Blogging · cynful · SL Survival Guide

38. How to… shine some light…

Sorry guys. I can’t help it. This song has been stuck in my head since I saw the graphic on this t-shirt dress last night so that’s that.

I’ve had a migraine since Friday and at one point was certain that I was going to die. At another, I was certain I would do some very questionable things for some caffeine and just a tiny bit of relief. Anyway, I’m back now, feeling much better than I did yesterday, and a helluva lot better than I did the day before that. Also, it’s March, and in my migraine induced stupor surrounding my Flickr post the other day, I didn’t take the opportunity to do my usual March spam.

It’s Cerebral Palsy Awareness month, y’all. You’re going to see me wearing a lot of green, and if you follow me on Facebook, you’re probably going to see a lot of awareness spam about cerebral palsy. First and foremost because it affects me and if you know me well enough to know the other causes I get behind, you’ll know this one is the biggest for me for obvious reasons. If you don’t know me, you just learned something new. Congrats, because we should all work to learn something new every day, right? Otherwise, what’s the point?

Annnyway, before I was so rudely interrupted by my own shiny syndrome, we were talking about something, yeah? It’s Cerebral Palsy Awareness month. For those of you who don’t know:

Cerebral Palsy is a disability that affects muscle development, movement, and posture. It’s usually caused by a brain injury before, during, or shortly after birth. Here’s some general statistics:

* Cerebral palsy (CP) is one of the most common disabilities found in children worldwide. CP is often characterized as a children’s disease because the inital injury occurs in childhood, but affects are life-long.


* There are several different types of CP and a wide range of symptoms. Classification of type depends on both the parts of the body that are affected as well as the motor skills affected.

Motor Types:


* Spastic: from damage to motor cortex. Most common type. Muscles are stiff/tight.
* Dyskinetic: from basal ganglia damage. Involuntary muscle movements.
* Ataxic: from damage to cerebellum. Shaky movements, balance issues, etc.
* Mixed: combination damage

Parts of the Body:


* Quadriplegia/bilateral: All four limbs are affected. Facial muscles may also be affected.
* Diplegia/bilateral: Both legs are affected.
* Hemiplegia/Unilateral: One side of the body is affected (one leg and one arm)


* People with CP often suffer other impairments as a result.


– 1 in 3 is unable to walk
– 1 in 4 is unable to talk
– 3 in 4 experience pain
– 1 in 4 has epilepsy
– 1 in 4 has a behavior disorder
– 1 in 2 has an intellectual impairment
– 1 in 10 has a severe vision impairment
– 1 in 4 has bladder control problems
– 1 in 5 has a sleep disorder
– 1 in 5 has saliva control problems

Each person with Cerebral Palsy is unique. My type is called spastic quadriplegia. I am able to walk for now because of the unique way in which my brain decided to send messages to my muscles as they grew. Muscle tightening over the years has caused the bones in my legs to shift and turn. It’s likely I will end up in a chair sooner or later, but for now I enjoy my ability to weeble-wobble around as I please. On bad pain days, I use crutches like the ones featured in this post. I am one of the 75% who experiences chronic pain. I actually think this statistic is a little low as I’ve never met a person with CP who doesn’t live with some kind of pain, but I digress. I am one of the 1 in 4 with epilepsy and a behavior disorder (many people with CP are on the spectrum in some way). I am one of the 1 in 10 with a severe vision impairment. I will never be able to drive a car. Corrective surgery does not help this. Actually, in my case, I’ve had probably a dozen surgeries or more in my lifetime, all with the best intentions meant to prolong my movement or relieve a bone issue caused by the muscle spasticity, and not a single one of them has actually maintained a long-term benefit. Several have actually made things worse. After surgeries on my legs, I must re-learn how to walk… and yes, I mean that exactly as it sounds.

I have friends who have a diagnosis type the same as mine who are completely different. Some are wheelchair bound or don’t speak. How it affects everyone is different, but I suppose that’s also the most frustrating part, because you may see more information this month about it. Even the info-graphic I got the above statistics from speaks about it as a children’s disease… but children with CP grow up to be adults with CP with a wide range of issues. Some doctors will say that CP is not progressive because it results from a TBI, but I am here to tell you that for a person whose motor and muscle development is impaired, things do change. They do get worse. Things get worse as you grow, as you gain and lose weight, as you try to remain active, etc. Yet there are so very few doctors who actively look at treating CP in adults. I have to see a pediatric specialist, and I will be 33 in October. I know many others with CP who face the same issue. Doctors in general are always a gamble – many seem to know very little about the diagnosis. It’s actually ridiculous. This is one of the reasons why I try to talk about it often… because those of us who can need to give it a voice and advocate.

I advocate, and I have my bad days for sure. There are days when I don’t want to get out of bed, but I also don’t want to let this beat me. I know that I need my rest sometimes, but I don’t want this to beat me. I’ve always been a bit stubborn about it. I played basketball and softball through school against my doc’s wishes. When I was 17, a friend’s father high up in the Marine Corps tried to help me find a loophole so that I could get in. I wanted to go to OCS. As you can probably guess, we failed. When I let this – any part of it – get the better of me for even a second, I’m letting it win, and I can’t do that. I can’t use it as an excuse for my behavior, I can’t use it as an excuse to lay down and simply give up. Instead, I want my life to mean something, and I want to do amazing things in spite of it, and I want to show people that this thing that is a part of us is just that. It doesn’t define us.

Happy Cerebral Palsy Awareness Month, y’all.

Credits:

[Shape][Divine Transformations]Nova Shape **custom**
[Head][LeLUTKA]Simone v. 3.4
[Body][Belleza]Freya 5.0
[Hair][Magika]Seven Days
[Skin][The Skinnery]Paris (Toffee)
[Lips][Izzie’s]Matte Love Lipstick
[Dress][Cynful @ FaMESHed]T-shirt Dress

[Location][Authors Point]

[Tune][The Beatles – Let it Be]

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