- So, I wonder if it speaks any to my character that, while trying to find a decent and recent picture of myself for this introduction, my phone was full of pictures like these?*
I’m Katerina. Ironically I was named after the German ice skater Katarina Witt… The farthest I ever walked on my own, without any type of support, was 12 little toddler steps. I was probably one of the toddliest toddlers you could ever meet.
Most parents assume their kids are special and that they’re the best… My parents weren’t allowed any doubt that I was special. So special in fact that it took several doctors two and a half years to figure out what was “wrong” with me.
I was three years old when a doctor was finally able to explain to my mom that, while I didn’t have the worst condition, things wouldn’t be easy, and he officially diagnosed me with the neuropathy known as Charcot-Marie-Tooth.
Another post will have a more in-depth telling of my CMT story, but the short story is this: I was a stubborn kid who didn’t want to be told what I couldn’t do and I have parents who still encourage me to do what I want. It took falling down and blacking out for me to agree to use a wheelchair (I was ten), but I only used it for short distances. I stopped being able to walk when I was about 15 and stopped being able to stand, even with help, by the time I was 20. I have some vocal chord paresis, so sometimes I kind of sound like a 12-year-old kid. But I also paint, I write, I’ve graduated a few times, I travel, and I try to help other people.
You’re going to see a lot about CMT and related things in my blog because I want to connect with others who have been through similar situations or who might be needing some encouragement to keep on truckin’. I do promise it won’t be all CMT all the time. We all have lives and our problems (whatever they are) are only small portions of them.
Other things you’ll be seeing here include, but are not limited to:
- Some art stuff (see below)
- Motivational things
- Stories about my trips
- Practical advice/ideas about handling day-to-day tasks (see my next post about my dream bra being a reality)
- Beautiful things
This blog exists because I went looking for one like it. There are so many wonderful fashion and beauty blogs out there, but I really wanted one from the perspective of the disabled woman (or differently abled, whatever floats your boat).** When Sundance premiered Push Girls it was amazing, because I could relate to their enthusiasm for life while also dealing with some of the unnecessary complexities that come with being physically challenged. But what finally encouraged me to get things going was this woman Jillian Mercado.
To close this post I want to mention Andrew Wyeth’s painting “Christina’s World”. Neurologists recently diagnosed Christina, the woman crawling in the painting, with Charcot-Marie-Tooth disease. Her spirit is what inspired Wyeth and what draws me to her story. She was much more stubborn, she refused to use a wheelchair at all during her life.
“Christina’s World” by Andrew Wyeth
“The challenge to me was to do justice to her extraordinary conquest of a life which most people would consider hopeless,” he wrote. “If in some small way I have been able in paint to make the viewer sense that her world may be limited physically but by no means spiritually, then I have achieved what I set out to do.” – (Reposted from 15 Things You Might Not Know About ‘Christina’s World’)
Thanks for checking out my blog! Hope you’ll keep coming back for more. 🙂
Yeah, I stuck a couple of footnotes down here.
*As you can see, I can’t take a selfie without wanting to share the moment. The first one is a silly moment on the way to seeing my new doctor whose life’s work revolves around understanding Charcot-Marie-Tooth Disease, the following two are of close moments spent with my niece, and the one on the bottom right is of me trying to share part of my view while visiting The Spiral Jetty in Utah.
**I’ve been known to call myself gimpy or cripple or handicapable.