The beautiful days and the nightmares of night

It's my niece's fourth birthday today. She has delighted me and challenged me every day. Challenged me most in the physical sense, meaning, saying "Try this Meesa!" She has taught me to love in the most abundant way possible.
I really notice this love when compared to other times in my life, and it is no exaggeration that I experienced a nightmare of these times last night. As in, a nightmare when I was sleeping and I woke up and said "That wasn't real, whew." I had this dream that I went to my CP clinic appointment in a hospital (I'm 28, so that was my first clue it wasn't real, but since in my dream I exclaimed my age, it still felt it) There were these experts sitting around me and my mother was there, and they were talking about braces, talking about what I don't do enough of, or maybe they weren't talking at all in the dream. Maybe they were just staring at me, a bunch of white coats in a circle. I don't want to be in that place again. I'm glad as an adult I have more control over my experiences. Those appointments always made me do a reevaluation of myself, and usually I just went through the motions emotionally, not really feeling anything until I got home to do the reevaluation. Sometimes I do wonder what the experts, the residents, interns, doctors and PTs would say about me now. But because of the dream I had, I remember how that felt, and I will stick to wondering for now, not really finding out.

Revelation

I used to feel bad about not being independent. I mean, needing help. And then suddenly, I stopped caring. Because it seems to me I was doing a whole lot of understanding in my life of other people's perspectives, and not receiving much in return. CP is tricky, because sure I could go to therapy every day, I could exercise, I could have surgery. But in the end, I will still have cerebral palsy and there isn't much I can do about that. It's not about trying harder or making up for anything it's living in the reality, without sugarcoating, that yes I do need help with some things. It's not saying that I have a bad life, or that what I have been through is the most horrible experience. It's just saying CP is here and no matter how hard I will try it's not leaving, so instead of trying to fight it, instead of feeling pressured to make up for what I lack through no fault of my own, I will try to make the world a better place.

transportation and Me (With occasional appearances of Jeremy)

So I live with my parents and younger brother, Jeremy, and between all three of them, I divide up my transportation needs.

This is because

1. Jeremy and I work at the same place in different departments

2. He is generously compensated.

3. Mostly, because my workplace will not give me a set schedule so that I know when I am working in order to schedule the bus service, which needs two weeks notice to book rides.

I don't want to schedule them and then have to cancel because if it happens too much, one's privileges become suspended. I could approximate when I will work, but I don't want to be waiting around for a couple of hours because I needed to get the ride when I could. I don't take cabs because I live far from my work, so getting a cab there would almost negate my working. I don't know if my work is doing anything wrong. My instinct tells me that work cannot do that because they want to be fair. It's a grocery store. A lot of people would want to have a set schedule. Except one thing. When I had surgery, or had physical therapy, or couldn't do something I was always told life wasn't fair. But here's the thing. I don't want something someone else would want because no one would actually, in my opinion, and I am talking about my co workers, no one would want the cerebral palsy part of my life. They want to be able to walk to work or drive or take the big bus because they can walk from stop to stop and navigate the stairs. I doubt my employer would understand the mental distress over not being able to have reliable, independent, transportation to work. I know it's not their responsibility. I get that. But I think that sometimes, my view counts, my view is important. My perspective on life is needed.

I remember

Fifteen years ago yesterday, I had seven and a half hours of Orthopedic surgery. I remember it, not like it was yesterday, but I remember more than I would like to. I walked into the operating room with my mother, and hours later, I woke in the recovery room, not knowing if the surgery was really over, and too afraid to ask, and then I do. My parents aren't there, and I stare at the ceiling. A strange feeling, walking in and hours later, unable to walk, move, confused. Sometimes I can feel the fear I felt, knowing yes, I planned on this, and I wanted this, and it was necessary, but I didn't really want it. At first I was enticed by the fact that I would have a straight knee, instead of my right knee facing left. I didn't know that the operation would entail my feet, my tibia, my hip. At 13, my identity was forming, and my body was restructured, and so my sense of self was as well. This experience changed my identity, and to this day, there are reminders. This experience also represents life. A line can divide life into before and after, and you never know how a surgery will turn out, and it's nobody's fault if it doesn't turn out how you hoped, but I felt like it was someone's fault. I don't really know why I am writing this. Not because I want to tell everyone how hard my life is or how tough I am.
When I share that surgical story with friends, or people that ask, I realize maybe life is one big rehabilitative experience, restructuring ourselves. Everybody can look back in a phase and say "Oh that's when I was really into dinosaurs." We learn, we experience, we grow, move forward, then in my case I have intense periods of thought that involve the internet, YouTube, and blog reading. This is life.

New hope

This new hope has nothing to do with cerebral palsy at all, but rather, something more exiting! I am getting my braces off in a few months! I have had braces for almost three years now, and let me tell you, good thing I didn't know about it beforehand because I am not sure I would have done it. It's more painful than I thought and because of the pain, it was hard to focus on the big picture. Suddenly I see the end of this journey and it has been hard work with the powerchains breaking, the appointments, the brushing, the stubbornness of my teeth. I used to actually practice closing my mouth the "right" way so that my bite would be correct. I had this stuff in my mouth called "build up" to help me align my upper and lower jaw, which afterwards made it hard to talk. I am glad for this phase in my life to be over, and to be able to move forward!

Intense moments of truth

As I aged, I found hiding my feelings proved more difficult. For example, all my life, a rule governed my life. Don't feel upset when you fall down, laugh at yourself, it's not a big deal. I struggled with it. Sometimes, I can joke about it. But recently, last Thursday, I was in a hurry to see a favorite college basketball player get drafted, and I don't know what happened, but suddenly I was on the floor, I hit my mouth on my arm as I went down, and the floor is tile, unforgiving. My braces collided with my lip and I knew I was bleeding. I got up and took care of business, and all I felt was pain, embarrassment. Laughing about it was not even possible, because the pain was intense. Sometimes the fact that I have cerebral palsy and I fall because I forget to think about movement is right in front of my face. And it's upsetting not only for me, but for my parents, always quick to suggest solutions, only after I fall I am not receptive to suggestions.

I'm just thinking things like: Crap! I have CP!

I can't believe that just happened!

I am so angry!

Can we just forget this ever happened?

Man that hurt!

Did I lose a tooth?

I don't even know how it happened!

One thought after another, with no spaces or punctuation.

But being honest about how you feel is being who you are.

And I can only be me

My family

My Stick Family from WiddlyTinks.com
* This graphic represents who I live with right now, my actual family is quite big.