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.