I Hate the Feeling of Knowing What’s Coming
I pleaded. I bargained. I threatened. But it was no use. My dog would not back away from the woods behind the shed, where he had been sprayed by a skunk just two weeks earlier.
I was more panicked when he got skunked than I was now. I frantically searched the internet for how to rid dogs of the smell. My kids and I bathed him outside with a hose using a variety of solutions, including baking soda and Dawn dish soap.
That had mostly done the job, but Comet continued to carry a faint odor around his snout, and I had to replace his collar.
And now, just a day after his trip to the groomer, I should not have taken him for a walk with me, because the sun had set and our nocturnal neighbors were coming out of their dens. But our daily walks are the highlight of Comet’s day, and he had waited expectantly by the door as I put on my tennis shoes. Against my better judgment, I let him come with me.
We walked around the field once and were heading back to the house. I intended to put him inside before it got too dark, and then continue with my walk. But he ran into the bushes behind our shed and alerted me to something I could only assume was a skunk, though I hadn’t smelled it yet.
Comet barked excitedly, and my throat grew hoarse as I alternated between scolding him and offering treats.
I fell silent, resigned to the inevitable. I hate that feeling of knowing what’s coming and being unable to prevent it.
All I could do was wait a good distance away. Finally, the stench wafted over. Comet continued barking, and eventually trotted proudly to me with his head held high, as though he expected affirmation for his battle. He was ready to continue our evening walk.
“Bad dog, you’re getting a bath!”
This time, I knew the drill.
After my husband, Todd, was diagnosed with ALS more than a decade ago, I felt panicked and fearful about the future. I had to train my mind not to go down the road of “what ifs.” We prepared the best we could, but then we had to take problems day by day.
In the beginning of the disease, I pleaded and bargained with God. I scoured the internet for possible cures. It felt better to try supplements that may help extend his life than trying nothing. But the disease progression continued.
Now, I feel resigned. I hate that feeling of knowing what’s coming and being unable to prevent it.
I know the drill when there is a toileting mishap. I don’t feel panicked when Todd’s lungs fill with mucus. It’s stressful, but I know how to help him when he can’t cough and struggles to breathe.
I have an idea of what we will face as the disease continues to progress. With much experience, I am more capable of meeting various challenges. I try to live the best I can, appreciating the magical moments that still exist in our lives and in the world, but I wish I weren’t resigned to such a difficult present and future.
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Comments
Ellen Brockway
You must have been inside my head when you wrote this. I too hate knowing what's ahead and not being able to do anything about it. I to live in MI. We have a sm summer place in alpena but live further downstate. I don't know how you do it. It is indeed hard to stay out of dark places with what ifs. I'll follow you. Thanks.
Kristin Neva
Thanks for commenting Ellen!
Celeste A. Rheaume
I have a dear couple who took me into their home last Oct. 2020 The wife I have know over the course of 40 years. Our Parent's were friends. We knew each other's families... She is pure joy. Uplifting and a cheerleader in your court so to speak. She daily says on any givin topic, " What can you do about it? " "Nothing." We truly living day by day. They laugh and share hilarious stories daily. Always smiling through their aches, pains and numerous ailments. My mother always said, " Ask a busy person and they will always come through for you." True. They help me get through this A.L.S. I encourage all of you to persevere and show them we can do our best to live longer.
Kristin Neva
Wonderful that you have such an encourager/support person! Thanks for commenting!
Paul Tavano
Thanks for sharing and documenting how so many of us feel.
Joan M Roy
I was very interested with the article! What comes next? We may think what now, but until it happens we can’t really imagine!
I am in this same Situation! I have been going to Drs, all kinds of Drs, I believe I have had ALS for at least 2+ years! I finally got my diagnosis a few months ago at Dartmouth Hitchcock in Lebanon in NH! After MRI’s ,Blood work, 2 EMG’s and 3 Neurologist’s! I was officially diagnosed with ALS! My heart was broken, and the pain I saw in my husbands face , 60+ years of marriage and this!
I raised my head up, and even this terrible sickness has bit me big time, I smile, laugh, worry somewhat, but basically I am in a good mood! I see the decline, I fear somewhat, but I do NOT dwell on the future! Everyday is a gift! I just started wearing my AFO’s they are helping me tremendously! What all the steps will I cross? I don’t know , but I am going to enjoy every minute I can!
I will go out with this, with courage, and a devoted husband , 5 boy’s, grandchildren, and great-grandchildren and a wonderful village of friends! I am not alone, that is what really matters! Thank you for reading! My thoughts and prayers are with all the ALS patients! You are NOT alone, Joannie :)
Kristin Neva
Thanks for your encouragement and for sharing your story Joannie!
Monique Pitre
Thank you for sharing.. My husband and I are new into this.. He was diagnosed December 2020. Now we are both on disability. I for depression and anxiety plus osteoarthritis. He was my rock. Now I am his caregiver. He is 60 And I 56. We were so looking forward to retirement, traveling and enjoying our grandchildren. Now I fear the known/unknown. The most difficult is it is affecting him cognitively. Most difficult for me but probably best for him in the long run as he will maybe not really be aware. Therefore not miss what was and what could have been. How do I change my mindset of "I am mourning my husband before he is even dead " I am just so sad for him and I, our children and grandchildren.
Kristin Neva
That is so tough, Monique. I have a hard time on days when my health is compromised. Cognitive difficulties make things even harder. I wish I could be rid of grief but it hasn't gone away since my husband was diagnosed 11 years ago. I have come to accept that I need to live with it and, at the same time, find what beauty still exists in our lives.
Corie Denning
Dear Monique, your message touched my heart because I feel like I have way too much practice mourning losses in progress. First, it was the final six months of my dad’s life when I was 19. Then, the slow progression of my mother’s Alzheimer’s and my brother’s misunderstood neurological illness that ended with the loss of both of them just one month apart. Now, less than two years later, I was just diagnosed in July with ALS at the age of 49. I truly feel your words, “I’m just so sad.” I think it’s ok to be sad. Of course we are sad. We have so much that we will mourn and miss, but in that is so much gratitude. For me, it helps to remember that I’m sad because I’m losing precious relationships which I’m so grateful for. This gives me permission to grieve a little at a time along the way, but also to celebrate what I have and remember to say and do the things I want to say and do now. Grieving ahead is a burden, but also a gift. I pray that it will be for you too.
Kristin Neva
Thanks for sharing your wisdom Corie!