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.
  

8 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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    Replies
    1. Good day viewers , my name is Jessica Campell ,Am here to let the whole world know that I was diagnose of herpes 7years ago were all hope was lost and I had nothing to do about it,I just accepted the faith that one day I will cure of this disease and I just pray everyday for a helper and one day my sister introduce me to a great herbal man called Dr. CHUKWU MADU HERBAL HOME that she saw on internet,well, I gave him a try on his email. dr.chukwumaduherbalhome@gmail.com, I was not fully convinced until he sent me the herbal medicine which he ask me to take for two weeks I took it with faith and i went for a retest in different hospitals and today am cured of this virus and am also using this medium to let all those having STD,like herpes and the rest not to give up,their is a man who can cure you,his name is Dr CHUKWU MADU , contact him on  dr.chukwumaduherbalhome@gmail.com  or  contact him on his WhatsApp mobile number . +2347030936239.

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  2. 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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  3. It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through living with Herpes but once again, God is bigger than my stubbornness and broke through that outbreak cold sore and all I had Genital Herpes. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I was just waking up like is this how life going to end this temporary herpes outbreak “fuck everybody with herpes if you know what I mean” but let's be honest here...It is a cowardly to say no to herbal medicine. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of herbals made or taking a bold step especially when it's come to health issues and getting cure. So many young men/ women tell me over and over that Dr Itua is going to scam me but I give him a try to today I feel like no one will ever convince me about herbal medicine I accept Dr Itua herbal medicine because it's cure my herpes just two weeks of drinking it and i have been living for a year and months now I experience outbreak no more, You can contact him if you need his herbal medicine for any such diseases like,HIV,Epilepsy Infertility, Herpes, Hepatitis, Schizophrenia,Cancer,Fibromyalgia,Fluoroquinolone Fibrodysplasia Ossificans Progressiva.Dupuytren's disease,Desmoplastic,Diabetes ,Coeliac disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic, Love Spell,. Email..drituaherbalcenter@gmail.com then what's app.+2348149277967.... My advice to any sick men/women out there is simple... Be Always an open book. Be gut wrenching honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one..

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  4. i was diagnosed with ALS. my symptoms progressed quickly. son i was having difficulty breathing, swallowing and even walking short distance. With the help of DR JUDE HERBAL FORMULA, i have been able to reserve my symptoms using his herbs formula which i feel has made the most difference. it reserved my ALS. visit DR JUDE NATURAL HERBAL MEDS on blog
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  5. My little princess is so beautiful) I underwent using Dr Itua Herbal Medicine. I had a miscarriage 7 years ago. I still can’t hold back my tears when I remember that horrible period of my life. After my loss I couldn’t get back to life for a long time. I’m glad I have my husband. He gave me support I needed the most. Together we can do everything! We wanted to have kids for a really long time. We’ve gone through a lot, but if you want something badly, you’ll get it! I had to search online on how i can use herbal remedy due to my infertility then i came across Dr Itua how he cure all kind diseases and helped a lady from Kansas City to get pregnant so i contacted him on email,He gave me some guild lines to follow he also send me his herbal medicine via courier service which he instruct me on how to drink it for two weeks really i did and after 7 days of having intercourse with my husband few days later i noticed my period didn't come then i decided to go for check up i was pregnant with a baby,Dr Itua is a genuine miracle man..I've got pregnant from first attempt. We were over the moon! Our girls were born in May 2015. We've just celebrated their first birthday. Finally joy and peace came to our family.Here his Email/Whatsapp Number...+2348149277967/drituaherbalcenter@gmail.com He cure the following...infertility Liver/kidney Inflammatory,Diabetis,Fribroid,

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  6. How can I explain this to the world that there is a man who can cure HERPES, I was diagnosed for the past 1 year I have being into HERPES since 1 year, so I decide to look for help in the internet then I found a post write about this great man called DR. Yakubu , people say good thing about him that this man have cured, a lot of people in the internet, him has power's to cure HSV1 AND HSV2 I don’t believe that there is a cure for Herpes Simplex Virus because though there is no cure for herpes that what I have in mind HERPES had no cure well , my HERPES is negative through the using of herbal cured of DR yakubu , I contacted this man for help because of what i see in the internet. if you need his cured just email him now on dr.yakubuherbalhealingclinic@gmail.com , thank you DR. i will never stop shearing you testimony DR. Yakubu . him Can as well CURE THE FOLLOWING DISEASE:-1, HIV/AIDS, 2, Diseases of the hear 3, Malignant tumors 4. Cardiovascular diseases 5. Diabetes mellifluous 6.Influenza and pneumonia 7.Alzheimer's disease 8. hsv1 - hsv2. If you need LOVE SPELL. E.T.C contact him dr.yakubuherbalhealingclinic@gmail.com or you whatsapp him on +2348057353647...
    Dr.yakubu 하나님은 내 삶을 회복시켜 주신 것에 대한 축복을 계속할 것입니다. 나는 사람들에게 증거를 계속 나눌 것입니다.

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  7. Good day viewers , my name is Jessica Campell ,Am here to let the whole world know that I was diagnose of herpes 7years ago were all hope was lost and I had nothing to do about it,I just accepted the faith that one day I will cure of this disease and I just pray everyday for a helper and one day my sister introduce me to a great herbal man called Dr. CHUKWU MADU HERBAL HOME that she saw on internet,well, I gave him a try on his email. dr.chukwumaduherbalhome@gmail.com, I was not fully convinced until he sent me the herbal medicine which he ask me to take for two weeks I took it with faith and i went for a retest in different hospitals and today am cured of this virus and am also using this medium to let all those having STD,like herpes and the rest not to give up,their is a man who can cure you,his name is Dr CHUKWU MADU , contact him on  dr.chukwumaduherbalhome@gmail.com  or  contact him on his WhatsApp mobile number . +2347030936239.

    ReplyDelete