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ALS Worldwide
May 09, 2017

Staring Down ALS With Courage: Michelle Uses Her Eyes To Write Book Reviews!

"My story is like that of many Persons with ALS (PALS). I was diagnosed while still in the prime of my life, stunned to have this random disease, and unready to say goodbye to my young family. How someone deals with ALS is a completely personal thing. Everyone is different. My family and I have figured out how to make life on a ventilator work for us. We've accepted it as our new normal."

Yet, Michelle's courage and productivity while living with ALS is nothing short of extraordinary. *This article shares Michelle's story as published by The Kansas City Star:

"Courage is a pair of brown eyes. They belong to Michelle Melland, a 50-year-old wife, mom of twin teenage girls, and a person with ALS. Six years ago, Michelle's eyes flashed with anger as she heard a Kansas City, Missouri doctor deliver her ALS diagnosis. Now her eyes, her eyebrows, and her lips are the only voluntary muscles in her body that are not frozen.

A former U.S. Army captain and lifelong athlete whose high school high jump record still stands, she cannot move a toe or finger, or move her head from side-to-side. She cannot walk or speak.

But, ALS has little effect on Michelle's sharp mind. Using computerized eye-gaze technology to type on a keyboard by staring at letters, she can read and write. And she’s been writing often, having read 44 books in the last 44 weeks. For each, she has written a review, typed out over hours using only her eyes and posted to her blog, bookthoughtsfrombed.com.

'This blog is what happens when a woman who is productive by nature gets confined to a hospital bed...aren’t I lucky that I get to spend my retirement reading in bed?' She adds, sarcastically, 'Yeah, it’s a stretch...'

Sherrie Hanneman, Director of Communications for the ALS Association Mid-America chapter, said that Michelle embodies the kind of fortitude and resilience that often will arise in individuals who, at first devastated by an ALS diagnosis, later find themselves determined to live as best they can and with a sense of purpose.

'Michelle is just such a great example,' Hanneman said. 'She is not defined by a disease. She is defining herself and using her own words to define herself.' When typed out and played on Michelle's computer, those words can be given a Siri-like synthesized voice.

'I hope others can see that there are ways to still lead a fulfilling life even when experiencing great adversity,' says Michelle.

*Michelle's photo courtesy of the Kansas City Star. Read more at http://www.kansascity.com/living/health-fitness/article146772619.html.