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.
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About the Author
Roxanne Kusske
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!
Robin
A beautiful and precise way to describe any kind of grief. I like thinking of it as a wolf. God bless you all.
Dave Reckonin
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.
Herman Steyn
I know that wolf too well. My daughter cindy died on the 28 October 2019 after only 1year diagnosed with ALS.
Deb Bowyer
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.
Kat
Omg, I too have this wolf of grieve to calm. Beautiful words, amazing share, thank u
Shelby Forsythia
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
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!
Dale Dalessandro
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.
George
Dale as I sit here trying to hold down the angry I feel, trying to hold back the tears and the loneliness I feel. I read your reply and you seem to touch on everything I feel. My wife died of ALS On Oct 15 th. My wife was 65 years old, She was the Love of my life. She was diagnosed in 2018 unfortunately she caught a cold and contracted pneumonia which caused her ALS to accelerate in it’s progression. I know the feeling of helplessness, feeling guilty that I could not relieve the pain she suffered! The angry I felt when I saw couples walking down the street hand in hand, knowing all the plans my wife and I made will never happen. Dale thank you for your post it help to know that others feel as do. George
Carmel Mc Donnell
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 .
Kathleen hill
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
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
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
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.
JoAnn
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.
Susan
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.
Kathy Tracy
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.
KG
Such a great article. As an ALS patient this even describes how I feel myself.
fran lancaster
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.
Francine Stroud
Wow! Took my breath away! The grief stalks me and overcomes me at the most unexpected and inopportune moments.....like 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.
Robert Hopkins
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.
Diann Harper
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.
Carol Nash
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.
George
As I read through all of these posts I feel a connection with all of you. As many of you,I lost my Loved one to ALS. My wife died of ALS in October of this year. After just three years, starting with a keen problem, which was then thought of being a hip problem then onto we don’t know what is causing the problem. After test after test with no diagnosis. The roller coaster ride of No it’s not ALS! To it could be MNM or MS to a half dozen diagnosis’s all of which seemed like a better diagnosis than ALS. I was there for my wife heartbreak when all the Doctors gave up! Finally giving up and declared since they couldn’t figure it out, it was ALS! As I continued to work nights and try to take care of her during the day. Watching as the ALS robbed her of motor control of first her legs, then her Arms and fingers. The guilt I felt because I couldn’t ease her pain. The angry I felt that we wouldn’t spend our final years together. The angry that she will never be able to hold her granddaughter, who will be born soon! The things I miss most is her voice, her Beautiful Smile, The touch of her hand in mine, and even her scolding me when she didn’t agree with something I said or did. God Bless all of the Caregivers of ALS Victims, May God help ease the pain we feel, And the Loneliness we all Feel.