It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. Loss is often talked about as an event that happened in the past. It’s difficult to process grief when you know you haven’t reached the bottom yet, when the losses keep coming.
In Brené Brown’s “Unlocking Us” podcast, she and grief expert David Kessler discuss the collective grief the world is feeling during a pandemic. Even those who haven’t lost loved ones are disoriented and experiencing social isolation, uncertainty, and financial instability.
Kessler said, “The world we knew is now gone forever.”
That statement resonates with me, because that’s how I felt when my husband was diagnosed with ALS over a decade ago.
Kessler said grief encompasses more than the death of a loved one. It is the death of something. He said we need to name our grief. If we don’t name it, we can’t feel it, and if we can’t feel it, we can’t grieve it.
There are many losses that can be brought on by a spouse’s ALS, even before death.
- Loss of dreams for the future.
- Loss of jobs and relationship roles.
- Loss of a belief system about how the world works.
- Loss of shared hobbies, such as hiking and biking together.
- Loss of physical intimacy.
- Loss of help with the household chores.
- Loss of backup when you are sick or tired.
- Loss of the partner we had if they’ve been affected by depression or cognitive decline.
- Loss of outside stimuli for those who are full-time caregivers, and loss of the energy brought to a relationship by separating throughout the day and then reconnecting.
Kessler said, “It’s not going to be forever. It will end. There’s not a dark night that stays.”
When I heard him say that, my heart cried, “Yes, but that will be a life without my husband.”
Kessler was talking about the pandemic, and that is where the similarities to living with ALS end. Those who haven’t lost loved ones to the pandemic can imagine a brighter future when it is over. But for those with ALS, our loved ones aren’t getting through this with us unless there’s a cure, which is not yet on the horizon. The end of ALS will be the loss of my husband.
With that will come more grief. I don’t want that life. I don’t want to be a widow. I don’t want our children to lose their father.
At times, I’ve shared my ongoing grief with people. Some friends are willing to sit with me in it. Others try to push me through it. It’s an uncomfortable place to hang out. Even in writing this column, I feel an impulse to find resolution by listing things I’m thankful for, rather than just sitting with discomfort.
We need to give ourselves permission to feel grief.
When I see a couple walking hand in hand, I wish my husband and I could do the same. When I see pictures on social media of families hiking, I wish physical activities could still be a part of our lifestyle. When I lie in bed next to my paralyzed husband, I wish he could hug me.
In those moments when sadness washes over me, I try to give myself space to grieve. When I do, sorrow subsides, and I feel moments of joy, thankful for the good that still exists.
Trying to hold both sorrow and joy is uncomfortable, but with practice, we can become more at ease with the tension of opposites.
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, and are intended to spark discussion about issues pertaining to ALS.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?