Granting Myself Permission to Sit With My Grief

Kristin Neva avatar

by Kristin Neva |

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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.


Byrne Smith avatar

Byrne Smith

This column by Kristin Neva hits close to home as I lost my wife to ALS in August. My experience with grief, I discovered only after her passing, took place during the relatively short time she lived after diagnosis (18 months). Looking back, it was more intense and periodic as she declined than anything I experienced after her death, if that is any consolation. A grief counselor with the hospice caregiver group called this phenomenon anticipatory grief. This helped me understand why I felt more sadness than grief after her death.

Lisa avatar


I like how you worded this grief. From the minute my husband was diagnosed, we knew the end result. I went into overdrive preparing for what was to come. No looking back and living day to day, I didn’t realize the sadness I would feel. Grief is a whole different sadness.

Deb Gordon avatar

Deb Gordon

I just recently learned that my husband has ALS. He is 52 and it seems to be the faster moving version from what the doctors and I are witnessing. He was walking with a cane in October and now he can barely stand so we have a temporary wheelchair until his fitted one arrives. We have two teenage children. We have not explained this disease to my son yet. I want to be positive and I want to do everything and be everything but at the same time the reality is I lost all the things you stated in your article and I should be allowed to grieve for those losses and what I will continue to lose. Thank you for sharing. We also live in Michigan. ❤️

Debbie Zolnierowicz avatar

Debbie Zolnierowicz

Thank you for sharing Kristin. I listened to that podcast, and I remember feeling the same way. My husband was diagnosed in May - ALS awareness month, yay!

I haven’t known a world yet where everyone else is going on with “normal” life. It’s selfish, but I’m glad. I know I would have resented it in the earliest months, when my grief would bring me to my knees.

My family likes to have really “deep” conversations, and one topic explored with beers and a campfire in the Northwoods (happy place ?) was “if you could know when you will die - not the time and day exactly but the general concept - would you want to know?” I still don’t know the answer, but there have been some profound moments of honesty, clarity, and intimacy that returned to our marriage. We’ve shared things like we were teens again, just trying to figure out the world. Which is pretty much the truth.

DeniseBlair avatar


THANK YOU FOR YOUR ARTICLE.I lost my spouse 2 years ago to ALS.I still grieve the loss he was a very active man when diagnosed it was a short period of time but very hard to watch.

Dave Reckonin avatar

Dave Reckonin

Grief is, I think, unending. I feel that all, and I'd stress ALL human beings can deal with it eventually. Some will do this better than others but we can all get through it. Family is the best source of counselling and therapy so I'd recommend steering well-clear of the For-Profit industrial machine of the Grief Counselling sector, which clearly consists of letting the person who grieves work through and talk through the counsellors tick-box list of items to cover.


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