Nor pain anymore

September 1, 2014 | My Jottings

I remember when my parents divorced when I was fourteen years old, and the way it felt like the earth was splitting open and swallowing our family. I thought it was the most terrible thing someone could experience. Such pain.

Then I recall thinking that the greatest anguish I’d ever felt was when my husband Glenn decided he wanted Karla, the bespectacled and sailor-mouthed wife of another man, more than he wanted me and our two little baby girls. Now there was some pain.

Then came the years of ineptly raising my three daughters, and all the ways I blew it as a mother, and the agony of seeing their pain as they made their way in life with the residue of my fierce love and glaring mistakes in their hearts. There’s no pain like the pain of watching your children’s pain, that I can tell you. But many of you probably already know what that pain feels like, don’t you?

I welcome you here, you dear, brave friends.  photo

Then there came a day when I thought I had fallen into the very bowels of hell, the pain was so unbearable. It was the day one of my sweet, little grandchildren went missing, and search parties and police were dispatched and prayer chains were activated, and she wasn’t found for hours. The cold dark was falling and she was gone, and I will never forget the horror that swallowed me, the prayers I screamed as I thrashed and rolled around on my bedroom floor almost out of my mind with fear and pain. And I will never forget how it felt to get the call that she had been found and was safe and fine. The words relief and joy and thankfulness don’t even touch what the lifting of that terror felt like. But that pain shook me and changed me forever. I will write more in detail about that another day.

Tonight there’s a deep torturous pain in my heart, my mind, my soul, my body. This pain makes most of the other pains I thought were so great seem like blips on the screen of life. I just got off the phone with my dear husband Michael and am so paralyzed by the grief and uncertainty I feel I don’t know what to do. So sometimes when I don’t know what to do, I write.

Lewy Body Dementia is one of the devil’s diseases. I can imagine that satan enjoys all disease, but I think there might just be a few illnesses that particularly delight him and I think LBD is one of them. I think ALS is another. Lewy Body Dementia causes episodes of intense agitation, confusion and delusion. Michael can be relatively calm for a few hours, and then change in just a few minutes into someone I don’t recognize. This afflicted man I don’t know paces, bangs on doors and walls, calls my name loudly and doesn’t understand or believe when the nursing staff tells him I’m not there, because his diseased brain is hearing my voice call to him so clearly, over and over. He thinks he’s being lied to and imprisoned. The staff he normally smiles at and trusts becomes the enemy during one of his episodes, and he shouts and rails against them and recoils from them when they try to calm and help him.

I tried to comfort him on the phone for over a half an hour. I talked to him of our thirty-three years together, of some of our best memories, how thankful I am that he and I fell in love and he brought me to the beautiful state of Minnesota. I talked about how our Jesus is powerful and present, how His name is the name above all names, and how He is right there with Michael. I said how this time of suffering won’t be too long, and before we know it we’ll all be with the Lord in Heaven, and we’ll finally be the real us, and there will be no Parkinson’s or Lewy Body Dementia or selfishness or pain. I asked him to say this simple prayer with me: “Jesus help me…Jesus please help me” and he repeated after me in desperation and rapid, breathless, almost unintelligible speech.

I told him many times how much I love him. I just kept saying, “I love you Michael” while trying not to let him hear me sob. At one point I could make out his response to me: “That’s what you keep telling me,” and in that voice I’ve always loved, I heard derision and unbelief.

And this, my friends, is pain. It is a hellish torture I don’t know how to endure.

And my blog is no fun to read. I know that. I’m sorry. I’m so blah blah blah Lewy Body Dementia blah blah blah Bible verse blah blah life is so hard blah blah blah times one thousand.

I wish I could go back to sharing recipes and writing about freeing muskrats from fences, about how Audrey loves Grandma’s bottom and the good books I’ve read with Mr. McBoy, about my beautiful daughters and my bad little dogs, about my dear friends and the love story God has given Michael and me.

They say everyone has a story to tell. I’ve been telling bits of our story here on my little blog for a few years now.

This part of our story is painful. I don’t know any other way to put it. Do we have blessings and provision and books and vision and food and air and sleep and friends and family and the hope of Heaven? Yes, oh yes. Thank You Lord, I say again and again. So many others suffer so much more.

But I’m going to tell the truth. I also whisper, Lord please. Please. Please have mercy. My husband is one of the most merciful people I’ve ever known. Lord, please have mercy on him tonight. And tomorrow. And forever.

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”  

Revelation 21:4

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  1. Diane says:


    I have nothing of my own that can reach the pain you are describing. You have so often identified the grace of God through your writings, and in our blessed conversations together. I wish I had something worthy to offer. Though my pain can’t compare, I have found comfort in this song–and in this singer.

    May God’s Grace reach where loving friends fall short.


  2. Kay in Cornwall says:

    Oh Julie, I wish I could give you a great big hug. Your pain touches my heart and I don’t know how to help you. Don’t worry about the recent posts on your blog- I just know I speak for all your friends here when I say that we feel privileged that you are able to open your heart up to us.
    Julie, you have been a great support to Alan & me while he’s been struggling with his health. Last week Alan was diagnosed with prostate cancer. He can’t have a biopsy because his haemophilia means that he would just bleed to death. So he will have numerous blood tests and scans and if things get worse he will have radiotherapy.
    We will continue to pray for both of you. Our hearts reach out to you across the sea, aching with love.

  3. Roberta Desalle says:

    Julie, count me as one of those who does not come to your blog for fun, but for truth about what it is experience what all of life is about—and you offer it.
    I do not doubt at all that Michael knows how much you love him. At the same time, he hopes you could find some way to take his terrible suffering a away—which he also knows you cannot. At those moments, I imagine he feels as if you are a life raft, and he is clinging to you desperately. And, You Are There, sharing the suffering to the extent it is at all possible, listening to his cries. It would seem you both know there is nothing more you are able to do for him, except what you are doing so courageously, lovingly and faithfully. God knows. He knows you both, in love.

  4. Helen in Switzerland says:

    Dear Julie,
    I just sat and cried reading this. Why does life have to be so cruel to good people? I wish there was something, anything, I could do to help. You are so brave and I can totally understand that this is tearing you apart. It is so unfair. You and Michael are at the very top of my prayer list….
    Thinking of you my friend
    Helen xx

  5. Steve says:

    Dear Julie –

    I sobbed over and over again as I read this posting. I can’t imagine the pain, sorrow and anguish you must constantly feel about this horrible disease that has taken over Michael’s life. You are an incredible loving and caring wife and I know that the Parkinson’s and Dementia not doubt have taken over your life as well. I too believe as you do that Jesus’ return is rapidly approaching. And if you and Michael can just hold on, just as you have lovingly done for 30 + years – Jesus will sweep you and Michael up into heaven. I know that this is ripping you apart and makes you feel helpless.

    I too feel helpless because I want to reach out to you with love, hugs and assurance that Michael will get better and that all of this misery will end. Michael is a very lucky man to have such an fantastic and remarkable wife like you. Also, you were never inept when raising your 3 wonderful daughters. They have the best mother on the planet and are a testament to the great job you did as a mother.

    Thinking about and praying for you both. Blessings, I love you. Steve OXOXOXO

  6. Janet Skoglund says:

    Dearest Julie,
    My heart broke when I read your blog.I agree with Kay that we feel privileged that you are able to open your heart up to us. It is painful to hear someone that you love experiencing, fear, terror and confusion. Michael looks to you because you are his life and love and you always turn him to Jesus. Would you privately send me your mailing address. I have some thing that my husband and I would like for you and Michael to have. It is a DVD. The sound of beautiful hymns set to beautiful scenery of the National Parks. On it is so much that you and Micheal have enjoyed by the beauty of God creation. It will take you both for a peaceful walk as you are together, and I pray that it will bring a peace that is refreshing and refilling for you both. Blessings, Janet

  7. ganeyda says:

    I would a thousand times over rather read the truth than sweet nothings. Life can be cruel but it builds spiritual muscle because we are designed in Christ to be overcomers. Overcoming is very hard work. I read the truth, I know what to pray: for mercy & grace & peace; for healing & strength & the Christ joy. We are told to bear one anothers burdens & listening to you is the very least any of us can do. {{{hugs}}}

  8. Carey says:

    Julie, I hardly know how to respond to this post. The emotional pain you are being asked to endure seems unfair and unkind but it can’t be either…as we know that He is both fair and kind.

    I’m no singer, but if I could, I would sing this song to you:

    “He giveth more grace when the burdens grow greater,
    He sendeth more strength when the labors increase,
    To added affliction He addeth His mercy,
    To multiplied trials, His multiplied peace.

    His love has no limit, His grace has no measure,
    His power no boundary known unto men,
    For out of His infinite riches in Jesus,
    He giveth and giveth and giveth again.

    When we have exhausted our store of endurance,
    When our strength has failed ere the day is half-done,
    When we reach the end of our hoarded resources,
    Our Father’s full giving is only begun.”

    Julie, I am praying for strength and endurance and multiplied grace & peace today…and everyday.

  9. Judy says:

    Dear Julie,
    You always humble me with your honesty, that there are things we wish we did not have to endure, that the strongest of us can feel overwhelmed. I pray tonight you and Michael have a peaceful, restful sleep and that tomorrow God will provide the strength you need for the day and that He will give you a special gift to let you know how much He loves you both.

  10. Dorothy Sooter says:

    Dear Julie,
    Please Dear lord reach down and give Julie the strength to weather this storm. Julie you have given so much to so many friends and family through the years. This reminds me of what Job went through. There is a light at the end of the tunnel. Knowing Michael was such a blessing to me. His kindness was real and you know how The Lord loves a giving heart. Please Lord watch over Michael and give him peace. Please Lord take away the disease that has taken over Michael’s mind. Give him peace. Thank you Lord for answering all of the above prayers for this family.

  11. Just Julie says:

    To each one of you who shared your love with Michael and me here today….thank you. I am feeling very grateful today. God bless you, dear friends… xoxo

  12. tonia says:

    Oh Julie. There really are no words sufficient for responding to this. I just want you to know I read it all and my heart is aching with yours. I am praying for you, for Michael, tonight. May God hold you so tightly and may His calm, clear Presence be with your love tonight too. Thank you for being honest. You must know what a gift it is to others. xo

  13. Just Julie says:

    Thank you for your loving words, dear friends. They mean a lot to me… xoxo

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