Redefining What is "Normal" with Love in Caregiving
By Myka Alley I Start Wondering, Graphic and Web Designer
We live in a world that loves a good glossy finish. We scroll through social media or look at the people around us and see lives that seem perfectly mapped out, successful, and bright.
But here is a truth I have learned over my 46 years of life: no matter how much someone’s face sparkles on the outside, they have issues, too. Life is completely different for everyone, and nobody gets through it without a hidden weight.
Society often hands us a shiny roadmap for what childhood, career, or midlife should look like. But true resilience isn’t about following a perfect roadmap. It’s about what you do when the roadmap tears and you have to build your own path from scratch.
An Immigrant Mother’s Best
My first and most profound lessons in this kind of resilience came from my mother. She came to the United States when she was 14 years old. Her mother gave her tickets and instructions and sent her on her way alone. Life in Germany had been very hard for them. After spending time in different orphanages and in refugee centers, my mother was now on a big adventure to a new country to live with my uncle.
By the time I came along, she was a single mother trying her best to raise an “all-American girl,” but she was doing it without a roadmap. When my health began to fail at the age of eight, the challenges multiplied. She had no idea how to navigate the American medical system while working and raising a child. There were no instruction manuals, so she had to rely on what the doctors told her about fibromyalgia, which they didn’t understand themselves, and move forward one agonizing step at a time.
The advice she got swung from one extreme to the other. She was told I would be in a wheelchair by the time I was 18. Medical professionals and friends told her, “Oh, she is manipulating you.” My mother was left to figure out which one to believe.
When I look back on those years, I don’t see perfection. I see something much better and fiercer: unwavering love. She did the best she could with what she had. As I often say today: I’m alive, so she did something right.
Finding My Own “Normal”
I was finally diagnosed with fibromyalgia at age 11, and it was the end of a very long, confusing road. Pain and fatigue had been my constant companions for as long as I could remember, so I didn’t realize my experience was unusual. To a child, whatever reality you live in is just “normal.”
I will never forget the moment it clicked. After the doctor explained my diagnosis, I turned to my mother and asked: “So, everyone doesn’t hurt all the time, like I do?”
That was also the year I started rebelling, not just against my mother, but against my body. Luckily, I only got in trouble with her.
Fibromyalgia wasn’t only a hardship on me. It was a hardship on my mother, too.
Where the Carousel Came In
My mother’s trusted co-worker told her about The Carousel, a nonprofit that used therapeutic horseback riding for children and adults with disabilities. I wasn’t a client. I spent 13 years there becoming a hippotherapist, learning to use a horse’s movement itself as the therapy. In which the client's physicality and horse showed what they needed before the person could tell me in words.
It truly changed how I saw things. But what The Carousel really gave me didn’t register until my mother was diagnosed with dementia.
Coming Full Circle
While my mom is often lucid, mornings are often very different. Many times, I find her so confused that she looks frightened.
I remember sitting in a back hallway as a little girl, waiting through appointments and uncertainty while my mother held everything together. Now I stand across a different hallway, watching that fear ooze from her instead.
I walk to her slowly. I hold my hands out, palms up, elbows tucked at my sides. I don’t reach for her. I wait for her.
“Oh, I’m sorry. I didn’t mean to disturb you,” she says, startled to find me there.
“Did you sleep well?” I ask gently.
“Ya, sure. I’m just going back in here.”
“Look at me. What do you feel?”
Her eyes dart around, searching for a quick exit. Finally, she looks at me.
“Well, you poor thing, you have my nose.”
“How do I make you feel?”
Tears well up in her eyes. “Loved”
“I do love you.”
She looks at my hands, then she reaches. Her fingers find mine, and we hold on until she’s ready to close the last bit of distance herself and come in for a hug.
My heart breaks, not for me, but for her. I knew this day would come. Knowing didn't make it easier for her.
Somewhere along the way, I stopped asking who, what, and where, and started asking how something made her feel. I told her it was okay to use sounds instead of words when the words wouldn’t come. It seems to help her more than any question ever could. We have been walking the road of dementia together for three years now. Every day, she thanks me. She tells me she doesn’t say it enough.
There is no roadmap for watching the person who built your resilience slowly lose the ability to remember what she has done or what to do.
Validation Therapy
I spent years at The Carousel learning to be a calm, steady presence for bodies that couldn’t explain themselves in words. I didn’t know I was also being trained for this.
What I was doing in that hallway has a name. It’s called Validation Therapy; it was developed by Dr. Naomi Feil, a gerontologist who worked on it between 1963 and 1980. She was not happy with the way people were being taught to handle older adults who were confused or disoriented. Most methods then tried to correct people and pull them back to “the truth.” Feil went a different way. She believed you didn’t need to bring someone back to your reality. You could step into theirs.
The idea is simple, even if it isn’t always easy. You treat what a person is feeling as real, whether or not the facts behind it make sense. You’re not trying to win the argument or get them to remember something correctly. You listen for what’s underneath the confusion, and you respond to that. Eye contact. A calm voice. Your hands. Sometimes those things say more than anything you could say out loud.
I didn’t learn that in a caregiving class. I learned it in an arena, trying to calm something that couldn’t tell me in words what was scaring them. Open hands. No rushing. Meet the fear where it is, not where you want it to be.
If you’re in this with your own mother, father, or someone you love, here’s what I’d tell you:
Don’t argue with the confusion. You won’t win, and you’ll only make them feel smaller.
Approach slowly, where they can see you. Coming up fast or from behind can scare someone who’s already disoriented.
Ask about feelings, not facts. “How do I make you feel?” gets you further than “Do you remember me?”
Give it time. The pause before they answer isn’t a problem to fix. Let it sit.
Let your hands do some of the talking. A hand held out or a hug can say what words can’t anymore.
The Wisdom of Being You
Many of the women in the I Start Wondering community are navigating life transitions. Perhaps you are dealing with an unexpected medical diagnosis, a sudden shift in your career, the heavy mantle of caregiving, or a season of life that looks nothing like you thought it would.
When life forces you off the standard track, it is easy to look at others and feel like an outsider. You might look at someone else’s seemingly sparkling, effortless life and wonder why your path has to be so rocky. But remember the lesson of the sparkle: everyone is fighting a battle you know nothing about.
I was told for years that what was happening to my body wasn’t real. Now I sit with my mother, and what’s happening to her mind isn’t something I can argue her out of either. All I can do is show up open-handed and let her find her way to me. It’s the same lesson in a different body, and the same two people, a mother and a daughter, still learning how to reach each other.
If your life doesn’t fit the traditional mold, stop trying to force it into one. Your unique “normal” is where your strength lives. Trust the path you are on, honor the people who helped you survive the rocky parts, and, above all, believe in yourself. You don’t need a flawless roadmap to live a beautiful life. You just need the courage to be you.
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