When I was first diagnosed with ALS it originated because of the difficulty I was having with walking. Now no one wants to hear that you have ALS, but doctors like to soften the blow when they can, so since I was having difficulty in my lower extremities, they put the gracious twist on the diagnosis saying at least it isn't starting top-down. Many people who are diagnosed with bulber onset ALS pass away quicker because they lose their ability to talk, swallow and breathe first. So I had that going for me.
Pretty quick after my diagnosis I built a strong relationship with the Chicago Chapter of ALS Association. They called on my gift of gab to travel to DC and advocate on behalf of those people with ALS, currently, have passed, and will receive diagnosis in the future. I took up the challenge two years in a row. Making congress members shut up and listen regardless of policy and partisan lines. I wear this work as a badge of honor and am blessed that I had the opportunity to make a difference when I did. This past May when the Chapter was recruiting troops to go to DC I had to decline. After two years of fighting this fucking disease it crept past my neck threshold, no matter what we threw at it, it became harder for me to speak clearly and loudly.
My emphatic and ear-splitting roar is becoming fainter and fainter by the day as my tongue muscles atrophy. Now you better believe it, fighting a battle with my own mouth is not one I enjoy, it pisses me the fuck off to say things and not be understood, especially after being such a wordsmith. However, I'm a grown ass man, I've abandoned bitterness and resentment and now focus on reflection.
C. S. Lewis once summarized God's Grace and love for us in these words that fill me with comfort of what's to come and the pain I'm experiencing now. "God whispers to us in our pleasures, speaks to us in our conscious, but shouts in our pain: it is his megaphone to rouse the deaf world." There is purpose to your pain. Don't curse his name for it, use it to bring change to this deafening world.