Wednesday, October 26, 2016


I couldn't sleep last night.  Wasn't tired.  Couldn't focus on my book.  So I decided to Google.  Now most of the time I Google I end up crying and mopey, and immediately regret that I have done so. When you are a person living with ALS and you Google, most of what you find and read can really put a damper on your mood.  However last night I found a few articles that didn't depress me, but rather raised my spirit.  The first was a medical article about the symptoms of ALS.  Pretty dry, straightforward, cut to the chase kind of information.  The first half of it I understood.  The second was a bit too technical for me.  But in this first half I found that all the symptoms I am having were explained.  I learned a bit about why I am having those symptoms.  I even learned what MIGHT come next.  And for some strange reason this didn't upset me.  It was reassuring in a way that I am a typical ALS person (if there is such a thing) and there were really smart people out there working on collecting data and using this information to find a cure.

The second article I read was a piece written in 2013 by a man named Tom who lived right here in Lawrenceville who lived with ALS.  From what I read, it appears that his ALS affected his respiratory system and speaking before other parts of his body.  He was a gentleman who lived in town, worked at a local private school, was married, and had two girls and one boy - children younger than my own.  The piece discussed his ALS advocacy work, and the fundraising by his young children.  He spoke of his faith and the undying support of his "village", the cards and emails he and his wife read to keep up their spirits.  I felt like he was in part telling my story, feeling my feelings, living what I was living.  After reading his writing, I was excited that maybe I could connect with someone else in town who could relate to the things I was going through.  I Googled some more, and found that he had passed away the following year.  This information initially took my breath away.  I began to openly weep for this man I had never known, yet in ten short minutes had known so well.  I finally fell asleep thinking about this man and his life.

When I woke up this morning the image of this gentleman and his family would not leave my mind. I was no longer mourning his loss, but rather thinking about the very few things I knew about him. How he was so proud of his children, his faith in G-d, he loved and was touched by his community, he had a great smile, and he made the choice to work in a school.  I thought this is a man who loved life.  Today, even though I didn't know him, I am going to honor him, by loving life.  I am going to get up and enjoy my shower, and put on my favorite cozy sweatshirt, and eat chocolate, and hug and kiss my family, and smile and say hello to everyone I see.  I am going to make conscious choices to be happy and take care of myself, and let my "village" know that I appreciate them.  I will do my best to help around the house and not be afraid.  I will work within my limitations.  I will accept my limitations.

So have a happy day everyone.  I love you all.

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