Monday, January 4, 2010

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the site--is linked to my professional Web address at

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.


For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. 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 and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside 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, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "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--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

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

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.



  1. Good post. I clicked through from NPR on FaceBook and I'm glad I did. I have multiple sclerosis and I've been having a rough time lately. Your piece made me stop feeling sorry for myself for a split second and think about someone else. Thanks for the perspective and good luck on your goals.

  2. Dear Ben,
    I loved your NPR story. I got it from Facebook just a few mins ago. SMA, I know it well , my son passed from SMA at age 4 months on May 14th, 2007. He was perfectly fine(so we thought ) until 3.5 months and then we were admitted to Children's Hospital in Denver where he was diagnosed with Type 1 SMA within 8 hrs.We had 2 more weeks with our shining star at Children's .He passed onto angelhood in my arms. His name is Cash Scanlon Phillips. He is our only child.
    We found out after that fact that both my husband and I are carriers of the SMA mutant gene.Not a prenatal test that is offered to us women.
    We have a blog also that helps us heal, and posts info about the Charity work we do now for Children's Hospital in Denver. We raised $ and built a Healing Garden in celebration of Cashie.We continue to raise $ for Children's Hospital thru our fundraising Concert For Cash(in Jan for 3 years now, to celebrate his birthday!)
    I will follow your blog and check out your other writings and pass things along.
    Please know that I think you are a miracle and talented writer. Please stay well.
    All the best to you in this new year,
    Tess Scanlon-Phillips
    Cashie's Mommy

  3. Hi Ben,
    I just read your NPR column and say more power to you man.

    Thanks for your inspirational words.
    Sharon Gorberg

  4. I found my way to this blog from NPR. Thank You for "A Good Enough Year." I was driving with my husband into work that Monday AM and we were having a discussion about all of the things that we needed to get "done" and how stressful the work week was going to be after the holiday break. We were both silent for a few minutes after your segment. It put things into perspective and reminded us that there are more important things in life than getting through the work week. That fact that we were driving into work...made it a good year for us. While we have been hit by the financial crisis, we have been able to keep our jobs unlike many Americans. And to us...that is lucky enough for 2009. Thank you for sharing your thoughts on NPR and making me reflect on my own blessings over the past year. Because like you, my life is "good enough too."