ALS mustn't paralyze us with fear
/The Boston Herald
Beverly Beckham
I didn't know him, had never even heard of him until I read about his death in Monday's paper. ``Francis A. Carlson, at 30, of Franklin, ALS activist.''
ALS is amyotrophic lateral sclerosis - Lou Gehrig's disease. Of all the diseases you don't want to get, this ought to top the list. It paralyzes the body but leaves the mind intact. People think it's rare, that it strikes only older people. But in the United States alone, 30,000 people have it, 15 people a day die from it and 15 more are, every day, diagnosed with it.
And it doesn't attack just the old. Francis Carlson was a mere 26 when he was diagnosed.
He left a wife and a 3-year-old daughter. He died when most people are just beginning to live.
We walk through life with the third rail next to us. ALS is a torturous third rail. It’s a slow death devoid of hope.
The Boston Globe wrote that when he was in high school, (he graduated in 1992) Carlson was in the speech and drama club. By 2001, fewer than 10 years later, ALS had already destroyed so much of his ability to talk that when his daughter was born, she was named Emma because it was easy to pronounce. In high school, Carlson also ``had a passion for fencing,'' and competed on the Junior Olympic fencing team and participated in tournaments in Italy and Hungary.
His mother must have worried about him then. That's what mothers do. We worry that our children will get hurt playing some sport. Or that a plane will crash with them on board. Or that there will be a fire or a car wreck or a fight. Or that they will get cancer.
But we don't worry that our child will get ALS.
Jenifer Estess was 35 when doctors told her she had this fatal disease. Its cause is unknown. There is no cure and when you get it, doctors say they're sorry but there's nothing they can do.
You can see Jenifer Estess on the HBO documentary, ``Three Sisters: Searching for a Cure.'' You can see clips of her before ALS, when she was living her life and full of life. And after ALS, when she was confined to a bed and trapped in a body turned to stone.
The 40-minute film shows clips of Jenifer and two of her sisters scheming to defeat ALS. The women got inspiration from the Manhattan Project. Put the country's best scientists into a room and have them share knowledge and look what happens. If scientists in the 1940s could work together and create a bomb that won a war, why can't scientists do this now? Work together, find a cure for ALS and win this war, too? The sisters founded Project ALS and have raised millions to fund this collaboration.
Francis Carlson founded the ALS Foundation for Life to raise public awareness and improve the quality of life for people living with this disease. Curt Schilling regularly talks about ALS on WROR. There's an ALS Advocacy Day and an ALS Awareness Month (May), and many more ALS organizations. But there is still so little consciousness about a disease that is a monster in its capacity to destroy.
ALS needs a spokesperson like Michael J. Fox to educate people, a relative of someone with ALS told me. But ALS steals a person's voice. And friends and family who can speak out often don't because they have no energy. Because they're tending to and caring for and cheering up and cheering on, steadying hands and holding hands and wiping tears, those of the person they love and their own.
Even books like ``Tuesday's with Morrie'' don't show the relentlessness of ALS.
Every day there are new treatments for people to look young and new pills for old aches and new creature comforts all around.
But so far there is no treatment for those with ALS. And no comfort but family and friends.
