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In the summer of 2020, while the world was consumed by the chaos of COVID-19, I was grappling with a deeply personal crisis—the overwhelming pain of being diagnosed with GNE Myopathy.

GNE Myopathy is a rare genetic muscle disorder that causes progressive weakness, particularly in the legs and arms. Over time, it can lead to significant mobility challenges, often requiring assistive devices such as braces or a wheelchair.

As the world around me paused, my own life felt like it was accelerating toward an uncertain future, marked by the stark reality of this condition.

Choosing Gratitude Over Pity

Today, four and a half years later, if you offered me a magic pill to restore my movement—of course, I’d take it. Because, yes, grieving the loss of movement is part of my life. Grieving the ability to move as I once did is here. But that’s okay—the grieve can stay.

But! If you offered me the magic pill to turn back time, erase the diagnosis, and go on from there, I’d say—No.

There’s a big difference in that. I’m not fond of the opportunity, but I’m also not drowning in pity over what I lost.

Letting Go of the “Good Life” I Once Desired

Here is why … My life has been enriched in ways I could never have imagined. My mind has never been freer, and my heart has never been more open.

Before I received this diagnosis, I desired a “good life.” And that good life was defined by my mind. So I blindly listened to my mind and did everything I could to reach that goal.

I was convinced that one day, if I just put in enough effort, I’d be happy. Ironically, it was exactly that effort that made me ill and prevented me from seeing the beauty of life.

The Struggle to Heal: It Wasn’t the Body That Needed Healing, It Was the Mind’s Desire

On the way to that goal, the symptoms started to become more severe, and I could no longer move as I once did, reaching my version of a “good life” became impossible. All the milestones I had set crumbled into the abyss, and I was left stranded in the middle of nowhere.

Receiving the diagnosis was painful. At first, I resisted—trying even harder. From allopathic medicine to every kind of healer, detoxes, diets, workouts—anything I could find.

It didn’t help that I blamed myself for not being able to "heal" myself. Willpower and discipline alone didn’t get me anywhere. At some point, I had to let go—release the idea of what my mind thought healing and a good life should look like.

Finding Stillness: What Happens When You’re Forced to Stop Moving

Today, I have to watch every step I take. Like an old lady. When I enter a restaurant, I watch the step and hold onto the door. The same when I leave the place. When I cross the street, I have to make sure I don’t trip over uneven concrete. My eyes and awareness are constantly focused on the floor to ensure I don’t fall.

Some time ago, I walked with my dogs in the Oaxaca mountains. I was wearing my braces and using my walking stick. And again, I had to carefully watch every step to make sure I wouldn’t trip.

The sun was setting, but I hadn’t reached the top yet. Frustration rose—I was really mad, actually—that my “crippled feet” were keeping me from watching the sunset. I wanted to see it while I was walking. I wanted to walk with my head high. But my “stupid feet” made me look at the “stupid floor.”

I stopped walking—and stood, still fuming. Then I looked up, overlooking the little village, the grazing bulls and goats. The sun was setting beautifully in hues of pink and orange, with little purple clouds dancing in between.

I was ‘just’ looking.

And then it hit me—it entered my heart. In stillness, I could grasp it.

The Gift of Presence: Forced by the Body, Resisted by the Mind

When my mind moves, my body moves. Always thinking, always moving forward. Never reaching the top that my mind chose to reach. An endless race to the top—that doesn’t exist.

My body forced me to be still and present, and there I entered it:

Joy. Love. Beauty.

Grandiose in a way I could never have imagined.

I received a gift far beyond the “good life” I once envisioned. In the present moment, if I always aim for more, I will spend my life chasing it. And that will be my experience of life until I die. But if I stop—stop aiming for more—I will be gifted with the profound gratitude for what is.

One sees clearly only with the heart. What is essential is invisible to the eye.

Today, the sunset — the joy, beauty, and gratitude — is not just at that little mountain hill. It’s in the way I watch my steps when I enter a restaurant. It’s right there when I hold onto the door. It’s present when I make sure I’m safe.

The sunset lies in every step I take.

I will never forget what I received that day in the mountains of San Pablo Etla. Even if I were meant to never see again, what I gained in that moment cannot be seen with the eyes, nor understood by the mind.

It can only be realized with the heart.