RUNNING FROM GRIEF

Harder to hit a moving target, right?

Speaking at the World Parkinson’s Congress.

I’m standing on a treadmill in the fitness center of the Phoenix Sheraton. I’m here for the World Parkinson’s Congress, and the room is rocking. Every cardio machine, taken. Well, good for us! Look at all us fit people pushing for our personal bests!

Except for me. Suddenly, I can’t run.

Every nine or ten strides, my foot drops and kicks the treadmill, lurching me off balance so I have to grab the handrails to avoid getting thrown off the back.

Just last month I ran a 5K in Central Park. Now I can’t even run in place. My left side, my affected side as we say in the business, is on a different wi-fi network from my right. The timing of my stride, the amplitude of my step—it’s just not working.

It’s been a stressful few weeks. My husband was hospitalized for sepsis and came home weakened in a way I hadn’t seen before. I am not a natural caregiver. I’m a natural worrier, and that’s not helpful. At all.

I understand that stress affects symptoms, but this seems outsize. Terminal. The universe collecting on a debt I ran up with my perky positivity and ambition to push through and prove myself.

Along with my fear comes a deep, aching grief. For the past six years, running hasn’t just fueled my energy but my confidence. I’ve never been fast, and Parkinson’s certainly hasn’t made me faster. But it did push me forward. It pushed me to run a block, two blocks, just to that tree in the distance. A quarter mile, a mile, all the way around the reservoir in Central Park.

I liked to say, “I’m a back-of-the-pack runner, but I’m in the pack.”

Not anymore, apparently.

In the 35 minutes it takes me to struggle through two miles on this treadmill, lurching and grabbing the handrails and blinking back tears, I confront Parkinson’s on a whole different level. Not just as a support group leader or the wry observer I’ve tried to be, but as the thing I shunned most: a patient.

One year after diagnosis, I gave my group a little pep talk where I said “defiance is the antidote to despair.” I started an Instagram feed, FU_PD. “Callow,” is that what you call that? “Asshole?” Maybe. Or maybe just a terrified newly diagnosed person trying not to give up.

I would not succumb to hopelessness, I vowed. I would not give in to grief.

God sure is quirky.

I’m here at the World Parkinson’s Congress to speak at the Support Group Leader’s Lounge. Today’s talk is on grief, and somehow, one of the examples I’ve written into my presentation is a runner who can no longer run.

A woman in the audience raises her hand.

She says, “I could have written this example.”

She talks about what running gave her, and what it meant to lose it: the confidence and freedom of moving forward in a body she could trust.

I tell her I feel the same way. Other people in the room nod. There are so many things Parkinson’s takes from us. So many reasons to grieve, even when our disease is “not so bad.” Driving at night. Getting up from a restaurant table without worrying I’ll send the dishes crashing to the floor. My career.

Afterward, friends hug me. The clenched feeling in my chest begins to loosen—not because anything has been fixed, but because it has been witnessed.

When I get back to New York, I try running again. Slowly. Oh-so-fucking-slowly. My legs are stiff. But they’re both functioning, more or less as a team.

I don’t fall.

I run.

Not in a triumphant Rocky-training-montage way. But my way.

Pounding along, feeling both the weight of gravity in my aching legs and the coolness of the breeze off the Hudson.

Parkinson’s is a disease of loss. No amount of pep-talking changes that.

But sometimes, just when you think the disease has taken more than you can bear, hope touches your face and lifts your hair off your brow.

And sometimes, that is enough.