Categories:
Navigate:
Search:
  For Todd Kelly, ALS is unfair, and a challenge
Posted February 3, 2003 in PALS Profiles

ToddKelly-1.jpgThere are no rumpled angels or absent-minded uncles in this bittersweet story of a wonderful life all but doomed to a premature end.

Yet there is a Capra-esque quality to Todd Kelly's tale. Like bread cast on the waters, the good words and deeds that Kelly has spread since childhood are returning in his hours of need.

"I really do feel like George Bailey sometimes," said Kelly, program director at WDJX-FM (99.7).

After a lifetime of giving to others, Kelly, 32, has for the past 2-1/2 years been busy receiving aid and encouragement in his fight against amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease.

In addition to the bedrock support of family, church and friends, Radio One, Kelly's employer since 1993, assured him that his job was safe, provided him with extra help and whipped up support for Louisville's first ALS benefit walk.

The staff and management of Phoenix Hill Tavern, Kelly's favorite nightspot for 13 years, worked without pay and recruited top local bands for a surprise benefit that raised $1,600 last fall. At Christmas, general manager Frankie Gray and crew gave Kelly a special electric massager to soothe his severe and nearly constant lower-back pain.

At Harvest Baptist Church in Fairdale, a fellow parishioner Kelly barely knew gave him a $4,500 wheelchair that belonged to her son, who died of ALS around the time Kelly was diagnosed.

Kelly also received a warm call and a handwritten letter from notoriously crusty comedian Jerry Lewis, namesake of the Muscular Dystrophy Association telethon, for which Kelly has worked as a volunteer since he was 7 years old.


Kelly talked with customer service manager Linda Suratt at WDJX.


Kelly, 32, who mixed a tape at the radio station, said he plans to outlive his doctor's predictions. "It can be done," he said. But Kelly's favorite gift was a $1 donation personally delivered to Radio One's Fourth Street headquarters by a preschool boy. His favorite salutation came from Patrick LeRoy, a 7-year-old muscular dystrophy patient who mailed a hand-drawn Christmas card that read, "You're going to get better!"

Even after 2-1/2 years, Kelly is as amazed as he is grateful: "So many people have done so much for me that it's truly unbelievable. Sometimes I even sit back and wonder, 'Are these people for real?' "

They are as real as Kelly's disease, a slow and certain killer with no cure and only one drug, Rilutek, approved by the Food and Drug Administration to impede its progress.

ToddKelly-3.jpgThe concern and affection shown by friends and near-strangers alike are as authentic as the stabbing pains in Kelly's back and the dreadful fears that accompany every new twitch or twinge. ALS is a progressive and incurable neuromuscular disease that eventually paralyzes those it afflicts, leaving them unable to eat or breathe.

The people of Kelly's acquaintance, his personal Beaver Falls, are as real as the generous works he has done in a life well-spent, friends say. So well-spent that being struck two years ago with ALS seems like a bitter confirmation of the old saw that says no good deed goes unpunished.

"When we got the news," Kelly said, "I asked my mom, 'Did I do something wrong? Did I not help enough people? Why is this happening to me?' "

It's a question no one can answer, not his pastor nor his family nor even a close friend who also suffers from chronic disease.

When Kelly was diagnosed in June 2000, he was told he had three to five years to live. The shattering prognosis was delivered just weeks before Kelly's 30th birthday, 25 years before the average onset of ALS, which afflicts about one in 50,000 people in the United States.

"Of course I asked, 'Why me?' " said Kelly, a 1988 graduate of Pleasure Ridge Park High School. "I still ask that question - every day, in fact, even though I know there is no answer. I just have to accept it. I didn't ask for this. I can't change it. I'm getting better and better with it, but I'm not going to lie. It's pretty rough."

No one deserves a fatal affliction, but perhaps some are less deserving than others.

"This young man is a true angel among us," said Kelly's brother, Mark Kelly. "He has been a Big Brother for over five years, has been volunteering his time for (the MDA) for 25 years, and was the first person to take a chance and start" a local benefit walk for ALS.

Louisville's first "Walk to D'Feet ALS" in October owed its rousing success to Kelly's hard work and huge network of friends, co-workers and connections.

"I took it personally," said Kelly's boss, Dale Schaefer, general manager and vice president of marketing for Radio One Louisville. "I told Todd that we would go above and beyond just promoting the walk on radio.

"I sent out a personal letter to several hundred advertisers and said, 'I've got something affecting me and a member of my Radio One family, and I'm going to ask you to help out.' "

Schaefer's call and others were answered. The walk vastly exceeded expectations by raising more than $40,000.

It shouldn't have been a surprise. Kelly, in addition to being a legendary workhorse, is an old hand at raising money for charity. For 25 years, he has reported each Labor Day weekend to WAVE-TV as a volunteer for Lewis' annual muscular dystrophy telethon.

Twenty-three years after Kelly first lent a hand to MDA, he went to his doctor's office complaining of searing pain in his right hamstring. Kelly thought he'd simply overextended himself in workouts. He got severe cramps sometimes playing basketball.

These weren't cramps. They were the onset of a muscle-ravaging disease hauntingly similar to MD.

"It was a huge blow," he said. "It still is. I have dreams about it sometimes, about what might happen. I see myself in a wheelchair trying to go in somewhere and no matter what I do, I can't get in. It bothers me."

The diagnosis knocked Kelly, who is single, into a deep depression but also into the arms of a broad support network. His good friend, WAVE-TV broadcaster Dawne Gee, and his parents, Warren and Sybil Smith, were well-prepared to empathize.

Warren Smith has suffered since 1990 from Guillian-Barré Syndrome, an inflammatory nerve disorder that causes muscle weakness and sometimes paralysis. Gee was diagnosed seven years ago with lupus, a chronic but seldom fatal disease in which the immune system attacks the body's organs.

"My heart was really, really heavy for him," Gee said, "because when you're diagnosed with a chronic illness, I don't care how wise you are or how old you are, it's a smack in the face because you suddenly have to face your own mortality.

"I reminded Todd that you are not your disease, and that nobody can tell you how long you're going to live. That's left up to you, God and whatever technology might be out there."

One of Kelly's next calls was to Jack Alumbaugh, pastor at Harvest Baptist Church, Kelly's congregation for eight years. He asked Alumbaugh a sadly common question: Why did God let this to happen to me?

"It's an especially tough question to answer for someone Todd's age," Alumbaugh said. "At that age, there is a lot of bitterness and blaming. You just have to assure them that God is not against them or singling them out.

"People like Todd who have a good spiritual base, they just need somebody to listen to them. I've found that after you listen to them and encourage them, they become the folks who manage to get through all right. And they're usually the ones who live longer."

About half of all ALS sufferers die within 18 months of diagnosis, according to the ALS Survival Guide at www.lougehrigsdisease.net. Kelly's more generous prognosis reflected his relative youth and excellent fitness at the time.

He plans to outlive doctors' predictions.

"It can be done," Kelly said. "I know one woman who has made it for nine years. Then again, I've known some people who were diagnosed and passed away within a year."

Kelly can't help but wonder which fate lies in store for him. He recently suffered a scary headache that lasted for five days.

"Usually I take one Advil and it's gone," he said, "but I just can't seem to lick this one and it bothers me. I wonder."

Mostly, however, Kelly works and prays. And hopes, with the help of some encouraging words from Lewis.

"I'll never forget the way he ended the conversation," Kelly said. "He said, 'Todd, you keep your head up. You're going to be the one who wins the battle.'

"Maybe he'll be right."

Copyright 2002 The Courier-Journal

  Email a Link
Use this form to send a link to this article to a friend.

Email this entry to:


Your email address:


Message (optional):


 

For our complete database of ALS news and information go to the ALS NewsCenter

Contact us at email@rideforlife.com  |  Powered by Movable Type  |  Designed by new ajenda  |  Site optimized for 800x600 and above resolutions

This website is a service of Ride for Life, Inc., a 501(c)(3) non-profit organization founded by ALS patients, caregivers, and those concerned about people living with ALS.

Disclaimer: All copyrighted information republished on this website remains the property of the original copyright holder.
Ride for Life, Inc. does not claim to own this information and presents it to our visitors in the spirit of fair usage in order to aid those who are living with ALS.

Privacy Statement: Ride for Life, Inc. does not sell, distribute, or share any personal information.