Charcot Marie tooth & A Vintage Fashion Blogger

When Lainie asked me to share my story about living with CMT (Charcot-Marie-Tooth disease), I jumped at the chance. Then I realized that I have never shared my journey of living with CMT. I struggled with this post for weeks because of that reason and decided that I will share with you all what I can.

I will start with the year 1984 when two huge events happened that would change my life forever. My mother, who began the journey to find out why I kept running instead of walking, would pass away in January 1984. A month later my father continued the search for the right doctors and I was officially diagnosed with Charcot-Marie-Tooth Disease Type 1 in February 1984.

Charcot Marie tooth & A Vintage Fashion Blogger

I walked completely on my toes until I was thirteen and it was then that I had my first corrective surgery. Thanks to the MDA Association, I was able to have this surgery which led me to relearn how to walk and then to wear braces (AFO’s). I took all these changes in stride but I remember in high school I would cover up my braces with lots of long socks. It was the beginning of many years of covering up what I had and in turn, who I really was. There was talk about my disability in my home but the word disabled was never used. My family did the best they could. When I entered college, I decided I really just wanted to be a “normal” girl so I wore heavy boots and stopped wearing my braces. Bad move on my part because a few years later I needed more corrective surgery. By my mid-twenties, I wore my braces all the time except I stopped wearing skirts and dresses altogether.

Fast forward through my college years and my years as a teacher to a few years into motherhood. It was a few months after the birth of my third child when I started to notice that I had stopped being creative. I was always a creative person. I naturally gravitated to writing and film. My grandmother introduced me to “Gone with the Wind” (1939) and after that my love for Old Hollywood and vintage just kept growing. But in the midst of the early days of motherhood I noticed that I wasn’t giving myself a chance to really delve into my passions, not in the way a creative person needs to. Granted I was a tired mom of three babies but I knew that I couldn’t sacrifice my creativity. I think anyone who is creative on any level needs to create otherwise it just leads to unhappiness and discontentment.

Charcot Marie tooth & A Vintage Fashion Blogger

That’s when I decided to do a pinup shoot. Sounds odd but the idea came at a time in my life when I needed to celebrate my femininity apart from motherhood. I dolled up in forties clothes and hair and I found a smile on my face that I hadn’t seen for a while. I love motherhood and my children are my biggest dream come true but I needed to figure out who Daffny was now that she was a mother. That shoot led me to start my own blog where I delved into the world of vintage fashion and Old Hollywood. 

Charcot Marie tooth & A Vintage Fashion Blogger

I have been blogging for over eight years now and it is because of my blog, A Vintage Nerd,  that I am able to explore who I am. In doing so, I realized that for so many years I was hiding a huge part of who I am.  One year into blogging is when I decided to wear a dress and I haven’t stopped since. Looking back on it now, I have realized that I spent too much time hiding my disability from others. I think it was a mixture of being tired of being stared at, people not understanding, my inability to explain what I had, and my own personal lack of full acceptance.

14 Comments

  1. I love that you rock your “legs” as we call them in my house ♥️! Enjoyed reading your story! Thank you for sharing a piece of you!

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