It is impossible to meet Steve and Helene Nichols of Clifton and then walk away, unmoved.
Steve is profoundly disabled, yet those privileged enough to spend time with him and get to know him, somewhat, are struck by — not how much he can't do — but how much he can.
He has an incurable muscle disease, is in a wheelchair and cannot speak. But — odd as it might seem on the surface — he and his wife Helene are joyful and truly happy. When she says, "There's no pity in this house," they're not empty words. Her love for her husband — while having had to adapt to new circumstances — is tangible, palpable and boundless.
Steve, 53, and Helene, 52, have lived in Clifton since 1986. He had his own computer consulting business, and she worked (and still does) as an analyst for the Department of Defense. In their spare time, Steve jogged and, together, the couple enjoyed playing tennis — at which Steve excelled, and riding bikes.
Then in 1994, the usually coordinated Steve began tripping a bit and one leg started bothering him; he also developed a cough. In October, the couple went to their family doctor in Fairfax. That's when Steve was diagnosed with "Lou Gehrig's disease" — amyotrophic lateral sclerosis, or ALS — a progressive, neurodegenerative disease that attacks the voluntary muscles.
"It's a diagnosis that leaves little room for doubt — and even less for hope," said Helene. "I just wanted to be brave. I asked the doctor,
'What can we do now?' He said, 'Seek help wherever you can find it.'" He also told them, "I hope you have a faith, because you are going to need it."
THEY SOUGHT HELP from Johns Hopkins University Medical Center. But they also found it within themselves, their family and their friends. Undoubtedly, because of Steve's medical needs — which can become critical in an instant if his tracheotomy opening becomes blocked and he can't breathe — their life together is different now from the way they once envisioned it. But it's also rich and full.
"ALS is an enemy that stalks in silence," said Helene. "But strangely enough, it has also smiled on us. Over the past near-decade, we have spent some of the happiest days of our lives. At night, I ask him if he wants a cup of tea and, 90 percent of the time, he says yes. Can he taste it through his feeding tube? No. But it's the camaraderie that's important — we can share that time together."
She's also determined that Steve have the best life possible. "I'm unbending when it comes to him," she says frankly. "I'm a fighter, very strong-willed. I believe that both the quality and quantity of life are vastly determined by attitude."
The general prognosis for ALS patients is one to five years — and Steve's almost doubled that, already. "We pride ourselves on the fact that, in October, he will have lived nine years with it," said his wife. "He has determination and devotion to beating it — not just long term, but every day."
"My premise is that we do play to win, and that's his game plan," said Helene. "Resourcefulness and adaptability have served Steve well. Marked as a winner is the person who can adapt to his disabilities and find a way to conquer them and succeed."
Furthermore, she believes he'll be the first to lick this disease. She has infinite faith in her husband and says, "Do not lose sight of hope — it allows you a dream and affords you a future."
It's certainly not easy, but things worth achieving seldom are. And she's never approached his care as a task or imposition — or even entertained the thought that it might be too much for her. She does it out of love.
Steve's tracheotomy was in February; before then, Helene fed him. "It would take me, fork to mouth, five hours," she said. "I made everything from scratch, and I had to pulverize everything. But we'd sit and watch the birds together, and I'd take my time."
PREPARING HIM for the day — getting him up, bathed, etc. — takes two to three hours, but the 5-foot, 98-pound Helene uses a special lift to move him from bed to wheelchair, and vice versa. "He's about as disabled as you can get," she said. "He cannot move his arms or hands, nor speak — because of ALS' effect on his tongue muscles. But he can move his head from side to side and blink his eyes."
Initially, they mainly focused on Steve's surviving. Now that he is, they've been able to concentrate even more on improvements in his quality of life. Steve's mental abilities are unaffected; he's a freelance network programmer and a computer whiz. And his sharp mind and ability to blink his eyes enable him to communicate with others — joking, teasing and arguing like anyone else.
He does so via an amazing invention called the eyegaze. In front of him is a computer with an onscreen keyboard. A small camera below the computer sends an infrared beam of light a distance of about 18 inches, into one of his eyes. Light is then reflected back to the camera and used to calibrate Steve's pupil movement.
His eyes pick out letters on the onscreen keyboard to make words and sentences. They can either be read by others or heard when he activates a device that gives them a voice and enables him to "speak."
Steve can also drive a regular computer this way, with the aid of an onscreen mouse. He can surf the Web — he especially likes the sports sites — and correspond with friends. He's even writing a book on the computer about the special people in his life who've helped him.
"We've got a much broader notion of the word family now," said Helene. Although they pride themselves on providing most of Steve's care themselves, the ALS community has been there for support and aid in obtaining the communication devices their insurance wouldn't cover.
NOR DOES INSURANCE cover his physical therapy. But when they reached the point where they could no longer afford to pay Steve's physical therapist, the woman, named Jeanne, refused to desert them. She instead showed up at their door, at her usual time, the next week, saying, "I came here before as his therapist; now I'm here as his friend."
Another friend, Ray Schleppegrell, one of Helene's co-workers, has also proved invaluable. Helene works full time, four days a week, and two of those days, she has to go to her office. So Schleppegrell drives more than an hour each way, from his home in Columbia, Md., to care for Steve while she's gone.
Steve was in the hospital, about a year ago, and when he came home, Helene wasn't comfortable leaving him alone while she was at work. So Schleppegrell volunteered to look after him for her. "I'm single and don't have any family," he explained. "Helene's my best friend, she needed some help and I could provide it."
Helene taught him how to feed and give medicine to Steve, and the two men have become friends, too. "Steve's a great guy and a very smart gentleman," he said. "He knows so much about computers, it's amazing, and he's taught me about them. He's also a very funny guy and has a great sense of humor."
Now, said Schleppegrell, the Nicholses are "pretty much my family. I think I get more from them than I give." Seeing them together, he said, has taught him the importance of never giving up.
As for Helene, he said, "Every day, I'm more amazed at how much she can do. She has so much love to share with Steve — they're a very special couple. It's really nice to see their relationship and the amount of love in their house. It's truly awe-inspiring."
ALSO KEY to their relationship is the fact that, while her husband may be physically disabled, Helene never forgets that he's an individual, capable of making his own decisions. "There's a balance between being a caregiver and being a wife," she said. "I always ask his opinion and I respect him as a person."
And while she was proud to be labeled a "world-class caregiver" by one of Steve's doctors, it's obvious that she's even prouder to be his wife. "I'm always happy and so is he," she said. "I think that's because we hold onto a day as if it were the carousel's brass ring."
She delights in each small advance he makes, and they both enjoy simple pleasures such as sitting on their deck together, in the late afternoon, reading or feeding the deer in their back yard. They even take trips, often visiting their married daughter Ashlie and her family in upstate New York. They went to the Panama Canal last year and plan to visit Europe, this summer.
When asked what his wife means to him, Steve replies via computer, but his feelings are no less heartfelt: "She's my loveline and lifeline. I'd be lost without her."
Likewise, what keeps Helene going and brings her joy is the fact that Steve "wakes up and goes to sleep with a smile — and, in between, we have a beautiful day, enjoying each other's company. Not only does he need me, but I need him. I depend on his love for my happiness, and he brings my life great joy. I'm blessed to know true love."