I Can’t Resist A Good Challenge!

Ice Bucket Challenge Donations Top $100 Million in 30 Days compared to $2.8 million during the same time period last year (July 29 to August 29).

Mary looked at me like I was crazy when I told her that I wanted her to dump a bucket of icy water over my head.
“You might gasp and breathe in water and choke,” she warned. But after a few days of prodding she finally agreed to play her roll in the Ice Bucket Challenge. I was hoping that the ice cold water being poured over my head would cause me to jump out of my chair and run, like my Australian friend, Phil, but (SPOILER ALERT) unfortunately that didn’t happen.

Seventeen years ago, almost a year after being diagnosed with this horrible disease known as ALS, I was asked by MDA to participate in the local portion of the Labor Day Telethon. As one of the reporters was asking for donations to help cure ALS, he said, “It’s too late for Bill…” I know that sounds harsh, but it took everything Mary and I had not to burst out laughing on live TV.

Medically speaking, that insensitive reporter was right. I think that’s what made his statement so funny; there’s no need to state the obvious, especially when the dying man is sitting three feet away. Those diagnosed with ALS live an average of 3 to 5 years (I’ve always wondered why they don’t split the difference and just say 4 years). I doubt that the reporter or any of the doctors that diagnosed me would have thought I’d be typing a blog post with an eye-tracking computer 18 years later.

That’s the whole point, nobody really knows what the future holds. We hope and pray for a cure for so many horrible diseases, especially those that have devastated our life or the the life of someone we love. We may not know what the future holds, but we should do our best to leave the world better than we now find it. Yes, dumping a bucket of icy water over your head and/or giving a small donation to the ALS Association, might seem insignificant and even silly in the grand scheme of things, but I’m convinced that these people are trying to shape a better future for those suffering with ALS.

Thank you so much!

About Bill Sweeney

In 1996, Bill was diagnosed with ALS (“Lou Gehrig’s Disease”) and the doctors told him he had 3-5 years to live. He is now completely paralyzed and unable to speak, but by God’s grace, he’s still alive and through his blog shares a message of hope in Christ - Unshakable Hope!

Posted on August 29, 2014, in Uncategorized and tagged , , , , , , , , . Bookmark the permalink. 133 Comments.

  1. Amen Brother! You’re impacting the lives of many with your positive spirit and “Hope” for a cure! Making this world a much better place!

  2. I for got to add … “You are One brave man.”

  3. Love you heart and zest for life, Bill!

  4. Thank you for sharing that!

  5. Lovely to find you typing interesting blog posts with an eye-tracking computer 18 years later you were diagnosed with that horrible disease which got at last some more attention, but at the same time is being misused to bring attention more on ‘popularity’ of unknown and political figures who want to come in the picture, wasting a lot of precious water, but not really contributing much money to advance the research for this illness.

    Like any other person, healthy or unhealthy, nobody really knows what the future holds for him or those around him or her. There are many strange diseases which can bring people in distress and hoping for help whihc does not seem to come from the farmaceutical world because there are not enough patients with such an ilness to make their business profitable. The research would cost to much, so they do not find it worth to invest. It is a shame but the reality of life. Then you could say,where are the people who say they are Christian and ahve agape love? Why are not more of those and other people willing to help fund research for the so many ilnesses which need to be cured?
    As you say we “hope and pray for a cure for so many horrible diseases, especially those that have devastated our life or the the life of someone we love.” Too many lives are having to face big questions and worries, where they sometimes do not know any advice.
    At the other hand we often see by those people who are tortured by such unexplainable disease, that they have such a strength which is so much stronger than an ordinary folk. Often they also can inspire other folks and bring them to do exceptional works.

    “We may not know what the future holds” you say, but about this some people in the world do have hopes and do believe we can have some pritty idea of what that future can entail. When we look at the very old books like the Book of Isaiah, we can get some picture. It is true, not many do believe in such unrealistic world. But people like you and many others are also some proof of the unreality and the miraculous wonders of this world.
    It does not come cheap, it does not come easy. But for sure man got a message, a Word from Someone Who keeps to His Word. In the previous centuries (even millennia) He has shown His Works and proven to fulfil those promises He gave in and for the past and for the future. All His promises, except a few ones, became a reality, so why should we doubt that the last few ones shall not come true?
    Though He does not give it for nothing? He requires also some work from us.

    We should do our best to leave the world better than we now find it and each of us can contribute to it and has to respect everything which is around him or her.
    We think it would be better, instead of dumping a bucket of icy water over your head to really give a donation to the ALS Association and other association which do their best to get funding , advice and treatment for patients with some ‘difficult’ diseases.
    With teh action, Youtube video’s, media attention ALS may have come into the picture, but now the hands have to come out the sleeves and much work is to be done. Lets do it.

    • Thank you for your comments. I’m sure you’re right about people doing this challenge for show or publicity…, but that’s probably the case with most fundraisers. It all works out in the end 🙂

  6. ‘……………………………….jump out of my chair and run………………….’
    Not to be, as you said, but still awesome.

    Very cool Bill-
    all the continued best in the Lords will-

  7. Yes, yes indeed. You are right. They is always a way to make it work with more money and hope and lots of prayers. This week-end our little town will be having a two day event to raise money to find a cure for cancer. In the past two weeks I have been to two funerals of those who lost their battle to cancer. I lost my mother and my father to cancer. It sucks. I have lots three loved one to ALS. My niece recently posted the Ice bucket challenge. A nice post about her mother, who died from the dreaded disease. You are locked into a body and your mind has got to go crazy knowing that there is nothing that be done. We just need to keep working on the project.

    Monday, I – a 1948 poliomyelitis survivor, will be speaking to a local Rotary group to “Thank” them for their continued work to eradicate polio. I am now 66 years old and was 6 1/2 months old when I contracted the disease. October 24, 2014 will be World Polio Day. I was admitted October 1, 1948 as the next polio victim. Just as ALS, it changed my live forever. That’s 66 years of walking with limitation, using braces, crutches and cane at different times to get around. I know it is not the same as ALS where you are so dependent on someone else for care. That someone else loves you and will do anything for you. My husband, children and grandchildren love me and will do anything to help me as well.

    I spend most of my do doing all the good I can for all I can for as long as I can. It takes me longer but with determination I make it work. That is why I speak to Rotary groups. church groups and school children. I enjoy so much sharing my book “All The Steps I Have Taken” published in August 2012. I pray that it inspires many to know that with limitations life is still filled with joy and satisfaction.

    Loved the ice bucket challenge. So happy it had such an impact on the money raised. We’ll just keep praying for the “End Polio Campaign”, ALS research and cancer treatments. God Blessings.

  8. Amazing–good job, Bill! God bless your courage and grace.

  9. Bill, I loved seeing the impish grin on your face! when your wife reached for the ice bucket. I applaud your courage in doing this. And I love your sense of humor too. I had no idea how little money was being donated to ALS. Im glad this challenge is helping. Truly. God bless you!

  10. Bill, I shared your post on my FB The Presents of Presence page…you continue to inspire me daily. ♥

  11. You inspire me and God is using you so big!

  12. Reblogged this on Sweet Rains and commented:
    My blogging friend, Bill, who has had ALS for almost 18 years, did the ice bucket challenge. Way to go, Bill!

  13. What this challenge has done is truly amazing! It has not only raised awareness but funds. My dear friend passed away from ALS in July 2012. He was an amazing man of faith and he would have loved this challenge. So thankful for the creativity of the challenge and the way it has prompted people to respond. Continuing to keep you and your family in my prayers. You, too, are an amazing man of faith and an inspiration!

    • Thank you so much, Shelly. I wish that I would have known your friend Terry. I was amazed by the response to the challenge; the funds are desperately needed. I should have mentioned this in my post – the government spends over 30 Billion per year on medical research and last year only 39 million went to ALS research. Most research for and support of ALS comes from private donations and that’s why this campaign was so needed.

  14. Reblogged this on justhappeneduponthis and commented:
    A madman fer’ sure, but with a lot a’ guts and a lotta’ heart and of course “unshakable hope!”
    God Bless!

  15. Dear Bill, you are my hero 😀 I love your humour, you truly are inspirational. So wonderful to see you here again. God bless you my friend – and I hope you didn’t get too chilly after your dousing 😉

  16. You are truly an inspiration. Thank you for sharing what a person with ALS experiences. My prayers are with you.

  17. Hi bill I’m so amazed by how God is using you. I’m very encourage by your story. What a great testimony to see you find joy in the midst of your trials and to use your circumstances to glorify God.

  18. You have been one of the topics of conversation lately. 😉 I find the ice bucket challenges quite invigorating and so very inspirational. I wish you the best. I really enjoyed this–laughing and crying all the way 😀 . God bless you! Take care! – Amy 🙂

  19. Wow, what a fantastic challenge. My Mum died within 2 years of dx. Your story, faith and courage is inspirational.

  20. I have no words to adequately describe how much I respect your courage, faith and sense of humour. Bless you!!

  21. God bless you, Bill.

  22. Absolutely adored seeing you smile in this video Bill. I remember when I was in elementary school having a MDA Carnival in my backyard in New Jersey to raise money for them in the [cough] 1970’s. Of course it was elementary school and a lot of my carnival was made of cardboard-type games, but the heart was still in it. I don’t remember if we made anything of significance, but I do remember the pride I felt having done something on my own to help someone else. Valuable lesson.

    I can’t imagine what that must have felt like hearing those words from that reporter. But I do understand the comments people say that you have to laugh about because they are ridiculous. I’d find out what his email is and email him a copy of this blog. With a heading that says, “Hey, still here!”

    • Thank you, Hilda – for everything you’ve done! I better not let you know who that reporter because I know you really would email him. I’ve got it on VHS, I might let you watch it (for a good laugh) if you promise not to email the reporter 🙂

      • You know me TOO well. And wow, you still have apparatus to play a VHS tape? THAT is impressive. I have a friend who has offered to put my VHS tape stuff onto DVD for no charge (like my wedding, Patrick’s tapes from the Son-Rise place we took him to, etc.).

  23. Reblogged this on Pbmom's Blog and commented:
    And this is my friend Bill who I was speaking about in my own ice bucket challenge video below.

  24. We haven’t met you either, Bill, BUT anybody the Rogers’ say is a “hero of the faith” and respects you for your “integrity and love for JESUS”… is good enough for us; Curt and Lois say, Blessings and go for it!

  25. Hello Bill, just thought I’d mention to you the reasons for my repost…
    1 – Your life is a testimony of Gods goodness, defying all earthly odds, you are still with your family!

    2 – The positive things that can be accomplished when social media is used as a beneficial tool, evident in the amount of funds raised for ALS (I work for a large CRO and know how expensive research and clinical trials can be)
    3 – I am an IT specialist by occupation and also a Mother of a beautiful 14 year old daughter. She was diagnosed at 14 months old with cerebral palsy NOS annd a chromasonal abnormality. The developmental delay and learning disabilities have been similar to that of premature birth. We have used many different methods of communication including a variety of augmentative communication devices. So, for obvious reasons I think it is awesome when technology is successfully implemented to improve a persons quality of life!

  26. Boy, do I remember watching the annual Labor Day MDA telethon with Jerry Lewis as the host. I’d get permission from my folks to call the local network to make a donation to do my small part. Who knew that one day I’d be reading your blog and challenged to keep my eyes on the Lord and live life to the fullest. Thank you for touching my life with your words. Now you’ll have to excuse me. I want to post this on my facebook wall and make a donation!

    • Thank you, Karen. I am so thankful for MDA! They’ve been so good to us over the last 18 years, in fact, I’m sitting in a really nice wheelchair right now that MDA is letting me borrow.

  27. Best ice bucket challenge ever! I have been reading your blog for a long time, and sadly I have neglected to comment. God bless you Bill, and thank you for blogging. You are such an encouragement to me and I am so thankful for you and your witness for Jesus Christ. Praying for you, your family and for folks to continually donate long after these challenges are no longer trending.

  28. Bill,
    You are the first Ice Bucket Challenge I have watched. I can’t think of anyone who has said more than yourself with your smile! Well done my friend.

  29. Hey Bill,
    This is the second time I posted you on my Facebook page–to introduce you to friends who have participated in the Ice Bucket Challenge but do not know anyone with ALS. I got tickled watching your face when Mary was about to dump the ice bucket–very cute! Blessings to you and your family! ( ;

  30. You beauty Bill! Way to go! you are an inspiration my friend and Mary did a great job. Blessings to you and your family.

  31. Bill, of all the Ice Bucket challenges I have seen, this was absolutely the best one. Really captures the heart of the challenge.
    May God continue to use you as a blessing and light!


  32. Nice to meet you, I found you via Lori Lara

  33. Way to go Bill! You are such a blessing just by being you!

  34. I love the fact that you’ve not lost the ability to smile. That and the bravery with which you live every day. The hope that is yours in the Lord in light of your challenge. I reblogged this and pray people will see the faces behind the challenge. You are, indeed, a hero of the faith.

  35. Reblogged this on Tip of the Iceberg and commented:
    This is a friend I’ve never met face to face, yet I admire and respect him for his integrity and love for Jesus. In spite of 18 years of living with ALS. Please watch his video. It will remind you why we follow through with challenges that seem faddish. There are people living with this disease.

  36. What a brave and amazing hero you are ~ Amen :Y

  37. Incredible… just incredible!!!! 🙂

  38. Fabulous guest appearance! Full of life and hope and reality. Thanks so much, Bill. It’s good to hear your voice.

  39. Reblogged this on Lori Lara and commented:
    Bill knows how much I respect and adore him. His writing inspires me, challenges me, and always refocuses my mind on the things of The Lord.

    Please take a moment to watch his video and send your support, as you can.

    Go, Bill!

  40. Bill, having spent 10 days in your home in May, my eyes were opened to the reality of ALS. I was truly amazed at the level of your endurance, and of Mary’s constant, loving vigilance. Leah, Rose and Kathy also extended their love on a daily basis. Having said this, I think Mary had some fun pouring the ice water on your head! I pray for God’s love to surround you every day. You are an inspiration to us all! Love and Hugs

  41. Bill, I absolutely adore you! I did the ice bucket challenge with my Tough Mudder team in honor of you, my brother. ❤️

  42. Just want to add my “You’re-AMAZING!” to the many others! You, Mary, and the rest of your precious family are a beautiful inspiration.

  43. You are such an inspiration to me. The “ice bucket” challenge was great—and if I’m challenged, I’ll follow your example! Thank you for writing and sharing. When I think of giving up I think of you and its not possible to do that and still go on trying to live my life to its fullness in spite of physical problems!

  44. You are such an inspiration! I just showed my daughters your video…very touching. Our family did the challenge and made a donation as well. God bless you!!

  45. You are such an inspiration Bill! Way to go! God bless!!

  46. Way to go Bill!!!!

  47. Reblogged this on Hopeful and commented:
    This may be my favorite Ice Bucket Challenge.

  48. Bill, I could hear memories of your laugh at Paula’s old house when I saw the sign which said, “I’ve been craving tacos!” I know you still have that Sweeney sense of humor, and your positive outlook and faith! Thank you for sharing your Ice Bucket Challenge!

  49. How wonderful it was to “meet” you, Bill. I was deeply touched by this video, your vulnerability and your sense of humour. My husband and I will be donating on behalf of you.

  50. Reblogged this on livingmoreabundantly and commented:
    Wonderful post from a fellow blogger who has been living with ALS!

  51. Well done!!

  52. Bill, you amaze me with your awesome faith and wonderful sense of humor. My daughter and I think Mary is amazing too (and sweet). Good on both of you. I’ve shared this to Facebook & Twitter.

    Blessings ~ Wendy ❀

  53. Reblogged this on Elaine's Random Thoughts and commented:
    Bill, you never cease to amaze me! God bless you my friend. Reblogging this so others can understand more why a cure needs to be found. Been reminded of you daily as I see how many are participating, even children. Everyone, please donate any amount if you can and even if you are unable to donate, please pray!

  54. Good for you, Bill! I didnt do the challenge but I did donate a few days ago in your honor and shared your story on Facebook. I have thought of you often as I saw all the videos being posted.

  55. Thank you for the re-blog, Tanara.

  56. Thank you very much for the re-blog, Vera.

  57. Thank you, Diane. I’d rather have the whole bucket dumped at once than the slow torture you endured 🙂

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