Sep 03, 2014 at 01:57 PM

Ice Bucket Challenge Fades - Living With ALS Challenges Goes On

By Jos Cofio

Ice Bucket Challenge Fades

Did you do it? Did you pour ice water over your head in the name of someone you know who is living, or has died of ALS? I did. Man, it was cold. Yet, my heart has never felt a warmer glow. So many friends, family and strangers honored me directly - from Spain, to Saudi Arabia to every corner of the US. It has been a great few weeks. Thank you.

Ice Bucket Challenge Jos Cofio
Jos Ice Bucket Challenge

So, as the social media phenomenon slows and fades, as we all knew it would, what happens now? The discussions will continue as to how, where and how fast can the millions of dollars raised are to be used. I fully support the use in research for treatments, but that is for another time.

Living with ALS Challenges Persist

For now, it is important to remember that living with ALS means continuing to deal with our own challenges: Each one of us facing our own individual buckets of cold water returing us to the realities of a very different daliy life. 

As you know, I am one of the lucky ones whose "version" of ALS is progressing slowly, but also still causing me to move more slowly myself. My trusty trekking poles continue to help me get to where I want to go, though scanning the road ahead for benches to rest has become a part of the journey: walk a couple of blocks; sit for a few minutes; repeat. 

Hedry's Beach Trekking
Santa Barbara Trekking

So, add to the poles a new friend to help me do daily tasks - my stool. Ben Trust bought it for me recently, and it is where I can dress, getting my pants on, as you do, one leg at a time. For the first time last night, the stool helped me do one of the things that gives me tremendous pleasure - cooking. I made a rice dish in my traditional style: no recipe. Some people who join us for dinner ask for my recipes. I never give them out - they don't exist.  My cooking is much like ALS: my dishes are different every time; ALS is different for every person.

Lessons from Living with ALS

In reality, besides the literal support from a stool, cooking was a joint effort. Please be clear: it used to be the kithcen was MY SPACE. I resisted the well-intentioned offers to help me; I had my way of doing things, others got in the way. Period. Last night, I got a new gift: Ben and I cooked much more as a team than ever. A lesson from living with ALS is the accepting of help graciously - letting others into MY SPACE with the result being better than I am able to do on my own anymore

Jos Cofio
Cookin' with Fire!

Yes, the challenges will continue, in thousand of homes around the world, for those living with ALS and for those being diagnosed daily. I now am able to welcome the help which comes every day from those to whom a bucket of water was not just a "thing to do", but a symbol of the cold reality of the challenges of daily living.

Posted in Overcoming Adversity.