My friend Kim asked me to write about her cousin, Justin, and I even went to Justin’s house so that I could do a thorough job. Justin is a remarkable human being, as you are about to read. Kim submitted Justin’s story to Extreme Home Makeover, and, bless those people, they do wonderful work. But, Mr. Berkus, um, may I call you Nate? I hope so. But, Nate, I want you to read Justin’s story. I know it will touch your heart; how could it miss, your heart is so big. And I know that if you were to help Justin and his family, not only would you magically create a dream house that would also suit the special needs of Justin's family, but you would bring more love into that house than there already is, if that’s possible. Truth be told, they have love to spare, so you’d get some too.
Imagine this: You are an active, strong, and healthy sixteen-year-old young man. In fact, you’re a star athlete. On a year-round basis you participate in sports, track & field, soccer, football, and tennis. You have won trophies, tournaments, and championships. And then one day you are out for a run, and your left foot “flops” just a bit. You stumble. Then over the next six months you find that your left foot flops and drops more often than not. Soon you are in and out of doctors’ offices. Podiatrists. Neurologists. Orthopedists. You begin wearing a splint. By the age of 18, you can no longer run. No more sports. By the time you begin college, you must wear a leg brace all of the time. But there is no diagnosis either. No answers.
That is the beginning of the story of how a progressive disease began to claim Justin Skeesuck’s body, starting with one foot and relentlessly working its way to his other leg and then up his body and down his arms. But this is also the beginning of the story of how one man would not let a progressive disease claim his heart, mind, and spirit.
Justin underwent a myriad of medical tests over the years, biopsies, EMGs, MRIs, and the like. Over the years doctors have monitored his symptoms, performed tests, prescribed physical therapy, and administered various drug treatments. In college, Justin needed braces and canes. Finally, the braces and canes could no longer sustain Justin and he was forced to use a wheelchair, which he has not been able to leave since 2006.
Justin was eventually diagnosed with a form of Muscular Dystrophy called ALS (commonly known as Lou Gehrig’s disease). Doctors were stymied by Justin’s symptoms as the onset of ALS typically occurs in older adults. This makes Justin’s situation that much harder. Not only is the early onset of ALS in Justin’s case unusual, but so too is how Justin deals with the disease on a spiritual level. Justin attends support groups, but it is he who typically provides the support for others, others who are often twice his age. As a mentor to others with ALS, Justin tells them that he doesn’t ask “Why?” His life motto is: “Why not?” He says that ALS has taught him to live life to its fullest while responsibly living within his means. So while the wheelchair has made it harder for him to get out of the door, he has made the extra—and often incredible—effort to mentor others, be involved with church mission trips, participate in the April 2006 Stride & Ride, and be featured in a segment on the Jerry Lewis 2006 Muscular Dystrophy Association Telethon – all to help others. Justin's friends and family are rallied and poised to work again at the upcoming 2008 MDA Telethon.
While typical ALS patients are older and have raised their kids and retired from work, Justin and his wife, Kirsten, have two young sons to support, Jaden born in 2003, and Justin born in 2005. Justin is a self-employed graphic designer. Working mostly with computers, he has so far been able to support the family while operating his business from home. His desk and computer are in the family’s living room, where he can work and be part of his boys’ lives as much as possible. His home office is shared with two boys, toys, a dog, and the family television set. Kirsten is a nurse, and while they have had to put pride and privacy aside to rely on extended family to help with the care of the children in order for her to do so, she must work part time to maintain the health insurance that is crucial for Justin’s medical needs. As the ALS has recently progressed to claim all use of one of Justin’s arms, his ability to continue to work as a graphic designer grows weaker along with his body.
Now, imagine this: Justin’s wheelchair does not fit through the narrow hallways and doorways of his older home. So what breaks Justin’s heart the most? Is it that he was a star athlete and is now confined to a wheelchair? No. Is that he was a strong provider and is no longer able to support his family? No. Is it that he needs someone to carry him into his bathroom? No. What breaks Justin’s heart is that he cannot get into his young children’s bedroom to read them a story at night.
Justin’s family needs a small guesthouse on the back of the property they own in which extended family members can stay to help provide care for Justin and his children. Justin's wife must continue to work to support the family and provide essential medical insurance. Also, the small main home needs to be remodeled so that the narrow doors and hallways are widened to accommodate Justin’s wheelchair. A guesthouse and wider halls and doorways are solutions out of reach financially for Justin and his young family, but not out of the realm of possibility in this world. So as we think about two young boys, tucked in their beds at night wishing their daddy could still come into their rooms and read them a bedtime story, we must ask ourselves the question that is Justin’s motto: Why not?
Dear Blog This Mom! Readers,
If anyone out there has Nate Berkus’s email address, send him a link to this, okay? If not, a petition to the universe will suffice nicely.
P.S. If you want to link to this post on your blog so that your readers will know about Justin too, that would be rad.