Families with Parkinson’s Disease

people coverThere they are again. Staring at me as my nails dry at Susie’s Salon on 72nd Street. Michael J. Fox and Tracy Pollan on the cover of People magazine. I wish I didn’t resent their affection for one another and their airbrushed pictures of life with Parkinson’s.

Despite being married to an actor with Parkinson’s, I never felt our Coudal-Jones family and the Pollan-Fox family had all that much in common. They seem to have an ease with the disease. Maybe I am just jealous.

Maybe it’s the money. While Chris and I have done well financially, given that we are artists living in New York, we never had an endless stream of cash for the support of caregivers or chefs or whatever the heck very rich people spend their money on.

I don’t want to feel sorry for myself. For self pity is a hole I could fall into and never climb out of it. (Or to paraphrase Cheryl Strayed, ‘self pity is a street that you don’t want to park on.’) Let’s face it, Jones and Fox, like all people with Parkinson’s, have had different trajectories with the disease.

I feel compelled to emphasize the positive after reading this article (or any time really). Chris is going strong after his diagnosis 15 or 16 years ago. However, he is definitely slowing down. This makes me sad. There are times when he gets stuck and cannot move. Times when he shakes and cannot stop. There are times that he drools or hums incessantly. And God help me, I find some of these major physical shifts so disheartening. I am more impatient than Tracy Pollan. I try to stay positive.

The other thing I resent and again, God I wish I did not resent this, is the way that Tracy Pollan gave up her career. According to the recent article, Pollan was the bright one, the steady and hard working actor while Fox was the goofball. Why did she give up her work? Oh, to raise the children. Right. Right.

Well, I raised the children and I worked too. Sometimes, several jobs. And don’t get me wrong, I have always loved my work. My work has given me a purpose and a value, not to mention tuition money for the kids. Is it my feminism or my work ethic or simply my jealousy that wishes that Pollan would’ve been a film producer or continued to do her acting thing, too? She seems to have been a professional caregiver. (Not that there’s anything wrong with that.) Her work was unpaid, but likely, she continued to work hard. It’s hard work to make caregiving look this easy.

But back to my story. It does not have to synch and jibe with any other wife who has a husband with Parkinson’s. I do not have to be on the cover of People. I just have to be me. And Chris can be Chris. And our kids can be who they are. Likewise, the Pollan-Fox fam can be themselves. We all deal with it in our ways. And the one-day-at-a-time way of dealing with life never fails. Letting go of comparing ourselves with others also seems failproof. So I will let it go and find a way to gratitude.

Just one last wish: that for once, someone famous who is struggling with a chronic illness like Parkinson’s, would say is, “It ain’t always easy.” That’s it. I don’t need their family money or their love for one another (okay, well, maybe a little). And I must pause for a minute to admit here that I do appreciate their quest for a cure. They work hard on that. And they have leveraged their celebrity for a good — no, a great — cause.

Every so often, though, I long to hear, “We have struggled with this.” Okay, then give it a beat and continue, “But we’re still here. We’re still trying to make our best lives. We’re still going to work. We’re still trying to love one another and be loved.” Because, no one is perfect — not enough the smiling couple on the cover of the magazine — but we are all trying. And every family has its struggles and its stories. And every story could go deeper and everyone edits their lives for the sake of word count, print space or how they appear on social media.

Let me forgive Michael and Tracy a little and acknowledge, on behalf of all families with a chronic illness like Parkinson’s, “It ain’t always easy.” But thank you for continuing to show up.

Be real. Be loving. Be patient.

Self-pity is a dead-end road. You make the choice to drive down it. It’s up to you to decide to stay parked there or to turn around and drive out.

— Cheryl Strayed
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