I’m very happy to report that the audio version of my book, Rebel Health, is now available from Libro.fm, Chirp, and Audiobooks.com. It is narrated by Kim Niemi, whose voice has been described as “soothing, soulful, and powerful.” I love the samples the publisher chose (click on the links above to play them). Here’s the text of the Libro.fm excerpt:
Vicki McCarrell had always dreamed of becoming a mother. When she gave birth at age thirty-eight to her son Sean, life seemed complete. Yes, he had the full facial paralysis typical of Moebius syndrome, but otherwise, he looked perfect to her. Indeed, at the hospital near her home in Van Nuys, California, she was given a diagnosis and not much else. Nobody told her how to feed a baby who could not suck or even warned her that it would be an issue.
With her husband back at work as the manager of a construction company, McCarrell was alone at home with a hungry, crying baby. She grew frantic. Sean was not getting anything down his throat no matter what she tried. She reached a breaking point when a pediatrician scolded her that Sean was losing weight as if she was not desperately worried about that exact thing. None of her friends with typical children had advice. The doctors were no help. What was she going to do?
That’s when McCarrell’s scrappy Missouri farm-girl spirit came out. If something isn’t working right, she thought, you fix it with what you have on hand.
She went to her sewing basket, picked out the biggest needle she had—the one for darning socks—and heated it in the flame of her gas stove. She stuck it through the rubber nipple, widened the hole, and offered the bottle to her baby. Sean drank and drank.
McCarrell decided then and there to change things for Moebius families. They shouldn’t have to live like castaways on a desert island, isolated and making do with scarce resources as their babies starved. She would stand in the breach between what health care can provide and what community could build. But how to begin? One neurologist told McCarrell that she would likely never meet anyone else with Moebius syndrome. It was just too rare.
But she was a Seeker. And Seekers go out on the hunt.
It was 1991, long before the widespread use of email, so McCarrell inserted a clean sheet of paper into her electric typewriter and tapped out a letter to the National Organization for Rare Disorders. She explained her situation and asked if they knew of other people with Moebius syndrome. No, they replied in a neatly typed letter but suggested writing to the National Foundation for Facial Reconstruction in New York. Within a week of mailing that second letter, McCarrell received a reply with contact information for three people, including a mother of a two-year-old with Moebius who lived just four miles away in Reseda, another suburb of Los Angeles.
Rebel Health, Chapter 4: Networkers
Image: Typewriter, by April Killingsworth on Flickr.
Update (and I edited the post to reflect this): The audiobook is also available on Chirp, another independent platform, and they offer the opening story of Chapter 3 as the sample. Audiobooks.com is another place you can find Rebel Health. Check Spotify too!
Rebel Health is not yet available on Audible, the audiobook company owned by Amazon. Instead there is a CD (!) But the hardcover is available for purchase on Amazon and so is a Kindle version. Here’s hoping it is available there soon since it’s a popular app.
If you’re interested, Libro.fm has a playlist of audiobooks for those who want to better understand why standing up to Amazon is important.
Meantime, I hope that people who want to listen to the book are able to access it! Please let me know if you see it offered on other audiobook platforms.
UPDATE: Rebel Health is now available on Audible.