Lieberman vs. Lou Gehrig
Death awaits all, but few people know their final fate like Steven Lieberman.
The 46-year-old professional ski instructor and avid mountain biker is almost certain that respiratory complications will end his life.
“I know I will probably die from some type of respiratory failure,” Lieberman said, with little emotion. “I also know that the end is nearer for me than it is for a lot of my friends.”
In January 1999, Lieberman was diagnosed with Amyotrophic Lateral Sclerosis – a neurological disease that has no known cause, no diagnosis and no cure. The only treatment is learning to live with its worsening symptoms which eventually lead to paralysis.
Also known as Lou Gehrig’s disease, ALS is a muscle-wasting disease. It slowly quashes the motor neurons in the brain, leaving the voluntary muscles in the body without any commands to move.
Without any movement, the muscles that control voluntary motor functions such as walking, talking and swallowing become damaged. The final blow usually comes within one to five years after the diagnosis from the physical inability to breathe.
Inconspicuous signs like muscle weakness, twitching, cramping and hyper-reflexivity are usually the first indicators of ALS. But it was slurring of speech that brought Lieberman to the doctor last year.
A ski instructor at Heavenly and the owner of Killer Chicken restaurant in South Lake Tahoe, Lieberman’s schedule was full from dusk to dawn. He attributed his twitching muscles and tired bones to being “stressed out” from the bustling holiday season.
“A year ago Christmas I had to work at the restaurant for 15, 15-hour days in a row,” he said, between labored breaths. “At the end of those days, my speech was no longer the same and I knew something was wrong.”
In denial, he thought relaxation would host a cure. But, after three days of bed rest and no improvements, Lieberman was forced to turn to the medical field for answers. He came back with more questions when the CT scan and MRI tests turned up negative. Finally, an electromyograph test, which assesses nerve and muscle function, determined his diagnosis.
“I was praying that it was a stroke because I knew that I could go into therapy and recover the damage,” he said. “But when I went to see the neurologist he noticed the muscles in my legs twitching, and everything fit into the pattern. It was January 7, 1999 – how could I forget.”
The following week, Lieberman went into hiding.
“I can’t describe it, and you can’t imagine it until you actually go through it,” he said, sitting back in his motorized wheelchair. “I’ve always been an emotionally contained person but I cried and I got mad. I went through all the different emotions.”
Alone in his Kingsbury apartment, the diagnosis seemed logical.
He described the three years before the diagnosis as the time when he was in the best physical shape of his life, but he also recalled experiencing premature symptoms.
“Sometime in 1995, I became emotionally volatile – my temper would flare and I would explode out of control,” he said. “I think that was the very first symptom.”
He also noticed he was having trouble with everyday tasks, like skiing. Photos of Lieberman taken during a ski school clinic two years ago showed a perfect arc on the right leg but a washed out, chattered curve on the left.
Inspecting the imperfection, Lieberman thought he needed new boots.
He also remembered, at that same time, having difficulty flipping a gas switch on his truck with his left hand. Optimistically, he believed that the lever was getting sticky in its old, worn-out age.
Coming to terms with the disease, he spread the word of his diagnosis, first, to his best skiing and mountain biking buddy, Allen Zalkind, and then his mother, Joan, who lives in El Cerrito, Calif.
More than a year later, Lieberman fights to retain the control he had yesterday. The disease has forced him to ponder the ending event that most have the luxury of living in ignorance of – death.
And while family and friends struggle with Lieberman’s outcome, he keeps his focus on the life he left behind and the life that remains.
“Maybe I have a warped sense of humor but I won’t whine – it’s a waste of time,” he said. “I don’t have any choice in this matter and I refuse to be a weakling. I’ve never been weak. I’ve always been independent and I’m not stopping now.
“Why?” Lieberman begs the question. “Why not!”
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