month. That had me perplexed. Were people not aware of their caregivers? Are they continually being startled when their caregivers walk into a room?
Then, a correction came. It is officially called “National Family Caregivers Month.” That’s an improvement, but still, if I am the “caregiver” to my wife, Karen, who has had Parkinson’s disease for about 14 years now, then what is she? The “caretaker?” That wasn’t going to work.
Karen and I had some give and take as to who was the “giver” and who was the “taker” and eventually we found middle ground—give or take with the imperfect term, “care partner.” We are partners in life, so why not in disease? Perhaps they should change it to National Family Care Partners Month.
For me, this care partner journey has been one of growth and humility that I couldn’t have imagined when Karen was first diagnosed. But while there have been many changes, one of the constants has been our shared sense of humor.
As a comedy writer and stand-up comedian, I have always looked to my own life for comedic fodder, so Parkinson’s was always going to be fair game, no matter how challenging the circumstances. I subscribe to the formula that comedy equals pain plus time. I think everyone can rely on the same formula. Have you ever seen someone crying and laughing simultaneously? That’s how comedians feel all the time.
This is just another way of saying that it’s good to have perspective. Karen’s side gig when she was first diagnosed was as a mohel: the person who performs ritual circumcision in the Jewish religion. As you can imagine, Parkinson’s and circumcision don’t go together very well. And while it was stressful trying to navigate whether and when she should stop, the irony of living the comedic cliché of a mohel with Parkinson’s still brings us laughs years after her career was...umm...cut short.
While I am lucky and grateful that much of my comedy has had an audience, it really is the writing itself that gives me the most relief.
Confronting what’s bothering me and finding the humor in it is its own therapy. My play, Side Effects May Include, didn’t start out as me wanting to write a play. It came from writing about the difficulties we were having with the side effects of Karen’s medication. While traumatic, writing and trying to find the funny each day helped me get through. At some point, I realized that I had enough of a story to make it into a longer piece.
You may not have the experience or interest to write a full play, but anyone can spend a few minutes a day getting their thoughts down.
Another funny thing I never expected when I first became a care partner is how important it is to not care. I sometimes call myself a “Don’t-care partner.” It takes time to learn when to toggle between care partner and don’t-care partner. You’ll start off as a care partner like an eager intern, all too anxious to help. Perhaps, the person needing care will revel in the attention as well. But one day, you might try to drop her off at the entrance to the theater while you go park and she’ll snap at you. At that point, you realize this is a moment to back off a bit, let your loved one lead, and you become a don’t-care partner.
Please forgive my lack of awareness, and know that whether you are currently in care or don’t-care mode, I hope that you all find some humor in your life as a care partner to make it more manageable.
