Blog SMA Awareness Updates

Embracing Change: A Journey of Acceptance and Resilience

I have often defined myself by my disability and my rare disease. When you have a disability that is so obvious, it’s not exactly something you can hide. It has taken me many years to feel comfortable in my body and truly accept who I am. Now, I finally love the body that I have.

Living with spinal muscular atrophy (SMA) means constant changes and challenges, and once again, the need to adapt has arisen. I am facing a new surgery—one that took me a long time to accept and feel comfortable with. Just when I had reached a point of acceptance, I got sick, and the surgery had to be postponed. Now, I’m struggling to wrap my head around everything, feeling like I’m losing myself in the process.

The decision to undergo this surgery was not easy. It required me to dig deep and find confidence in my choice, to believe in the positive outcomes it would bring. But as human beings, we are often haunted by our fears and insecurities, and I am no exception. The doubts and negative thoughts are hard to shake off.

I worry that I won’t feel beautiful anymore. This surgery feels like it could change not just my physical appearance but also my sense of self. However, I remind myself of the many good things that will come from this procedure. There will be improvements and benefits that will enhance my quality of life, and I need to focus on those positives.

Yet, being human, I can’t help but grapple with the negatives and the fears. It’s a tumultuous emotional journey, one that requires strength and resilience. I am trying to find a balance between acknowledging my fears and embracing the hopeful possibilities that lie ahead.

This blog post is my way of being open about my struggles and sharing my journey with you. It’s a reminder to myself and to others that it’s okay to have fears and doubts. It’s okay to feel vulnerable. But it’s also important to hold on to the hope and the good things that are coming our way.

As I navigate this challenging time, I hope to find peace and confidence in my decisions. I hope to continue loving my body and embracing the changes that come with it. This is just another chapter in my story—a story of resilience, acceptance, and the unyielding spirit to keep moving forward.

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