What would you do if…?

One night, about a year before I was diagnosed with ALS, Mary and I were up late watching “Nightline.” Ted Koppel was doing three nights of interviews with a retired college professor named Morrie Schwartz. Morrie had ALS and was sharing his life-lessons with Ted Koppel just as he had done previously with one of his former students named Mitch Albom. Mitch later compiled these life-lessons and wrote a best-selling book titled “Tuesdays with Morrie.”

I hate to admit this, but even after seeing the three nights of interviews and reading the book, I cannot remember most of the life-lessons that Morrie taught. But, I do have one vivid memory from watching those interviews; it occurred while listening to Morrie describe his daily routine – having to rely on his wife and caregivers for virtually all of his needs. After hearing how helpless he was, I turned to Mary and told her I would rather just go to heaven than live trapped in my own body like him.

About a year after making that statement, I was diagnosed with that same “trapped-in-your-own-body” disease. While I believe words are powerful and can even be self-fulfilling (“Death and life are in the power of the tongue…” Proverbs 18:21), I don’t believe my statement had anything to do with my being diagnosed with the same disease the following year, but…

That hastily-made statement began to haunt and even taunt me when I began needing help from Mary with things I once did with little effort. The statement kept playing over and over in my head, challenging me to either disavow my words or live up to them. In this case, living up to my words meant throwing in the towel and going to heaven.

Obviously I chose to change my view and began trying to do my best to live one day at a time. But it wasn’t really me that decided to carry on; it was the grace of God in me, urging me to keep going. Not like a coach on the sidelines shouting, but more like the team captain competing alongside of me. It was then I knew the full meaning of verses like, “My grace is sufficient for you, for power is perfected in weakness.” (2 Corinthians 12:9).

Hastily-made statements (like the one I made about Morrie) that are carelessly uttered by healthy people (like I was) are spoken out of pride. Pride is something we usually don’t know we’re guilty of before being humbled by a severe trial. Pride cannot comprehend the grace of God because pride is self-reliant, self-righteous and just plain selfish. God’s grace (to carry us through a trial) is one of the things people usually don’t factor in before making such statements.

Another thing people (who make statements like that) don’t consider or even understand, is how strong our God-given survival instinct is. Not merely for our physical survival, but also for our emotional and spiritual survival. This is an ironic thing because it would seem that a Christian (who believes in heaven) would be the first to cash in his chips, but the opposite is true. It is usually those that don’t believe in an after-life that judge the quality of their lives by physical, financial and other temporal pursuits and who cannot imagine a life worth living without these things. But the believer can know joy, peace, hope and have a sense of purpose without the worldly blessings. Of course, it’s always best to have both spiritual and earthly blessings, but, to the Christian, the former are essential and the latter are viewed merely as “bonuses.”

Trials cause us to reexamine the hastily-made statements we’ve made before the trial, when we so carelessly said what we’d do if this thing or that thing happened to us. As I discovered, no one really knows what they would do until faced with that situation. This is why the Bible tells us to “be slow to speak” (James 1:19).

This is the only advantage I’ve discovered from losing the ability to speak; I no longer say things that I regret!

About Bill Sweeney

In 1996, at the age of 36, I was diagnosed with ALS. The neurologist gave me 3-5 years to live. 24 years later... :-) I'm completely paralyzed and unable to speak. By God's grace and the great care of my wife, I'm still here. I live to encourage and give hope to others going through difficult times.

Posted on September 27, 2012, in Uncategorized and tagged , , , , , , , , , , , , , , , . Bookmark the permalink. 91 Comments.

  1. Reblogged this on From guestwriters and commented:
    Lots of people encounter many struggles in life. Some get to learn how to cope with them, others get pulled down so much that they do not see any reason any more to live.

    All have good and bad moments in life and whether we’re going through the worst of times or the best of times, history and our own experiences show us that life does go on and that we are just a very tiny atom in it

    It is not the Most High Creator Who brings all that badness over us. But it is Him Who give us the opportunity to work around it and to become stronger, if we allow Him working in our midst.

    We should not fear man nor fear worldly situations or diseases, but should fear God and come to trust and honour Him, putting our ‘tiny’ hand in His Big Hand, to be carried through life.

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  2. God is awesome. I believe the holy spirit led me to your blog and I am thankful! So many times I will just take and take others what they would do if it was them…..
    Truly until you are in that person shoes you don’t know. I had someone violate me in a physical way, and because I found forgiveness in my heart with the help of God. I was ridiculed and called stupid because they would have done this and this, and not forgiven the person.

    But there is a God in Heaven that sits on His throne, and He is my comforter who says I am fearfully and wonderfully made. If I was not suppose to be here then He would have taken my life at 2lb 2oz (birth). But I am here for a greater purpose. I may be broken but I am blessed. I may be cracked, but I am comforted. So we must be so careful.

    May God continually instill his truth by using you as a vessel who is willing to share all by sharing past hurts, but revealing God’s healing power!

    Shenine

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    • Thanks for your heartfelt message, Shenine. I too have had people tell me I was wrong or “weak” for forgiving people. But doing anything that goes against your human nature (carnal nature) out of obedience to God is only defined as wrong and weak etc by those that either don’t know what God says to do or don’t care what He says. So we have to consider the source.
      I read your “about” page where you wrote about you being born prematurely and weighing just over 2 pounds etc. That’s amazing!
      I hope you and yours have a merry Christmas!

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  3. I recently found a beautiful quote that resonates well with your post: “I may have had a tough break, but I have an awful lot to live for.” Ironically, the speaker of this quote is Lou Gehrig. Similar to Gehrig, your blogs portray your strength and determination to never give up hope. I think you’re a great example of a person who truly cherishes life and lives life to the fullest because you understand how precious each moment is. The part that always strikes me is that most commonly those who undergo an unfavorable or life altering event are those who are most attentive to just how delicate life is.

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  4. yet another stunner..!

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  5. optimisticgladness

    Bill, I was wondering if you would consider something for me. In January 2013, I am planning on featuring 31 different people on my blog. Would you be interested in telling your story? It could be your testamony or a story of how God grew your faith or how He helped you overcome a challenging situation. Would you be interested? I ithink people who may read it would be encouraged.

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  6. optimisticgladness

    This is a powerful post. What a great reminder for us to “Be careful little mouth what you say.” Thank you for your encouraging words! I pray that you would be able to enjoy life to the fullest. Have you read Joni Erickson-Tada’s book?

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    • thank you, Lisa. Yes, I wish that I would have followed the Bible’s instructions to be “slow to speak” when I was able to speak:-) Now that I can’t speak, I find myself cringing at some of the things people say.
      I did read Joni’s books – she’s great.

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      • optimisticgladness

        How do you communicate with people when they are in your presence? Do you sign? Do you use a communication device? Do you write on paper? Thank you so much for sharing your hindsight with me.

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        • Good question, Lisa! I am completely paralyzed so writing or signing would be impossible. I communicate using an eye-tracking computer with a text-to-speech program (robot voice:-). I use this same computer to type email and type my blog posts etc. It’s when I’m not on my computer that communication gets really frustrating sometimes, especially when I have an itch that’s driving me crazy:-)

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          • optimisticgladness

            Completely paralyzed? How about swallowing? The reason I’m interested is because I am a pediatric physical therapist and I work with kids with disabilities. I have one that uses a special communication device, but not eye tracking. I’m so glad that technology has come this far, to allow you to be able to communicate the way you do. Its amazing. I do not know you, but I am very proud of you. Thats weird to say, but it makes me happy to see someone like you succeed the way you do through written communication. You must have excellent family support too. I’m so glad Melinda told me to stop by your blog. I’m glad to know you.

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          • Thank you Lisa.
            I am very thankful for the technology, especially for the kids, kids like my Autistic nephew who, like me, communicates with software similar to what I use. He can also play games and watch movies etc on his device.
            As far as swallowing goes, I am not able to eat or drink by mouth; I’ve had a feeding tube for about the last 6 years. And yes, my wife of 27 years is a saint; she takes great care of me AND works a full-time job from home! I also have a caregiver that comes a few hours four days a week so Mary can run errands etc.

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          • optimisticgladness

            Amazing! How has ALS affected your faith, or vice versa?

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  7. Reblogged this on jumpingonclouds and commented:
    This is my new friend, Bill…I’ve adopted him as my brother (he doesn’t know that yet). I’m not taken easily by many people’s stories, but I promise you’ll not only be inspired out of your socks, but you’ll fall in love with his heart. The world needs to know Bill. One thing is for certain. You’ll never be the same after reading his blog. Please share his story.

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  8. Praying for you my friend, a powerful message you have here.

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  9. Thank you for sharing a message of God’s grace. I like these words “it wasn’t really me that decided to carry on; it was the grace of God in me, urging me to keep going”. I am so grateful for God’s encouragement, support, and love. Thank you so much for stopping by My Journal of Praise and liking posts. God Bless.

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  10. Planting Potatoes

    I can relate…..we never know how we will act when faced with the toughest trials God knows we will face…..but neither will we know just how much God loves us and makes us strong until we have to face that challenge will we?

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  11. Bill, great blog site. You are remarkable. God bless you. Thank you for reading mine. Keep in touch. My son has a web site with word press. Southern fried faith. Check it out.
    Janet OMG it’s ALS

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  12. What a great post! Thank you for reading my blog so that I would find yours. I can relate to being humbled, dependent on others for basic needs. Cancer stripped vanity and pride from me. I didn’t know the person who stared back at me in the mirror. She was emaciated, pale, dying, and I didn’t want to know her. But by God’s grace that person is gone. My image is not the same as before, but I am at peace with it. May God give you grace for each day and peace with your plight. Your story is a blessing to others, but living it is difficult. Thank you for sharing your story. Connie

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    • Thank you, Connie. I can definitely relate to not recognizing the person in the mirror – and in pictures! I am so glad you’re better, completely cancer free, I hope? God bless.

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      • Once you’ve had cancer it sits on your shoulder poised to jump back into your life. I refuse to live my life in fear, however, because then cancer would win. One day at a time. Only way to live this life. God will provide grace for today. May He bless you and give you peace today. Connie

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        • “I refuse to live my life in fear.” That’s right, Connie! Learn to fight that voice of fear by thanking God for your health every time you hear it speaking to you. Christians may not agree on where these voices of fear (over health, finances, relationships etc) come from; some believe they’re spiritual and others might say they’re just negative thoughts. But regardless of the source, the last thing fear and doubt wants is to be a motivation for us to thank and praise God – use doubt and fear to motivate you in this way and I promise you your doubts and fears will drastically diminish.

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  13. Powerful message and beautifully written. Thank you for your honesty and your transforming message.

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  14. elpida (el-PEE-tha) Ministries

    Thank you, it is a testimony and reminder we all need!

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  15. Bill, I love your heart and faith as you navigate these physical challenges. You remind me so much of my precious hubby in the last two years of his earthly life. You two have much to teach the rest of us and know that you are a blessing to many – just as he continues to be even though he’s now with the Lord. My prayers are with you and your family. There’s Power in Hope! Karen

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  16. Bill, thank you for stopping by my blog and liking my post so I could find you! I’ll return. How we all need to hear the hope-filled walk of others. Blessings.

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  17. Bill, thank you for a great post.

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  18. Reblogged this on I'm Listening to GOD and commented:
    I am touched by your humbleness. Not that you are trying to be humble but that it is manifested in you through your “weakness” and the sufficiency of GOD. You have stumbled upon a great spiritual truth. Guard it with all your heart. I wrote a post just today on my blog about joy in GOD and after reading your post I had to stop and ask myself if I would exhibit the same joy in your situation. I then realized that is not the point.
    The joy and the humility that you have in this situation has been given to you by GOD for this very situation. I don’t have the strength to react the way you have to such a disease because I don’t have it. I do believe that GOD could give it to me if I were to have such a disease. this sis because it is his grace that is sufficient, not our strength.

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    • Thank you for your kind and thought-provoking comments, Jack. You’re right, if, God forbid, something like this happened to you, I am convinced that God’s grace would be sufficient for you and anyone going through a trial. God bless you.

      Like

  19. I am touched by your humbleness. Not that you are trying to be humble but that it is manifested in you through your “weakness” and the sufficiency of GOD. You have stumbled upon a great spiritual truth. Guard it with all your heart. I wrote a post just today on my blog about joy in GOD and after reading your post I had to stop and ask myself if I would exhibit the same joy in your situation. I then realized that is not the point.
    The joy and the humility that you have in this situation has been given to you by GOD for this very situation. I don’t have the strength to react the way you have to such a disease because I don’t have it. I do believe that GOD could give it to me if I were to have such a disease. this sis because it is his grace that is sufficient, not our strength.

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  20. Greetings and blessing to you and Mary,
    Greater is He that is in you than he that is in the world. Please know I am standing in Faith with you for complete manifestation of healing in your body. It is NOT God’s will for you NOT to enjoy this life in complete Divine Health. But, as we know, this world is under the subjection of Sin and the Law of Recompense. Feed your spirit with Truth and practice it. I pray that The Father will lead you to the right Bible Teachers to help focus and Trust our Heavenly Father. He loves us so much. This is why Jesus came and lived 33 years communing with The Father and others who NOT among “the perfect.” We all have sinned and fallen short of the “Glory” of God but, because of Jesus, we are a redeemed, loved, and chose people.

    God bless you and Mary. I love you, Brother. Be blessed and Strong for, indeed you will do Marvelous exploits for God. Daniel 11:32 [Darby]
    32 And such as do wickedly against the covenant shall he pervert by flatteries; but the people that know their God shall be strong, and shall act. (BibleResources.org)

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  21. Your post reminds me again of some of the lessons I am learning about pride. I didn’t even think I was proud until recently, and that is the first lie our pride tells us. I am instructed by your humility through your own trials, and I pray to learn humility in mine.

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  22. Thanks for this post sir, it did a lot of things to me, I can’t even put them into words. sincerely, thank you. :’)

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  23. Wow that is so true!! I’m sure I have made statments like that before. So thank you for bringing them to light. It’s made me see the pride in my life.
    And I love your statment, “Hastily-made statements are carelessly uttered by healthy people and spoken out of pride.” I think that is one that will stick with me always. So thank you for sharing that powerful message!! God is using you my friend.

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  24. Bill, thanks for sharing your heart. Your ministry continues.

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  25. shelleywilliamsblog

    Thanks for the visit.

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  26. Reblogged this on A walk in the Word and commented:
    This is a powerful testimony from a believer in the Lord Jesus Christ. It is true that we do not know or realize the power, the strenth, the authority that we have in Christ Jesus. Every now and then we get a glimpse of it. This mostly happens when we are in greatest need of it. Imagine if any of us were to truly realize how much we need HIM to do all that He desires to do in us. I am convinced that he will at times take away our strength so that He can make himself more powerful in us.

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    • Thank you, Christian. I agree with you that God sometimes allows our strength to decrease so He can increase – like John the Baptist said, “I must decrease and He (Jesus) must increase.”
      Thank you for reblogging my post!

      Like

  27. Honestly, I cannot begin to understand living with ALS and all the complications that follow, but I can definitely relate to one thing you talked about: opening one’s mouth when pride sits well in his heart. About seven years ago, I was at Bible camp as a young teenage boy. Being social awkward without the onset of puberty, I had very few friends. Because of this, the two things I knew how to talk about were academic trivia I had acquired in my spare time and myself. By the time I had gotten to that Bible camp, I KNEW I was intelligent and LOVED showing it off but still I talk more about myself than anything. I had started a conversation with with a young man in his mid-twenties, just kind of rattling on when stopped me. He pointed out that almost every sentence I spoke began with “I”. This was a definite blow to my ego to be called out like that. Not long after that, I went into the woods and prayed a prayer that I had never done before. From my pride and wanting it never bruised like that again, I pray that God would give me humility; that would make me a better person, ironically something I could be proud of. Although I had prayed for it with much pride in my heart and no intention of letting it go, God did in fact humble me. A few weeks later as school was just starting back up, I ended up with a ruptured appendix that nearly killed me. Prior to that moment, I was always doing things by myself, for myself, when I wanted them done. After my surgery (which left with me with a 7-1/2 inch vertical incision on my belly), I was helpless. I depended on people to help me do even some of the most rudimentary things, like bathe, cut up my food, and use the restroom. Humility hit me fast and hard.

    Thank you very much for your post. It meant a lot to me. Like the scar that now rests on my belly, I am reminded now of what can be learned as we open our mouths. Bless you, and thank you for liking my post. I look forward to reading many more of yours.

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  28. For someone who can’t speak, you sure have a way with words! Thank you for sharing and for being such a wonderful inspiration. And thanks for visiting my site. I’m so glad you did because if you hadn’t, I might not have discovered yours. God bless you and Mary, too! 🙂

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  29. This is truly amazing. This is exactly what I needed to hear at exactly the right moment. Though I still don’t have an official diagnosis of ALS, it does seem more and more like likely. I, too, have been hearing a recording in my head of my own voice saying precisely what you said. On multiple occasions, even. Thank you for this very timely and personal message. God bless you. Know that He has used you in a mighty way today.

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  30. What a blessing and encouragement your blog is! If you had cashed in your chips – we, as readers, would have greatly missed out, along with your family. A relative, of mine, ended his life during terminal cancer. It brought such horrible feelings of anguish to all of us. Even now, over 20 years later, I am close to tears at the memory of it.

    Bless you and press on dear brother!

    PS – How is Mary doing with the new camera you bought her?

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    • Thank you, Wendy. That’s terrible about your relative ending his life! Maybe he was in unbearable pain – physically and emotionally. Fortunately, other than occasional muscle cramping and joint pain, I don’t experience severe pain like some cancers and other diseases – thankful for that much.
      Mary is learning how to use the camera – I send her links to your blog posts to see your pictures.
      Thanks again for your kind comments!

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  31. hmmmm. Be slow to speak. I need a reminder of this often. I might even try it. 😉
    Love you.

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  32. Wonderful post! Something similar happened to my grandfather with vitiligo. There was a woman at his church who had the disease, and he didn’t quite understand or see her in spite of her appearance. He now has the disease, which has completely turned his skin color from caramel to pale white. I am sure it was tough, but we are all humbled at some point in our lives, willingly or fighting.

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  33. Bill, I remember so clearly the time we spent with you and Mary & the girls before ALS. You were extremely independent, self-motivated and a “go-getter”… I think we would all have made a similar comment like you did when we were in our 30’s. As I have been friends with you over the years and watched you and your reaction to this illness, it is clear to me that nothing about you has changed except for your physical limitiations. You are still extremely independent, self-motivated and a “go-getter” … the only thing that has changed about you is that you even have more obstacles to overcome! Surely the Lord has worked in the lives of your family. The example of how you & Mary live through this is an example for many of us. If something like this were to happen to me or to Brent, I know that it is not only possible to survive, but it’s possible to have a meaningful, productive and rich life that gives glory to God through any circumstance. I would never have an excuse to think otherwise after knowing you! Debbie J.

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    • You wrote: “If something like this were to happen to me or to Brent, I know that it is not only possible to survive, but it’s possible to have a meaningful, productive and rich life that gives glory to God through any circumstance.”
      Thank you for the encouragement, Debbie; telling people that, with God’s help and the help of others, like you guys, we can make it through any trial we’ll face, is the reason I started this blog.

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  34. Bill, you are AMAZING!!!! I know it’s been a long, hard road for you, but I’m glad you didn’t “cash in your chips” when it would be soooo easy to give up. What an inspiration you are, as well as Mary and your girls.

    Words can’t express how much I love you and Mary and the girls. I’m soooo blessed to be called, “friend.” Thank you for your faithfulness and living out that faith for all to see, especially for my boys to see. To see you and their dad as living examples, I couldn’t ask for more for my boys and the years that are ahead of them as they face unforseen challenges in life.

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  35. My immediate reaction was to search my own statements to see if they too were a reflection of pride, self-sufficiency. My desire is to fulfill the Lord’s desires for me. This was a worthy visit. Lord bless you as you continue to serve Him no matter the circumstances.

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  36. So true! I do think we are more prevalent to saying these types of “I would never” or “I could not” type statements as younger people as well; it takes some life experience to learn never to say never or define what you could and could not tolerate. 1 of the most amazing gifts of God is how we are constantly evolving, learning, growing, and hopefully finding our way to Him more easily throughout our years of life

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  37. Thank you for the re-blog and for your kind words, Jon.

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  38. I should have done it long ago, Bill. It got lost in my file…. 🙂

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