Joyful Book 'Until I Say Good-Bye' Tapped Out With a Thumb

Although Mostly Paralyzed, ALS Patient Takes Up Flower Arranging

Each trip weakened her physically, doing irreparable damage on her body, but seemed to simultaneously do immeasurable good for her soul. When people urged her to stop the trips, she gave the same response each time, "Not a chance."

Spencer-Wendel tells the stories of her travels with a compelling mixture of humor, sadness, frustration, fear, gratitude and, mostly, joy.

In one chapter, Spencer-Wendel turned her reporter's prowess to the gargantuan task of making a scrapbook for each of her children, Marina, 15, Aubrey, 11, and Wesley, 9.

"After I got sick, I'd lie awake at night, thinking, Holy crap. No one but me can find the photos, much less organize and label them. No one can make photo albums for the children--except me," she wrote. "Do it now. Right now, Susan, while you still can."

"I put 'photo albums' on the bucket list after my diagnosis, along with the trips. A journey not out into the world, but back through my own life."

By this time, her hands and arms were so weak that she could not hold a pile of photos or move a box. She spent months with friends and family helping her meticulously organize photos for each child's book.

"After Christmas, I realized that at the rate I was moving, I might be dead before I was done," Spencer-Wendel wrote.

She "ramped up the pace" and didn't let helpers linger on photos or ask too many questions. The photos were eventually handed over to a professional scrapbook maker who delivered the completed products to Spencer-Wendel.

"I shall relive my children's childhoods, as I hope they will one day. I hope they will see in front of them what beautiful people they are," she wrote. "And how much their mother loved them."

In January, Spencer-Wendel posted her response to the question, "How are you?" on her blog.

"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," she wrote. "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."

"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."

When communicating with via email recently, Spencer-Wendel answered the question of whether there have been any particularly memorable events since the book's completion that she wishes could be in the book.

"Lots of em!" she replied. "My sister and mom asked people to write me a letter. A love letter. Then mounted them all in a scrapbook for me. It was so dear."

"I am currently taking a floral design class," she continued. "Three weeks: seven hours a day. And guess who is my hands? John. Manly man. Triathlete. Arranging away. I always wanted to learn, and John agreed to go. That I would surely write about."

Her delight at the image was palpable through the email as was her permanent status as a curious reporter.

"Did you know snapdragons can give off a fume which wilts flowers around them? Or you should remove a lily's stamen to make it last longer?" she asked. "Flowers are so beautiful. I insist they be treated with care."

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