Better Late Than Never! Get to Know Me (haha)

I should have done this sooner, but here we go!

Ok guys, so I am Kamie (obviously, lol!)

Bear with me as I write some of this, even though I have dealt with my disability for 33 years, I still find it hard to be open and talk about having special needs. I really don't consider myself special needs. There's absolutely nothing to be ashamed of, but somehow I still feel ashamed and uncomfortable in my own skin.

As I'm writing this, I'm having a really hard time, and I didn't think I would become overcome with emotion at the very beginning. However, here I am looking at the screen crying like an idiot (even though my friend helping me work through this says I'm not an idiot).

Oh boy, so I have Cerebral Palsy and scoliosis.

I think the worst part of my disability, or the part that bothers me the most, is the scoliosis (curvature of the spine).

Let me give you little insight why...

I have a pretty difficult case of scoliosis, and I curve quite a bit.

It really makes me feel self conscious.

In my head, it's the part that makes me feel more special needs than anything else...

I have gone through two back surgeries and a slew of other surgeries, and I told myself that

I would not make myself go through any more, but in the back of my head, I keep thinking about the fact that there might be a surgery to help my ankles and make me straighter and more centered (you know... blah blah blah).

I'll always have people tell me "God made you just the way he wanted you to be," and I want to believe it, but I still question it all the time.

My clothes do a good job of disguising most of it, I think, but over the years, my curvature has gotten worse, and I just hope that right now it's pretty stable for the moment.

So, this might be a little backwards...

Growing up, I didn't really have the right support system in place during my early years to get me going, and even though I would do physical therapy a few times a week, my mother would rely on my physical therapist and the people at my school to take responsibility, and I guess she thought that was enough.

She was a single mother with three kids, a lot of stress, and what have you (I might get into that with another blog).

She just didn't have the right tools, education, or the will to put in the effort.

That doesn't make her a bad mother. Don't get me wrong.

She did the best she could.

Sometimes, I really would hate my early upbringing, for too many reasons to discuss on this blog.

I look at other kids with disabilities, their families, and all the supports that they have...

The support systems that would do anything to help them grow up healthy and live a full life... I envy that.

People say you can't dwell on the past, and it's up to me now to advocate for myself and ultimately, I am my own support system

It's a daily struggle, Lord knows!

One day at a time, tears, smiles, fake it until you make it kind of outlook.

The daily struggles I go through just to be "normal"

What is normal, honestly? Would average be a better word?

I don't know... whatever.

Everything takes planning and effort... going to the bathroom, getting reliable help just to show up, getting a shower, getting in and out of a car, getting dressed, etc... things that "average" people take for granted.

Now, I am not saying that in a bad way. I am just saying in general.

Back before my second back surgery, and of course I was younger too, wait let me back up a little bit...

Okay, so when I was in my mother's care, I didn't know anything but helplessness.

I guess my mother didn't know any better, or she didn't have the energy to show me how to be independent. So, long story short, when I went into foster care (another story for another day), I was basically forced to figure it out or get left behind.

There was no one around who would tote me around and carry me all day long.

Quickly, I learned independence, whether I wanted to or not!

I was mad as hell. I couldn't understand why these people wouldn't do it for me... because that's what I was used to, after all!

So there was a time where I could do everything on my own with minimal struggle, and after my second back surgery, I lost some of that mobility... a lot of it being my own fault because 1). I didn't have great transportation to physical therapy and 2), I don't get motivated on my own to do that kind of stuff. I do better when I am around like minded people. This is a pathetic excuse... I'm not trying to make one, but I am just trying to be honest. I need to do better. I know it. Knowing it and doing it is two different things... you know?

So, let me tell you... I am still independent. I live on my own, pay my own bills, go to work, and hold down a job. Getting that job was hell; they say that they don't discriminate, but shit, we all know that's a lie. At the time, the HR that hired me was well educated and comfortable with individuals such as myself, she made me feel like any other person. She wasn't nervous around me. She didn't stumble to find the right words. No hesitation. She was good at what she did. That was 16 years ago. Sadly, finding unique people in today's workforce is few and far between. I am forever grateful to Jane Blanchard (spelling on last name), now Jane Holmes for this opportunity that turned into 16 years... not that it was planned (LOL), but as I always say... that's another story for another time!

All in all, I am a one person army (at least I feel that way for the most part).

I just deal with it, I guess. One day at a time, right?

I am thankful every day when I can actually get up and make it to work.

The anxiety I have to go through sometimes is rough.

That's why it's hard to want to rely on someone to have to help me.

Don't get me wrong. I am thankful to get the help that I have!

The anxiety just kills my soul sometimes... actually, a lot of times...

I don't really feel like I have "friends".

I mean, I know I have people that say that they are my friend, but

I really don't hang out with anyone.

Honestly, I put out a lot to go somewhere, to have someone drive me,

just so I can have somewhat of a social life every so often.

I put out a lot because I feel like maybe if I do that, they wouldn't think of me as such a burden.

I don't know... those are just thoughts in my own head.

I just strive to be as positive as I possibly can be.

I am full of gratitude because I know that even though I go through all of these different things in life, I go through on a daily basis physically, there is someone out there in a really dark miserable place. I try to keep that mindset and stay humble.

I am human. I have my days,

There are just simply some days when I feel downright blue or pretty pathetic...

The struggle is real. It's hard. It sucks

I have this love for life... for achievement... to explore... the want to be more than I am today... that's what keeps me going and won't allow me to give up. At least not today.

I have so many goals! I want to be able to build a small accessible house made for me.

I want to write this book. 30 Years of PowerWheels; I don't even know the process. Lord. have mercy! Maybe I will get connected with someone at some point that will help me ride it out... you know, etc...etc... other stuff. It's hard to have people look at you and automatically think that you are not as valued or equally human because you are limited.

That's something I deal with on a daily basis... even at work to this day!

It's hard to find people that will give you chances and listen!

It's hard having people tell you in your 3rd year of college that you can't come back on campus and finish your classes unless you have someone who can come and help you when you have to use the restroom. I fell a couple of times when I was by myself... so therefore, I became a liability, and they didn't want to deal with that.

So, therefore, they didn't think it was any of their problem afterwards.

They kept telling me to go to J Sarge, finish your classes there, and see what transfers.

Then, if you have help, you can come back!

So yeah, I reached out to J Sarge, and none of the credits for the past three years, up until my junior year, would transfer except for a couple of my gen eds.

Of course, I got discouraged and angry! I cried! They wouldn't even let me finish my current semester before they kicked me out.

So, if you are wondering, no I didn't continue at J Sarge, and no, I am not self disciplined enough for online classes... I am just not, okay (lol). I had already wracked up so much debt already for three years... why would I backtrack??

Just RIDICULOUS.

I just had one more year, and I would have finished. I don't know what I am feeling like... I am just feeling like... "how dare you!" I want to be mad at this point still, but I know I can't go on like that. So, I told myself that my next move was going to be to write this book and to work REALLY hard on trying to love myself. Man, is that a struggle, for real!

This is at least half of Kamie... You either think I'm loony tunes , or you love me (LOL)!

I love you guys, and I always try to be kind.

I'm just like anyone else.

This blogging thing, I think, will be like therapy for me. Hopefully, it will turn in to a book soon!

Still continue to be patient with me. I am no expert! I am learning this blogging thing as I go.

I hope you enjoy reading this, as much as I enjoy sharing (even though I had to make myself share this one...)

I am an emotional wreck (even though my friend helping me says I am not), and I am going to go get ready for bed at this point so I can start a new day tomorrow.

Sending love to all! See you on the NEXT blog.

Please subscribe and follow. I promise, it will be fun.

Maybe a few tears along the way, but it will be fun.

Good night, and I will be writing again soon.

~Kamie~