By Katerina B.

“Can you please take your shoes and socks off?” asked the specialist. He wanted to see me walk down the hallway.

It was a Tuesday morning back in the spring of 2018. I was seventeen, about to graduate from high school, and looking towards the next chapter, college. But there was a problem. I started experiencing nerve pain in my feet that quickly progressed, causing my body to have problems with standing or walking. Also, the fatigue I tried to ignore for years worsened. After weeks of waiting, I received a referral to a podiatrist. I hoped that there was an easy fix to my pain. However, that was not the case.

After seeing me walk, strength tests followed. I was surprised when he mentioned there was noticeable weakness in my feet and ankles. I grew up as a dancer and had continued through the last few months of pain. I also had recently begun living my childhood dream of teaching ballet to young kids. In addition, I continued to take classes in various styles of dance. And while balancing schoolwork. How could there be a weakness in my feet? 

My question only spiraled into more after the doctor finished writing his notes. He went on to tell me the three words I never imagined to be true in my life. 

“You have CMT.”

I only sat there shocked as this shattering diagnosis began to stir in tears, discouragement, and doubts. There had to be some mistake. For the previous three years, I believed this neuromuscular disease only affected some of my family. I had to be fine, right?

Maybe the doctor only diagnosed me with CMT because of the family medical history. I’m sure I would have recognized the signs before since I watched this progressive disease affect others in my family. But, we later found out the diagnosis was correct. I did have CMT, and my life would change. 

I knew the journey was going to be challenging. My future would be filled with struggles as I learned to adapt and live with chronic pain and a physical disability. And my dreams of continuing in dance and even pursuing a career after college seemed to disappear. 

The Struggles Of Constant Pain

My pain progressed overnight and felt like a continuous nightmare. As the spring turned into summer, the warmth outside turned my nerve pain into a burning sensation. When it was too cold, I noticed numbness and ache. The fatigue felt just as horrible, and my days consisted of tears and trying to hold everything together enough to function. Every time I thought I had reached the amount of pain I could handle, a few months later, it was much worse. 

I started wearing AFOs the following year. When I walked on my college campus, I could barely drive home from the loss of strength in my muscles. Each step resulted in more fatigue. I mentioned this to some specialists during a clinical appointment, and they recommended leg braces. I thought these orthotics would help me feel better. And I could continue to go about my schedule without needing as many breaks. That’s not exactly what happened. I realized over time the thick plastic braces brought on blisters and joint pain. The worst part was reaching the point of having to wear them everywhere. Thankfully now, I have different leg braces that are better. 

As months turned into years, I realized that my chronic pain was not the only battle I would face. The depression and anxiety grew worse as I didn’t know how to handle the physical pain and stress. So, I endured months of sadness and fear of the future. I also struggled with feeling self-conscious about my disability. I was afraid of judgment from others if they knew I wore leg braces. I had struggled with this for years, and until more recently, only family and close friends knew about my AFOs. 

Katerina’s

Blessings From The Pain

When the pain progressed, my heart only longed for more relief and hope that everything would be okay. So, to help with coping, I began writing more frequently in my journals. Most of the words came from discouragement, tears, and anger. 

But, over time, I started recognizing the blessings of living in constant pain. My dancing meant even more because of the messages in the music. Many songs were about hope in the darkness, pain, and suffering. This led to a calling on my heart to create pieces of those messages. I started believing that God could use my story to make a difference in others suffering from an illness, pain, or disability. And I was right. I went past what others may have seen as impossible because of how much my CMT affects me. 

At 21, I started a blog. I began sharing my story through short blog posts and invited others to be guest writers. This led to more opportunities to speak publicly at events and recently with two different podcasts. One is the CMT 4 Me podcast (https://www.podpage.com/cmt4me/). Though I continue to struggle with constant pain, I found my voice. I found my purpose by sharing my pain. 

Another blessing would be I’m about to graduate from college, something I didn’t think would be possible. I went from walking to every class to using a wheelchair most days. While that adjustment took some time, I have been encouraged by the kindness of friends, professors, and staff. 

Most of all, I am on the path of pursuing my dream career. In the future, I want to be a Child Life Specialist and help children in a hospital due to an illness or chronic pain. Some of this would be through therapeutic play, advocating their needs, and bringing joy to them and their families.  I would have never pictured a more meaningful career if it wasn’t for my CMT. 

Furthermore, I get to see those broken pieces of pain, tears, and discouragement put back together into something beautiful. If it wasn’t for the CMT, I most likely would not have the courage to pursue these passions further. And I would not be encouraging those living with chronic pain, disability, or limitations. 

Encouragement 

Friend, the pain you are experiencing is not the end of your story. You have more to offer than you may realize. Your passions and dreams may look different. And that’s okay. Stay strong, and keep moving forward. You never know how your story can be used to bless others. 

Bio: Katerina is a young adult living in Southern California. She will be graduating college soon with a BA in psychology. Some of her passions include dance, writing, and volunteering with organizations such as the CMTA and Diamonds. In her spare time, Katerina enjoys meeting friends for ice cream and spending time with family. 

You can find Katerina on her website: beautyinthepainblog.com

Or follow her on Instagram: @beautyinthepainblog