Friday, December 26, 2014

Do you know why you poured a bucket of ice over your head?

I haven't given much thought lately to whether or not people know what ALS actually is.

I started this blog to vent, to get my fear and frustrations out of my head and in to the ether.  In to space.  Anyplace but locked inside me where crazy thoughts just multiplied in to crazier thoughts.

As I got to know more about the disease, I decided I wanted to use this blog as a way to let you in on ALS.

Luther and I interact with family and friends with this new identity: terminally ill; I thought this blog could serve as a way to help people in our lives be more comfortable with that label. 

As we met more people who (like us in the beginning) didn't know what ALS was, I thought this blog could shine a light on this disease.

I've lost sight of that a little over the past few months and have simply been reporting on our life.  My place to vent.  

It was a couple nights ago, when we were with a new group of people, that I realized ALS is still a mystery disease.  Even with all of the publicity this summer, all of the money raised (which is awesome!), people still do NOT know what the heck ALS is.

The people we were with knew Luther was sick.  But they didn't know why.  When I said it was ALS, I was asked, what is that.  I said Lou Gehrig's disease. Again, what is that?  I said, you know, the ice bucket disease?  Ohhhh - yeah.... that.  But what is it?

In thinking about the ice bucket challenge, the way the challenge "went viral" and raised so much money was really a thing I'm not sure will be repeated.  It just took off in this amazing way.  I will forever be grateful for that level of awareness in terms of getting people to think about it and actually donate!

But I realized there wasn't much talk about the actual disease.  What is it?  What happens to you?  Is there a cure?  Is there a treatment?

I want people to know what ALS is.  How it affects people.  How we live with it.

Maybe people don't want to know????   Everyone has their own problems.  A lot of people have dealt with illness, their own health issues, with death.  Do you need to hear from me about our host of issues?

I struggle with saying too much here.  With sharing intimate or sad or angry things.  And yet, I hope what I write lets you in.  That's a huge thing with me.  If you've read through this blog, you know I keep things closed off, walled up.  Being with Luther and especially now with this disease, I've been forced, in a good way, to be more open.  Let people in to our life because we need the support.  

I want to let you in on what life is like with ALS in order to create a bond, to share our story.  I don't want pity or sympathy.  I'll take your compassion, your support and I especially like hearing from people who share their perspective on their life.

I think I'm rambling.  ADD thinking.  Weaving from one thought to the next.  It's late.  Time to tuck Luther in to bed.

Summer fun - our icebucket challenge:

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