Friday, July 23, 2010

Til It’s Gone

Sorry about yesterday ALS was being a pain. I have had a severe headache since 12/07. I damaged a few nerves on the left side of my forehead with technology to access the computer. The anesthesiologist is attempting to kill the nerves with phenol injections. Wednesday I had an injection. A side effect is swelling around the eyes. This time the swelling closed my eyes and that started the wheels turning.

Of course the first thought was how horrible it would be to lose my sight and not have the ability to appreciate the beautiful features of loved ones. Even though my son has a pretty good imitation of Jesus Christ going minus the beard I love seeing his towering statue.

My biggest fear and I imagine most ALS sufferers is losing the ability to communicate. I’m down to one finger and a several facial muscles that contract on command without fatigue. I have been at a plateau seemingly for over a decade. Next to the good health of my children I am enormously grateful for this pause in progression. I have said before I cannot fathom anyone more ill suited for this lifestyle than me. I guess knowing I lived life wide open maintains sanity. I would hate reflecting on years of inactivity. I didn’t even sleep much, always figured I could catch up when I’m dead.

Life experience has demonstrated to me nothing lasts forever, difficult times pass and anything good requires nurturing to sustain. I have also leaned how precious every minute is on this journey. Have you seen someone that is capable of squeezing a tube of toothpaste until absolutely nothing remains? Not sure if that’s frugality or OCD, but it sure is a great way to live life, til it’s gone. Thanks so much for reading. Have a great day! dj


  1. The ability to communicate...a beautiful thing, I know people without challenges physically that cannot communicate, it's a sad thing! You're ability to reach so many and remind us NOT to take anything for granted is priceless!

    Thank you again! I hope you're feeling better as we all have come to rely on your messages!

  2. Yes people don't appreciate the ablility to communicate.. it is precious I used to take it for granted to. Not any more. thanmks for posting, Cathy

  3. Hi David,

    First, I really enjoy your strength of spirit which shines through on your blog. Thank you for sharing. Also, I noticed you haven't posted a blog in over a month, so I hope you're ok -- scratch that -- I'm one of your Facebook friends and noticed your new profile photo with you & Carey -- CONGRATULATIONS! :-)

    I do have a question if you don't mind -- can you still operate your computer independently? I read that you're "down to one finger and several facial muscles" but, several years ago, I recall reading something about you having a procedure done to implant a device in your brain that would hopefully enable thought-controlled communication. I'm wondering how that went.

    I'm a vent-dependent quadriplegic myself (due to SCI in 1997 at age 20) and I recently gave a presentation on recreational adaptive technology, included in which was various ways of accessing a computer. Your eye muscles still work, yes?

    There's a relatively new technology called Eyegaze Edge which tracks the user's eyes and enables computer control. I thought it could potentially help you. Here's the link:

    Take care and God bless!!!

    Bill Miller :-)
    C1-2 Quadriplegic with a 221 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc.
    My blog:
    Business website:
    Personal website: