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As that day draws closer, she's comforted by the way her son, Aubrey, notices the sky's brushstrokes as the sun goes down, how Wesley talks of being a dolphin trainer and Marina dreams of living in New York. She thinks about her husband, John, and prays he finds love again, that he loses not a moment to guilt. She laughs and reads and writes. She lives the best she can, hoping to impart lessons with her parting choices. "I am not gone," she writes. "I have today. I have more to give. I know the end is coming but do not despair." ___ Spencer-Wendel's body has withered and weakened. She must rely on her husband to do nearly everything for her, from lifting a Parliament to her lips for a drag to folding her hands on her lap and fixing her hair. As the book's March 12 release approached, though, her appearance was most notable for the wide smile she wore and the peace that she radiates. She relaxes this average Tuesday afternoon, watching "Law & Order" in her den, enjoying a lick from her new French bulldog and laughing with glee when her sister pays a visit. The book is done, the travels are over, but Spencer-Wendel has found a measure of solace as her life draws to a close. Most ALS patients die within three to five years of diagnosis. She knows her days are few. Though there are new challenges each day, Spencer-Wendel has also found new joy. Eating and swallowing keep getting harder, but she's thrilled by the interest in her book, by the new articles and clippings that keep arriving in her mailbox. Her voice becomes more and more garbled, yet she relishes the time
she and her husband share even though it is her illness that forced him to quit his job. She constantly looks on the bright side. "I listen often to one of my favorite rock songs, guitarist Eric Johnson's
'Cliffs of Dover,'" she recalled by email. "And I think 'Thank God I was not a guitarist!' I watch ballet and think
'Thank God I wasn't a dancer.'" She tries not to wish for the things she knows she can't have. She tries not to wish for a cure. She is comforted by the windfall her book has brought, the financial freedom it will bring to those around her. But she must prepare her children for what's next, must say everything that's left to be said. Some of it, she hopes has been communicated through her writing and her philosophies and her outlook. To accept what comes. To relish the journey. To see fear as a waste of energy. More than anything else, she wants to leave her family so well situated that they will thrive as much after the day comes as before. That they will live. Joyfully.
[Associated
Press;
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