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.
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.
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