My Friend Anne Writes a Letter to Mr. Webster

Dear Mr. Webster,

Your dictionary is the authority on definitions.  There is no argument about that.  But when I looked up the word courage, I was taken aback.  Why?  Because it says:

“That quality of mind which enables one to encounter danger and difficulties with firmness, or without fear, or fainting of heart; valor; boldness; resolution.”

Photo by Anne Prettyman

Where are the names of people that have ALS?  EVERYONE WITH ALS SHOULD HAVE THEIR NAMES LISTED BESIDE THE WORD “COURAGE.”

My friend Tom is about the noblest man I know.  Tom and I were in high school together 35 years ago.  Tom was the tallest guy I had ever seen, a standout on the basketball team and an academician and I was just a cheerleader, cheering him on to victory from the sidelines.

We graduated, our lives went their separate ways and thanks to the Internet, we reconnected.  I noticed a wheelchair in his profile picture, then the news came that he had ALS.  How could it be?  We were so young….even 35 years later, we were still young.  As Tom and I talked on the computer, I got the most sobering note from him I had ever gotten from anyone…

 “Anne, I cannot walk, talk, eat or sit up by myself. I cannot use my hands.  I live in a nursing home.” At age 48, Tom was diagnosed with ALS.  How much courage does a father need to swallow that bitter pill?  One day, Tom was ministering to his hospice patients, loving his daughters, hiking and swimming, in the fullness of his life and the next, he gets this diagnosis.  How do you summon up the courage to breathe?  To think?  To tell your girls?  To live to the next day? 




Anne Cushman Prettyman, in back
second from left, 1975

  Maybe you need to come up with a new word for these ALS survivors. They are survivors in the truest sense.  Every minute they live is the embodiment of courage.  What they do with those minutes is a testament to who they are.  Being trapped in a body that is failing while their mind is still vibrant requires a courage that is beyond human ability…It is God-given. Of this, I am sure.

Tom is on a mission.  He was diagnosed four years ago.  Due to his age and physical condition at diagnosis, he had 103% lung capacity when diagnosed.  Today, he has 19% lung capacity.  His mission is simple yet huge….He wants to be a voice for those afflicted with ALS.  He writes to raise awareness about the disease. But do not think that you are going to get a dry, medical, approach to ALS.  Most of Tom’s work will make you laugh out loud…he writes of funny things that happen in his nursing home.  Read the story about his bathroom escapades!  He writes about his CNA’s.  He writes about memories, about his daughters and about his dreams.

I cry out “Where does that humor come from?  Tom, I am weeping for you and you are making me laugh…”  That is part of his mission.  He is making ALS real for those of us that do not live with it on a day-to-day basis.  Once you read his work, you are forever touched and cannot ever go back to ignorance.  I saw him recently and the first thing he wanted to talk about was my cheerleading uniforms from 35 years ago!  PLEASE… I am looking at my friend confined to a wheelchair and dependent on an incredible computer program to communicate and he is seriously talking about cheerleading uniforms….

So here we are, Tom is still a big man and he uses his gift of writing to help us all understand the disease and I continue to cheer him on, maybe not from the sidelines anymore!  Please, Mr. Webster, put your people to work and correct your dictionary to show the correct definition for courage:  people afflicted with ALS.

Sincerely,
Anne

(This article was written by Anne Cushman Prettyman as a note to me and is used here with her permission.)