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ALS and Stem Cell Research

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Headlined to H3 1/15/09

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Today, I received an email bearing sad news. Sent en masse to those who support the ALS Therapy Development Foundation, it announced the sudden and accidental death of Stephen Heywood, age 37. And while this may sound impersonal, truth is, it was about as personal as it gets without unfolding beneath your own roof, or within your own arms.

Like all profound and uncommon experiences, those of us who share these life-changing events form a bond - a connection with others who have been handed a similar fate. Through nothing more than circumstance, and in the blink of an eye, you become part of an extended family of strangers, all bearing similar losses and heartbreak, even triumph and joy.

And so, in learning of Stephen's death, it reminded me of that day, some four years ago, when my husband succumbed to the disease, and in return, unleashed that proverbial flood of emotion. Not that I needed reminding: Memories and emotions are always close to the surface, but with time, they compartmentalize themselves somewhat, delicately closing inward, like a night blossom, knowing they will unfold again, a petal at a time, and when the time is right.

Terminal illness covers the gamut of emotions and response - in its poignancy and depth of human experience - it makes us take a hard look at life and living, and what truly matters. Time, that elusive and intangible enigma, metamorphoses into a richness of moment. Suddenly, the length of life is not what constitutes living, but rather the detail and scope of each day becomes priceless. It is an amazing process and the enveloping lightness, when the superficialities of the mundane are shed like a translucent skin, molted away, one by one, like so many feathers, is an unexpected gift in the otherwise fragmentary heaviness of fate.

Stephen Heywood and his brother, James, in 1999 founded the non-profit ALS-TDF, the world's leading ALS research center; one year after Stephen received his diagnosis of ALS, Lou Gehrig's Disease.

Stephen and Jamie Heywood did not know me. They did not know my husband. They knew us only through their donor list, humble supporters of their foundation and believers in their cause and passion. By coincidence, on a Tuesday afternoon in December of 1998, unknowingly, our paths and fates crossed in the Neurology Department reception room at Mass General, nervously awaiting appointments with Dr. Robert Brown, Jr., one of the leading doctors in ALS research. On that Tuesday, those dreaded words that we hope never to hear, were spoken to my husband, and later, to Stephen: You have ALS.

Not words you want to hear at any time, certainly, but especially not in your twenties, thirties, and forties, which we all were. Just when you thought you had your whole lives in front of you - family, future - life twists, turns and buckles and delivers you a swift blow to the gut. And in the words of Robert Ranke Graves, and as I have quoted before, and will again here, because there are few words that can better express the darkness of that moment, "Good-bye to All That."

But as we would learn, there would be countless, priceless moments to come - bright, brilliant moments that would eclipse and forever outlive the darkest.

Stephen Heywood went on to marry his beloved, Wendy, and fathered a son. In 2000, he became the first person in the world to receive an experimental stem cells injection into the spinal fluid of his ventricle and lumbar cord. It was something, anything -- it was important. It was hope.

With ALS, there is no operation to buy you time, no drug therapy to greatly prolong your life. It is a slow, sometimes painful, progressive neurological disease that leaves you completely paralyzed as all muscles are effected, even those used for breathing and swallowing.

It is always fatal.

What more can one ask for than hope when dealing with a terminal disease? When watching those suffer whom we love most in life? Sustenance and meaning can be found in love, family, friendships and faith, and gives you reason to live and thrive each day. But hope, that other intangible, like time, is what we quietly carry to bed with us each night, secretly needing to believe.

Stem cell research is hope. It may hold the answers, and someday, the treatment or cure for painful, debilitating and life threatening diseases. How can our government, in cold indifference, put a veto on hope?

Far too often we hear the indignation, "we cannot play God," by those vehemently opposed to stem cell research. How then, I wonder, is it morally or ethically just to impose a death sentence on any human being convicted of a crime, yet blasphemous to utilize stem cells that would otherwise be disposed of? Stem cells that could possibly end incalculable suffering, and someday, save the lives of millions of men, women and children?

In the cycle of life we may, or will, lose those we deeply love. But some things are timeless. Hope is one of them.

In the reverent words of Emily Dickinson, "hope is the thing with feathers - that perches in the soul - And sings the tune without the words - And never stops - at all."

***ALS Therapy Development Foundation, 215 First Street, Cambridge, MA 02142


A native Californian, Jan Baumgartner is a writer and book editor. After many years along the coast of Maine, she now lives full time in San Miguel de Allende, Mexico. She's recently finished editing two books; one, a memoir for a non-profit in (more...)
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