By FOX News Magazine, April 08, 2013
Living with amyotrophic lateral sclerosis (ALS), Spencer-Wendel, 46, embarked on a series of travels determined to make new memories to leave her family and friends. Although ALS, often referred to as Lou Gehrig's disease, means the muscles in the body break down, Spencer-Wendel's mind remains sharp. With a desire to continue to nurture her love of writing as long as possible, Spencer-Wendel chronicled her adventures in her book "Until I Say Goodbye."
From wedding dress shopping during a trip to New York with her teenage daughter, to a special cruise vacation with her sister, the memoir is an uplifting reminder to make the most of the time you have with the people you love.
We asked Spencer-Wendel's husband John to share a bit about what can all learn from Susan's strength:
It seems like Susan was able to find the strength to see the best in her situation — was it difficult to follow her example?
Susan absolutely is able to see the best in her situation. In fact, she often comments that although ALS has taken away her body it has left her mind untouched. She is thankful she can still pursue her passion, writing. Following her example is extremely hard. Here I am caring for my paralyzed, terminally ill wife facing the eventuality of having to raise three children by myself. Tough to look on the bright side right? But I can. Our situation makes us appreciate each other all the more. I am sure that we will be an example to our children of how people in an loving, committed relationship care for one another.
What is the most surprising thing you learned about your family during this ordeal?
I think what surprised me most is the resilience that our children have shown. Susan and I didn't rush to tell the kids of her diagnosis. Why drop the bomb on them? The progress of her disease was so slow and nearly imperceptible that they didn't seem to notice that Susan went from healthy and fit to unable to move and barely able to speak. When they did ask if Mommy is going to die, I answered simply and honestly. I think they already knew the answer, but were just confirming. Their responses have been very matter of fact and accepting — like their mother's. In fact my eleven-year-old son Aubrey recently told me that one of his teachers had spoken to the class about our situation on a day that he was absent from school. Aubrey was upset and told me that he knows what's happening to mommy and doesn't need any special treatment from the other kids at school.
How has Susan responded to the support she is getting from strangers by sharing her story?
She finds the support from strangers very uplifting. Earlier this week as I was pushing Susan in her wheelchair on a sidewalk in downtown West Palm Beach, a woman walking the opposite direction stopped us and said, "You must be Susan. I just want you to know that I read your book and it changed my life." I don't think Susan stopped smiling until she fell asleep that night.
What was Susan's best or favorite memory from the cruise she took with her sister?
Susan said that the best part of the cruise was the opportunity for her and Stephanie to just talk without any interruptions or distractions. Even though we lived on the same street as Stephanie, it seemed that kids, work, and crazy schedules kept them from having any time alone to just talk.
Can you offer any advice to someone trying to cope with saying goodbye to a loved one?
The best advice I can give is to make sure you tell that person exactly how you feel about her or him, because you may not get the chance to say goodbye. I had a conversation with a friend of mine whose husband died in a bicycle accident. We were discussing which is worse, to have your spouse taken from you suddenly or to have the chance to say goodbye. ( We decided that they are both equally awful). She told me that she takes solace in the fact that her husband died knowing exactly how she felt about him, and he her.
it is my hope and dream not to know when i am about to go. yet again if i will have a chance to get notice from the universe that my days are numbered i will do much of what susan did.
I adore her.
my own book i loved a reading crying was part of the book as much as the smiles.