Before the wheelchairs
Can you imagine?
I hear this often from those who spend time with Dan and Dustin Ripley.
Truly, I can’t imagine possessing a healthy, functioning mind, while being imprisoned in a deteriorating body.
I have tried to imagine, but I cannot. Not fully.
Even their father, Dale, says he can’t imagine how they do it; how they remain so happy and positive.
Dan, 29, and his brother Dustin, 27, have Duchenne Muscular Dystrophy, a crippling disease that devours their muscles.
Both are intelligent young men, with active minds trapped in helpless bodies.
Above: Danny, Below: Dustin
The brothers graduated from Tallmadge High School with honors, despite confinement to wheelchairs and ventilators. Dustin even worked delivering mail on Kent State’s campus until the disease eventually stole his motor skills.
Dan is likely a savant. With a computer-like memory, able to recall sports facts with lightening speed, he can answer just about any obscure stat about a sporting contest. If he could speak clearly, he could have his own sports radio show; he is that knowledgeable. (By the way, he predicted, before their win over Detroit, the Dallas Cowboys would compete in the Super Bowl. He is picking the big game to be Denver against Dallas.)
A Normal Beginning
Their lives began like a lot of other boys’ – going to school, playing baseball, and going to the zoo.
But when Danny was about 5 years old, the muscle-stealing disease started attacking his body, and he couldn’t keep up with the other kids. By the age of 8, the joyful red-head was sentenced to a wheelchair, no longer able to run and jump. Or even walk.
When Debbie was pregnant with Dustin, the family found some comfort in knowing their second child had escaped the terrible disease. Tests early in the pregnancy indicated he would escape the hereditary disease, which claimed the life of Debbie’s brother, Michael, at the young age of 19.
Then came the day when someone noticed the little boy peculiarly climbing the stairs. Dustin would step up with one foot and follow with the next, one stair at a time.
More tests were done. The news that followed devastated the family.
By the age of 4, Dustin was showing signs of the dreaded disease, and soon the third-grader was also in a wheelchair.
Now, the family looks at their unique situation as a blessing because although Danny and Dustin have the disease, they also have each other.
Debbie covers Dustin as the family prepares to go to a movie.
Whether in their bedroom — lying less than six feet from each other — or in the open family room, the brothers are almost never apart.
Unable to even move their heads, each stare up at the ceiling or at a television screen – connected to life by a groaning, wheezing machine that breathes for them. Like newborn babies, they are completely dependent on their parents and their nurses.
They have a lot of time to think. And talk to each other. Most of the time without seeing the other’s face.
It’s difficult for them to speak, and even more difficult for other people to understand them.
But they understand each other when those around them cannot.
“Dan doesn’t really have to speak,” Dale says. “Dustin understands him.”
But then both have hearing as acute as jackals.
Going to the movies
Nurse Erin feeds Dustin popcorn
Squabbles and Bickering
As brothers do, Dan and Dustin have their disagreements, and bickering squabbles erupt. Both boys admit.
“Usually it’s over what we want to watch,” offers Dustin.
“I watch the Today Show; I want to know what’s going on,” he explains. He sighs and rolls his eyes. “I like sports, but not as much as Dan does!”
Then there are times when Dan wants to sleep, but his anxious little brother won’t quit gabbing. Moods change.
Though the brothers get upset with each other, they love each completely. They’re close in ways most of us can’t begin to comprehend.
“They love the hell out of each other,” assures Muhammad Davis, a 31-year-old LPN and one of the boy’s weekend caregivers.
“You could tell that they are extremely close, by just spending a day with them,” adds Davis, only two years older than Dan. “They’ve known each other all their life, and that’s all they have is each other. They’re almost like a puzzle piece. You know if one is missing, the puzzle isn’t complete. They’re so connected. You know, they argue like any other brothers. But man, they really do love each other.”
Alone, Together with Fears
Often alone in the darkness of their bedroom, they talk about their fears.
Dustin is a “worrier,” who worries about “everything.” He fears spiders will climb on him and said he’s had nightmares about it.
Side by side in their bedroom
I try to imagine being unable to use my hands, more helpless than a newborn, and having a spider crawl on me. Suddenly, I appreciate his fear, his helplessness, his vulnerability.
But his biggest fear is that something will happen to his parents, to Dan, or his nurses.
Both Have Dreams
Though both boys hope for a cure that will give them back their legs, they have other goals.
Dustin, clearly the more romantic brother, dreams of getting married. He said he is looking for a woman who is “pretty and fun, and doesn’t care what color hair she has.” Then he adds one more quality: “And smart.”
“Do you believe you will ever walk again?” I ask Dustin.
He ponders the sobering question.
“Not until the Lord comes back,” he gurgled. “Then I will walk again.”
I turn to Dan and ask about his dreams.
“I want to be a better person, and not be selfish,” he says.
He laboriously tries to explain he feels that sometimes he isn’t kind to his brother or his parents.
And sometimes he “gets upset and uses bad words,” adds Dustin.
“I slept well,” Dan advises on this morning.
Covered in blankets, waiting to be suctioned and have their bodies washed, the boys are awake. The wheezing hum of ventilators and beeping monitors are soon joined by the sound of voices on the television.
Much of their lives are spent this way – side by side, in beds or wheelchairs, staring at the ceiling or at a television screen, with the constant humming, wheezing and beeping of machines. Their bedroom feels like a science lab.
“Good morning, Dave,” pipes Dustin, a mask over his eyes and a little stuffed dog perched on his head, as it always is when he sleeps at night.
When I asked Dustin whom he admired most, he didn’t hesitate and answered, “My brother, Dan.”
Big brother Dan, only about one-and-a-half years Dustin’s senior, hears the compliment and squawks something from his wheelchair I cannot understand. Like Dustin, Danny cannot turn his head or move his hands or feet. Clearly moved by his little brother’s words, Dan wants to assure me how much he admires Dustin.
Having a younger brother like Dustin “means everything,” I finally understand him to say. “He makes me laugh, he is fun to be with.”
“We are pretty close because we are here all the time together,” Dustin adds, the ultimate understatement.
Though bound by space, a disease, and a love for Ohio sports teams – especially the Buckeyes, Indians and Cavaliers – the boys (actually, young men) are as different as brothers often are.
Dan’s favorite color is red. Dustin loves yellow.
Dan’s favorite meal is roast beef. Dustin loves spaghetti, with or without meatballs.
Dan appears calmer, more accepting of his place in life. Dustin is anxious and filled with worries.
Everything is Difficult
Occasionally the family goes to a movie (accompanied by a nurse), which is a daunting task requiring physical strength and great patience. Nothing about this family’s life is easy.
Added to the stress of keeping an important routine – picking up medicine and supplies, doctor visits and such – is the increasing financial pressure brought on by the many expenses Medicaid and other insurances do not cover.
Dale and Debbie admit they never really sleep deeply, especially during those late hours when no nurse is on duty.
They are always alert for the beeping warning that something is wrong. They fear if they don’t respond immediately, one of their children could die in minutes without attention.
“They are so fortunate that they have each other,” insists caregiver Davis. “There are some patients out there who are like them, but they don’t have anybody else. So they always have each other, man. That’s very positive, they are very fortunate to have each other.”
Davis shakes his head and grins.
“You know, they’re amazing. To be able to smile and enjoy life, still even under the conditions they are in? I admire people like that.”
“That’s why I try not to complain, and when I do complain, I ask God to forgive me.”
Danny on Christmas Eve
“I mean these guys can’t even do anything, can’t even breathe on their own. That’s why I thank God, after I sneeze. Thank you, God, for giving me my breath back.”
“I just can’t imagine,” he says walking back to their bedroom to finish getting the boys prepared for the day.
“I just can’t imagine.”
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