Friday, June 16, 2017

What Did You Say?

      I've always been the guy to strike up a conversation. I would talk to anyone. The toddler in the sandbox, the elderly man on a park bench, the smoking hot soccer mom, even the meth-head on the L train and convince him he really didn't want to rob us. I talked myself and friends out of numerous tickets for a variety of run ins with the police. Even once when we had cases of beer in the trunk and were under age. I turned nosebleed seats into behind the dugout with just a little flirtation. I even got past Matt Damon's security team with a small lie and ended up with a picture with Jason Bourne. The epic stories could go on for hours. God definitely gave me the gift of gab.
      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.
  

3 comments:

  1. Thanks Kris,

    I too understand the IMPORTANCE of speech,of communicating daily, using my voice to share with potential donors our efforts to end ALS through drug development and drug evaluation at our lab. Last year during our #Whatwouldyougive campaign, I did not speak for 24 hours. It was a tough day but NOTHING compared to ALS warriors like you. Thanks for blogging. Terri at www.als.net

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  2. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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  3. MY HEALTH IS RESTORE
    i am so happy to share this testimony with the world because generally there are so many doubts about the cure of hpv and cancer This is real take it serious, i am so happy that today i can give this testimony to the world and also help in saving life of people who has been condemned for death just as i was ,who will believe that herbs can cure hpv and cancer completely from the body, i never believe that this will work, i have spend a lot of money getting drugs from the hospital to keep me healthy, it got to a time that all i was waiting for is death to come because i was broke and i already have strong outbreaks from the hpv, one day i was going through the internet asking questions online just to know more about the latest development in the medical sector to see if there is still hope then i stumbled on a post about about this great man called Dr. Ehiagwina through a publicly made a testimony on how she was also cured of ALS by this herbal doctor who is well known for his strong ancient herbal practice at first i doubted both the woman and the doctor just as so many that see's this post would doubt because medically it has been proven impossible but later i decided to give him a try so i emailed him I did not believe him that much, I just wanted to give him a try, he replied my mail and Needed some Information about me, then I sent them to him, he prepare herbal medicine and sent it through Courier Service for delivery, he gave my details to the Courier Office. they told me that 3-5 days I will receive the package and after receiving it, i took the medicine as prescribed by him at the end of 13days that the medicine lasted, he told me to go to the hospital for a test, and i went, surprisingly after the test the doctor confirm me hpv negative and cancer disappear i thought it was a joke, i went to other hospitals and was also negative the doctors were speechless and i said it was a miracle, thank you sir for saving my life even if you cannot see this post i shall never stop testifying the impact you made in my life by restoring back my life when i was being stigmatized and even avoided by family and friends , I promise I will always testify of your good works. Dr. Ehiagwina contact: ehiagwinaherbalhome@gmail.com OR call +2348162084504 you can also add him on whatsapp.

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