Tuesday, May 10, 2016


May is ALS Awareness Month. Today was ALS Advocacy Day on Capitol Hill. So I tweeted at my congressional representatives. I changed my profile picture on Facebook to one that says "I asked Congress to support ALS research. Will you?" I've followed  #alsadvocacyday and the Chicago area ALS association chapter all day on Twitter, searching photos and captions for Kris--my 29-year-old son who has ALS and who was in Washington DC doing advocacy visits with congressional staff members today.

Now I'm searching for three words to put in a post or a video to share at als.net, the advocacy site that channels funds to ALS research at the ALS Therapy Development Institute.

Three words, they ask for. Attempts:

This really sucks.
Please bring hope.
Two to five.
Brains locked away.
Beat back despair.
Much too young.
Power wheelchairs rock.

 I am trying to be useful. Trying to bring attention to PALS--patients with ALS who are passionately advocating for research to find a cure or a way to manage the disease--an answer to ALS that likely will come too late to help them, but that may mean an ALS diagnosis is not hopeless in the future.
It is wonderful but true that this effort in itself brings hope to those who suffer now with ALS.

Kris has never shied away from using profanity--at least when hanging out with friends. (He apparently has an off-switch used in his special ed classroom.) He often uses the hashtag #KissMyALS.  The piety of having a fatal disease need not separate one from vulgarity's life force, its anger and defiance. "Kiss My ALS," because I have this disease but I am not this disease--I am still who I always was, only more focused, more certain of what matters.

I struggle to find words to write about all of this. Kris does this memorably, energetically, honestly on his own at his blog Gronks Finding Grace. Anything else you want to know about the disease you can read on any number of websites. When I try to write as Kris's mother, as a family member of someone with ALS, I end up frustrated, tearful, and unable to let the words pour out onto the screen. This is my baby, my sweet son, my friend, someone I esteem, someone who means the universe to me. I am the mom and I am rattled down to my core by the way ALS has interfered with life, the care for life, the joy in living that is there to be passed from one generation to another.

Joy in living--I think of Kris's neon green beer straw, the one visible in his picture today in Tammy Duckworth's office. Presumably there was water in this cup this morning, but by the time I post this, I'm sure he'll be enjoying something more interesting--good beer makes life better. Tomorrow or the next night, I'll talk with him and hear not only about where he went and what he did in DC, but also hear about who he met and his plans for staying in touch with them, giving to and drawing strength from the ALS community. He'll be thanking God for these things on his blog, and so will everyone who knows and loves him.

Three words. More attempts:

Life is good.
Hope is powerful.
I love you.
Hang on, Kris!

1 comment:

Anonymous said...

My heart reaches out to you and your family. I am a CNA, have been for thirty years. I have seen first hand how diseases effect lives. I have cared for ALS patients , and know what strong people they are. I am also Vickies cousin. I just want to say thank you for bringing this disease front and center. Thank you for the education of What ALS is and how important it is for further research to be done. Thank you for your strength and courage.