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For Sandy, the articulation of those eight words is clearly a chore, a physical exercise capped in the small victory of realizing I understand her. But Sandy is no stranger to small victories these days—it’s been five years since she was diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou Gehrig’s disease.
Even arriving at a definitive diagnosis was a battle, says Sandy’s husband Kenny, a former oil industry supervisor who retired last year to work from home. As there is still no medical test to definitively identify ALS, Kenny describes the family’s discovery of the illness as a “process of elimination,” a harrowing guessing game lasting eleven long months.
What would eventually progress to severe movement limitation, frequent dehydration, and profound speech difficulties all began with a relatively small annoyance: Sandy would occasionally wake in the night with difficulty swallowing. “We joked that I was trying to smother her in her sleep,” Kenny quips, eliciting a buoyant laugh from his wife. “The unknown is still the part that has always been challenging.”
Kenny characterizes Sandy’s ingenuity, her ability to prepare for this relentless unknown, as a primary weapon against a disease that is essentially turning her body against her through nerve cell deterioration. Even today, he says, Sandy continues to research her own condition, trying to mentally outpace its development. “She really stays in front of virtually every step of this thing,” he says. “You find a way to live within the boundaries, to research the best way to move forward.”
As if to prove their point, Sandy and Kenny show me a turntable fashioned to help pivot Sandy in a seated position, a feeding peg that attaches discreetly to her bra, and a bib fashioned with towel clips. “I think about what I need,” Sandy says with matter-of-fact assurance, “and if it’s not developed, I make it.”
Soon, Sandy will receive a PerMobile C-500, a wheelchair that will allow her to stand upright, finally putting her once again at eye level with a world that sometimes underestimates her. “Some assume she’s had a stroke or a brain injury and that she won’t understand them,” Kenny says. “The majority of people want to help, want to hold a door open or something like that. Then there is a minority…who don’t recognize they’re actually standing in her way.”
Though there is still much that continues to obstruct Sandy’s daily path (the act of swallowing is now a conscious, and sometimes tiring, effort), she and her family are quick to focus on what remains possible. “We had always talked about, when the kids grow up, we’ll retire and travel,” Kenny says. “We’ve adjusted the timeline.”
With their sights set on the Grand Canyon and plans for a four-day excursion with friends, the Olivers had a 40- foot RV motorhome outfitted to accommodate Sandy’s wheelchair. Renovations range from a roll-in shower and an electronic chairlift to speakers throughout the vehicle so Sandy’s voice can be heard while on the road. Mujeeb Khan, proprietor of RV Decor, oversaw the renovation project for the Oliver family. An RV remodeler for five years, Khan has lately led his small but efficient crew to specialize in motorhome adaptations for people with physical disabilities. “The more I am getting involved with disability renovation, I find I get emotionally involved,” Khan says. “You realize this will change people’s lives. Every project I am doing, I am learning.”
Khan, who says he often seeks out a challenge beyond “carpet selection and sort of other trivial things,” worked closely with the Oliver family to ensure that Sandy’s freedom was maximized within the impressive RV layout. Melding the comforts of home (a television and queen-sized bed) with practical adjustments (widened space for a wheelchair, poles on which Sandy can lean for support) became an eye-opening, fourmonth labor of love for Khan and his crew. “When a person is not disabled,” he says, “sometimes they don’t know the value of things in life. This really makes a person humble.”
The very notion of hitting the open road in a fully accessible RV promises Sandy a once-familiar freedom she is eager to recapture. “I get frustrated, not being able to do what I used to do,” she says with a smile. “I want to travel and gamble in every state.”
Khan, who attended last year’s Ability Expo in an effort to increase awareness of his services for those with physical limitations, notes that an RV lifestyle is often ideal for such clientele. “It’s less space to manage than an apartment,” he says. “The whole transportation industry has stopped at van conversion and there has been nothing else available. Now RVs are available, and the independence that goes with it.”
Independence, Kenny says, has always been a vital part of his wife’s character. “For a number of years, Sandy was in a man’s world,” Kenny says. “She was always an office manager, vice president, whatever it happened to be, of a mortgage branch in town. So it was always important she stand up for herself.” Even three years after her ALS diagnosis, Sandy was determined to renew her driver’s license, a goal she ultimately achieved, though the ability to drive has since eluded her as her condition has progressed.
For Sandy, however, the daily battles with her disease have only served to strengthen the bonds she most values, primarily those with her friends, family and personal faith. “I can’t bargain with God, but I prayed that He would allow me time. It’s hard to explain how at peace I am with it all.”
Kenny notes that Sandy’s condition has drawn their family closer together than ever before because decisions and goals now seem more urgent. His decision to leave his occupation of thirty years, driven primarily by an interest in being at home for his wife, was “a change I don’t think I realized I even needed… Because I had such security in my other job, because it was such a known, I probably wouldn’t ever have taken the steps to get out.”
Sandy agrees, saying her circumstance has even influenced her political affiliations. “I was a big, right-wing conservative,” she notes with a grin. “Before the illness, I thought everyone should make their own way, that everyone could pull themselves up by their own bootstraps. I realize now there are so many people who do not have a means or their family’s support. I guess I’ve turned into a liberal.”
“Don’t interview her with me in the room,” Kenny jokes, admitting a difference in political views. “I don’t think the government should have to take care of everyone.”
The family’s uniquely light-hearted attitude towards Sandy’s circumstances has influenced others in Sandy and Kenny’s broad circle of friends and colleagues. For the last five years, the Olivers have participated in the Walk to Defeat ALS at Beach Park. Sandy’s volunteers, dubbed “Sandy’s Soldiers,” show up in droves to raise money for ALS research in California. In her first year at the Walk, Sandy touted a team of more than 100 walkers, raising more than $20,000 in sponsorship donations.
Though the couple says it intends to use the refurbished RV to visit South Dakota and the Carolinas in the near future, Sandy finds that her illness has, perhaps for the first time, invited her to recognize the value of taking it a little easy. “I cannot tell you that, if there were a cure tomorrow, I would want my old lifestyle,” she says, looking out the glass patio door of the beautiful Bakersfield home she shares with her husband. “Work was so consuming and I never took the time to enjoy life. And I really enjoy watching the birds.”
Kenny agrees that the slowed pace of their life has held some benefits for the Olivers’ thirty-year marriage. “You really dissect this situation and think, ‘How will I face my own mortality?’” he says. “I have a model to follow now. Sandy can’t do the things she used to be able to, but you either don’t do them or adapt to them. And she’s not been one to ask for help.”
At this, Sandy simply interjects: “I am now.”
by David Radcliff
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