Sen. Paul Wellstone Remembered

In the aftermath of his sudden death, the chronicling of Senator Paul Wellstone’s legacy would not be complete without mentioning his work with and for the American Parkinson’s community. Having watched Parkinson’s destroy the bodies and lives of both his par-ents, he was a peerless Congressional champion of our fight for a cure.

But our fondest reminiscences stem from his brilliant capacity to help our community — originally isolated and inactive, and thus disenfranchised — empower itself. He did so in magical moments we never will forget. Surely this gift competes as his greatest legacy.

At the time Senator Wellstone was elected to the U.S. Senate a dozen years ago, there was no Parkinson’s advocacy community as such. A few patients had just discovered the consequences of their disorder’s political invisibility: federal funding of Parkinson’s research — about $25 a patient — paled in comparison to that allocated to vocal, and better-organized, patient groups.

Our organizational deficiencies were painfully obvious. Within a few years of diagnosis, the disorder saddled most of us with very public symptoms — stiffness, trembling, stooped posture, slow movement — leaving us feeling marked and stigmatized. Either the symptoms, or their consequences — loss of jobs, health insurance, then family stability, then simple dignity — rendered most of us initially actively hiding the disorder, and later confounded by it.

Enter Paul Wellstone. He quickly added us to his list of causes and became the most loyal attendee at our events. He became a spokesperson for our legislative agenda — first of many being his lead Democratic sponsorship of the historic 1997 Morris K. Udall Parkinson’s Research Act. But he also adopted us, taught us and transformed us. He reshaped our individual emotional constitutions. And he did it over dinner.

Once a year, we at the Parkinson’s Action Network (PAN) would host a Washington, DC training program for would-be Parkinson’s advocates. In the early years, patients often came to our trainings expecting little and wearing hopelessness as a further disabling symptom. Before the final day’s visits with Congress, we held a dinner, with Senator Wellstone as our key speaker.

This event featured the Senator in his role as change agent — but this time the target was us. His ferocious drive to change our lot was paired with the conviction that we could do it ourselves, by standing up for what was our due as citizens and taxpayers. Asking our physically undone and spiritually disempowered group to “stand up” for anything was a tall order, but Paul was a master at it.

First, the Senator and wife Sheila would bond with all present. The evening’s timetable would drift from the Wellstones’ first entrance, as they inched along, stopping to joke and hug friend and stranger alike. There wasn’t a shred of Senatorial stature separating him: to everyone, he was emphatically just Paul.

Eventually Paul would reach the podium. He would start quietly and casually, often with self-deprecating quips about his short stature. Then, softly at first, he began talking of his parents’ suffering, telling the rapt audience of his father’s pleas to his son to stop his misery by ending his life.

Then, drawing his compact frame to its maximum height, Paul would prepare for his main theme. As his muscular arms rose and formed a wrestler’s semi-circling stance, he would begin to describe how much his parents, and the rest of us, deserved a better life than was available to us in the trap of Parkinson’s. He would link the legislative assistance available to free us: more aggressively-funded research, lifting of politically imposed obstacles to new technologies like stem cells, Medicare support for new treatments, and others.

As he ticked off the reforms needed, he would segue, voice rising, to the central theme, Civics 101 wrapped in a consciousness-raising session. It’s about justice, he would say, his arms starting to pump toward each other in a supporting cadence. It’s about our power to insist that our government respond with the same zeal given other federal priorities. It’s about justice: there is enough wealth in the U.S. Treasury to fund PD research fully, without cutting research for other sick Americans

Now he began to command us, getting louder. You have a right in our democracy to demand a better life. All you’re asking for is those God-given, inalienable rights that no illness could steal. But you have to advocate for them, he barked, insisting upon fair and equal treatment as citizens and taxpayers. Eventually he would simply shout, exhorting us, his arms driving in the air, “It’s about justice! It’s about justice!”

It worked miracles, every time. People who had entered the room quietly were shouting and cheering with him. The inordinate physical stillness that overtakes people trapped in a Parkinson’s-afflicted body was shattered: powering over their stiffness and shakiness, people jumped to their feet or leaned up from their wheelchairs, yelled, waved their arms, threw their napkins in the air. It was magic.

And it transformed our advocacy effort, that week, and the next year, and thereafter. People walked out of the dinner taller than they walked in — often literally, certainly spiritually — and were restored with the dignity and sense of entitlement that in many cases the disorder had taken away. And for someone staggering under the weight of the physical and social disintegration wrought by PD, a restoration of dignity is a priceless, life-changing gift.

We will miss Paul Wellstone, grievously. We must, somehow, go on without his periodic booster shot to our spirits, while we continue to endure Parkinson’s — the disorder Michael J. Fox aptly describes as “the gift that keeps on taking.” The memory of these moments, though, becomes a gift that will keep on empowering us, to stand up for ourselves, to push ahead for our cure. It’s about justice.