the space between how doctors thought my life was and how it actually is

When doctor's say "Be active":
I hear "Go do something you aren't good at in front of people you don't know"

When I hear others say "Your CP is so mild!/You can do so much!/Be Positive!

I hear: "You should be over this by now, it's old news, it's not a big deal"

A funny thing happens when I think of my health history by itself, my body by itself, without comparison to a more pronounced disability; I realize that even if a lot of people with CP have more issues than I do, even though I can walk and talk and my struggles are few globally speaking, and even if this fact might not make any sense; it's still difficult for me.
Just take my word for it.

My intuition tells me that I could go to psychotherapy or physical therapy for a hundred years and still have some days when life stinks
Because everyone does.

Because if the expectation is that I will get used to this some day, I have to change my expectations
Some things in life are just difficult, and their difficulty does not communicate the fact that I am not good enough, this difficulty tells me

that it's just hard. Not that I am less than or bad, or need work on issues,
Life is hard with the wanting and the trying and then maybe the results are meh
 As easy as it looked for me to hey just go take gym with kids without disabilities and play sports, it wasn't that easy. I struggled with basic motor tasks and avoided feeling different at all costs.
As easy as my life looked for the doctors, as they didn't think I needed much therapy, I believed they didn't care, that I was in this on my own.
I felt like I didn't deserve a better life.
That I was "bad" at having CP
well maybe so but having to deal with CP as a kid is kind of "bad" too.
There, I said it.
A gift, perhaps, but one that teaches others more than myself

Exciting, yet intimidating news

    So, in April, I was denied services from the Bureau of Rehabilitation Services. I called the supervisor of the office and we talked.  I gave her time to read my file, and called her back, opened my case, giving me a new counselor. Now, I am not the type of person that enjoys agency types of appointments, but the most important aspect of becoming a client is the funding it would provide for me to receive services from other agencies, namely the one that I met with in February that had great confidence in me. 

     Even so, I'm a little bit intimidated by the fact that I am a client of this agency again. The building is depressing, the office depressing. I feel a little embarrassed that I have only had one job in my life, that I have education in certain fields but not experience in those fields. However, the emotional endurance piece I have been working on enters. Meeting goals sometimes requires assistance. I have to endure the appointments and the waiting to get through to making more money and living independently. Positivity is great, but positivity sometimes allows me to remain firmly planted where I am right now. So for change, sometimes it's necessary to admit "No, I'm not happy here and I can no longer be happy here." I excel at seeming happy so well that some might argue that "Well if doing this makes you happy, that's all that matters." No. It doesn't make me happy. Pays the bills? yes. Provides medical insurance that is better accepted than say, Medicare? Yes. But not necessarily fulfilled. Being liked isn't enough for me; I have so many intangible skills that are not utilized by cashiering. I won't ever be promoted by my employer because the company tends to look at what I can't do, but even more because I don't want to be promoted to a supervisory position with more responsibilities but only slightly more pay.  It's scary to take this step into accepting help, but it's a sure step in becoming who I am supposed to be.

the wrong angle

Instead of thinking "The way I am isn't good enough now so I have to change," or "I don't want to change because I'm happy with who I am" I need to build emotional endurance to be able to power through the times when I feel inferior.  From a disease model, I needed to change because I was defective. In reality though, it's not about a radical change. It's loving myself enough to endure the hard times of personal and professional change to get through the other side. If I don't, I am saying no to myself, eliminating opportunities because of the negative tape that plays in my head. This movie shows me being in a meeting with a client and coming apart, or shutting down when I am supposed to advocate for someone. However, the opposite of this is understanding my emotions and learning to control them, and calmly asserting a professional version of myself. I can do all of this. The story I tell myself is wrong.
  

A Rundown

 Here's a little overview of me: On the inside and to those who know me...I'm educated, perceptive, knowledgeable, and friendly. But to people that have never met me before and see a woman sitting on a walker working at a grocery store, they think I am a consumer of an agency for persons with disabilities, because this person may run events for such an agency: f someone with a disability is bagging for me, they think "Oh there's a program that get's people jobs, how wonderful." (actual paraphrased comment from someone.) But here's the truth:
I do not have a job coach. I did not get this job thru an agency; far from the truth. I got my job at 16 in 1999 when someone was having people fill out applications. I figured Hey, I'll try it, what the heck. I didn't use a walker then, but I still had CP, of course. I was a kid who liked having her own money and enjoyed relating to people, and fought for acceptance. I knew how things should be and if something was wrong if I felt misunderstood, I communicated my concerns. I kept trying. Co-workers weren't always nice. Customers didn't understand. There was no advocate between myself and the store, just myself. Eventually as I opened up, I gained trust in some co-workers that helped me. 
     I stayed with the company thru high school and college, then left for graduate school, but found myself needing money and drifting in life between my internship and the start of student teaching. I called the store after applying online. I had an interviewed and was rehired, this time, I sat down when ringing.
   I am sure there are more people with disabilities without job coaches. The assumption can't always be true that walker=agency, though I might use an agency to help advance my career. Maybe  a person with a disability just took a chance. I am not a product of your agency's work, though your agency shows greatness throughout the community. What I ask is that society consider that I am a product of my own determination.

I am more

I am More
More than my IQ
or test results
or labels
and for every time I felt trapped and could not regulate my emotions
I let them slip
Kicking myself mentally because I'm letting them slip
knowing how I'll be perceived
What about the thousand moments in between I nodded in agreement?
I helped someone?
I understood?
I'm not the fastest and I never have been a competitive person
unless, even with my emotional ways, even if I unintentionally cause discomfort
or seem to manipulate, I'm striving
to be the best person I can be
To look beyond how people should act, how things appear, look not only through my lens
(Because not everyone has gone to college, had good grades, two parents, or the experiences I have had, even if they never say so)
and see, feel what people are saying
So go ahead and call me "emotional"
and I may as well say
"Thanks"

The Barriers

The greatest barrier I face in my job search may well be the fact that I already have been successfully employed for most of the past twelve years. I didn't really intend to be with the company that long, but bills need to be paid. Insurance needs to pay for physical therapy, or counseling, or whatever. And so then I become concerned with the day to day, the transportation getting to said job. After that, I figure I might as well enjoy my time at home before work so I read blogs and look at YOUTUBE, and chat with my sister.
Another barrier I face doesn't have a name. I don't know why it happens. When I become overwhelmed, my brain takes a break, and I zone out. Or sometimes I might seem reluctant to join in on a project, because I don't just jump right in. Something stops me from doing so. It's almost as if with other people, I don't feel as if I have enough "room" to think and formulate my thoughts, so I tend to just let other people take over. I'm not really sure what role to play in a project unless it is spelled out for me. (There are some reality shows where I'd never make it). These issues have made up a huge wall in my life that I cannot get past. I prefer written communication to any other form, because I can go back and delete what I don't want to say, and take time to phrase things as I like.
Has this ever happened to anybody else?
You make a statement
The receiver either makes a complete joke about the statement and starts loudly laughing HAHAHAHAHA
until you just say forget it.
Or, even worse, maybe, is perhaps when one asks a question and is greeted, without finishing a sentence, with some philosophical paragraph about how life is or what one needs to do, but this lecture wasn't even necessary, because the person wasn't assuming anything, she just wanted an answer to the question.
Or how about when a person says he or she will be available for you, but then doesn't deliver, and then lectures about how busy he or she is, and how I have to do things differently, etc.
Ok, no need for a lecture, it's just that you said you were going to do it, and if you can't that's fine, but turning it into a lesson of some sort really isn't necessary.

It's CP Awareness Month!

Cerebral Palsy is a tricky condition. Living with cerebral palsy is a highly personal, individualized experience. It's not really a condition at all as much as it is a descriptor "Something happened in the brain that affects my motor function." As I get older, I realize I might have to do things differently. Maybe I can't work full-time. Maybe I will be able to drive one day, maybe not. I don't know if I am like everyone else. I know I have always felt different, not only because of how cerebral palsy affects my life, but also the fact that I have a huge family, I'm one of the only females in my family, I have anxiety and mental health issues that some people think I made up or am being dramatic about. As much as people will try to tell me I'm just like everyone else, I know that I'm not. I'm just myself.
When I was younger, I had more "mojo" to prove people wrong. I had more strength to overcome obstacles and challenge myself. Now, sometimes I just want something to be easy, or I avoid tasks or situations I don't like. Awareness of CP became apparent as I was older; it's there and it's not leaving, and I understand more than ever what this means for me. I pray with thanks every day for the independence I have, however, sometimes I do wish things were different if only I could fit in more. I wish that I wasn't so afraid that people wouldn't give me a chance. I wish family and friends that I may call to explain my situation wouldn't just explain the "other person's view." Because I understand the other person's view. I understand how life is, how life can be, I get it. Life has been beating me upside the head about how life could be (And I'm talking all of it, joy, sadness, pain, accomplishment, disappointment) for the last twenty-nine years.
I try. I make mistakes. I smile. I cry. I feel awesome. I feel uncool. I get frustrated.
I'm authentic.
I'm aware of how cerebral palsy affects me and how other's situations in life affect them.
I get it.
I'm aware.