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

PHOTO: Susan Spencer-Wendel (center) pictured with (from left to right) her children Aubrey, Marina, sister Stephanie, Wesley and husband John.Photo courtesy the Spencer-Wendel family
Susan Spencer-Wendel (center) pictured with (from left to right) her children Aubrey, Marina, sister Stephanie, Wesley and husband John.

Susan Spencer-Wendel only Googled ALS once. And then never again.

Instead of focusing on the debilitating disease with which she was diagnosed in the summer of 2011 at the age of 45, the former Palm Beach Post court reporter set out on a year-long journey of joyous living.

The year included a special trip with each of her three children, discovering her birth parents, trekking to the Yukon to see the auroras, tattooed permanent makeup and supervising the building of a tiki hut in her Florida backyard.

Spencer-Wendel's story is chronicled in her book, "Until I Say Good-Bye: My Year of Living With Joy," available today. The book was, in large part, tapped out with Spencer-Wendel's right thumb on her iPhone as she lost the ability to use her hands.

Spencer-Wendel, 46, wrote the book as a gift to her children, but singled out the most important message she wants readers to take away from it.

"Live with joy no matter what! It is possible," Spencer-Wendel wrote to in an email.

Emails from her iPhone end with, "Sent from my iPhone. Thank God for technology."

ALS, amyotrophic lateral sclerosis, is more commonly known as Lou Gehrig's disease. It's a disease that affects the nerve cells in the brain and spinal cord. As the nerve cells die, messages cannot be sent to the muscles, which slowly leads to weakening and the inability to move. Patients often die within three to five years of diagnosis.

"I can't fight what is happening to me," Spencer-Wendel wrote in the book. "There is no cure for ALS."

But she didn't stop there. A side note, in parenthesis, is a perfect example of how her honesty and frustration are underscored with a wicked sense of humor throughout the book.

"(Which, by the way, is absurd. Seventy-three years after Lou Gehrig's famous speech, there's still nothing. Absurd! I mean, my phone can talk to me. We can play remote control cars on Mars. But we can't figure out how to keep nerves alive.)"

When Spencer-Wendel suspected she had ALS, she considered hiring a hit man to murder her.

"I had sat in court with hit men many times," she wrote. "I was uniquely qualified for a premeditated murder—of myself."

But she ditched the idea: "Dumb idea. Messy. Awful." She also bought two books on suicide, but never read them and knew she could not do that to her family.

Despite her honest telling of some of her darkest moments, her joyful stories far outnumber the sad ones.

After being formally diagnosed in June 2011, she said she knew she had at last one more year of good health. Sitting in a Burger King parking lot with her husband John who "can eat at any time," she decided to make the most of her year.

"To take the trips I'd longed to take and experience each pleasure I'd longed for as well. To organize what I was leaving behind. To plant a garden of memories for my family to bloom in their futures," she wrote. "Lou Gehrig was an athlete. ALS took his talent immediately. But I was a writer. ALS could curl my fingers and weaken my body, but it could not take my talent."

"I tucked my head once again in the starting block, steeling myself for the race," she wrote.

And race she did. Her adventures around the globe took her to the Yukon with her life-long best friend Nancy, to California to meet her birth mother, to Hungary with her husband, on a cruise with her sister Stephanie, to Cyprus to meet her deceased biological father's family, and to New York to try on wedding dresses with her 14-year-old daughter, among other trips.

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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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She also added that her family recently added a new member, a 2-year-old French bulldog named Leonard. He joined the family's dog Gracie, who was adopted in 2010 after graduating from a training program in a Florida prison.

Spencer-Wendel called Leonard a "20-pound snuggle machine."

"I love it when Leonard lies on my chest, flat like a frog, and snores. The children laugh each time they see me like this because Leonard is there," she wrote. "They also have figured out that baby clothing (size 6-month) fits him. Last night they had him in a hoodie jacket, rapping."

The movie rights to her story have already been optioned, but Spencer-Wendel says she doesn't have an actress in mind to play her.

"I truly have no opinion about this. I don't know who has the talent best suited for it. And that is what matters. Not how they look," she said. "That said, I would hope for an actress who is as funny as she is dramatic."

The book is being translated into 20 languages and distributed on four continents.

The longtime reporter has been "surprised and overwhelmed" by the response to her story, especially after little feedback to hundreds of stories she wrote as a journalist.

"The messages and people have been so dear," she told "If it wasn't a nightmare, it would be a dream come true -- bunches of people saying nice things about you and getting paid royally to write! Smile."