World Cerebral Palsy Day

Today, September 4th, is World Cerebral Palsy Day. According to the World CP Day website, "It will change the lives of people with cerebral palsy (CP).  The theme for this unique day is 'Change my world in 1 minute'. There are 17 million people around the world with cerebral palsy.  A further 350 million people are closely connected to a child or adult with CP. This website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. "The website also gives people with CP the opportunity to make these ideas a reality...People with CP, their family and friends can visit this website and suggest ways to improve the quality of life of people with CP. Each idea is posted on the website as text or video and will only take one minute to read or watch. During September, everyone is encouraged to go online, review the ideas and vote for the concepts that will have the greatest impact on people’s lives.

"At the end of September, the World Cerebral Palsy Day Panel will select the best ideas, solutions and inventions for people with cerebral palsy."

You know, I wish I had an astounding, earth-shattering, life changing minute of an idea that would fit the bill here. But I don't. All I have to offer is the life I live every day and the two blogs I maintain (this one and my digital art showcase Gallery Celesta). I've been a student, a disabled advocate,  a journalist, an editor, an astrologer, a prognosticator, a cook, a musician, a podcaster, a web designer, an artist, a wife, and the patron saint of all lost and neglected dogs. Despite my best efforts I can't do things at anywhere near a "normal" pace, but I strive to accomplish as much as I can. Not for the sake of others, but in my own attempts to be the YOLO (You Only Live Once) queen. I've made countless mistakes, partied way too hard, pushed my luck, had many lapses in judgement, and mishandled many situations - but I've learned from those mistakes and hopefully become a better, wiser person as a result.

During the course of my 50+ years on planet Earth I have seen attitudes about Cerebral Palsy change, mostly for the better. Political Correctness has led to hushed whispers instead of direct questions and ridiculous labels that are designed to be inoffensively banal. I am more offended by averted eyes and hesitant behavior than by questions and sincere offers of assistance. Those of us with CP have to come to terms with the fact that other people can't accept us if we don't first accept ourselves. Far too many of us feel they are defective, ashamed, not good enough to be a part of the world; or bitter, angry, hostile and resentful towards the world. It's neither the world's fault nor yours that you are the way you are. It is your responsibility to handle what you've been dealt as best you can. If you think highly of yourself than others who agree will come into your life and those that don't will fall back. Most importantly, if you love yourself it won't matter; life is just easier and happier.

I suppose that's my World Cerebral Palsy Day idea. Love yourself more, be proud of who you are, and strive to be happier and wiser with each passing day. This is where true, lasting beauty begins - from the inside out.

Oh, I almost forgot, always look fabulous. Try it; you'll like it!

You're Amazing. Show It!

I see you, my peers. I read your blogs, your comments, your emails. I know from my own experience how you suffer at the nervous stares and cruel words uttered by others. Worse yet, I know how you agonize over not being "normal", over being labeled and judged and dismissed by the masses.

You're worried about the same thing everybody else is worried about. Everybody get labeled and judged; everybody. Everybody wants to be better, prettier, smarter, thinner, fill-in-the-blank.

I wish that I could make people instantly look past your handicap and see who you are inside. But, since that isn't ever going to happen, I want to wave my magic wand and help you look past your own handicap long enough to realize what an amazing person you are. If you have CP you are coping with challenging circumstances on a daily basis that no one but your peers can appreciate. And that's really the point. Nobody can tell anything about who you are by just looking at you. They can't know what your favorite food is, or how much you love your dog, or how scared you are during thunderstorms. They have no idea how hard it is for you to stop moving, or unclench your hand, or get your facial tics under control.

You live with the constant reminder of your limitations everyday yet you expect others to ignore them the instant they lay eyes on you. It's just not fair to expect that much from others. You will  encounter countless disappointment if you do.

Instead, think of yourself in these terms.  "Although we all know not to judge a book by it’s cover, most will have a quick glance at the cover to see if it’s a book they may be interested in reading." I'd love to take credit for this sage phrase but it is, in fact, a comment left on my About page by astimegoesbuy (you really should check out her blog. She has impeccable taste).  More importantly, she's absolutely right. You are an amazing book, a page-turner, a best-seller. Why not work on your cover and see how many people want to have a read?

Do Your Best - Results May Vary

This is only my sixth post and already I have met some wonderful ladies through their comments on SR. I think that warrants a little more personal information from me. An addendum to The Palsy.

I live in a little house just outside of Nashville, Tn with my husband and my two dogs. I can't drive so I spend the majority of my time at home. I'm not from Tennessee but I've come to appreciate the scenery and the peace and quiet that comes with living in a rural area. I'm not exactly the outdoorsy type. Scratch that, I'm not even close to the outdoorsy type. My idea of camping is only one bathroom and no computer. Two years ago this week our home was nearly destroyed by the 2010 flood aftermath aka the Army Corps of Engineers' genius plan. It has taken us this long to rebuild it with no shortage of amazing people stepping up to help - some of them from as far away as Liverpool, UK. We're not quite done with it but our involuntary remodel has resulted in a better, more accessible house than we started with.

My dogs have a big fenced-in yard to run around in and I walk with them for exercise. As I get older I've come to understand that any mobility I have is a privilege and it's use it or lose it time.  Four years ago I had to have neurosurgery to repair a cervical vertebra that had literally turned onto it's side and  left my right arm completely numb. It was likely the result of my efforts to become the world best Spastic Chef. Whatever; it was surgery or inevitable paralysis. As I've approached and passed the half century mark on this planet I've also had to work through a severely pulled hamstring, sciatica, and carpal tunnel - in my palsy hand of all places!

Poor me. Boo hoo. Nobody cares about any of that when they meet me. It's up to me to do the best I can to look as good as I can muster at any given moment so I can engage the people I'm interacting with. After my neck surgery I wore a scarf around my neck brace. It didn't occlude the brace, it just showed I cared enough to wrap it in something beautiful. Likewise until my neck healed I couldn't wear pants that had buttons or zippers so I found the prettiest skirts or pull-on pants I could and made sure the elastic didn't bunch and was covered up. It was the best I could do.

There are days when I don't feel like wearing much makeup or fussing over my clothes (yes, really) but I've set things up in such a way that even if I'm in a rush I know how to make myself look presentable. I'm sure all of you have seem the fashion makeover shows on TV. Don't you find it odd that they never makeover a Palsy? That's because their rules only take into account bodies that move correctly with clothes that fall over lines that are not twisted by spasticity or caught in the spokes of a wheelchair. Their bags won't sit in the crook of an elbow encased in a crutch, their stilettos are the ideal setup for a Spaz pratfall in 0.02 seconds.

So what are we, chopped liver?

The rules are different for us. I've figured out a few of them and I'll be sharing them here. It is my sincerest wish that all of you reading this won't hesitate to share your particular challenges and any workarounds you may have found.  It's high time we showed the world what we're made of!

The Palsy

This could take a while. It won't be pretty. It won't be politically correct, either.

Cerebral Palsy is one of the most difficult disabilities to explain, categorize, or physically overcome by just talking about it. There are several types of CP and each runs the gamut in terms of severity. In a nutshell, what you need to know is that we're talking about a neurological condition caused by brain damage that results in limitations and/or spasticity in motor skills. It can also affect sight, speech and intellect. Although it's a condition, not a disease, it can exacerbate other issues as you age. If you really want to know more the Mayo Clinic website has a good overview.

To be honest with you I only got a tap from the Palsy Faerie's Wand O' Spaz. My intellect is intact (yup, there's the setup. Insert joke here). and I only have a slight speech impediment. My vision is so poor without my glasses I would need a guide dog. Movement is where it gets interesting. I can walk but my gait is very unsteady. Think two year old with a drinking problem.

Wobble hobble

As a result of my superior sense of equilibrium I hobble around the house, use crutches when I'm out in my yard, and a wheelchair to maneuver the rest of the world. My feet also turn inward involuntarily - as opposed to with my consent.

Pigeon Toed

I have trouble with what they call "fine motor skills". Things like fastening buttons, writing, opening childproof packages. My left hand is much worse than my right. In fact, it's practically useless and it usually sits in "Cher" position when I'm stumbling through the house.

You get the idea

Then there are the facial ticks. I look like I'm lip-synching a kung-fu movie.

Looks about right

The cherry on this sundae is the choreoathetosis, which is the involuntary random twisting and muscle contractions that make me twitch. Put it all together and you get...moi.

Moi

This is the package I have to wrap in such a way that it distracts from the distraction that is my disability. Not an easy trick. But I am so lucky that I can put my best foot forward...er, best face forward...best cleavage forward? What I want to convey clearly to you, esteemed Spashionistas, is this. When I leave my house and interact with other people I am doing so in the name of all of those with CP who can't speak for themselves. Whether I like it or not I am a representation of my disability first and foremost. If I can get people to see past the Palsy with me then they are more likely to do so with the next disabled person they meet. I can also get them to admire my overwhelming fabulousness and join me on my quest to look as good on the outside as we know we are on the inside.

And to those that look away, that look past me, that see this as a joke? In the words of Jeannie Bueller, "Screw 'em".