Wanna Give Parkinson’s the Middle Finger? Celebrate Your Life NOW with a “Selfabration!” (Part 1)

This story is the first installment in a 3-part series. Stay tuned for Parts 2 and 3.

In early January 2022, I had been feeling very depressed at having reached the 25th anniversary of noticing my first PD symptoms, which were rigidity of my left ring finger and pinkie; “frozen shoulder” on my left side; and tightness in my left hamstring, no matter how much stretching I did. I was 32 at that time, and had just given birth to my second child.

It was Sunday, and I was reading the obituaries section of the newspaper. I noticed that Charlie Peterson* had passed away from Covid. He’d been the husband of Mandy Peterson,* [*not their real names] whom I knew from the Parkinson’s Foundation of Minnesota & the Dakotas PwP Leadership Council. Charlie had been in his late 50’s and in good health, like my husband Paul. Mandy and I were also in our late 50’s, had speech and mobility issues, and had undergone DBS surgery. The obituary stated that a Celebration of Charlie’s life was planned for sometime in the spring. I began to wonder: how in the world would Mandy manage to put it together? What was she going to do? Then, selfishly, what would I do in the same situation?

Celebration of life

What is a “Celebration of Life"? Many people would call it a wake. It is a party, a festive occasion at which family and friends gather to talk about the life of an individual and the characteristics that made them unique and special. Those in attendance may raise a toast and share food as they share stories from that person’s life: his accomplishments, her ideals, the big or little things they did that will be cherished after they have died.

I find it both ironic and tragic that we Americans tend to hold Celebrations of Life for folks when they are no longer around to enjoy them. So I decided to schedule my own “Selfabration of a Life Well-Lived”. It was one of the most rewarding things I’ve ever done (though not for the reasons one might expect), and I’m hoping that many of you will give it a try. For me, it was a very concrete way to tell Parkinson’s disease to “fly off” (or words to that effect)!

How do I start?

You might be asking yourself, “What have I done that is worth celebrating or remembering?” or better still, “What in my life do I want to celebrate/remember?” Every person reading this already has at least three items to put on that list:
1) I have lived x weeks/months/years, despite having PD
2) I have begun educating myself about the condition
3) If you have been out in public, you have unconsciously been educating the people around you about what a person with PD can look like

Then you add to your list from there. Life accomplishments, have you gone to college? Learned a trade? Gotten married or been in a relationship? Been a good friend? Had children? Are you a great storyteller? Have a knack for fixing almost anything? Each of these can be cause for celebration and remembrance -- just don’t beat yourself up if you haven’t done them!

Personal accomplishments can be goals that we set for ourselves, such as being able to recite the names of all of the Presidents of the United States in order, or hiking to the top of Mount Kilimanjaro. Or, they can be things that happen incidentally- perhaps you were the first baby born on New Year's Day in your hometown, or maybe you attended Neil Diamond’s last concert before he retired due to PD.

I was uncomfortable with having a three-hour Jackie Love Fest, so I used my Selfabration to thank everyone who attended for their love and support over the years, especially my care partner, Paul, and our sons, Alex and Bennett. Caregivers can never be thanked too much, in my opinion.