Raising Awareness

I always struggle with turns of phrases that have become cliche.  They've transformed from clever spin for a reason - they're overused because they're constructed just right and it's hard to think of anything better.  When these things are first written, they catch attention and can even motivate people - curiosity, questions, maybe even into action.  They have force, but every time it's repeated some of that force is left behind.

"Raising awareness" is one of those phrases, for me.  I worry that throwing it out there might mean that my attempts to do so will be overlooked - or more likely, scrolled past.  And maybe so, but it's still a good phrase.

Almost nobody that I've every spoken to in a bit more depth about my sister's illness has known what mitochondrial disease is, and I think only one or two doctors have ever recognized 'MELAS' by name.  I find these interactions difficult, not only because I find the full acronym hard to remember (still memorizing it!), but because even going so far as to explain it a little feels a bit like unbuttoning my shirt and revealing the scar over my heart.  In early days it was too red and angry for me to trust anyone but the closest friend to see and talk about, but as time passes it fades.  Sometimes, and I'm almost ashamed to admit this, I forget it's there. 

So it's difficult, when I decide to answer an honest question with an honest reply, and I'm only met with blank stares.  I don't blame anyone, certainly, but this is part of the reason why I'd like to give the curious a chance to learn a little bit more about what I'll be running to support. 

The UMDF is an awesome resource and great place to start.  There is a Canadian version of the site called MitoCanada, and although I've found they have a slightly less extensive variety of materials, they work to support Canadians who are living with mitochondrial disease.  I would like to support both organizations on my run, although each is funding important research projects that can make exciting differences.
 
To give a brief summary, from the UMDF page:

      "Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems."

As I understand it, at least with MELAS, wherever you have a higher concentration of affected cells, you have the greatest number of symptoms (I am open to being corrected on this).  If like me you have affected cells, but there seems to be no great concentration or effect on a particular body system, you can go through life totally unaware that you technically 'have' this condition.  One of the reasons why mitochondrial research is so needed is that there's not that much of it out there, yet.  There is still so much about it that is not understood.

My 21-ish kilometers, and this blog, may end up being a pebble dropping into an ocean, and I'm not going to lie this thought has stopped me from trying anything like this before.  That, and the scar was still too red.  But thanks to the inspiring actions of those around me I've realized that though I may not be able to do much, it's still something.  Even if I can only 'raise' this awareness about as high as my own two arms can reach or my meager number of facebook friends can potentially read, it's at least a little higher than it was before I started.