My friend, the comedian

Many knew Gene as a kind, courteous individual with high expectations for how service should be. But I often saw a different, funny side of him. Once I asked him if he watched American Idol and he looked at me with a look of most disgust on his face.  Or our tendencies to speak in an British Accent to one another.  "Hellllooooooo" When I first met him, he bagged my groceries and at that time I bought a lot of Cheerios, say four large boxes and he said "Maybe you'll have enough for tomorrow." He was honest. He told me once, because he didn't know that I had been an employee of Stop & Shop previously, "I didn't know if you could handle it. but boy, you showed me." He sang along to songs on the muzak in the store, and was surprised when he asked me for lyrics, and I went home and printed them out.  The amusing thing was that the song he wanted lyrics to "If I were a boy" by Beyonce and also sung by Reba Mcintire. These are the memories I will treasure when thinking of Gene. I smile remarkably less now. I'm less sure of the fact that how hard I try makes a difference. Gene, thank you for reminding me of all that is good in life.

I love you, Friend

My dear friend Gene,
    One of the fondest memories I have is when you came back to work, and I didn't know it, and you surprised me and I exclaimed with glee. There is never enough time to love. I know you are not suffering anymore and for that I am grateful. I consider myself to be blessed to work with you for the better part of three years. I will need to dig deep to find courage, as you were one of a kind, and loved me whether I was loud or quiet, smiling or not.
I leave you with our quote
"Whenever you feel like criticizing someone, just remember all the people in this world have not had the advantages that you've had"- F Scott Fitzgerald, The Great Gatsby, Page 1.

Why it's not funny to joke about my intelligence

I can admit, with my boisterousness, harmless sarcastic humor, and easily identifiable weaknesses, I am an easy target for jokes. I'm all for humor, unless it happens to reflect every struggle I have ever had in my life. I understand the speaker was "joking," but has anyone ever felt that when a person using humor, blurs that line between funny and offensive, the speaker is really disguising how he or she feels about the person, or a belief they hold about the person?
       Someone quipped at work "If you have to ask me that question, I am surprised you have a degree."
Wow, really? You had to go there to that obvious, forbidden place? Let me tell you something. First of all, I am pretty sure, that due to the fact that you moan and complain when you are in pain, that if you were in my situation I know that you wouldn't have been able to achieve what I have. It took courage, will, and persistence, to work at stop and shop part time, having cerebral palsy and chronic pain issues. Standing up to questions of my intelligence exists as a routine exercise in my life. That's a low blow, especially since asking why my drawer at work had to be counted had really nothing to do with the fact that I have a degree, or more specific, I have two of them. Every day I have to work to put my smile on and walk out the door and be positive. Every day I struggle because things that are so easy for you are difficult for me.  I have to think about how I am getting places and who is bringing me where. I have to ask for help with things I don't want to and have to hear your snark about it. So do me a favor. Think of me not as a person of contradiction, think of me as a person of courage you wish you could have.

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.