This morning, NPR’s program Morning Edition aired a commentary by Ben Mattlin, a writer from Los Angeles, California. At just six months of age, he began showing signs of spinal muscular atrophy, a deadly crippler and the number-one inherited genetic cause of infant death. In his commentary, Mr. Mattlin talks about the things he has accomplished despite his condition and how an uneventful year can also mean a good year.

To listen to the segment that aired or to read the transcript on the NPR website, click here.

To One Of The Lucky Ones, The New Year Means More
by Ben Mattlin

For me, this new year is as much about looking back as looking ahead.

I turned 47 in the past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. It gradually, relentlessly weakens muscles.

In my case, the weakening began at 6 months. About half of the babies with symptoms of SMA die before age 2. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I’ve used a wheelchair my whole life. I no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. So, why do so many people feel sorry for me?

They don’t know me, of course. They don’t know that I grew up in a great family, graduated from Harvard, get my writing published, got married and fathered two terrific little girls. There are a lot of reasons why I consider myself lucky.

Still, people have said to me, “If I were like you, I’d kill myself.”

This is supposed to be a compliment, I think. They mean to commend my perseverance. So how come I want to say back, “If I were like you, I’d want to kill myself, too!”

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don’t envy — famine, war, abject poverty. People whose lives I wouldn’t trade for my own. And they retain a stubborn sense of hope and struggle on.

It happens every day. Nothing all that extraordinary.

Don’t get me wrong. I don’t see myself as a modern-day Tiny Tim, cheering everybody up. No, thank you. I reject holding myself up as a triumph of the human spirit.

At home, I grouse and kvetch all the time. It runs in the family.

Plus, life is rough. Like two years ago. I spent most of 2008 in a hospital bed. An infection required emergency surgery. Then something went wrong under the knife. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. 2009 wasn’t anything special. The usual assortment of good and bad. But it was blessedly drama-free. And that was enough to make it a good year.

Sure, I hope for better in the new year.

But even if I don’t get that, I’ll still say I’m lucky. Because sometimes, just normal is good enough.

Last week, Bill and Victoria Strong shared a story of meeting a man, Joe Barnick, who has inspired them in their care for their daughter Gwendolyn, who, like Joe, has spinal muscular atrophy (SMA).

From the Strong’s blog:

November 20, 2009

Joe Barnick, thanks for the inspiration!

This is such a small, small, tiny world in so many ways. Victoria and I have been researching and thinking through ways to use technology to help Gwendolyn communicate. There is a really cool application that we’ve been looking at, Proloquo2Go, that brings augmentative and alternative communication (AAC) to the iPhone/iTouch devices. It looks like it could potentially help Gwendolyn. I emailed support at AssistiveWare, the company that created the application, to ask a few questions and I received a very thorough response from a gentleman named Joe Barnick. It turns out that not only is Joe a very helpful customer support person at AssistiveWare, but Joe also has SMA. He is also the designer and editor-in-chief of the AssistiveWare Newsletter. He was very helpful and he sent me the YouTube video below that shows how he uses his Mac and an AssistiveWare application called KeyStrokes for “all the things he cannot do in the real world”. I feel so fortunate to have met Joe — for so many reasons. He’s an inspiration to me and he reminds me to never underestimate Gwendolyn’s abilities and — in his words — to “never stop fighting for your daughter and never give up hope! : )”. Joe, I can promise you that I never, ever, ever will!

I’m so glad that I met you Joe. Thank you for opening up my mind even more to what is possible and I look forward to keeping in touch! Keep up the great work at AssistiveWare…

Gabriella Garbero is an 18-year-old student at the University of Missouri. Like many freshman, she took part in rush which culminated in accepting a bid from the Kappa Kappa Gamma sorority. But with this experience, Gabriella made history at MU by becoming “the first woman in the university’s history to participate fully in rush while using a wheelchair.”

Gabriella has type 2 spinal muscular atrophy. To enter sorority houses during rush, a friend set up portable ramps so Gabriella could maneuver her wheelchair over stairs. Now that she is a Kappa Kappa Gamma sister, Gabriella keeps two temporary ramps at the house, which the sorority says will be replaced by permanent ramps. Despite these improvements to the house, Gabriella will not be able to live there due to additional accessibility limitations and her dependency on additional personal aides.

With the thousands of students with disabilities on campus, Gabriella does think it is strange that she is the first to pass this milestone. But, she does give her family credit for her decision to rush, saying “I was blessed to be raised in a family where I wasn’t limited just from being in a wheelchair.” Gabriella has already inspired others to follow in her path, as her roommate, who also uses a wheelchair, is considering the next rush season.

To read the full article from the Columbia Missourian, click here.

As it is the end of the school year, students across the country are graduating from their respective schools, including Katrina Gossett and Zak Schmoll. They are different ages, live in different cities, and were recently profiled by different newspapers. But they share at least two similarities: they both have spinal muscular atrophy (SMA) and they aren’t letting it hold them back.

Katrina just graduated with honors from the University of Chicago Law School. With her assistance dog Duke by her side, Katrina was the first wheelchair bound student to graduate from the school. During her three years at the University, she worked to make the school more accessible, in addition to her course study, work at a legal clinic, and participation in a law school musical. Click here to read the full article.

Zak will be speaking during his graduation ceremony as the salutatorian of his class. The seventeen year-old has been in a wheelchair since the age of 3 and despite enduring multiple surgeries to counteract the effects of SMA, Zak excelled academically. He hopes to turn that success into a business degree and possibly into a career in the business-side of sports. Click here to read the full article.

Stacy Zoern, a 30 year old attorney living in Austin, Texas, has written a memoir called I Like To Run Too, Two Decades of Sitting. The book is about her experience growing up with spinal muscular atrophy (SMA). The book describes the challenges she faces living in a wheelchair and the help she requires to accomplish daily tasks due to SMA’s effects. In a recent interview, she said, Zoern spoke about how her aides help her prepare in the morning for work, saying:

“You know all kinds of things, like I can’t reach the clothes in my closet. I need help picking my clothes, helping me use the restroom, taking a shower, washing my hair. I can’t even pick up my hands to wash my own hair. Then we part ways and I’m independently able to go to work right down the street.”

The interview goes on to say that “Zoern hopes her book inspires others living with disabilities to continue with their dreams despite physical limitations.”

To watch the interview or to read the report, click here.

Freelance columnist Daniel J. Vance (pictured left) recently profiled architect Stu Soneson in his weekly column “Disabilities” which can be found in more than 200 newspapers around the United States. Stu Soneson has spinal muscular atrophy, the number-one genetic killer of children under the age of two.

From the article:

Soneson has spinal muscular atrophy, which a National Institutes of Health website describes as a hereditary disease causing “weakness and wasting of the voluntary muscles in the arms and legs of infants and children.”

All this, and yet he has led a “normal” life.

“It was great growing up,” said 48-year-old Soneson in a telephone interview. “I had a great time. My family and friends treated me like I didn’t have any kind of physical problem. I had great friends at school and church. My family made sure I did all the things a little boy would do growing up. I water-skied on my dad’s knees. I climbed mountains riding on my dad’s or brother’s back. I swam in both oceans before I was in college.”

Yet in kindergarten, he could barely stand through the Pledge of Allegiance. In first grade, other students began pulling him around in a red wagon, and in second grade, he started using a wheelchair. His classmates readily accepted him.

“I tended to not think of myself as being different,” he said, “and that probably helped other people not think of me as different.”

To read the full column, visit the archives section of www.danieljvance.com.