Finding Balance With Parkinson’s
There are times in your life when something feels so far out of balance that you are compelled to take action, even if you’re not sure how it might all shake out. This is the way I felt in late 2019 when I decided to stand before all of my coworkers and reveal that I had Parkinson’s.
The reactions to my announcement were mixed. Quite a few colleagues came up to me or contacted me later on to express their empathy and respect for being open and sharing my condition, which was heartening.
On the other hand, my fellow administrators seemed to take my public disclosure as a sort of aberration that needed to be stamped out. Sadly, their deficits of compassion and aggressive resistance to accommodation ran directly counter to the spirit and letter of the Americans with Disabilities Act.
This was a tough period that lasted several months but ultimately (and happily) led to the next phase of my life with Parkinson’s, which involved working with my awesome wife and another fantastic partner to start kin:pathic, a health services provider that puts compassionate care front and center in how it helps children diagnosed with autism.
As a person whose condition makes him neurologically diverse or “neurodiverse”, I find that working in the field of autism services is immensely gratifying. Had it not been for the decision to share my condition with colleagues at work, I might have remained stuck trying to grapple with my limitations instead of adapting to them.
This also marked the beginning of what I have come to call the BEAM mindset that I now adopt in my everyday life.
Below, you’ll find the announcemen made to my coworkers in December 2019. As an aside, I would like to thank Larry Gifford, Parkinson’s advocate par excellence, whose wonderful podcast, When Life Gives You Parkinson’s, helped give me the courage to take my first steps toward being my authentic true self.
Announcement Made To Derryfield School Staff
December 2019
[deep breath]
People don’t usually get up in front of their coworkers and talk about what I’m about to talk about, which is why I wrote this statement in advance. I recognize this may be a bit awkward, particularly for newer staff members who do not know me that well yet.
Recently, I was listening to an episode of the podcast, “When life gives you Parkinson’s,” and I was struck by the words of a guest on the show who said that by disclosing his disease to others he felt like he was able to be his authentic true self.
So here goes….
[open and close hand]
This is a symptom of Parkinson’s, stiffness in the hand and rigidity (and tremors that come and go). There are other motor and non-motor symptoms that I experience. For those of you who think of Parkinson’s as a disease that is characterized primarily by tremors, as I used to myself, the fact is that there are myriad symptoms that manifest and combine uniquely in each individual.
There’s a saying in the Parkinson’s community that when you’ve met one person with Parkinson’s, well, you’ve met just one person with Parkinson’s. Every person with Parkinson’s has a unique set of symptoms. And even on an individual level, it is an unpredictable and constantly shifting condition. But what’s common to all Parkinson’s patients, from Michael J. Fox to Marco Masoni, is that the disease is progressive and incurable.
It was three years ago when I was first diagnosed with this neurodegenerative disorder, although I have probably had it for much longer. My diagnosis was initially disorienting, but I gained my bearings by being proactive, reading up, changing my diet, starting to exercise intensely (the only therapy that is clinically proven to be effective besides medication), meditating, and redesigning my life to reduce the stress points, insofar as possible. My wife and kids have been amazing sources of support for me in this effort.
I’m telling you all of this as part of my proactive approach to Parkinson’s. My goal is not to elicit your sympathy or to get you to feel sorry for me. I just reached the point where my desire for privacy, and my inclination to be stoic about things, ran up against the reality that this disease forces me to work and collaborate in different ways than I was accustomed to pre-diagnosis. I can still be effective in my job, I can still teach, I can still be your Dean of Innovation, but I have to take into account my health as I never did before.
I want you to know this about me now so that I can be my authentic true self here at Derryfield. I want to be able to have a conversation about Parkinson’s if it comes up, although I don’t necessarily need it to come up. I also want to be able to say, I just can’t do this the way you’d like me to or I just can’t do this right now without it coming off like I’m not a team player. I want you to understand, for instance, why I may have difficulty taking notes at meetings and often use speech to text technology to write. Or why I am prone to choking up.
Again, please don’t feel like you have to tiptoe around this reality with me or that you are compelled to say anything at all. Really. It’s just part of who I am now and, truth be told, I’ve fully embraced the challenge of living with Parkinson’s as the ultimate “X” that I’ll be tackling for the rest of my life.
[reveal boxing gloves]
I brought these boxing gloves because they are the ones I use in my very active and mostly elderly Parkinson’s boxing group. I’m pretty sure that I am the youngest of the bunch! If you like, I’d be happy to tell you more about how we use boxing to relieve our Parkinson’s symptoms because it’s been part of a cathartic journey of self-discovery.
But I’ll leave that for another time…
