Life Death and the Fight for a Cure

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It was one of those perfect scenes. Right out of a movie. The sun slowly beginning its descent behind the pines. The temperature cooling at a quicker pace. A man, a woman walking side-by-side, arms wrapped around each other for love and warmth.
 
The date was January 29, 2002. The setting was Poppy Hills Golf Course in Pebble Beach, Calif. The couple was Jeff and Kim Julian.
 
'That week in Pebble Beach is probably my most memorable (time) with Jeff in golf,' Kim said by phone Monday from her home in Newton, Mass. 'It was just a wonderful, wonderful week.'
 
Jeff and Kim Julian
Jeff and Kim Julian. (Photo courtesy: Driving 4 Life)
Belying the beauty of that one particular moment was the fact that Jeff was waging an un-winnable war with amyotrophic lateral sclerosis.
 
Jeff had been diagnosed with Bulbar ALS in the fall of 2001. By the time he had arrived to play the Pebble Beach National Pro-Am on a sponsors exemption, just three months thereafter, the effects were all-too evident.
 
Jeffs speech was slow and slurred. He used his hands to stretch and move his cheeks and jaw. His teeth chattered uncontrollably in the cold.
 
ALS is commonly known as Lou Gehrigs disease. Its a neurological disease that normally starts in the limbs and, like a moving kill switch, works up the body disabling ones speech, swallowing and respiratory system along the way.
 
But thats where it started for Jeff. The corticobulbar area of his brainstem, which controls the muscles of the mouth and tongue, was severely affected.
 
There is no cure for ALS. Fifty percent of its victims die in the first 18 months of diagnosis. Julians form, a rarer variety, was more severe.
 
The only thing is to stay positive, Jeff said that day. Positive, thats it. The way I play golf is the way Im fighting this.
 
Jeff was a talented player, a winner on whats now called the Nationwide Tour, a guy who twice qualified for the PGA TOUR.
 
Golf was his life. And ALS took that away. On July 15, 2004, it took away his life as well.
 
Earlier that year, a Golf Channel crew went to the Julians home in Branson, Mo., to document the daily trials of Jeff and Kim.
 
By this point, Jeff could no longer play golf, and that was disheartening. Unfortunately, it was far from the worst of his debilitations.
 
Jeff could no longer walk. He could no longer talk. He could no longer breathe on his own. He couldnt feed himself, dress himself, bathe himself.
 
ALS attacks that quickly, that mercilessly.
 
Two-and-a-half years after his diagnosis, Jeff, a 42-year-old former professional athlete who stood 62 and weighed nearly 200 pounds, needed an electric wheelchair to move. He needed a computerized voice system to communicate. He needed his left big toe to operate the computer. He needed a ventilator to breathe.
 
He needed Kim for everything else.
 
ALS took away just about everything from Jeff, except his sense of humor -- 'It's not easy to be funny in a monotone, mechanical voice, but I like to try anyway,' he said that day through his computer -- and his family.
 
Jeff and Kim met at a golf tournament about 45 minutes away from her hometown of Branson. They were married for only eight months before they learned of Jeffs disease.
 
After Jeffs death, many, her family, she says, among them, wanted her to move on with her life. They felt she needed separation from the disease that had taken so much from her ' so much of her.
 
This she could not do.
 
Instead, she and her 14-year-old son Tyler (from a previous marriage) moved to Massachusetts. They settled in a town called Newton. It allowed her to start grieving on my own. It also allowed her to be nearer the ALS Therapy Development Foundation, now called ALS TDI.
 
Theres never been a time when I wanted to distance myself (from the disease), she said. It became so much bigger than Jeff. I could never have turned my back on it.
 
Kim went to work for a charity campaign known as Driving 4 Life, a fund-raising vehicle established in March 2003 by Jeff, Bruce Edwards, Tom Watson and ALS TDI. Edwards, Watsons longtime and legendary caddie, was also afflicted with ALS and died just one month before Jeff.
 
Jeff Julian and Family
The Julian family, clockwise from top left: Jeff, Kim, Tyler, Keegan. (Photo courtesy: Driving 4 Life)
Through a series of golf tournaments (more than 30 on the 2007 calendar), auctions and donations, Driving 4 Life (the 4 was Lou Gehrigs baseball jersey number) has raised over $5 million in less than four years ' all of which goes directly to ALS TDI.
 
Its been a wonderful outlet for me, Kim says of working with the campaign. In essence, its kept Jeff alive.
 
This isnt a completely selfish endeavor. Healing her own wounds is just a small part of Kims motivation. I know what its like to deal with this, she says. I want to help comfort others.
 
Shes been doing that as best she can for years now. Shes befriended the families of those suffering from ALS, riding the roller-coaster with them, empathizing with them, crying over their loss like it was her own.
 
Kim is currently going to Boston College part time, majoring in Psychology. She hopes to expand her contributions to fighting this terror by offering professional support to the care givers.
 
People need to hear, Youre going to be OK, she says. You really need to hear that.
 
Kim says that many people associated with the disease dont like to talk about a timeline in relation to a cure. You just never know, she says. It could come at any time.
 
She makes sure to point out that shes not a doctor, but that I honestly think we will have (a cure) in five years.
 
Thats Kims hope. And, hope, as Andy Dufresne said in The Shawshank Redemption is a good thing, maybe the best thing.
 
The only thing better would be a cure.
 
Progress is being made every second of every day, she adds. Every day theres a little bit of something here, something there. Theres something new every day.
 
Whats truly needed is money, more and more money for research and testing. ALS, which affects 30,000 people throughout the U.S., according to ALS TDI, doesnt receive the notoriety of other diseases and thus it doesnt receive equal funding.
 
It got a huge boost recently, however, when the Muscular Dystrophy Association awarded ALS TDI an $18 million grant, challenging the foundation to raise the same amount over the next six years. Driving 4 Life, Kim says, is hoping to up its contributions to $2 million annually.
 
On October 8, 2001, amyotrophic lateral sclerosis officially entered the lives of Jeff and Kim Julian. It took Jeffs life 33 months later. It is still a large part of Kims life to this day.
 
In Newton, Kim lives just a couple of hours away from Jeffs 16-year-old son from a previous marriage, Keegan. She and Tyler see him as often as they can. She also keeps an eye on golf. When she married Jeff, she not only entered a life-long commitment with the man, but with the sport he loved so much as well.
 
This week, the PGA TOUR heads to Pebble Beach. And, undoubtedly, her colleagues will be talking about who did this and who did that throughout the tournament. She, on the other hand, will be thinking about one unforgettable week five years ago. When Jeff was not just a man with ALS, but a golfer ' a competitor. A fighter.
 
Jeff didnt make the cut that week. But its his grit and determination to make it to the fourth and final round that makes Kim smile to this very day.
 
His (amateur) partner Pard Erdman said, Well, Jeff, if we miss the cut then well play Cypress (Point),' Kim recalled. Jeff looked at him and said, Id rather play Pebble. Id rather make the cut.
 
That was a good example of Jeff and his courage. He just never gave up.
 
And neither has Kim.
 
To make a contribution to ALS research and ALS TDI, contact Driving 4 Life
 
Email your thoughts to Mercer Baggs
 
Related Links:
  • More on Jeff Julian
  • An Inspirational Rock at Pebble (January 30, 2002)
  • Life Goes on for the Julians (January 26, 2004)
  • Lerner: Julian Lives On (July 15, 2004)