Losing Mobility, Losing Myself: Chronic Pain and Surgery Have Redefined My Reality
I have always been relatively active—less than the hardcore bodybuilder and more than the weekend warrior.
As a young girl, I roamed miles daily with my brothers, either by bicycle or on foot. I climbed boulders along the Spokane River and scaled trees. Once I started driving, walking became less of a necessity, but I still took to the neighborhood streets several times a week.
As a mature woman, I’m part of our self-proclaimed “Walkie Talkies”—a group of four ladies in our sixties and seventies who walk together as often as possible, enjoying exercise and conversation.
Day-to-day life is inherently active, from cooking, cleaning, and caregiving to shopping, yard work, and the countless other tasks that come with living. I never considered myself sedentary. That all changed nearly a year ago when my world suddenly became very small.
My world suddenly became very small.
I have suffered from chronic back pain for many years and have undergone three major back surgeries over the past twelve years, the most recent just six months ago. I won’t go into detail about the mechanics of my condition, but due to unrelenting pain, I took to a wheelchair and walker two months before my surgery, and I have not left them since. I did not recover from the surgery.
Unless you’ve experienced it, it’s hard to grasp how challenging it is to live without mobility in a world built around movement.
I can’t put weight on my right leg, and I’m unable to stand for more than three or four minutes without severe pain. Walking with a walker is painfully slow, and our house isn’t handicapped-accessible. The hall is not wide enough to accommodate two-way traffic when a wheelchair is involved, so I can’t enter the bedrooms or bathrooms with it; instead, I have to leave the wheelchair in the front room and transfer to the walker to go down the hall. Tasks I once took for granted—showering, brushing my teeth, getting dressed—now require logistical tactics I never thought about before.
I am dependent on others for almost all of my daily needs. I can’t stand in one spot long enough to cook. I can’t drive. I can’t bend over to pick things up off the floor or clean up anything I spill. I can’t carry dishes to the table, load the dishwasher, or wash dishes in the sink. There are a million things I can no longer do—tasks I never thought twice about in my able-bodied past. My world consists of the space I can reach in front, to the side, and immediately above me. Getting a cup from the cupboard is impossible. I can manage something from the refrigerator only if it’s at the front of the bottom shelf and ready to eat. I can’t assemble food.
I can’t hold my younger grandchildren on my lap or go on road trips with my older ones. Their time with Grandma has become limited and likely rather boring, and I want so much for them to remember better days ahead instead of the frail old lady I’ve become.
I want to be clear that my friends and family have been extremely supportive and helpful. My husband has been a saint in all he does for me. But none of them live in my world. When I’m sitting in the recliner and a well-meaning loved one straightens up my small world on the side table, they move my walker. They can’t realize that moving it just one extra foot means I can’t reach it—and that means I can’t get out of the recliner, I can’t reach my wheelchair, or, at times, I can’t even make it to the bathroom.
I am constantly told to “just tell me what you need,” but there are so many things I need every hour. I reach for something on the table and knock something else off—it needs to be picked up. I spill some granola on the floor—it should be swept up. I leave my water bottle in the other room—it’s a major effort to go get it.
I’m tired of asking for everything. I hate asking. So, I don’t.
I wait until my husband is hungry and ready to cook instead of asking him to scramble some eggs for my breakfast. I don’t complain when he cooks beef every day instead of poultry or fish. I settle for canned green beans or corn for dinner instead of roasted fresh vegetables. I don’t tell him which annuals I’d have chosen for my flower garden; I simply admire the petunias and marigolds in the yard. I don’t question his decisions about what to buy at the grocery store or how to do laundry since I can’t do any of it myself.
And my brain is muddled from pain pills, so it is not difficult to abdicate major decision making to others. I can barely get through a newspaper article in one sitting without scrambling the words, let alone remember more than one sentence that I read.
I am not a saint. I’m just too proud to complain. In my family, we were raised to be tough—my mom was a “tough old bird,” meaning she did whatever she had to do in life to take care of her family. Meaning I have to do the same. Meaning, I must not cause extra work for anyone else if at all possible. Meaning I stuff my needs and feelings way down inside.
In the process I have lost myself. The person I used to be is locked somewhere in this pain-ridden body. Who is this humble, meek being I now call “me”?
She’s someone whose every minute is spent figuring out how to get from here to there with the least amount of pain. She’s someone who studies the space around her, engineering each turn of the wheelchair to avoid bumping into anything—or anyone. She’s a small voice asking, sometimes, if someone could please bring her some water. She hates asking for anything and hates losing her independence. She’s someone who is trying very hard not to lose hope.
I want to find the independent, opinionated woman I used to be. She was someone interested in all kinds of things. I want to find her, but right now, I can’t.
Holding on to Hope
Don’t feel sorry for me—that’s not what this is about. I do have hope. The doctors believe the physical culprit of my plight is a bad hip joint, and I am scheduled for surgery in seven weeks. As they say, there is a light at the end of the tunnel and an expectation that I will find myself again.
My experience has changed the way I see others who use wheelchairs.
Think about those who will be confined to a wheelchair permanently. Do they feel lost? I know I’ll never look past them again. I’ll always try to look beyond the wheelchair to see the person sitting there. I’ll do what I can to expand their world, even if it’s just a brief conversation to remind them they’re not small.
Next time you see someone in the grocery store staring at the shelf above them, don’t ask if they need help—sometimes that only makes them feel helpless. Instead, step in with a smile and say, “Let me get that down for you.” If a door lacks a handicapped button, just open it without a word. Yes, there’s a chance you might risk offending someone, but more often than not, you’ll likely be met with a warm smile and a thank you. Do it because, after all, it could be you in that chair.
October 28, 2024 @ 10:56 pm
What a moving piece. I recently lost my father and find myself grieving not only the loss of him but also the version of myself that existed when he was still here. Anne’s account of losing her old self and coming to terms with not just a new physical reality but also a new mental one resonates deeply with the grief work I’m doing as I adapt to my new world. Thank you for sharing this account of loss and hope.
November 2, 2024 @ 10:52 pm
This story has really touched me personally. I have a sister who I love that suffers from the same pain and wheel chair confinement as Anne. I know she has been hurting and unable to walk but I hadn’t realized the extent of the hardships that she is going through. My sister also has a surgery coming up and I have all of the faith that it will be successful and she will be dancing soon. I have the same faith that Anne will be dancing also.
November 7, 2024 @ 3:46 pm
Anne’s story has truly moved everyone who’s read it, and I’ve had so many messages and calls from people grateful to hear her voice. It’s resonating on so many levels—not just because people want to support UP but because Anne shared with such honesty, vulnerability, and strength. She brought her whole self to this post, and it shines through.
Full disclosure for everyone reading: Anne is my aunt and Larry is my dad. 😊 Dad, thank you for always being so open-hearted and supportive, especially as I work to build Unencumbered Press into a space where stories like Anne’s can truly touch people.
UP is here to amplify stories that resonate and connect us all. I’m grateful to everyone who’s engaged with this post and supported our mission to create a meaningful community around these shared experiences.
November 7, 2024 @ 3:21 pm
Anne’s reflections on chronic pain and losing mobility really hit home. The loss of independence reminds me of what my mother went through in her final years. The struggle of needing help but not wanting to burden others is something many can relate to. Her strength is inspiring, and I truly hope the upcoming surgery brings the relief she deserves. Such a powerful reminder of the resilience we all have, even when we feel like we’ve lost ourselves.