Tuesday, September 9, 2008

Balancing Acts

On August 7, 1974, Philippe Petit stepped onto a wire between the towers of the World Trade Center and enthralled New Yorkers with a breathtaking, impossibly daring performance—a singular mélange of focus, nonchalance, courage, beauty, and joy.

This week we mark the anniversary of the loss of the towers: seven years since that mild, clear morning gave way to ashes, flames, and dust. Up the Hudson River, where I live, you could smell the smoke for days.

As we all turned for comfort to family, friends, and neighbors, I felt fortunate to have recently found a virtual community on the Parkinson's Information Exchange Network Online (founded by Barb Patterson and John Cottingham, now going into its tenth year). On the email listserv of this site, PwPs of varying ages, stages, and nationalities exchanged information, stories, support, and humor. There were occasional scuffles and sulks, too, which only heightened feelings of being accepted, real, alive.

In the days following September 11th, many of us felt so alive it hurt. Like crabs who had shed their shells, we existed in a state of intense vulnerability and awareness that was almost too much to bear.

It is said that every loss stirs memories of other losses. For those who live with a degenerative illness, the consciousness of loss is never entirely absent, and each day is an emotional tightrope. We people with Parkinson's develop great skill on the wire. But when some extra, unexpected disaster comes at us, it's easy to fall off.

With normal reserve and defenses cast eroded, listserv discussions in the aftermath of 9/11 became increasingly vehement and political. The list began to fall into factions. One insisted that discussion be limited to topics directly related to PD, while the other declared that by excluding broader topics we artificially cordoned ourselves off and denied our role in the larger world. Remembering that discussion, I searched the list archives and found that around this time, well before Stephen Colbert and The Word, someone had posted the following:

Today's Word: Solidarity (Noun)
Pronunciation: [sah-lê-'dæ-rê-tee]
Definition 1: A unity of interests, objectives, standards and sympathy that results in community.

I can't think of a better word to honor this anniversary, as we struggle in arenas large and small to find unity and community.

Remembering Murray Charters and Camilla Flintermann, guiding lights of the list and extraordinary human beings. They are missed.

The exploits of Phillippe Petit and his band of co-conspirators are the subject of a remarkable documentary, Man on Wire.

photo by Tony Hoffman from flickr.com

Monday, September 1, 2008

Reason to Hope

A week ago I and millions of others watched Michelle Obama's speech at the Democratic convention. About three minutes into it, she spoke of her father, who was diagnosed with multiple sclerosis when he was in his early 30s. As she described how he got up early because he needed so much longer to get dressed, how he managed to laugh even as he struggled with his shirt buttons, I felt a rush of gratitude. It was me she was describing, and countless others with neuromuscular disorders. She really understood.

In 1998, my neurologist expressed the view, then widely held, that in ten years research would have yielded innovative new treatments and maybe even a cure.

Well, it's been ten years--years in which promising research was squashed by a misguided policy that limited access to stem cell lines, placed crushing burdens on scientists, and cast such a pall that an alarming number of researchers either switched fields or left the United States to work in countries supportive of their work.

So what? Research hasn't stopped altogether. If it's going on elsewhere, at least it's going on. Why should we care?

We should care because when a country as resource-rich and influential as the United States all but outlaws an area of research, it hurts that field. We should care because scientific breakthroughs arise from the collective energy of highly trained, knowledgeable, intelligent minds working on the same problem.

A New Yorker article (7/28/08) entitled "The Eureka Hunt," by Jonah Lehrer, sheds light on how we seek and generate insight. We focus on a problem for a while and then relax, allowing our brains to roam freely and seek associations that lead to insight. Achieving insight is described as "an act of cognitive deliberation transformed by accidental, serendipitous connections."

The limitations on stem cell research imposed by the current administration have created an environment that curtails serendipity and sabotages insight. The cramped condition of stem cell research in the USA mirrors the condition of Parkinson's patients: slow, stiff, wobbly. The 2008 Republican Party platform promises to be even more restrictive, calling for a ban on all embryonic stem cell research, public and private, including research using frozen cells stored in In-Vitro Fertilization facilities.

Is it too much to hope that one day, we people with Parkinson's will be able to button our shirts without getting up early to do it? I think it could happen, even in my lifetime. But not in the current stifling climate.

We need light and air. We need allies who understand our struggles and believe that our actual, realized lives have meaning and value. Embryonic stem cell research uses undifferentiated clusters of cells, never implanted in a uterus. These cells never had and never will have shirts to button, jobs to go to, kids to raise. We do.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.