Why Jack Silver Had ALS (Lou Gehrig’s)

I was asked why my main character in, “Be Still,” has Lou Gehrig’s? This is not a spoiler alert, it is in the first chapter.  At first it took me some time to decide what kind of disease my character would have and I didn’t want to go with the same disease I used in my first book, “When I Thought I Was Tough,” (and I can’t give that disease because it would be a spoiler).

As a nurse who works in a very busy and very small hospital, I get the opportunity only once in a while to actually talk to a patient.  This is rare, if you have ever been a patient or worked in a hospital setting then you know this to be true.  One day I was assisting in turning a patient, a very young woman with a bright, sunny smile and a handsome man sitting by her side with the exact same disposition.  Her legs were weak and appeared at first sight to be slightly small for her body size.  She wasn’t a big woman, in fact she was quite petite, which is why I noticed the smallness of her legs.

The woman was able to use her hips to help in rolling her over and she constantly apologized for being such an inconvenience, but she continued to smile the entire time.  At such a young age, and with her wonderful attitude, I assumed she had merely been injured skiing at one of our local mountains.  So I asked why she was in the hospital and she quickly justified my rational.  It was a snowboarding accident.

But there was more–

This woman had been diagnosed with ALS, or Lou Gehrig’s as many people know it by.  She had been diagnosed nearly two years prior and told she only had months–maybe a year at most–to live.  She laughed and took her husband’s hand and squeezed it tight and said, “I had a choice to make: give in and die, or fight, fight, fight.” She chose not to give in and put up one hell of a fight.  Every time the docs gave her a “deadline” she proved them wrong by taking on some adventure on her given “expiration” date.  Her first adventure was skydiving at her six month mark when she should not have been walking.  Her second adventure was jetskiing in Hawaii on her one year mark and expected time of demise.  She began taking these excursions every three months and sending her doctor pictures and postcards showing her desire to live life to the fullest.

I was in amazement and a bit teary eyed, but she never faltered.  She held her husband’s hand and gave him a smile.  Her latest trip was learning to snowboard but she fell and summarily broke a bone.  This would be, as she put it, time not so well wasted.  Without use of her legs during recovery, she knew it would allow the disease to start moving at a faster pace.  She looked at me and said, “Guess I fought off the inevitable too long.  Sometimes God has to push you down a hill, strapped to some board on your feet, and send a squirrel to cross you path, and cause you to lose balance.” She paused, and I finally detected a redness in her eyes.  “I’m okay with it.  I lived and loved and now I get to meet Jesus.”

She made it three years beyond her “expiration” date before she died.  Her husband was at the hospital visiting a friend and recognized me as the girl who turned his wife every two hours.  He told me she did go on to walk with a cane after the leg injury and she continued to fight until her very last day, but in the end, she was called home.  Those were his words. He thanked me for my kindness then disappeared down the hall and I never saw him again.

When I started writing the character of Dr. Jack Silver for my book, I initially gave him Grave’s Disease and created this story line around that.  But at one point the story of the woman with ALS came back to me and stayed with me for days.  I knew I had to change Jack’s disease to ALS and to let my readers know that this disease is out there and that, to date, there is still no cure.

My character chose to give up hope.  He chose to give in to a diagnosis for his own personal reasons.  But I still remember that petite woman, the one with the bright smile, the woman who held her husband’s hand, who skydived, jet skied, and snowboarded despite her diagnosis and the timeline she was given. For the life of me I do not remember her name, but I remember her story.  And through my book others will know about ALS and be a little more aware.  It was because of a woman who wouldn’t quit that my character came to be who he is.  He doesn’t have her strength by any means, but he shares her illness, as do so many others.

to learn more about ALS please visit ALSA or search ALS on WordPress to read about other stories.

My name is Tania L Ramos and I am a registered nurse, author, and loved by my family.  To learn more about my book  please visit www.BeStillNovel.com

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