Saturday, January 26, 2013

Because life is serious sometimes.

I wrote this a while back about having a clubfoot. Thought I might share it in case there are any other clubbies out there curious to know my story. If you have a clubfoot, I am part of a private group on Facebook that is specifically for adults/teens with clubfoot. Let me know, and I'll add you to the group. :) 

I was born with a severe left club foot in South Carolina in 1988. I won't get too technical about procedures unless someone is curious because it takes a long time and then I forget what order they were in, etc.

I currently receive treatment from the Medical University of South Carolina. I have accelerated osteoarthritis and degenerative bone joint disease resultant from a congenital birth defect known as 'club foot.' What that translates into is chronic pain, limited function, and a chip on my shoulder the size of Greenland (since I'm being honest.)

Being a 24-year old with a former club foot is like going to a fireworks show and closing your eyes. You can still hear all the excitement in the world around you: the people, the distinct pop of fireworks, but you pretty much miss the point of the whole experience.  Sure, someone could explain fireworks to you, but it’s not the same.

Life with a clubfoot is not the same as other people’s lives. We’re not with the “normal” people, and we don’t quite fit in with disabled people either because our problems aren’t obvious when you look at us. (See: chip on the shoulder the size of Greenland)

I used to wish all of my physical problems away. I used to torture myself watching other people dance in their costumes. I've made excuses for my entire life about why I don't go and do certain things like camping trips, shopping excursions, a walk down the beach. As a child, I never told anyone what was wrong with me. Looking back, I guess I didn't figure out that having a disability wasn't my fault. So I feigned disinterest, made excuses, and wore ugly shoes to my great dissatisfaction.

I think I was about 20 when I figured out I could be happy and be in pain at the same time. Which is sort of ridiculous, but, you know. That’s life! I've had more reconstructive surgeries than I care to count, which has helped me, but are temporary fixes. All of us who have had clubfeet at some point come to the realization that someday soon we may not be able to walk or care for ourselves. It is a constant thought, but very real and pretty scary.

However, I can still walk. To anyone who has experienced life in a wheelchair or crutches, this is a tremendous gift. The scars and the physical deformity affected me mostly as a child when I was afraid what other people would think. Now I wear what I please and paint my toenails every color under the sun. I won’t lie and say I am not jealous of women who wear pretty heels, but I am happy to not be ashamed about it anymore. Besides, it’s usually pretty amusing to have shoe sales people stare down quickly and make sure I wasn’t mistaken about having a size 5 left foot and a size 8.5 right foot.

To tell you the truth, if I had a wish, I would probably still wish to have normal legs. However, I am accepting of what has happened to me. I am working on finishing my Bachelor's degree in Social Work. Having a disability that is not easily seen has made me an empathetic person. Without having a club foot, I seriously doubt I would be able to do what I do now. A great thing about having a clubfoot is you are able to look past people’s outward appearances to a certain degree because you understand that not all problems are easily seen. 

I think for anyone else out there suffering, my advice is to accept your club foot because, let's face it, it's not going anywhere. Explore options with different doctors, and try not to push yourself physically when it hurts because it only makes a mess. I don't want to say I've tried everything, but I feel like I have. Orthotics, surgery, tens units, creams made especially for me, canes, wheelchairs, shoe inserts, hostility, pain killers, therapy, and ablations for nerve endings. I am the bane of my insurance company's existence. I am not a doctor, but I know what I'm talking about. Stick with what works for you, and be respectful of your clubfoot.

Oh, one more bit of advice: if you get tired of explaining about what a clubfoot is, try making up an outrageous story—like you were trying to lasso Nessie and slipped. It kind of breaks the ice and makes people a little more comfortable when they realize people who have a disability have a sense of humor, too. It’s then easier to explain about your disability and that you’re still a person capable of making a joke.

If anyone has any questions, or needs someone to listen to your dealings with your club feet, let me know. I am always curious about how others cope or any options I haven’t explored myself.

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