Sunday, January 30, 2011

My Life With Cerebral Palsy - Introduction

I've brought up the subject of my cerebral palsy less than a handful of times on this blog and perhaps as many times in three years of writing on Livejournal before that. It's not that I tried to hide it or was ashamed of it or anything of the sort, rather I just rarely felt the need to bring it up. This is true both in my writing and in my day-to-day life. 99% of the time it's just not relevant to anything and I see no reason to say a word about it unless someone asks. That said, here we are, I feel compelled to write about it, and this is my little corner of the internet, so here goes nothing.

Cerebral Palsy (abbreviated hereafter as "CP.") is not a disease, it is a musculoskeletal condition generally caused by brain injury of the fetus before, during or after birth. In my case it was a result of being born premature and weighing less than 4 pounds at birth. My lungs were underdeveloped , causing a lack of oxygen to my brain, brain damage, and wa lah, cerebral palsy. Yes folks, I technically have "brain damage" and yet I'm not an ardent anti-gunner. Wrap your heads around that one.

Because CP is caused by brain injury at birth or shortly thereafter it's effects and extent aren't usually known right away. Because different areas of the brain can be affected the types, subtypes and symptoms involved can vary greatly from person to person. People sometimes think of CP and think of someone in a wheelchair who needs constant care. While this certainly can be the case depending upon type and severity of the condition, it is not the norm.

I have a very mild case of the most common form, which is spastic diplegia. Essentially this means my lower body is primarily impacted while my upper body has hardly any extra spasticity at all. Additionally, my right side is affected more so than my left. Incidentally, I've tried pocket carrying the 432pd on my right side, but I just don't have the coordination and fine motor skills needed to safely draw and fire from my right pocket.

In layman's terms, what occurs with this type of CP is simple. The spasticity / rigidity of the affected muscle gets worse as one grows, since the rigidity increases as the bones attached to those muscles grow. Once I reached adulthood this was no longer an issue. however, the cumulative impact of that muscle rigidity during my younger years and the permanent rigidity I'll always have means that CP related symptoms and complications (hooray arthritis!) do get worse even though CP is not technically degenerative.

One of the more interesting things about CP is that no one really fits perfectly into one type of the condition, and as a result no two people have exactly the same symptoms. While my primary issue is the hypotonia characteristic of spastic diplegia, I also have secondary issues with balance, strength, coordination and fine motor skills. Trust me, all of that sounds far worse when I write it down than it is in reality. You adapt to your shortcomings, find intuitive ways around the little things that cause you issues, and when shit breaks you get your ass under the knife, work hard and get back up and running ASAP.

The things I've gone through in my life have always seemed far worse from a 3rd party perspective than they have from my own. I've noticed this even within my own family, with my big brother and I discussing my "tough life" a few years ago. I consider those life experiences a good thing, as they've shaped me into the person I am today. I've never quite understood that 3rd party perspective. Given what so many others less fortunate than myself have had to endure I'd say any hardships I had were trivial by comparison. I've been incredibly fortunate and my life has been anything but "tough." I guess that's a matter of perspective, just like everything else in life.

This post is intended to be the first in a series of posts. I realize that it's a bit dry and technical, however I felt like a discussion of what CP is was integral to posts going forward. Subsequent posts should be more interesting(or not, depending on your perspective) and more personal. Ultimately I'm writing about this topic because it interests me and it's my blog.


Evyl Robot Michael said...

I'm looking forward to this series. I've been fascinated with CP for many years and am interested to learn more from your unique perspective. In other words, bring it on, brother!

Sabra said...

That sounds a lot like Erik as well, down to the apparent cause & the prevalent problems.

I have asked him before if, when dealing with particularly dumb people, he has ever been tempted to say something along the lines of "I'm not that dumb, and I have brain damage!" ;-)

I do wonder sometimes whether and how it affects how other people perceive him, but like I told him at the beginning of things, I took less notice of the "I have CP" thing than the "I'm left-handed" thing.

Mike W. said...

Y'know, it's funny Sabra, one of the things I've learned over the years is that there tends to be a prevalence of left-handedness among those with CP. no idea what that means though.

I've never used the "I have brain damage" line, though I've jokingly blamed my concussions for times I've done/said stupid crap. It would be tempting though.

As for perception, I've begun to care a lot less about how people perceive me/whether they notice. Of course the fact that I'm done having a bunch of surgeries (crosses fingers) might have something to do with that.

Honestly, most people aren't that perceptive and wouldn't notice anyway. The 1st time I met Falnfenix's man wasn't aware and just assumed I had a bum knee. I suspect that's pretty common.

Damn, I forgot a TON in this post. Will have to include it in subsequent posts.

Michael - Thanks. If you've ever got any questions don't hesitate to ask.

Bob S. said...


Thanks for sharing this. I grew up with a speech impediment so I know a little of your struggles.

I have noticed that many people with conditions or issues that they grew up with tend to live their live with their condition instead of having their live revolve around the condition.

I look forward to learning more and appreciate your candor in sharing.

Mike W. said...

Thanks Bob - That's yet another thing I didn't mention. I had speech therapy for years as a kid, again CP related.

You wouldn't know it now, though I still occasionally slur my "S"'s or have my "LL"'s come out sounding like a "W."

breda said...

I love this post. Thank you for being willing to write it.

Mike W. said...

Thanks Breda - I honestly think it could've been better, but oh well.

I wanted to include pictures as well but that was too much of a pain to try and dig up the ones I wanted to use.

Perhaps there will be a picture or two in subsequent posts. I hope.

Weer'd Beard said...

Great post, Mike, and thanks for sharing.

Also 6' Premies unite! I was 4lbs 4oz m'self, but thankfully made it out OK.

It's my wife who has the brain damage. : )

Christina RN LMT said...

Thanks for sharing, Mike. Was it difficult for you to do so? Like your other commenters, I look forward to the rest of your posts on your life with CP.

Mike W. said...

Christina - I really hate the title of this post, but couldn't think of anything better / more witty.

Was it hard to write? yes and no. It was hard to figure out quite what I wanted to say, but the whole sharing part wasn't really difficult. I still haven't quite figured out what I want to write moving forward.

Weer'd - Define "OK?" You're one weerd dude, maybe it's brain damage. heh :P

Carrie said...

Great post. I'm looking forward to reading more. :)