I’m Wearing a Grief Backpack

Kristin Neva avatar

by Kristin Neva |

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On one of my recent daily walks, I listened to an “Office Ladies” podcast in which Jenna Fischer shared her ongoing struggle with anxiety. She used the analogy of a backpack to describe the burden she lives with. Some days it weighs her down, while other days she barely notices it. Acknowledging that her backpack will always be with her was a mental shift that helped her cope. I appreciated her vulnerability, and her backpack analogy resonated with me.

I also carry a backpack. Mine is grief.

I was given a grief backpack nearly 11 years ago when my husband, Todd, was diagnosed with ALS. Initially, I read books about grief and met with a counselor, desperately trying to find a way to get this thing off my back. I eventually realized that it is here to stay.

Some days the backpack is heavy, such as when Todd experiences more decline, I see other families go on trips, take hikes, or do other activities I wish we could do together, or I feel weary from caregiving.

Now that I have a grief backpack, I’m on the lookout for others wearing them. They are the ones who understand. There are a few sensitive souls who are born with such a backpack, but many of us don’t get our grief backpacks until our lives are upended by something catastrophic like ALS.

Those in the ALS community — people who have the disease or love someone with the disease — are all wearing grief backpacks.

Our backpacks are stuffed with lost dreams and abilities.

They are full of jobs we can no longer do, friends we no longer see, and favorite shared activities we can’t participate in.

Anticipatory grief climbs in. Even while we still have our loved ones, we grieve a future without them.

Some days my grief backpack feels lighter.

When the sun is shining and we drive to the beach to sit on the shore of Lake Superior.

When we have a family movie night and laugh together at a comedy.

When we sit on our outdoor patio, warmed by a fire in the chimenea, and we watch the kids play volleyball in the soft, evening sunlight.

When a friend calls or comes over for a cup of tea.

When I go for my walk and take in the beautiful scenery near our house while listening to a delightful episode of “Office Ladies” podcast.

A beautiful day near our Midwestern home. (Photo by Kristin Neva)


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Jim Keen avatar

Jim Keen

All so very true. Thank you for your article-putting it all in that context was actually comforting.



Thank you for sharing this. I lost my dear husband Denny to ALS on March 30. I struggle with my grief, but most days it overwelms me. Somehow i find the image of the backpack helpful. .. sometimes so heavy i cannot stand,,,at other times...light enough so that i can go on. good luck to you and Todd....treasure every moment....

Nona Fine avatar

Nona Fine

Oh my, your words have the ability to break my heart and hold me up at the same time. Thank you.

AKY avatar


I listened to the same podcast and thought the same thing. I am a caregiver to my husband who has a faster progression and we have a teenager.
I appreciate your well-written blog posts as I really identify with them.

Richard Burkett avatar

Richard Burkett

I have been wearing a grief pack since my wife and soulmate of 57 years passed on Oct.28th of the ravages of ALS. I have followed your posts for some time and marvel at your ability to express so concisely and accurately the angst and emotional roller coaster I have experienced as a caregiver and widower.
Thank you for sharing.

Linda Roberts avatar

Linda Roberts

This was comforting to me to read. My husband was just diagnosed Dec of 2020 with ALS. He is 68 and it seems to be progressing quickly, (don't know why people use the word 'progressing' however). The anticipatory grief is something I went through with my father's death a few years ago, but of course much different now that I am going through this with my husband of almost 35 years. The emotional support we have received from our family and friends has been absolutely wonderful so far, but reading these newsletters and posts is extremely helpful, as so much really hits home. Thank you for sharing. Blessings and light.

Jan Clapp avatar

Jan Clapp

Hi Kristen, I have read your blogs for some time, and they have been very enlightening and comforting to me. Your and Todd's courage and strength are inspirational. I was diagnosed in August 2020, and just being able to see how others are dealing with this awful reality has been very helpful. My adult children and my husband of 40 years are walking this journey with me. I pray for your family as you continue to care for Todd and raise your children. Please know that you are helping others as you share your life with us.


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