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.


Hal said...

Thank you for so eloquently describing the frustration that so many of us who have a degenerative illness, or who have a loved one with such an illness, are feeling about the current state of research in our country. We need this to change and we need it to change now.

Anonymous said...

It’s a scary thing to hear those words: “I have Parkinson’s.” When my beloved sister told me, I was amazed by her confidence and knowledge. All I could hear was “Parkinson’s.” What would that mean? What I know now is that the answer is complex. I also know that it’s barely on the radar. That has to change. Our vote will make that happen.

Anonymous said...

Maybe someone reading this will try Tai Chi. Or take walks on the beach, which my relative believes has significant positive impact on her sense of balance. While the government takes its time pursuing research, we have to share what we know. Thanks for giving us a great place to share our knowledge and experience.

Anonymous said...

Right on! I consider that sad August night in 2001 when Bush took his wrongheaded approach to stem cell research to be one of the darkest moments in recent history. On top of all the other crimes he has committed against the American people, Bush should be judged for his callousness in picking political expediancy over the opportunity to fund research which has the potential of creating a better life for many.
WhenI speak with so-called "pro-life" advocates about the foolishness of Bush's position, they rarely have an idea that the cell produced in IVF which are not used will be destroyed rather tnan used to improve upon and prolong life. The couples who decide to permit these cells to be used in scientifically sound and approved experimentation are doing more to serve a pro-life agenda than all the misguided souls who see stem cell as nothing more than another form of abortion.

Jon said...

Reading your posting and the comments reminds me how important it is to ensure that Obama wins this election. There are many areas where I feel Obama is too cautious or I disagree with him (I am not looking forward to a wider, more intense war in Afghanistan), but we can not stand another 4 years of rule by the radical right. Everyone who feels this way has to actively inform friends and relatives in swing states of what is at stake. We can't count on mainstream media to do so. I have relatives in Utah (which unfortunately is not a swing state!) and they are bombarded with lies and distortions from main stream media and from the internet. They are hungry for and appreciate accurate information.

Fran Greenberg said...

A beautifully written plea for scientific research unfettered by theology, which is NOT the same as research restricted by ethics. Theology is about belief; ethics is about morality. You make an emotionally strong case for the ethics of stem cell research. There are sentient beings whose illnesses might be treatable. You remind us that stem cells are not sentient beings

Magdelana said...

I was drawn to your blog by its clever name and on visiting was even more impressed with your thoughtful and eloquent writing. I agree with everything you said and am appalled at the ignorance of our present administration and its stand on stem cell research. The ignorance is only compounded by the waste in losing the use of cells already available. I have been a caregiver for 44 years for mother and husband with PD. I share your desire for light and air in every "sense" intended.

joshklein said...

It is a tragedy that the most prosperous nation on Earth has suffered an intellectual insurgency - what Al Gore describes as the assault on reason - stymieing such important research for nearly a decade. I hope we'll be able to resume scientific progress in the new year.

Reading Matter

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