I’m Wearing a Grief Backpack

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
manual assist cough, memories, trauma, grief, mindset, end, NurOwn, ALS Awareness Month, uncertainty, distract, family time, traveling, happiness, broken, social media, little things, Rare Disease Day, winter, abilities, grief, what if, emotional impact, dark, human experience, laughter, presence, growing up, patients, strength, bittersweet

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)

***

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.

Comments

Jim Keen avatar

Jim Keen

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

Reply
SHERAN SEIF avatar

SHERAN SEIF

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....

Reply
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.

Reply
AKY avatar

AKY

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.

Reply
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.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.