It's not often I get 93 e-mails in response to my weekly column. That's in addition to the 44 online comments published on my column last week.
Posted: Wednesday, January 14, 2009 12:00 am
It’s not often I get 93 e-mails in response to my weekly column.
That’s in addition to the 44 online comments published on my column last week.
OK, it’s never happened.
I wrote a personal column to explain why I couldn’t write my regular column about city government:
I was — and still am — in North Dakota, at the bedside of my 31-year-old brother, who went home to die after contracting pneumonia. He has a rare form of muscular dystrophy called Friedreich’s ataxia.
Complications of the disease made him choke and aspirate on food and water. He refused to go on a respirator, didn’t want any more food or water through his feeding tube and wanted to go home.
His story opened a floodgate.
People from many states wrote that David’s story inspired them to stop feeling sorry for themselves, to try to do more with their lives. It also inspired people to share their own struggles with disabilities, or their loved ones’ disabilities.
Old acquaintances from my hometown of Bowman, N.D. — now scattered nationwide — wrote to wish us well and tell stories of David as a boy.
My two favorites came from classmates of David in elementary school. Heather Braaten of Cold Spring, Minn., recalled one day in fourth grade, when the students brought in treasured belongings to school for an auction. Each student had $1 to spend.
Apparently, David, along with every other boy in the class, had a crush on a girl named Amy Sue. She brought a plastic rainbow to the auction.
David immediately bid his whole dollar.
“It was scandalous!” Heather wrote. “I was completely in awe and perhaps a bit jealous. Such an immediate one-dollar bid was received by no one else! We all climbed up penny by penny and dime by dime. Not David! He knew what he wanted and didn’t even bother to wonder if the next kid would present something more interesting for auction.”
Not long after, David moved away to Bismarck, N.D.
“I’ve wondered about him, though,” Heather wrote. “I’ve wondered about that skinny little romantic with his one-dollar bid. Such a brave heart. It saddens me to hear he had to endure so much suffering.”
Another favorite came from a classmate who remembers David from first or second grade.
“I remember one time staying at his house and all he wanted to do was wrestle,” Ryan Anderson of Missoula, Mont., wrote. “I remember my young mind trying to grapple with the fact that he has some disease, but has more energy than me.”
He also remembered teasing David on the playground the first time he met him because David couldn’t run well. Ryan’s mom chastised him, asking how he’d feel if someone made fun of his older brother, who had epilepsy.
“Later, when I tried to be extra nice to David out of sympathy or whatever, David wouldn’t have it. He just wanted to be friends. Nothing more. Nothing less. Wow. That was a big lesson in my life. I mean, it really has stuck.”
And then there was the e-mail from a Lincoln woman who has a 19-year-old son with Friedreich’s ataxia. Until Laura Plith read about David, she’d only heard of one other person who has the disease. We will be getting together when I get back from North Dakota and I look forward to meeting her son.
A former coworker of mine from Bismarck, who went on to a new job in Iowa years ago, wrote me to say he’s since gotten married, and his wife’s son has Duschenes muscular dystrophy. He cares for him much the way my parents have cared for their three children with M.D.
I had no idea.
And a woman recently showed up on the doorstep of my parents’ house in Bismarck, where we are caring for David with the help of hospice. She worked with my mother briefly many years ago, and recognized David as Mom’s son after reading my column (which also ran in the Bismarck Tribune last week).
She said she and her husband had been having financial problems and she’d decided to take her kids out of school and divorce him. Then she read about David, remembered his mother, and rethought that decision.
She took what little money she had, bought us a huge pile of food, and said not to worry about it because payday was just “a few days away.”
David did that.
So many people wrote about their own families’ struggles with health problems — some far worse than ours — that I was reminded that no matter how tough it seems, someone always has it tougher.
As my brother, Dusty, said recently when I asked him whether he’s lived a good life: “There are millions of people in Africa with no home, nobody to love them, nothing. I have it better than millions of people.”
Dusty is 29, and also has Friedreich’s ataxia.
Reach Deena Winter at 473-2642 or dwinter@journalstar.com.