10.24.11 | Sinking Into Darkness

It all began with twitching in my muscles. My wife insisted that I go see a doctor, but being a typical male, I ignored her. At the same time, I was having difficulty opening jars and cans when I was backpacking. I had just turned 50 years old, so I thought that this is what happens when you get old. Then one day, as I was writing out my sermon notes, it was as if my brain and my hand were not cooperating. So the next morning I was in church getting ready to preach. During the song right before I was scheduled to preach, I leaned over to a doctor who is a neurologist and told him about the twitching and the weakness. As I look back at that moment it’s really ridiculous – as if a doctor is going to diagnose me during the service right before I preach. He told me that I needed to go see him, like tomorrow.

So I went to see him. He spent about 15 minutes examining me and then asked me to come into his office. He told me there were several possibilities. First, my twitches could be benign fasciculations. He told me that everyone’s muscles twitch and that maybe mine twitch more than the average (I was hoping that I was just a big twitcher rather than a little twitcher). Second, it’s possible that I might have ALS. Once he mentioned ALS, my heart immediately sank. A few weeks later it was confirmed that I had ALS.

There is no way to describe the hopeless feeling of knowing that you only have a few years to live, and most of that time will be in the disabled condition. How does it feel?

It feels like you are sinking into the darkness.
It feels like you have left the warmth and sunshine and descended into a tomb.
It feels like you are in slow motion while the rest of the world speeds past.
It feels like you have a ringside seat to your own demise.
It feels overwhelming!

I have been a pastor all my life and have helped many people deal with difficult circumstances. But there is a huge difference between helping someone and dealing with it yourself. I thought that if I knew I was dying, I would really read the Bible. I found the opposite to be true. I can hardly pick up the Bible and read it at all. I thought that if I knew I was dying, I would really pray. I found the opposite to be true. I can hardly pray at all. I thought that if I knew I was dying, I would begin to think a lot about heaven. I found the opposite to be true. I found myself more and more attached to the people around me. In the midst of my struggles, I began writing a book entitled “Prayers and Promises When Facing a Life-Threatening Illness.” During my youngest son’s second tour of Iraq, compliments of the Army, I sent him a copy of the book. The book contains a morning prayer and an evening promise. Throughout the book I tell stories of my own journey. My son told me that the stories would make wonderful short films.

Now I have really never been into films. I seldom watch a film and I sure never anticipated being in a film. When my son returned, we began working on the idea of a series of short, 10-minute films. That idea is now a reality, seven short films in a series called Ed’s Story. During the first year we worked on the films, we tried to identify the ideas that would give a sense of hope to people who have had the air knocked out of them. Early in my journey with this disease, I discovered that I did not want to read a lengthy book on suffering. I could only take information in short, concise and focused segments. These short films are designed to do just that. It only takes 10 minutes to watch one.

It is difficult for me to watch the films. When I watch a film I relive the situation over and over and over again. I’ve discovered that my emotions are just beneath the surface. When I watch the films, those emotions come rushing to the surface. So why did I do the films if it is difficult to watch them? I wanted to do something to give a sense of hope to people no matter what their circumstances. We are all human beings and part of our challenge is to face struggles and respond to them in a healthy way. I’m not sure I have always responded to my struggles in a healthy way, but at least I’m trying.

 

This post first appeared on The Huffington Post on 10/5/2011

  1. Joe says:

    Amazing story. Thank you Ed.

  2. Steve says:

    Thank you Ed for spreading some hope!

  3. Nathalie says:

    Thanks for sharing the hope within you. It’s not about our plans.
    May God bring you comfort and joy.

  4. Lee says:

    I love your honesty so much. My son lost his dad (my x husband) to ALS just this past January. Very similar symptoms and emotions, I look forward to visiting your blog and receiving hope through your amazing story.

  5. nancy says:

    Thank you Ed for sharing how you honestly feel with us. Many of us have similar feelings and you have validated us and helped us feel less lonely and isolated!

  6. JoLynn says:

    Please keep sharing and doing these films. You have ministered to me more than you could ever imagine. Please know that GOD is using you in a mighty and extremely powerful way. Thank you.

  7. Iris says:

    I can only imagine the pain that you are going through. I just prayed for you. I hope that God Blesses you, and please, sir, stay encouraged! He has already given you more time than the doctors could imagine. May God Bless and Comfort you. Also, thank you for being an inspiration to us all!

  8. Trish says:

    Good Mornin’, Ed! Just stumbled on your site, not sure how, but enjoyed (?) it. Enjoy is such a weird word in these circumstances. Thanks for being transparent and honest with a hurting world. I look forward to more of your work and will pray for you.
    One question: None of us know how close we are to leaving this world, but knowing you could be close(r) to ‘home’ than me, how does that feel? We are, after all, pilgrims and sojourners.
    God bless you! Trish, Georgia

  9. kathi says:

    I first heard of your story a couple of weeks ago when it aired on Kathie Lee and Hoda. “Coincidentally, a friend of mine had just posted a link to your website on Facebook earlier that morning but I hadn’t looked at it yet. (Interestingly enough, I later found out he and his brother had the honor of editing some of the videos). Anyway, I was so encouraged by your story and shared it on my FB page. My brother has just been diagnosed with Parkinson’s, so I’ve been thinking alot of degenerative diseases lately. Today, I just received an email from a dear young friend whose mother has just been diagnosed with ALS. I am sending the link to your website to her, as I am certain it will speak to her as she begins her own personal journey “into the darkness.” I pray that you will feel the unspeakable sort of joy that comes from knowing you have been used powerfully to share the love of God through your own story. I’m sorry it comes with such a large price tag. Courage + Beauty, Kathi, North Carolina

  10. Jim says:

    Wake up folks and smell the coffee, then you may realize the falacy of your ways. Please tell me you don’t believe in a God that would punish Ed with such a horrific d8isease after Ed has given his life to God. Why in the world would you worship an entity that would be so cruel to so many people? Several of you said you prayed for Ed, therefore I assume you believe in God and prayer. Let’s test the strength of your faith in God and prayer. Take a hatchet and cut off one of your hands and then pray to God that He will let your hand grow back. I bet you won’t do it so what does that say about your strength of belief???

    • Dawn says:

      JIM, God grants all beings “free will” to do what they may. If YOU choose to cut off your hand, go ahead God also gave us enough sense not to be so stupid.

      • Beth says:

        Dawn,

        Are you any better, or you acting in any more of a rational or having any better attitude by pouring contempt like that?

    • mary says:

      Thou shall not tempt the Lord thy God – This is quoted literally from Deuteronomy 6:16. The meaning is, thou shalt not try him; or, thou shalt not, by throwing thyself into voluntary and uncommanded dangers, appeal to God for protection, or trifle with the promises made to those who are thrown into danger by his providence. It is true, indeed, that God aids those of his people who are placed by him in trial or danger; but it is not true that the promise was meant to extend to those who wantonly provoke him and trifle with the promised help. Thus, Satan, artfully using and perverting Scripture, was met and repelled by Scripture rightly applied

    • mary says:

      Jim, I appreciate your boldness, but in the end…upon your dying breath, I pray you call on the name of Jesus. For by no other name can one be saved.

      Acts 4:10-12

      New King James Version (NKJV)

      10 let it be known to you all, and to all the people of Israel, that by the name of Jesus Christ of Nazareth, whom you crucified, whom God raised from the dead, by Him this man stands here before you whole. 11 This is the ‘stone which was rejected by you builders, which has become the chief cornerstone.’[a] 12 Nor is there salvation in any other, for there is no other name under heaven given among men by which we must be saved.”

    • Beth says:

      Jim,
      Jim, Ed does not say nor does he believe that God is punishing him as you state. God does not punish us by giving us things like a disease. God is a good God, it is the world we live in that is fallen and depraved. We are all sinners saved by grace through faith in a God that loves us enough that He sent His son to die in our place that we might have restored relationship with Him. We are all sinners, none of us or more or less deserving of anything God gives us or does for us. We aren’t to put God to test as yo suggest. For a person to hurt himself in the manner inwhich is wrong and not a test of strength or belief. God created us to being with for relationship with Him, it is man’s fallness that separates us from God; not that God does anything like you claim. He desires to have relationship with you as much, we are all loved by God in a manner that far supasses our own understanding, farbeyond that which we are able to fathom. God offers you mercy and forgivenss, will you accept his gift and believe? He wants you toknow Him, Ed has been called to suffer not punished by God; He is being used mightily by God and often that does include suffering. Ed has paradise waiting for him after he passes through this life, the same available to you if you will accept what God has done for you too.

  11. Kathy Bond says:

    Last January an unruptured aneurysm was found in my head on my anterior communicative artery in my brain. I found out that day that I had a 50/50 chance of dieing at any moment. That was the day my life changed and I began living knowing that I really was going to die. Everyone knows they will die but it became really real that day. God has enabled the doctors to fix my aneurysm but really we are all going to die someday. My aneurysm wasn’t a punishment it was a gift from God. I now realize that this life is a gift and I want to live it while I can. I want to drink in the beauty and love of others and the majesty of the earth as if I may never see it again because I may not. My life, whether in suffering or in peace, is temporary and in heaven all will be wonderful. If my life here is suffering than I will take it as long as I get to and cherish that suffering as a gift, because I only get to do this once.

  12. Dawn says:

    Hi Ed, I have a chronic illness & I too have an ever present, heightened awareness of my mortality. Not one day goes by that I don’t think, it could be my last day. But, I also consider others in my life, today could be their last day too. the point I am trying to make is, every one of us must make “people” the first priority in life. Like,to anyone who reads this, step out of your comfort zone, SHOW someone you love, that you love them (if you usually don’t exprees your feelings). TELL them you love them. Just call someone youve been meaning to call, but just haven’t had the time. Give that little kid a smile, I bet they will give you a smile too. HELP that person in the grocery store, that can’t reach the higher shelf, or that may have trouble walking. Just show that you CARE. These gestures are simple things, but for some people, not so simple or impossible. (ie: trip to the grocery store) We are really, all the same ‘underneath’ & we all share one basic need, and that need is love. Sprinkle some of it every where you go and with every one you know, and even those you don’t know.

  13. Dawn says:

    My comment above is directed to everyone who reads this blog, although it starts “hi ed” – I just wanted to clarify that.(I understand that Ed has ALS).
    Thank You Ed for sharing your journey & YOU give me hope…

  14. Buz says:

    Thanks Ed for your blog and films. Your candid and honest reflections about your experiences with ALS is encouraging to those of us who are facing similar life threatening circumstances. I have been struggling with cancer for almost 5 years and was diagnosed with stage 4, metastatic melanoma 14 months ago. Initially, I was confident of beating this killer and had a somewhat cavalier attitude of victory. However, after my most recent diagnosis, my world fell apart, and I found it difficult to cope with the emotions and depression. Faith and hope is all we really have left and I prayed that God would allow me to somehow use my circumstance in a positive way to express that faith and hope to others as you have. God understand suffering and death. He gave His only son to die for our sins, when He was only 33years. He could have died quickly and easier, but chose to suffer greatly by crucifixion. Praise God!

  15. Phillip Beck says:

    refreshing to watch a true follower of Christ, follow Him no matter what.

  16. Sherman says:

    Ed…thanks.

  17. Palang says:

    God’s grace and mercy would always be there for you. Be strong and thank you for the encouragement.

  18. Rebecca H. says:

    Ed you are wonderful and amazing. I’m a neuro nurse and your stories inspire me and help me to be a better nurse. Thanks so much for allowing us to share your life with you and all of it’s truthfulness. I have your site on my Facebook page to share with others.
    Keep up the great work!! May God continue to bless you and keep you here for as long as possible so we here on earth can enjoy your gifts for a while longer.

  19. Vickie says:

    I hope Ed reads these. First of all, when we talk dying, death and this is the end, we play right into satan’s hands. God is the author of life and Jesus was beaten mercilessly taking stripes on His back for our wholeness in mind and body. Jesus Christ, the same yesterday, today and forever. He changes not. He has already saved everyone, just as He has already healed everyone; it is a matter of accepting the truth of the Bible, standing on it, confessing the healing scriptures day and night and playing tapes while you sleep-once the truth goes from your head to your heart; you will be healed. I recommend Ed and anyone else going thru illness, depression, cancer, etc. to check out website, Andrew Wommack-click on healing testimonials, listen free to his teachings. The past 2wks have been excellent, a re-uniting many that were healed years ago, Andrew interviewing them and asking details about how they arrived at their healing. Also you can go to Colorado or where he speaks and he or his people will lay hands on anyone to add the healing touch from God. I believe they now have once a week at their Charis Bible College which is a healing school for those who are ill. Kenneth Hagin Ministries also has a healing school where you go there and stay as many days as you need. They will talk to you, teach how to receive healing, booster your faith and also lay hands on and have healing techs pray for you. Corey at John G. Lake Ministries travels and teachings people on divine healing. You can also call him and he will pray for you or you can see where he is going to be and go there. Healing is for us today as believers. We are to BELIEVE all of the Bible, not just part of it. People don’t need our sympathy, they need God’s healing touch. The facts are one thing; but the truth is another thing-and “by His stripes we are healed”. 1Peter 2:24 Any believer with true faith can lay hands on the sick, but you don’t ask God to heal them. You command the sickness to go. You curse it in the Name of Jesus. We don’t have to ask or beg or plead. We just have to believe!!

  20. Vickie says:

    I forgot, Creflo Dollar is also an excellent pastor/teacher and in the last week (you can see where he broadcasts or go to his site and view the last few teachings) he has shown the same type of healing testimonials from his church members, as well as his own story of how he was healed from the doctor diagnosing him with prostrate cancer around the age of 30. His teachings are phenomenal, the ones about body,soul and spirit and who we are, our authority in Christl; they will open your eyes to the dominion and authority God has given us thru Jesus, our amazing Lord.

  21. Cathy says:

    Thank you, Ed. Your story has brought me to tears. Tears for you
    and tears for me. My family has had and is still having many struggles and conflict. My two sons who are now in their twenties have survived a divorce as well as my oldest son’s Leukemia which is now “cured”. I’m 55 and healthy. I realize that I need to persuade what’s left of my family to take a vacation together to laugh, play and have fun together. I pray that they will agree and hopefully we’ll have some happy memories as well as redefine our relationships with each other.

    Cathy (from North Carolina)

  22. Francine Busch says:

    Dear Ed,
    Reading your blog today…on the birthday of my husband Ron, who died 7 years ago, made me once again be grateful for the prayers of others and the promises of my dear Savior. Your life continues to be a testimony of His amazing grace and mercy over you. You encourage me, brother.

  23. Debbie says:

    Dear Ed,
    I am writing to you at 3:33 am. because I am unable to sleep because of difficulties in my own life including my own father having ALS. I thank you for being brave enough to share your life with us and the hardship you are facing. It helps me understand what my father is going though since he seems to have a hard time talking about it. I thank the readers for their comforting words also because it helps you see in this world you are not alone. Life is not how you come in or how you go out, it is the story, the journey in between and even in all this you are taking people to heaven with you. That is Gods will for our life, helping others!

  24. Cindy says:

    I could not agree more Ed, helping people is one thing but going through difficult times yourself is a whole different experience. I won’t share the details but I have been going through one of the most trying, heartbreaking years of my life. My supportive Godly friends would say ” Cindy there is a reason for this and you will be able to help others etc.”. I’m getting to the place where I can get my head around that truth but to get to where I am I too sunk into darkness, left the sunshine and felt as if the world was on fast forward as I watched it go by. My journey is not done, God has shown up everyday and there is hope for situation. Relationships are important and forgiveness is trying. Thank you for sharing and for the reminder that God has me covered just like the birds.

  25. Joe S says:

    Thank- you Ed, for seeking to encourage your fellow brothers and sisters in Christ. The Lord knows us each so intimately and so perfectly; our weaknesses, fears, sins, and emotions.
    Tears and questions are often our most honest prayers.

    or repay us according to our iniquities.
    11 For as high as the heavens are above the earth,
    so great is his love for those who fear him;
    12 as far as the east is from the west,
    so far has he removed our transgressions from us.

    13 As a father has compassion on his children,
    so the LORD has compassion on those who fear him;
    14 for he knows how we are formed,
    he remembers that we are dust.

  26. Beth says:

    Thank- you Ed, your movie clips are beautiful because they express your honest thoughts and emotions. I especially liked the first one showing the angels on the table from the view of one lying in a bed looking out to the hallway. This brought back memories of my Dad dying of cancer! Loving him so much and knowing we had only precious time left together was an awakening. To this day I remember Gods word says we should number our days. I thank God He let me come across your movies! The short to the point messages will be in mind, especially it aint over!!!!

  27. Dylan says:

    Thanks for the inspiration Ed, it means a lot to so many of us. Take care everyone.

  28. Teresa Pederson says:

    Dear Ed, Eleven (11) years later Lou and I have a great relationship. I was very inspired by your video. My husband lost his beautiful life to this disease 2-15-01. Not many people will bring their true feelings to the surface in the face of this disease. Thank YOU! Don’t fall asleep in your garden. Jesus will show you the way. Take care..my thoughts and prayers are with you..teresa

  29. David says:

    I saw the first installment of this series and it made me smile, I was diagnosed with ALS in february of 09 and have progressed a little faster than you but not much more , I have a Mic-key button for medication and some liquid food, I have a bi-pap machine and a fancy power wheelchair even though I can still drive. I would like to see the rest of your series but at this time I am unable to afford to do so, I am happy that you have someone to help you , I am presently by myself but I take care of my mother who lives with me and she has emphysema and Alzheimer’s , God bless you and keep up the good work, David

  30. Adam says:

    Dear Ed, thank you for sharing your story. We ask God (Allah) to help us all and guide us to salvation. In the Holy Quran-Opening chapter Allah says; In the name of Allah, the Beneficent, the Merciful (1) Praise be to Allah, Lord of the Worlds, (2) The Beneficent, the Merciful. (3) Owner of the Day of Judgment, (4) Thee (alone) we worship; Thee (alone) we ask for help. (5) Show us the straight path, (6) The path of those whom Thou hast favoured. Not (the path) of those who earn Thine anger nor of those who go astray(7).

  31. Michael King says:

    I am the pastor of a small Church in South Carolina. The Church had a split two years before I was called and lost many of its faithful members. It has never recovered 6 years later. I have had the priviledge of leading to the Lord and Baptizing 34 people in the last 4 years, but more have died and moved to other places seeking jobs and some have simply drifted away. Facing the small number of people each Sunday Morning is becoming harder and harder. I question my call, my ability, my leadership. Ed … Your story has deeply moved me for several reasons. A woman who attends our services has a son in the advanced stages of ALS. He no longer can speak. I led to the Lord his father a few months back while he was on his death bed. Your story has given me a glimpse of hope and purpose. The flesh desires the many … the Spirit often leads us to “The One”. You remind me of Philip in Acts 8. So gifted, leading perhaps many to the Lord, performing miracles … then having the Apostles come and finish the work he started … laying on their hands so the Spirit would be given. Then having Peter expose one of your “converts” as a phoney. (Simon the Sorcerer) … then having the Spirit say …. Go … to the Desert … (There is One, you must bear Witness to … an Ethiopian Eunuch) (my paraphrase) … Thank you for your story, your faith,… for Living Like Jesus! For Taking care of the One!

  32. Ken Blue says:

    Ed, Your story was brought to my attention by my ALS worker. I was diagnosed with ALS seven years ago. I also pastored a Baptist church in Lynnwood, WA. for 39 years. I am at the state where it is difficult for me to speak. I have been confined to a wheelchair for about three years. I would like to hear from you, if possible. I also have a blog page at kenblueministries.com. I guess what I am trying to say, I understand and know what you are experiencing. God bless you. Ken Blue

  33. Chuck Wood says:

    Ed, many words are not needed here, thanks for pointing people to Jesus (1 Corinthians 2.2).

  34. jenn says:

    Thank you for your videos. Your hope, faith and bravery is incredibly inspiring

  35. Randy says:

    Ed,

    I am so glad you and your son decided to do this project. I am a recovering drug addict and a Christian, and coming off a recent relapse I was seeking God. I soon came across your site from a notice on CNN and began watching. I was able to relate to the sense of fearfully giving your future to God, because it was my only alternative to dying.

    I watched very closely as you buttoned your shirt, put on shoes, drove a car – the basics. I thought to myself how impressed I was that even though you are going through this, you still put one foot in front of the other, and continue doing what you need to do, no matter what. Perserverence. I then thought, if I want to one day be an old man, I had better start acting like I want that. That is a thought that has repeated itself in my heart many times a day, and I imagine forevermore.

    Thank you for changing my life.

    Love,
    Randy

  36. JKR3 says:

    Christ puts things into our lives to help purify us, remove the things not needed to reach him but to open our eyes and hearts. As a MSer of 20 years the journey has bin full of many things, from guns to giving up and hating God. But in the end when we give up and give our lives to Christ we will finally live and finally know that this place is just a stoping point and not an end but just beginning. As I watched Ed’s story I saw so many of my fiends in his words and yes even some of me. Thanks for his willingness to share how his weakness reflects the awesome power of Christ and his ever lasting Love and Hope.

  37. Micheal Mandella says:

    Thank you Ed for having such courage for the rest of us frail humans. My heart is with you. My thoughts are with you. My prayers are for you and my faith will be stronger because of you!

  38. EUNICE says:

    Hi Ed,
    I read a little about your story in a flyer passed out at church. I have lupus which is causing havoc with my muscles, arthritis, and breathing. I wanted to pass on to you an encounter I had with an older priest shortly before he died.
    He was having trouble with his legs and spend a bit of time in the nursing home where I worked. One day he was in the sitting room and I dropped by to chat a bit. I asked him what his plans were- to stay at the nursing home or to return home.
    He had a delightful Irish drawl and he answered, “It’s in His hands now.”
    I replied, “I know one good thing about physical problems, they make me long for heaven. I know I’m much more heavenly minded than I would have been otherwise.”

    His response was: “That all part of His plan.”

    I often think that we fight so hard against exactly what God is trying to do for us- to get us to focus on Him, to develop an expectancy for heaven, and to joyfully anticipate our homecoming.

    Your story touched me and I wanted you to know that you’ve been on my heart and in my prayer.

    God bless!
    Eunice

  39. EUNICE Boeringa says:

    Hi Ed,
    I was touchecd by your story which was passed around at church. I have lupus, so know a bit about seeing your world getting smaller and smaller.
    I have a short story that might encourage you. I worked at a nursing home and ran into my favorite priest. He was having trouble with his legs. I asked him if he would be staying with us or hoping to return hom. He said in his slow Irish drawl, “That’s in His hands.”
    Then I mentioned that good thing about watching my body fall apart was that it stirred within me a longing for heaven. His response was: “That’s all part of His plan.”
    I think of that often as the leg doesn’t work well or the lungs become congested. Instead of complaining, I need to look up to see how close my Father is. I need to change my focus and become more heavenly minded.

    I wanted you to know that your story encouraged me and I hope this one encourages you. You have been on my heart and in my prayers.

    Blessings,
    Eunice

  40. kate says:

    Mr. Dobson- thankyou. thankyou. thankyou. May the God of heaven and earth bring you peace in your suffering, joy in your uncertainty, comfort during your many trials, and when you don’t know what else do you may you follow your own advice given years ago and cry out “yahweh, yahweh, son of David have mercy on me”. Peace be with you.

    • Burhan says:

      Can I just say that I can’t wait to chat with you at Relevant?! Your words are uplifting, enroucaging, inspiring yet convicting all at the same time! Thank you for letting Him speak through you!

  41. Habib says:

    Why is anyone tlnkiag about pathetic failure of religous beliefs? You might as well wallow in the dirt like some ignorant savages. The time for being controlled slaves is 100 years ago. So not fall victim to magic and bullshit.No-religion is the one defining thing that the red communists got correct!

  42. Sanjana says:

    I want to finish my thugoht here. If God treated us fairly Jesus would have never died on the cross. and we would have never been offered salvation. I praise God that He loves me, He never fails me and He goes to plan B and on. Look ho w He blessed Israel, they sinned and went away from God countless times, but He was faithful and loved them any way. Romans 5:8 But God commended His love toward us, in that while we were sinners Christ died for us. Praise be to God!

  43. Monkey says:

    The geinus store called, they’re running out of you.