Good evening... My reflection may start out a little dark but will brighten, I promise. The obvious, I have ALS. The not so obvious, sometimes I wonder if people even remotely truly understand this disease. Forgive me for stating that. Yes, we had the incredible IBC, which we are all so thankful for. But how many continue to advocate, continue to ask questions? Yes, Im dying. I know people say we all are or we never know. True very true. But look Im dying and boy do I know it. Staring mortality right in the damn face. My famous do it today you could be dead tomorrow (ask my dad, this is what I always said to him, and others) My own words in my face. I am becoming paralyzed, trapped inside a body I only once knew...the pain radiates thru my body like a fall fire burning in the night...I am strickened, stiff like a tree branch glazed in ice....later in the day my speech turns into a one syllable wallow like a far off howl in the desert....I cant even properly cry anymore, too much saliva and takes too many breaths. Those are just a few of the physical aspects. Mentally and emotionally thats a whole other topic, which I frequently address here. I have no chance, no pills, no treatments, no surgeries or rehab. Nothing. Besides all that guess what? A part of me is in such a good place. You see in life we cannot let our losses, adversities or failures define us..it is thru those in which we learn, we choose to thrive or grow. We each have the power to matter, make a difference, and I am choosing to matter. Now Im not being conceited, but I matter, I want to matter. To others, to life, to me. I know I am not a celebrity or all over the news, but I matter. In a real way. We all have the power to matter. Just think how the world would be if we encouraged each other to matter? Try it. There are no survivors with ALS, but I choose to survive life. Matter. Real life. Real facts. Real me.
Posted on: Fri, 05 Dec 2014 04:44:06 +0000
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