My consistent rule has always been not to publicize fundraisers or causes. There are more of them than I have words, and each is convinced it’s the noblest.
However, I also remember something Emerson wrote: “A foolish consistency is the hobgoblin of little minds.” So, obedient to Ralph Waldo’s axiom, I offer this boy in the spirit of the season.
Nicolas Brown didn’t get the short end of the stick. He got hit by it.
Nic, as he goes by, is a freshman at Coronado High School. He’ll turn 15 tomorrow. To his eternal and daily regret, he’s not an ordinary teenager.
He was born with X-linked myotubular myopathy. It’s a condition that retards muscle development and severely affects movement and breathing. It has made him a prisoner of his wheelchair, and he requires constant nursing care, day and night.
The affliction affects one child in 50,000; almost all are boys.
The forlorn look in Nic’s eyes is of one who has suffered long. He has a tracheostomy and a ventilator and also a tube going straight into his stomach. Those aren’t for therapy; they’re for survival.
It’s a disease the devil cooked up when in a bad mood.
Nic would be altogether normal if he had a normal body. He has an impish humor that pops up every other paragraph. But his hurt is on the surface when he describes how other kids have spurned his attempts to form the friendships that every teenager needs for social growth and a sense of belonging. He can’t out-smile his disappointment at being rebuffed by the kids he reaches out to.
Nic’s mother, Katherine Ball, says he weighs about 90 pounds and would be about 4 feet, 6 inches if he could be measured accurately. His speech is nasally, with a slight slur that requires concentration to understand. And that’s OK because Nic says some neat things that reach beyond his years and arise from the hardship of his everyday.
He talks about his grades as would a workman about a job. “I was usually an A-plus student. But I have all B’s in school right now. High school is a lot harder than middle school. Yeah. But I’m trying my best to get A’s.”
Nic has gumption. He speaks of his disability with a “that’s life” shrug. That’s for our consumption, because why spread the pain? Inwardly, how the blazes do we think he feels? He spends his entire day in a motorized wheelchair. It’s his captor, but also his lifesaver. It provides his thin slice of freedom. Without it, he would have to be carried from his bed to a chair to watch TV, then back to bed again.
By the time other kids finish their cream of wheat (or jelly donut), Nic’s already put in a day’s work. It starts with being placed in a vest that shakes him so his secretions can be loosened and then suctioned out so he doesn’t get pneumonia. The whole thing takes two hours. At night, it takes another two hours to get him ready for bed.
Periodic hospital stays and surgeries are predictable.
Nic’s spirits sink when I ask about his social life. “I don’t really have a lot of friends, like real, real friends,” he says.
His mother adds, “He doesn’t get invited to a lot of stuff. It may be because people’s houses aren’t handicap-accessible. He’s the kid in the wheelchair with the trach and the vent. But yeah, it hurts him, for sure.”
Nic adds, “I feel lonely sometimes. I like being around people. I feel invisible a lot. I want to have friends that come over and hang out and stuff, but I don’t.”
What happens when you ask guys to come over and play video games?
“They say they’re going to, but they don’t.”
Katherine had told me she divorced his dad soon after Nic was born, and that his father lives in Atlanta. I ask Nic: Are you close to your dad?
“That’s another story,” he says. “My dad’s a person who is not really in my life a lot. He calls me probably once a month. He used to come here twice a year. Now he doesn’t come. He hasn’t been here in two years.”
Nic’s voice starts to falter and tears stream down his cheeks. His breathing shortens with the emotion, but he continues — now as a young boy pleading for his father: “When I call my dad and he doesn’t want to talk to me, he hands the phone to one of his other kids. I’ve asked him to Skype so we could see everybody, but they only did that one time, and he’s never done it again.”
His mother interjects. “We try to be really positive. We don’t let people see our sadness. They don’t see the days we cry.”
Nic, how often do you ask the big question: “Why me?”
“I don’t ask that question too much. I believe I’m in a wheelchair for a reason.”
What’s the reason?
“I don’t know yet.”
Do you get depressed?
Katherine nods. “He used to only deal with it when it got really heavy, and then he would rage or act out, and be angry with me, and hate the world. Lately, we’ll have a day of crying and scream about it, and then go back to our lives.”
Nic says, “Yeah. If I’m feeling sad or anything, I talk to mom about it. I go to see a psychologist once a week.”
What’s your biggest question for the psychologist?
“Why is my dad the way he is?”
I phone his father in Atlanta and ask for his reaction to Nic’s plea for more contact. He tells me of the demands of a new family, of the 3,000-mile distance, that he pays support regularly and that he buys Nic whatever he asks for.
I listen, but my interest drifts. I’m more concerned about Nic’s pain than his father’s rationale.
Katherine is a bright, attractive woman of 46, but is as much a captive of Nic’s disease as he. I ask her: What’s your social life like?
“Rare. Mostly it’s Nic and me hanging out and doing stuff together. I’ve been single since the divorce.” Then she adds, “There comes a time when you just accept it, and you embrace it, because if you don’t, it makes you suffer.”
Katherine scrapes along on what many would consider a pittance. They live in a low-income, two-bedroom apartment in Coronado. It will surprise some that there is such a thing in that wealthy suburb, but Katherine managed to get one for $813 per month.
Nic receives full payment for medical care and nursing help from the state, and Social Security SSI monthly payments of $497. The state pays Katherine $9 per hour for five hours a day. With support payments from Nic’s father and some part-time work, she says her annual income is about $20,000.
They have no vehicle since the old van they owned coughed a last gasp two years ago. For transportation to Rady Children’s Hospital San Diego, where Nic is treated, they rely on being picked up, after a long wait, by a van that the county sends around. For shopping, they walk.
Recently, they decided to make a public plea for money for a used van that’s been modified for the disabled so they can go to medical appointments on their own — and maybe see a little of the country to which Nic is almost a total stranger. In the seven years of living here, Nic has left San Diego County only once.
They set their goal at $25,000 and went online with a page on GoFundMe.com, under the title “Nic’s Handicapped Accessible Van.” More than $3,700 has been pledged to date, but they know the first round of pledges is the easiest money. The website takes a 10 percent cut.
Pushing dad to the back of his mind, Nic recovers his smile and tells me his adult ambition is to someday design video games. But then, maybe he’ll work with disabled kids. He seems to have a way with them, he says.
I remove and unfold a medical paper from my pocket. I slide it to Katherine, who scans it and nods an OK. I read to Nic: “Because of their severe breathing problems, individuals with X-linked myotubular myopathy usually survive only into early childhood; however, some people with this condition have lived into adulthood.”
(Katherine tells me that of all those with the disease, Nic is now the second oldest.)
Nic receives my words without expression. He knows it. “It doesn’t bother me, not anymore. We’re all going to die. We might as well make the best of it while we’re here.”
Fifteen going on 50.
Later, as Nic is leaving the U-T San Diego building on a rainy afternoon, he sees a rainbow and tells his mother it’s his first, though he had read about them.
A rainbow is not Nic’s metaphor. We make it a symbol for hope, but it only briefly colors the sky and then fades. There is nothing “over” it.
Nic’s wish is more down-to-earth: some friends, some wheels, his dad coming to see him.
It’s my wish, both for Christmas and Hanukkah, that my man Nic gets put on the road to a fuller life.
Fred Dickey’s home page is freddickey.net
His email is firstname.lastname@example.org