Deena Winter: What you don’t see when you look at my brother

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Today, I’m not going to write about the mayor’s latest press conference or Jon Camp’s latest fight with Jonathan Cook.

Because today, my brother is dying.

David, a 31-year-old man my family still calls one of “the boys.”

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David has a rare form of muscular dystrophy called Friedreich’s ataxia.

It’s rare — except in our family. Of the seven children, three have it: The two youngest, the only boys in the family, and the second oldest, my sister.

David, Dusty and D’Ette.

It’s a cruel disease that doesn’t show its hand right away. Those who have it learn to walk and talk and everything seems fine, and then around grade school they start stumbling too much. They can’t get the spoon into their mouth properly.

People tend to think they’re drunk, and some aren’t afraid to say so.

Their writing become scrawling.

They go back to crawling. And then the wheelchair.

David’s middle school in Bismarck, N.D., wasn’t handicapped-accessible, so classmates carried him up and down the steps to the second floor.

D’Ette could barely walk a straight line, but she still went out for gymnastics and stayed in it as long as possible, and then became the student manager. Her best move on the uneven parallel bars was a move called the “penny drop” — where you basically just have to have the courage to let go and let gravity takes its course.

After she graduated from high school, she rented a second-floor apartment and crawled up the steps.

All three were reluctant to go into the wheelchair.

David was in it by fifth grade. Dusty is two years younger than David, and the two of them have been each other’s lifeblood. (He’s reciting Bible verses by David’s side right now.)

They would race around the block in their wheelchairs, and occasionally David would end up sprawled out on pavement at the bottom of a fairly steep hill on Hoover Avenue.

I guess Mom figured she’d let them have their fun.

They arm-wrestled in their chairs one day, and Dusty ended up flipping his chair. I guess he lost.

David never complained, though. After David and Dusty graduated from high school, Minneapolis doctors put metal rods in their backs to keep their spines straight because they were getting scoliosis.

David was in so much pain after that surgery he only made it through half of a Vikings-Cowboys game.

David attended two years of college; Dusty graduated from college.

The disease has affected each of them a little differently, but in essence, the muscles gradually deteriorate. They don’t get better.

In recent years, Dusty has almost completely lost his eyesight. D’Ette has a bad heart (it’s a big muscle).

By David’s last year of college, in the late 1990s, he was losing his ability to speak.

Having grown up with three disabled siblings (they call themselves crippled; they think it’s funnier), I often find when I read a story about a disabled person that it only scratches the surface.

It doesn’t get to the nitty-gritty — the reality.

And I probably won’t get much farther.

Of course, it’s hard. A mother shouldn’t have to change her 32-year-old son’s diaper and ask him to blink if he’s in pain. A sister shouldn’t have to wipe her brother’s behind. But somebody’s got to.

Humility gets checked at the door.

But it’s life. You learn where the handicapped ramps are and you learn how to use a Hoyer lift and you feed your brother his oatmeal. You quit working and take care of your sons full time. You buy a $40,000 van with a lift.

You lose your temper because your 32-year-old son keeps you awake at night much more than he ever did as a newborn. You’re sleep-deprived and maybe mad at God and yet every day, you get up and go through the slow routine again.

You accept help when it’s offered.

But it can be lonely. Most of the few friends David and Dusty had in high school and college have disappeared.

People don’t know what to say or what to do, and so they stop coming and calling.

D’Ette was lucky; she fell in love, got married and had two children. Everybody worried she’d drop those babies on the floor and maybe she did once or twice, but they grew into beautiful, sweet, smart kids.

David didn’t find love — not even one date — and Dusty’s still looking.

Most people can’t get past the chairs and see the person in it.

Many times you ask, “Why, God, why?” But I believe the disabled among us teach us so much, if we pay attention.

David has taught me he can be happy every day — every single day — even though he seems to have so little going for him.

Most of his life, he’s relied on others to help him do everything from eat to bathe, but he has always been the first to smile and laugh at our stupid jokes, like the time we pretended he was from a group home so we could get into the movies for free. Dave’s honking and grinning helped convinced them.

He stopped being able to carry on a conversation years ago, but he could still smile. He had the biggest smile in the world — his mouth would open wide and you could see his Mountain Dew-stained horse teeth.

He stopped being able to even enjoy the pleasure of a Mountain Dew years ago. After dysphagia made it difficult to swallow without choking, he got a feeding tube and largely stopped eating and drinking.

So the world would look at David and see what he can’t do: eat, drink, write, talk, walk — or any of the things in between.

But he could smile.

How dare I complain about my life?

Today, his breathing is labored and sounds like what they call a death rattle. He moans most of the time and doesn’t ever really sleep. His chest just pumps up and down like my daughter’s did when she was born with an infection and spent a week in ICU. His heart is beating 100 beats per minute.

The food and water have stopped — the hospice nurse says when the body is shutting down, people don’t want it anymore.

We pray he’s not in pain, but we don’t know for sure.

As I wait for David to step into another world — where I believe he will run again — the hardest thing is that he has now lost the ability to smile.

But I know, without a doubt, he’s trying his damnedest to.

Reach Deena Winter at 473-2642 or dwinter@journalstar.com.