Phil Levin was so overcome with emotion during his first National Multiple Sclerosis Society bike tour two years ago that he felt like crying through much of the ride.
Not three months earlier, he had been bed-bound with vertigo from a severe MS episode.
Yet there he was, with a team of very supportive friends and hundreds of others, cycling 160 miles through Oregon in one weekend.
"It was hard, so hard, it stripped me of any pretense," Levin said.
Finishing was a personal triumph.
"I have an incurable disease, but at that moment, I actually felt like I had beat the disease," he asserted.
This year's Group Health 150 Bike Tour in northwest Washington will be his third ride in as many years and not so intensely personal. This time, as one of two MS 150 honorees, he'll be riding more for others who have been hit harder by MS and need the services and programs his fundraising helps provide.
"The National MS Society, Greater Washington Chapter, makes such a huge difference in the lives of people with MS, that I just want to help them help those who need it most," said Levin, who lives in the Mount Baker neighborhood with his wife, Elizabeth, and 6-year-old twins, Kayla and Abe.
Levin raised $2,505 in pledges last year, and hopes to beat that amount this year.
With bike tours in 48 states, the MS 150 is the largest organized cycling event in the country. Some 700 cyclists, including more than a dozen with MS, are expected to converge in La Conner on Saturday, Sept. 10, for the two-day ride through scenic Skagit, Island and Whatcom counties.
The Pacific Northwest has one of the highest incident rates of MS, a chronic, often disabling disease that attacks and destroys the myelin, or protective insulation, surrounding nerve fibers in the brain and spinal cord, leaving hardened "sclerotic" tissue. The disease's effects are varied and unpredictable and include loss of balance, visual problems, fatigue and paralysis.
There is no cure for MS, which usually strikes people in the prime of life, between the ages of 20 and 50.
Levin's MS first presented itself as an itch along his torso.
"It felt like a rash, but there was no rash there," he says.
A day after receiving an MRI, Levin couldn't walk. His legs felt numb and weak, as if his body had shut down below his waist, he said. After three weeks and heavy doses of steroids to reduce swelling in his central nervous system, he was well enough to play basketball.
Levin had his second episode in 2003 while cooking dinner when, suddenly, he didn't feel good.
"By morning, I was toast. I couldn't do anything for three weeks," Levin remembered.
He suffers from a "relapsing-remitting" type of MS, and drug therapy appears to be reducing the intensity and frequency of his episodes. However, he still can't predict when the next one will strike.
The disease has robbed Levin of the best part of his job as a marine biologist: He can no longer dive and work underwater.
"I was always happiest after spending a day in a kelp forest, coral reef or sea grass meadow," he said. "I was emotionally devastated, but I've developed new means to pursue my passion."
He's still employed as a marine biologist, although now he works from boats or indoors with mathematical models.
MS changed everything, and not all for the worst. While he must live with the uncertainty of his disease, it's easier to see what's important in life, said Levin, 42.
"My wife and my kids were always most important, but [now] it's a lot easier to say no to things that intrude."
His disease also keeps him living in the present.
"Having MS is a powerful motivator to stay in, and experience, the moment," Levin asserted.
Pam McGaffin may be reached via editor@sdistrictjournal.com.[[In-content Ad]]
