How Am I? — January 13, 2013

The writer of an article about me emailed to ask how I was doing a few days ago. Yesterday, a friend read my response and suggested I post it. So here goes:


How am I? Hmmm. My pat answer is: As well as can be expected. My body and voice become weaker every single day, but my mind becomes mightier and more quiet. You do indeed hear more in silence.

I marvel at silent planes floating high in the clear Florida sky, their graceful contrail leaving a mark. Then it is gone.

I can no longer walk more than a step or two to the bathroom. My limbs look like swizzle sticks with pearl onions stuck on the ends. I often choke while eating and drinking.

And we often laugh. See my Facebook post about Steph and Dolce & Cabana!

John now has to lift me while I am standing to turn me. We call it the “liftoff” move. I am fascinated more than ever with space. We have been to Kennedy Space Center a few times recently and will go back. I especially adore the IMAX movie of Hubble telescope images. I heard Shuttle astronaut Jim Reilly say the astronauts don’t like to put their space suits on because they cannot scratch an itch. I think of this when I cannot scratch myself.

I listen often to one of my favorite rock songs, guitarist Eric Johnson’s “Cliffs of Dover”. And I think “Thank God I was not a guitarist!” I watch ballet and think, “Thank God I wasn’t a dancer.”

I read about and think a lot about the concept that desire is the root of all suffering. And I try not to desire things, like a cure in time for me. Obviously, not wanting to drive or wolf down a Whopper is much easier to master than that — or not wanting to cavort again with friends.

Yet true to this tale of twinning good and bad fortune: As my condition worsens, news of the book becomes more and more extraordinary. It will be translated into 20 languages, distributed on four continents. Bestselling authors Cokie Roberts, Gretchen Rubin and Capt. Luis Montalvan have read and endorsed it. Apollo Astronaut Edgar Mitchell, sixth man to walk on the moon, has endorsed as well. Unbelievable. Our producers in Hollywood are excited and working away adapting it for a movie. Unimaginable.

I love to hear that readers laughed as well as cried.

The children are well. Life is as normal as ever for them. Their talents are blooming. Aubrey now plays baritone. It’s amazing to watch that little tyke make such a smooth, big sound. Wesley draws like an animator. And Marina is achieving high grades at a premiere public arts high school. I am thrilled.

Please in article note that none of the book and movie stuff woulda happened without my co-author Bret Witter and my agent extraordinaire, Peter McGuigan and his staff at Foundry Literary and Media. They have worked wonders.

We’re gearing up for an ALS fundraising walk in West Palm Beach March 23. Team SpenWen! There are walks in many different cities. Please walk because you can, I say to my friends.

My highest hope is that Until I Say Goodbye will raise ALS from an orphaned disease to one the public stops and thinks: “It’s been 72 bleepin’ years since Lou Gehrig died and still no cure. Time to help get ‘er done.” The powers at Harper Collins are working on an agreement with Project ALS, which helps fund doctors searching for a cure.

One thing I’d like to grouse about to your millions of readers: I have been mistaken for a grandmother three times now. One manicurist, 20 or so, remarked on what a handsome son I have. It was John, my husband. Now he is indeed gorgeous — especially when he chalks up such gaffes to my wheelchair.

I don’t say a word. I just tell magazines like yours! Smile. Point being: Remind people to look past the wheelchair before opening their mouths. Not all adults in them are old.

Thank you for your continued interest in me and my story. It means so much to me.

Susan Spencer-Wendel