Battling Lou Gehrig’s disease can’t keep Ewing down

by Dorothy Jasperson, dorothy.jasperson@lee.net

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Brent Ewing would be the first one to tell you that bad things happen to good people. He’d also be the first one to tell you that living life to its fullest shouldn’t begin at age 65, an age he knows he’ll never live to see pending a miracle.

Ewing, a 1991 Kickapoo High School graduate, was diagnosed with Lou Gehrig’s disease in July of 2007. Since that time his lung capacity has deteriorated by two-thirds and his mobility has diminished tenfold confining him to the wheelchair stage. For Ewing, what hasn’t disappeared is his will to live and his belief that when the good Lord does call him home that he’ll go knowing he’s lived a full life and accomplished more feats and visited more places in his 35 years, than most people even dream of during a longer lifetime.

A military man his entire life, Ewing spent the bulk of his career as a recruiter for the Army, before accepting a job as a recruiter for the National Guard based in Viroqua. He loved his recruiting job, especially seeing kids college dreams come true with the money they received for being actively involved with their country. He took advantage of his own military benefits and earned a bachelor's degree in computer science from UW-La Crosse.

With his scientific higher education intact and being mechanically inclined Ewing spent countless hours lost in a world designed from nuts, bolts and chrome. He purchased wrecked motorcycles and rebuilt them to like-new status. At one point he owned seven cycles and has owned 21 Harley Davidson motorcycles over the last 10 years. Sarah Stussy, a Soldier’s Grove native, who also had an interest in motorcycles fell in love with Ewing’s Fat Boy, a motorcycle he no longer has, but the two of them miss riding together.

“I was looking at his bike and he asked me if I wanted to go for a ride. I did and we’ve been cruising ever since,” Stussy said.

When it comes to motorcycles Ewing still has one dream to fulfill. He is currently in the process of rebuilding a Harley Davidson chopper. Physically he’s no longer capable of doing the hands-on labor and must relay his knowledge by verbally instructing someone to rebuild the machine for him as he sits close by in his wheelchair. An almost impossible task for a hands-on kind of guy.

“I’m just antsy and for me not being able to do the work myself is tough. I love motorcycles and trying to tell someone else how I want something done and watching them do it differently is one of the hardest adjustments I’ve had to make,” Ewing said.

Today Ewing and Stussy cruise from state-to-state on a specially equipped Harley Davidson trike, designed for Ewing to operate in his present physical condition.

Before Ewing became ill, the couple had also purchased a new home two miles out of Westby. The property had a two-story farmhouse, a garage, which doubled as a workshop and just enough land for them to ride four-wheelers on at the end of a stressful day. But, after Ewing was diagnosed with Lou Gehrig's disease the two of them soon realized something had to give, when within months he could no long physically climb the steps to the upper level bedrooms. So with a strong support group on board, the couple sold a few toys and built a handicapped addition on to the house.

Ewing and Stussy have learned to take one day at a time. They don’t focus on the future, because they don’t know what it holds. They focus on the time they have together and continue to find happiness in the moment at hand. That happiness will blossom in January when the couple is expecting their first child. For Ewing and Stussy the birth of their child is bound to be bittersweet. Ewing is thrilled to know his bloodline will continue, but heartbroken to think he may never be able to participate fully in the child’s upbringing. Stussy is excited to become a mother, but scared of the immense responsibility it places on her shoulders with Brent’s physical condition continuing to decline.

For now though Ewing and Stussy are living for the moment and praying for a miracle every time Ewing has a change in medication.

“The cure is out there, they just haven’t put all the pieces together yet. I’m willing to try whatever they suggest at this point. What have I got to lose,” Ewing said

Until a cure is found Ewing will continue to consume the medications he needs to slow the process down allowing him more time with Sarah, a chance to see the birth of his child and a few more motorcycle trips around the bend. As time goes on Ewing’s sense of balance will disappear, along with his muscle tone and ability to move. The disease will affect every function in his body except his eyes and heart. Ewing is grateful he’s not in constant pain and he hopes anyone diagnosed with an incurable disease accepts their prognosis quickly, learns to overcome the heartache associated with the thought of dying and focuses their energy on living life to the fullest because in Ewing’s eyes one is guaranteed tomorrow.

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