Todd Kumnick is not one to sugarcoat things.
Life, he figures, is sweet enough.
So he decided with little reservation how he wanted to spend his when he learned in 2004 that he had ALS, or amyotrophic lateral sclerosis, the clinical term for Lou Gehrig's disease. His plan included no calls for sympathy.
"If you are told that the time you have to live on this earth is going to be cut short, do you really want to live that way? And really, who is going to listen?" Todd said. "I made the choice to have a positive mental attitude. When someone asks how I feel, I say ’great’ with a smile. If anything, this has helped me adapt to the slow changes of the disease."
Also overshadowing its effects are the joys in his life, including family ("Without their emotional support, I wouldn't be here," he says) and Peanut, the West Highland terrier that is his nearly constant companion. Todd got Peanut shortly after receiving the ALS diagnosis. He knew he had to have the dog when he discovered that they shared a birthday.
Todd also takes pleasure in tending to the palm trees that complete the landscape he designed around his Delray Beach, Florida home and hosting a January reunion that he describes as a “football bash” there for seven high school buddies from Seattle and Alaska – a tradition that began four years ago.
Not that facing the inevitable at the age of 45 is easy. As Todd gradually lost his voice to the neurological condition, the sense of denial he shared with his parents and sister magnified. When he attended a support group at the local chapter of the MDA's ALS Center, ways of coping with his new reality unfolded. He followed up on a member's suggestion to try a DynaWrite keyboard-based speech communication device and eventually obtained one of his own.
"When I first got it, I wanted nothing to do with it. Not because I didn't like it, but because of what it represented - me losing my ability to speak," Todd said. In time, the technology led to a pivotal personal breakthrough. "It opened my eyes to what I had been missing. It's one thing to write something down and have a person read it, but to have a voice again ... well, that puts you on a level playing field."
The ability to hold his own in conversations completes a bigger picture for Todd, a fun-loving overachiever once accustomed to putting in workdays lasting more than 12 hours in management and sales positions at a car dealership. While feeling fortunate to live near his parents Bruce and Jeanette, he continues to enjoy the freedom of driving or walking to places on his own.
“He’s very motivated to stay as independent as he can for as long as he can,” said his sister, Sherri Alexander Crichton of Los Angeles, who serves on the board of trustees of the Greater Los Angeles chapter of the ALS Association. Todd and Sherri (“Runt” to her brother) share the unique experience of moving from coast to coast with their parents while growing up. Regular email contact and a visit nearly every other month keep the siblings close.
And In a situation where others might passively assume the role of victim, something within Todd keeps him a victor. That something, Crichton says, is “a very deep and unmovable sense of courage and dignity.”
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