Holy Saturday

My good friend Jeff has too much energy for me, anymore.  I used to be able to keep up with him but this disease has me so very tired.  Holy Saturday, there was this advocacy party in Charlotte, NC. , which is 2+ hours away and I had an old friend in town that flew in from Minnesota, only staying 3 days.  But, Jeff would do anything for me so I asked my friend, and she said “sounds good.”  She drove because I was exhausted, and we had time to find a bite of food first, since the gathering was beer, wine, and dessert. We were the last to arrive, and I did not get far into the door for the people I met; although I must say that it is a little awkward for me to meet people, I cannot speak or stand long, I drool a bit and I have to speak on my phone. There was conversation, of which I was a small part; and a viewing of the trailers Jeff had made of what I used to do and what shape I am in since my diagnosis with ALS.  I had watched the “Staring Down Fate” trailer only once.  It had crushed me and I did not want to view those trailers again.  I never know what will set me off, and I did not want to be crushed into a puddle in a room full of strangers.

I made it through the trailers having to turn my head to the side for my reaction to the man I used to be.  It is very difficult to go from a person with boundless energy, having run and stayed very active my entire adult life, wrestling with my 3 kids nightly, to going paralyzed over a year.  I think everyone in the room got it, got the message of Jeff’s film.  My life, as it turns out, has chronicled the disconnect between man and nature; the wolves maybe still have a chance, but not much in my opinion, not without any management except shooting and removal by traps.  I have an incurable, untreatable, death sentence; the product of too much nitrogen run off feeding the cyanobacteria and producing a toxic chemical that mimics a critical amino acid.  Once started it is near impossible to stop.  So, I rest in the knowledge that people will heed my story and try to change the world for the better.  Why?  Because the people in that room last Saturday convinced me that my story is worth telling.