Doug Clark: UI student Jodie Lewis is coming to terms with her own disability by learning to help others

Get up. Go to work. Moan about our troubles.

Feeling sorry for ourselves is just part of life, right?

Then once in while someone comes along who makes us forget about our problems and maybe realize how lucky we are.

Let me introduce you to Jodie Lewis.

I met this remarkable woman on a recent Monday morning at the University of Idaho’s satellite center in Coeur d’Alene.

The conference room where we met had a bank of wide windows that offered a spectacular view of the Spokane River and Lake Coeur d’Alene.

As seductive as the scenery was, however, I soon forgot about it as I listened to Jodie tell her story.

I soon learned why the school wanted me to meet her.

Jodie is 42. She commutes to Coeur d’Alene from her home in Sandpoint. She’s been married six years to Kevin Lewis, whom she calls “amazing.” The couple has five kids between them.

In the spring of 2018, Jodie will receive her degree in rehabilitation counseling with a specialty in disability. The graduates help people with disabilities that range from Parkinson’s disease to autism to, well, you name it.

Colleges are filled with plenty of older students these days. Jodie, however, is a bit different than most due to a rare disease called “spinocerebellar ataxia,” which makes just about every aspect of her life a struggle.

SCA, as it’s also called, is a progressive and degenerative condition that robs a person’s mobility and motor skills.

The genetic disease is eventually fatal. There is no cure, as yet.

Jodie and a number of her family members, including her father and brother, were born with SCA.

“There are days when it pisses me off, sure, days when I break down and cry and get angry,” Jodie explained, adding, “But as long as I can work and keep going – I will.”

Those words paint a vivid picture about the character of this woman.

Jodie Lewis is not about to go quietly into any good night.

She actually believes that living with SCA has put her in a unique position to help and empathize with people with disabilities.

She didn’t always possess such a broad perspective.

Jodie said she spent a good part her youth trying to ignore her disease. She copied this approach from her father, John Topp. Despite his own struggle with SCA, Topp managed to earn a law degree and become a practicing attorney.

“He wanted to do something to support his family and not let the disease get in the way,” she said. “I remember watching him and thinking, ‘Wow, that’s cool.’”

Jodie grew up embracing the North Idaho lifestyle, pursuing her passion for hunting and fishing.

About age 21, however, the SCA, started revving up more and more.

The disease affects people in many different ways.

In Jodie’s case, her cerebellum is deteriorating. Walking is becoming more and more of a challenge. She uses a cane now and has trouble maintaining her balance.

Jodie recalled being told that she would be in a wheelchair by the time she turned 40.

That didn’t happen, but “I walk like I’m loaded,” she said, adding with a grin, “but I’m still walking.”

Jodie’s symptoms are extensive: Exhaustion. Nerve pain. Insomnia. Vision difficulties. Muscle atrophy. Leg cramps…

There are ups. There are down. Some days are much worse than others.

“Gradually, I started having to give up the things I enjoyed. I had to learn how to do things differently.”

With something like SCA, it would be easy to give in to depression and stay home.

Jodie instead decided to focus on helping others. She applied for the UI counseling program and was thrilled to be accepted.

“It was the best thing that ever happened to me. It helped me come to terms with my disabilities. It helped me realize that I’m not alone.”

Michelle McKnight Lizotte is the academic advisor for the University of Idaho’s Coeur d’Alene campus and an assistant professor for the school’s rehabilitation counseling and human services program. Disabilities, she said, often force people to become creative and work harder. To so many, “the world in which we live is inaccessible.”

Jodie wants to be part of the solution to this vast problem. “In my next 10 years, if I get them, I want to be an advocate for accessibility.”

There isn’t a lot of time for bitterness when you devote yourself to helping others.

“This is a phenomenal program,” said Jodie, adding that it has helped her to become non-judgmental and to value life.

“I don’t see my disease as the problem,” said the overcomer. “My disease is part of who I am.”

<line4Pwide><QC>Contact the writer:<QC>(509) 459-5432<QC>dougc@spokesman.com<QC>