It was disease that paralyzed Dale Dulaney and the Internet that freed him.
Dulaney has been bedridden for more than 25 years with Duchenne muscular dystrophy. It was only in 2009 when a nurse introduced him to one of her friends — Henderson resident Karen Wheeler — that Dulaney found an escape from his bed.
Wheeler can empathize with Dulaney better than most. She, too, has a degenerative muscular disease, spinal muscular atrophy. Wheeler, who spends months and sometimes years finishing a painting, visited Dulaney at his bedside.
“I felt bad because I saw a person trapped by his situation,” said Wheeler, who is confined to a wheelchair.
Wheeler asked her friends if any of them had a computer they could donate to Dulaney, and one did. With some money raised at one of her art auctions, Wheeler also bought equipment, which allows Dulaney to interact with the computer.
“I saw him change as a person,” Wheeler said. “He wasn’t just a ‘thing’ in bed anymore. He was like a viable human being. ... It made him human, I guess.”
Dulaney, lying in his room at St. Joseph Transitional Rehabilitation Center, 2035 W. Charleston Blvd., demonstrated with precision his computer literacy. He operates the computer using only his mouth; his lips move a rod to control the cursor, and he uses his breathing to left or right click. An on-screen keyboard allows him to type.
Dulaney’s speech sounds like a loud whisper, punctuated every three seconds by the whoosh of air coming from his oxygen machine.
“I try to take it,” said Dulaney, pausing for the machine to feed him air, “a day at a time.”
A panoramic photo of the Horseshoe Bend of the Colorado River in Arizona hangs to Dulaney’s right. Photos of his family are near him on a nightstand to his left. His computer is always front and center.
“It opened up a whole new world,” he said.
Before the computer, Dulaney relied on nurses to play music, change the TV station or make a phone call for him.
Using Skype, Dulaney makes video calls to his family and friends, who in turn take him on holiday trips. Last December, his friends used the Skype app on their smartphones to show Dulaney when they went looking at Christmas lights. He also gets to see those friends’ kids trick-or-treating on Halloween, and he was able to watch fireworks with them on the Fourth of July.
“I couldn’t do none of that before,” he said.
They even bring Dulaney with them to church on Sundays. Dulaney said he studies the Bible and prays “all the time.” It helps him keep a positive attitude, he said.
His mother, Doris Dulaney, remembers a son who “played outside all the time” with the other kids in the neighborhood.
Dale Dulaney walked, awkwardly as it was, until he was 13, when he began falling routinely. So he used a wheelchair until he was 27, when he was relegated to a bed and ventilator when his lungs began failing.
Doris Dulaney visits and feeds her son twice a day. Feeding him can take two hours because the disease affects his jaw, leaving Dale only a small part of his mouth that can still chew. Doris Dulaney has done this routine for more than 20 years.
“It’s very hard,” she said. “It stresses me. ... It’s amazing how many times he could have (died), but he didn’t.”
Still, her son takes it in stride.
“He never complains about, ‘Why me?’ A lot of people would get bitter,” she said.
The past four years have been some of the best Dale Dulaney has had in decades. On his laptop, he uses Google Earth to explore the places he never could go but always wanted to.
“I’m kind of an outdoors person,” he said. “I liked hiking and being outdoors. I get kind of antsy sometimes.”
Using webcams, he is able to look at zoo animals and famous beaches in California. If he could go one place, Dulaney said he would like to see Jerusalem. He also would like to see the ruins of Egypt, Rome and other historical sites.
He uses Netflix and other video services to keep up on current shows and movies; science fiction is a favorite genre of his.
Something looms over Dulaney, though. He knows he is going to die — probably sooner rather than later. He admits this. He feels it.
“It’s gets worse,” he said. “Heart, lungs and everything just gradually gets worse.”
Most people with Dulaney’s disease live until their 20s, but he is looking forward to his 55th birthday in August.
“I try to keep out negative thoughts, keep my mind busy,” he said.
Whatever the disease does to the rest of his body, Dulaney’s mind stays sharp. He reads about national and local news and weather. He likes checking local traffic cameras online and voiced concern for the firefighters who battled the Carpenter 1 Fire this month.
And like many, he says he spends a lot of time on Facebook.
Contact View reporter Jeff Mosier at firstname.lastname@example.org or 702-224-5524.