Laurie Skrivan, one of the St. Louis Post Dispatch photographers, entered a photo of Mary and myself  into The Year In Pictures issue as one of the photos that defined the year for her.  She wrote a long caption describing the scene that ended with “When the nurse jabbed the IV needle into his arm, Mary leaned in and kissed her husband.  The joy evident in his face at her touch explains why he’s fighting for his life”.  At first, I wasn’t sure that I liked the picture, but with that description in mind, I feel like she captured all that was going on with a single photograph.  I felt that Laurie and Michelle Munz did an excellent job.

The first part of Laurie’s caption gave me some pause for thought.  She wrote “As an avid outdoor athlete and competitive mountain biker, though, that could just mean a longer time spent in his life’s twilight, unable to engage in the activities that have defined him up until now”.   I think that is both accurate and well said, but the idea of twilight bothered me a little just the same.  It pointed out to me the variety of perspectives on a situation.  An outsider might accurately see somebody who had recently been well above average in certain activities in his life, who now is only able to do it slowly and with help from others.   An ending, it’s over, sadness, these are the images that twilight invokes for me.

I have been striving to not live in life’s twilight.  Doing the things I enjoy with way below average ability is still doing the things I enjoy, and I still get to do it with the people I love.  Also, as certain things get completely out of reach (many have) that opens up more time and gumption to start on new undertakings.  The best things in life are engaging in challenges and learning new things.  I still have this, the challenges are just different now.  Go kart racing is becoming a very difficult endeavor, but I am still doing it very well for now.  Biking is becoming extremely difficult.  Much help is needed, but I’m out with my wife and friends.  Writing is a new hobby.   Perhaps I’ll be good at it someday.   Tomorrow, I am going to try snow skiing in a sled for the paraplegic.  This might not go well but it’s worth a try.

I don’t want to give the impression that I have things all figured out.  Sadness, or perhaps worry and disappointment is more accurate, does creep in.  It creeps in on everybody from time to time.  We all have the same fate.  Some of us just have a different time frame.  Recently, I was rolling along a paved trail in my wheelchair and looking into the open woods.  That is nice, but then I started imagining myself jumping up and running full speed through them, following the path I would take with my eyes.  This cannot be avoided from time to time and had a certain masochistic pleasure, but THIS felt like “twilight”.

 

A link to the original article:

http://www.stltoday.com/lifestyles/health-med-fit/measuring-life-in-days-als-patient-questions-trying-new-drug/article_347cc0d4-88cf-57e6-af5a-d000a6978526.html