Grief Is a Wolf that Demands Attention

Grief Is a Wolf that Demands Attention

As I approached the one-year anniversary of my husband, Todd’s, ALS diagnosis, I wrote in my journal: “I want to be happy, healed, and whole again. But the grief that I am experiencing is not something one can easily get over.”

I read books such as “Getting to the Other Side of Grief,” by Susan J. Zonnebelt-Smeenge and Robert C. De Vries, hoping to conquer it. I have days that I don’t dwell too much on losing the love of my life and the father of my children, but the grief never entirely goes away.

If the disease progression would stop, we could find some semblance of a new normal. We would make plans. Instead, each step of decline opens new wounds of shattered dreams, activities we can no longer enjoy, increasingly less intimacy, and loss of faith as I knew it. So many things must be let go, reshaped, or reconstructed.

And it will be even harder when Todd is ravaged by the ALS monster in the final stage of the disease.

Perhaps the grief will go away sometime in the future, long after it’s over, but I don’t think the widowed, single-parenting life will be better than our current life in limbo.

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I’m living with continual loss and grief.

Fellow griever and author Shelby Forsythia describes grief as a wolf caged in her basement. The idea of grief as a living being resonates with me.

With the diagnosis, the grief wolf moved in uninvited, and he demands attention. If he doesn’t get it, he gets loud and angry, so it’s best that I respond when I first hear him.

Initially, the wolf wanted me with him all the time, but now he can be left for longer periods. But he gets more agitated on some days than others. The most innocent things make him growl, like when a sweet, elderly couple walk hand in hand. My tears flow, and the wolf lunges for my face. I fear his bite, but he only licks away my tears. Perhaps he’s not my adversary. I do feel some comfort when he is near.

This past week, I observed fasciculations across Todd’s stomach. In the past, it seemed crazy twitching preceded rapid decline in strength in various muscle groups. Todd had fasciculations in his forearms until he lost all of his upper limb strength. His calves and thigh muscles rippled under his skin until he lost his ability to walk. And now I fear his stomach fasciculations are a sign that he’ll soon lose his ability to breathe.

Somehow, I keep hoping the ALS will stall out or that it will slow long enough for a cure to be found. Instead, I’m reminded again that this disease is relentless.

The wolf has woken and is creating a ruckus in my basement. I set Todd up on his computer, and I leave for the gym. In the driveway, I’m surprised by my guttural cries. The wolf howls with me. I drive down our country road, and my cries turn into a scream. I rage against the pain in our lives, this horrific disease, and the brokenness in our world.

I’m at least thankful there’s no one near to see this crazy lady rant. I laugh, and the wolf yaps. My anger gives way to quiet sadness, and the wolf is sated. He lies down and naps.

I turn on the radio and listen to music. At the gym, I work out and feel happy after endorphins flood my brain.

Back at home, I find joy that evening in making wreaths for an upcoming holiday craft fair. My wreath press is set up in Todd’s office, and we watch “Last Man Standing.” Todd’s dog, Comet, lies at the foot of his wheelchair.

My wolf is no longer relegated to my basement. As long as Todd has ALS, I will allow him to lie at my feet.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.
Kristin Neva is an author, blogger, mother of two, and caregiver for her husband, Todd, who has ALS.

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  1. Roxanne Kusske says:

    This story hit the nail on the head for me. Although my husband’s ALS hasn’t progressed as far as Todd’s, yet. I’ve had those exact same thoughts, and seeing it put into words, brought tears to my eyes, and has helped me to recognize better what it is I am feeling. Thank you!

  2. Dave Reckonin says:

    What a truly brilliant and moving piece of writing.

    I know exactly how you feel, Kristin, as I am a surviving spouse of a departed pALS.
    I can tell you that when the time comes the grief and anger will switch back and forth like a slow-moving metronome and very gradually it will lessen somewhat as we have to go on for our children, although it is unlikely to ever depart completely. My pALS is at peace after departing 16 months ago. I take comfort from knowing they are no longer suffering and also that they continue to exist in another vibrant, happy dimension.
    Why ? The evidence of an afterlife is voluminous and completely convincing. The evidence that somewhere a God loves us is depressingly weak and unconvincing.

  3. Deb Bowyer says:

    Wow. This is so powerful, and elegantly written. Such a great analogy and so very accurate. Thank you for expressing how I am feeling about my own struggles watching my husband be quickly robbed of his life from this awful disease. I too need to let my wolf sit at my feet instead of pushing him down to the basement. Because I find, when I do that, the feelings build and I become overwhelmed and constantly on the verge of a meltdown.

  4. Kristen, I’m so honored that you shared my visual of the wolf in the basement from my book Permission to Grieve. Holding massive space for you and your wolf as you navigate life with Todd’s ALS.

    • Kristin Neva says:

      The wolf is such an apt metaphor. I came across your work through the Robcast and now your podcast “Coming Back” is on my workout playlist. I’m going to order “Permission to Grieve” for my December Audible selection. Thank you!

  5. Dale Dalessandro says:

    Reading this article made me cry, it released my grief that I have been pushing down deep into that black hole where we hope and pray that this would just go away. My wife was diagnosed with ALS in April of this year. Her symptoms seemed to accelerate after the diagnosis. Currently, she suffers from loss of speech, the ability to swallow (she has a feeding tube), labored breathing, loss of strength in the arms and hands, and as if the physical symptoms are not enough, she has FTD.
    I have a lot of guilt because I feel that I should be doing more. I am the main caregiver, a 24/7 job. But, I would not have it another way. Like Todd, Chris needs me throughout the day. One difference is that I cannot leave Chris alone and go to the gym or shopping, etc. My guilt causes mood changes. Many days, like you, I want to go outside and scream!!! Why? What can I do? When will there be a cure?
    Yes, the wolf needs attention. But there isn’t time for that. I have to take care of my partner in life, my best friend, my loving caring wife.
    God Bless all of the caregivers who have loved ones suffering from this insidious disease.

  6. Carmel Mc Donnell says:

    I think the analogy of grief and a wolf to be a powerful one ! I lost the true love of my life to cancer nine years ago and although the wolf has become a more sudued animal he still is by my side and will always be there . He makes his presence known at special times and when i am feeling vunerable. At the start i howled with him , for it is only a primeval howl that can express such grief .

  7. Kathleen hill says:

    I am so sorry for what you all are living with. My best thoughts will be with you always. My husband was taken from me suddenly, a massive heart attack. We were married 40 years. He was the love of my life. He made me laugh every day. It is so hard to go on without him. I keep hearing god has his plan for us but it doesn’t seem fair that we go thru what we do and others don’t. I just felt the need to wish you positive thoughts. Live each day one at a time. Sincerely, Kathleen [email protected]

    • Monique Cook says:

      September 17th I lost my husband suddenly. We were married 30 years. Some days I feel like I don’t want to be here. My husband was a proud veteran who struggled with PTSD, depression, anxiety. His death day seems like everyday.its been extremely hard.

    • Nancy Small says:

      My name is Nancy and I lost my husband on April 3,2019 he died of a Brain stroke we were together 34 years, he was my husband best friend my world. Know one knows what it’s like to feel this loss if they have not loss their spouse. I know it’s hard to lose a family member or friend but a spouse/child it’s so hard but I was told to read a book called Permission to mourn by Tom Zuba, it’s a true story on his path of grief. Tom lost his baby girl and then his wife and then one of his sons, in reading his book I felt many of his feeling but the words in his book has been helping me. I think his book can also help comfort who read it, it’s fast reading I read some chapters and then I speak to my husband and cry for a while and I do feel a little better each time but it’s hard. I hope it will get easier.

    • Irene says:

      Hi Kathleen, my husband also died from heart failure. Your words are totally in sinc with mine. Trying to live life with a new normal is so hard.
      Still ask God why wasn’t there any healing for my husband? Irene.

  8. JoAnn says:

    Thank you Kristen for your journal. My husband was diagnosed with ALS January 24, 2019. Every time we get to a “new normal” something changes and sets off a whole wave of emotions and grief. It is good to know that someone else feels the same way. I leave my husband in the morning, on the trilogy while I run. I feel guilty at times, but it the only thing keeping me sane, I pray for miracles of healing and a miracle cure. May God Bless you.

  9. Susan says:

    I realize as I read your words, I should not complain. My husband died suddenly, at the age of 65, two weeks after a hip replacement. We think a blood clot was the culprit, but we’ll never know for sure. Even though he’s been gone for several months, after a 45 year marriage, I doubt that the grief will ever leave. Every day that passes brings a thousand new ways to miss him. I’m shocked that my heart continues to beat. Trying to leave my burden with my Savior. I will pray for your family Kristin, for peace.

  10. Kathy Tracy says:

    My husband doesn’t have ALS, he has Alzheimer’s Disease. He has been in the early stage for over a year but he has been declining rapidly during the last few months. I also have been experiencing the emotions you talked about. I’m losing the love of my life before my very eyes! We’ve been together for 52 years (since we were 15!?!) and have been married for almost 50 – our anniversary is next September and I don’t know what to expect… I pray for patience every day (not doing too well) and I try to be grateful for the good stuff (sometimes I have to look for it) but the anticipatory grief is overwhelming sometimes. Thank you all for sharing your stories. It helps to know that I’m not alone in my feelings.

  11. fran lancaster says:

    I am blown away by your words Kristen. Like Dave, I too lost my husband, the love of my life, 16 months ago after 6 long, life-interrupted years with this disease. It is such a cruel disease as it progresses slowly enough that you take note of every decline and new paralysis but also it is fast and relentless in it’s march towards death. The hardest thing for me was seeing my lovely husband become locked-in and ever so slowly become unable to respond to me until the only thing left that he was able to do, was to blink and produce a weak smile. It is simply torture. I remember holding him up in the shower when he was still able to stand, and letting the water course over us and hugging him and praying that the progression would just stop there. That even as ravaged as his body was at that time, if it would all just stop right there, that we could handle this, that we could manage if it would just stop progressing. But of course it did not. My heart aches with a pain that I constantly push away and I look for distractions hour by hour.

  12. Francine Stroud says:

    Wow! Took my breath away! The grief stalks me and overcomes me at the most unexpected and inopportune moments… reading this article. As I watch my husband decline and see the life we hoped for disappear. Always readjusting and adapting to the new normal and trying to find joy in the moment.

  13. Robert Hopkins says:

    My wife was diagnosed on May 2nd of this year. Bulbar form. Friends and neighbors ask me how I’m doing … all the time … as her 24/7 caregiver. My answer confuses most: “I don’t know.” I really don’t know. Part numbness, part grief, anger, bewilderment, sadness of course, and many more emotions. All I know is I feel better being here than anywhere else. Out in the world, running errands, I find myself being clipped, curt, stone quiet, only eager to get home. That feeling hasn’t changed one iota since May 2nd.

  14. Diann Harper says:

    Wow- thank you so much for helping me to know what I’ve been feeling is “grief”. Your writing was not only inspirational, but so informative! I hope my feedback will help you through each day! Thanks also to everyone for sharing their stories, because they also are very validating. Keep up the wonderful writing Kristin.

  15. Carol Nash says:

    My husband was diagnosed in Sept. of this year at age of 76. It turned our world upside down. He seems to be progressing fast even though our Doc. Seems to think different. We were married 57 years this year and I thank God that we have had a very good life but that does not make it any easier. My faith is the only thing that is sustaining me.Prayers for all of you out there.

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