I Wanna Hold Your Hand

That's what all the boys say. But some of them have my best interests at heart.

OT1

The handsome guy in the photo with me is Gary Robinson, a Certified Hand Therapist at Vanderbilt University Medical Center's Orthopaedic Hand Clinic. We've been spending a lot of time together because he's trying to prevent me from losing the use of my only good hand. What started as pain in my right thumb and wrist presumed to have been caused by an injury has become much more complicated to treat.

No doubt you've noticed in all of my photos that I can't hold my hands "normally". This is due to my Cerebral Palsy and I've never really given it much thought except when circumstances brought it back to my attention. So what if I have a grasping reflex? Aside from having to grip my mouse with excessive force while I paint for hours and the total inability to shape the perfect meatball it just isn't a big deal. I can't do up tiny buttons or open childproof caps, either. You learn to work around these minor annoyances - until your workarounds are becoming painful as half a century of incorrect movement starts to take it's toll. Now the workarounds need workarounds, too.

That's when you end up holding hands with a nice guy who whispers sweet nothings like "intercarpal joint hypomobility, median nerve entrapment, and reduced transverse arch". When he tells you you have a lot of tone it's not a positive comment about your workout results. Instead it means that my Cerebral Palsy makes it very difficult for me to relax the base of my thumb so that it's always pulling inward towards the rest of my palm. Lots pf people with CP benefit from Botox injections to open up their hands or uncurl their feet. But I'm "high functioning" (stop laughing) and Botox would be more of a hindrance than a help.

There are no easy answers; no tried-and-true procedures to fix the problem. Luckily, Gary is very motivated to help me. He views it as a challenge outside of what he normally has to deal with.

OT2

He made me a custom splint I have to wear at night. Finding something I can wear during the day that will keep the base of my thumb in a beneficial position is proving to be more difficult. For my part I've offered up a cycling glove to serve as a base for attaching "ideas".

OT3

If he can figure out a configuration that works I''ll be entertaining suggestions from all of you about what I should do to make it look attractive. Otherwise, Gary doesn't even think I'll wear it because it's won't look cool.

He's wrong, of course. I can make anything look cool.

A Month To Be Passionate About

How cliche would it be to go all Cupidy-Bonbon-and-Red-Rosey this time of year?

So cliche that I'm not going to do it. Well, not literally, anyway. Lots of my fellow bloggers are doing a fine job with traditional Valentine's Day iconography so I'm going to focus on the most intense, undistilled facet of love.

I want to talk about passion. Passion is more compulsion than emotion. It focuses our attention on how something or someone makes us feel and compels us to act. It pushes any rational thought out of our minds and replaces it with a never-ending quest for fulfillment of that compulsion. Addiction is passion taken to the extreme. Extremes are usually ultimately negative and rarely a good thing.

But passion is always a good thing. It's about living instead of merely existing. So this month I'm going to share some of my passions with you, and some of them may raise an eyebrow or two.

For example, take a look at this outfit.

workout1

oinkpants

If any of you find this attractive please turn in your "Fashionista" card immediately. It's a hideous outfit; $8 velour hoodie from Old Navy, $3 Victoria's Secret sweatpants via Music City Thrift, white wool knee socks, and 2007 model Ecco Mary Janes via EBay. The only redeeming article of clothing here is the black tee with Mr Spashionista's logo on it - and it's only appropriate outside of this application when worn underneath a jacket. For the longest time I thought the lettering across the back of the sweats read, "Oink" instead of "Pink". I'm not making that up.

But I'm passionate about this outfit and wouldn't part with it for the world. This is my workout wear for the winter months. Because I am a 51 year old woman with CP being as fit as possible is important to me. Several years ago I had a leg injury that required I go through physical therapy. While I was there I learned how to stretch and exercise and began getting stronger. Now I exercise every day. I also walk around my back yard with my two dogs as often as I can. That's the reason I'm so particular about my footwear.  It's very difficult for me to walk outdoors, even with my crutches, and I've found these shoes have the best fit for that specific activity. However, they don't work well for indoor exercises or even the stationary peddler I've been using since Christmas so I usually lose them before I  work out indoors.

None of this will cancel out the fact that I have Cerebral Palsy, but it does make me healthier in other ways, and I am healthy compared to a large number of my peers. If I have to forego my workout for a day I find my body craves it. Who knew that it would take me almost a half century to become passionate about exercise?

By the way, If you think this getup is bad I actually have a Muppet-pelt parka I add if it's hovering around freezing when I go for my walk. I'm not going to show you that gem - just think Snufflecripagus.

Your Mama

On this Mother's Day I'm finding it difficult to push the thought that the older I get the more I look like my mother out of my head. A shorter, rounder version to be sure, and one with my father's skin and eye color, but the facial features are undeniably hers.

Big shoes to fill as my mother was a model in her younger days with an 18 inch waist, smaller boobs, and perfectly arched eyebrows. It seems as if I was born fat. I certainly always had big upper arms and my chest developed early and rapidly surpassed hers. It always disappointed her and I was put on many diets as a child. No matter how much weight I lost I was always going to have my great grandmother on my father's side's body type. When I was in my mid twenties I decided that I was going to have that 18 inch waist if it killed me. I consumed only 250 calories a day and dieted and exercised my way down to 92 pounds. I wore a child's size 14 and was finally able to fit into my mother's black straight legged jeans.

My cup size never changed, though. I still wore a D cup. I looked like a popsicle stick with two cotton balls glued to it. More importantly, I had done all of it for the wrong reasons. I wanted my mother's approval - which I did not get. "Just ten more pounds and you should be there." It was then that I realized I would never be "there" and began eating normally again.

The fault for this little fiasco rests squarely on my shoulders and no one else's. My mother wasn't, and isn't, a monster.  She's a smart woman who is a talented musician and artist and went from riches to rags to self-made woman. She just wants things to be exactly as she thinks they should be  - even if that's not possible. It is this one personality trait that finally made it necessary for me to establish some boundaries that she finds unacceptable. I'm sorry things have ended up this way, but it's her choice at this point.

So, when I look in the mirror, as I did yesterday on my 51st birthday, I hope that I can retain all of the positive qualities that are my mother and let go of all the ones that don't work so well. But I think, perhaps, this is the struggle that every child goes through.

Thanks for the great cheekbones, Ma, and for every good thing you ever did for me. And Happy Birthday to me!

Me at 51

I promise the next post will be much less maudlin and much more Spashionista-like.

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".