A year later

 A year later, I don't know if I could be the spokesperson for where I live.
But I know that I speak up more for myself
A year later, I still don't know my life's path
But I am more accepting of that now
A year later, I haven't changed at all in some ways
Because what I needed to change the most was how I treated myself
A year later, I still give to others
Even more than ever, still as automatic as my huge grin
A year later, I realize it's not about the place or situation or life being perfect
Or even learning lessons from imperfections
Sometimes life is hard, and that's just because it is
Not because I didn't try
or because I need to learn a life lesson
But because sometimes life stinks
And the only way to react is to hold your nose
and keep going

For World CP Day

I have a wish list:
For everyone with CP to be able to live, think of a goal and pursue it without having to overcome additional obstacles, and without having to prove themselves. A question should be "How can I help you achieve this goal?" not "How are you going to do that?"
      I wish that the medical community didn't give up after a certain age, because cerebral palsy doesn't disappear. Everyone deserves to perform at their maximum and have the right to determine that for themselves, not relying on a doctor or an insurance company.
I wish that people with CP that need assistance did not need to be dirt poor in order to be eligible for assistance or stay dirt poor to remain eligible
I wish that cerebral palsy did not mean to some I lived a completely different existence and cannot relate to others.
I wish to ease the burden of always being positive
I wish for others with CP to be able to tell their story; the good, bad, funny, sad, angry, embarrassing,
to eliminate shame.
I wish for better public transit options
I wish for more of everything; more awareness, more research, more communication, more conversation about what needs to happen, and more hope and faith from society that people with CP will lead a full, self-determined life.

I'm in the grey, and that's okay, it's just hard sometimes

I can walk but not till age six
I had surgeries that tried to fix
my feet with limited success
I'm only understood by those I let know me best
I work shifts that seem like a breeze
But maintaining a joyful attitude does not come with ease
When I'm tired and my break's late and it's not my turn
Fairness is not my body's main concern
It's screaming to sit down or have a snack
I can't block it out or argue back
I get what it looks like that I don't understand
that they have to deal with what the managers demand
I hesitate to tell anyone how I feel the next day
when I overdo it I'm the one that will pay
They won't see me struggle to walk, stand
Because I'm in the gray I seem "OK"
 I can pass for able, what a gift!
Until something happens, attitudes shift

"Cashiering is tiring, even sitting down?"
It doesn't make sense, said with a frown
My body does not work typically
Balance, stamina, coordination are key
for life and for me are hard won
To do a little bit of what's usually done

I hide a lot of the pain I feel, It can't be explained just by conversation

Afraid I'll hear "Others have it so much worse" or "It's not that bad"
You see, that's what I tell myself too
But sometimes it's all too much
With feet sensitive to touch
reflexes can't compete with a scanner
and pressure to be neat and try to keep up
Both of my degrees fade away
I'm all I didn't do, should have tried, and all I didn't say
I'm looking for a place to belong
in this world that seeks a perfect fit
And I feel like my body's wrong
So yes I'm in the grey, and while that's ok, it's still CP
And it doesn't make sense that a person so blessed
could feel like an impossible mess
I'm not always a hero, not always an example
But I'm a pretty great person, whose gifts are ample

To live

Sometimes I want to prove everyone wrong, pursue a degree in mathematics just to prove I can, get my PHD so I can be "Dr. Mel." But more often than not? I just want to live my life doing things I want to do. I want it to be okay for me not to know what I want to do with my life. I don't want to always question whether I am doing enough or having the right attitude. I want to be happy with myself and not have to convince other people I'm happy with myself. I don't want to feel pressured to resolve ALL of my issues in my life in order to be successful. I want to try and then try other stuff and not like some of the stuff I try so I try something else.  I just want to be. Earn a living, come home to my cat, maybe have some friends over, take a nap, rinse, repeat. To be able to make a mistake, learn from it, and move on. To be believed when I say that I am doing the best I can today. I know that not everything I have been through makes sense, or not everything I feel is logical, but this is my journey, life as I see it. This is my reality. It's not objective, it's not "big picture." It's the life story of a kind-hearted, brown-eyed, you-tube, commercial loving person. I want to live in this reality and be ok with that.

Thriving

       It's easy to forget, in daily life, that something amazing is happening. I see my parents about once a month, and I am not falling apart! (Wow) I'm realizing that I was independent all along- or as independent as my environment would allow me to be. (Sometimes, no way was I going up those stairs again.) I'm working at a different store wearing the same ridiculous outfit and although it is not the "home" that my old store was, the one where I grew up through high school and college, where I encouraged co-workers as they graduated from Western  and continued in life, it's okay. It has an elevator. (What is up with me escaping stairs all of a sudden?) I'm a lot of the time the neat, calm person I never knew was in there. I'm still my same emotional self, but I'm starting to see its purpose.       
       At the same time, life feels the same. I had this expectation that suddenly at a certain point everything would be AMAZING! I would be social, and outgoing, and accomplished! I would write that resume, find that job, write that book. I will. Just because I am not doing those things at this moment doesn't mean my life is not AMAZING! Maybe more so my life is amazing. Little things happen every day. I get tired, I become frustrated, I forget things, I drop things. I underestimate the difficulty of life and think that everything should be perfect by now and I should know everything. Months will go by and life will be hard, not due to lack of skill on my part, but because life just gets that way. Everyone's life has a different path. It's an individual journey with lessons to be learned independently. I try not to compare myself with other people, because my journey has been hard but everyone's "hard" is different. It's not about convincing yourself or anyone trying to convince you it isn't hard. It's about developing skills to get to the other side, and might I add being gentle to one's self in the process.

30

In all life's changes these past five months I have learned my deepest fear, or anxiety: That no matter how hard I try, I will look to others as a complete mess and unable to hold it together. I judge myself as someone who should "do a better job" of whatever it is I'm doing, although I withhold judgement of others.  Rather than sizing people up, I notice detail, but experience the person without analyzing appearance or drawing conclusions based on what I know after five minutes.
      However, I do not grant myself the same compassion.  My nervous system is hard-wired to keep up with others, to meet the standard set by the able-bodied population, even if there isn't a standard and it's all in my head.
       Difficulties don't disappear just because one ages  A  miracle pill or cream is available via infomercial for almost every ailment.  The truth is certain issues do not respond to any quick fix; learning differences cannot be eradicated completely. No matter how many stretches performed, extremities corrected, or skills practiced, I will have cerebral palsy. I could study tactics to tackle non-verbal learning differences, but the differences will not disappear.  I must work around these issues.
      How does this relate to my deepest anxiety that I fight against? Because perhaps on the outside I am holding it all together, I'm not failing. Even if all of my files are not alphabetized, my thoughts are scattered, and I get confused. I'm trying. The problem is, I don't want to. I would rather not be confused, but I'm human. Cerebral palsy and non verbal learning differences were not consequences of my choices; I didn't get to say "No thank you." I choose my attitude, however, and I also need to choose to treat myself better. Positivity helps, but realism works even better. I look at my family, my intelligence, my sense of humor. Yet I also have to give myself permission to say "Well isn't this inconvenient! This really frustrates me!" at times. If I am in pain, perspective helps a little bit to say "This isn't a terminal thing" or "I've been through worse" But sometimes, when it's been a few days, and I really feel the pain with every movement of my arm, even after heat or cold packs or Ibuprofen, I just want to use my arm, please.

      From here on in, I'm  celebrating myself and eradicating negativity.  I can be real about my weaknesses and limitations and admit them, but what about all the awesomeness? Sure, I've struggled in life, but my strong sense of character helped me to earn two degrees, deal with the public, encourage people, share my well-loved poetry, and learn to walk about four times. (What do you mean you have to bend your knees to walk? Really? Is that a must?)  I've stayed strong despite people doubting me. I've kept going. 
   If I stop thinking about how I am not enough, I will actually be able to improve my life and have enough of whatever it is I want, that is if I lack it in the first place.

I couldn't tell you then

I couldn't tell you then, Gramma
Because you were finally resting
I couldn't bring myself to disturb you
I hope I told you enough how much I loved you all the time
That I saw you enough even though it was never as much as I wanted to.
I didn't get to say "Thanks" for all the love you gave me even though you knew it anyway
and now in my life where you were, there's a hole
I wanted you to be a part of everything
Because you were
You were there for everything
and most importantly you wanted me to have everything I deserve, no matter what it was
I couldn't say it all then and I didn't get to say Good-bye.
It's important for everyone to have a space in their life free of judgement, questions or suggestions.
I'm sure you had some, but the last few years when it was important for me
You didn't.
I'm not saying that no one loves me, I'm not saying that I didn't have support except from you what I am saying is our very unique relationship has changed. That loss, is real.

Almost three months in......

       I think there should be an elimination of the expectation of feelings. I have a mild disability so I should be grateful that I can do so much, grateful that I can work so many  hours because people would love to work that many hours. Except, if I am "just like every one else?" I have feelings, I feel pain, I get annoyed and frustrated. I feel these feelings not because I am ungrateful or lack perspective, but because I am a person.
       All my life I have been told about the importance of gratitude, the importance of positivity, of hard work. However, that is not the whole story. These values are not cure-alls. I am grateful for my abilities as a thinker and writer, and I am optimistic and positive, but pain still hurts. I don't know if I am where I should be at age almost thirty, I don't know if emotionally I am as mature as I should be, but I have to start now in the present. Right here, no matter if most people my age are married and have children, if I am supposed to be "over" the fact that I have a disability by now, If I should have looked harder for a new job, is where I need to start for any change to occur. I cannot change the decisions I made in the past and I have punished myself emotionally enough. (Could I have tried harder? Should have never done that....) No use in labeling myself as "delayed" before I even start a goal.
         Whatever I feel I have to deal with it, no matter what anyone else thinks. I have to be myself. Because my view counts, too, even if I have been told all my life that I was "too sensitive." My life has shaped my perception; my large family, my medical history, emotional struggles, my failings, and even the perception that my view is "wrong" influence how I process information.  Knowing how people perceive me, I'm not shocked when I am underestimated or misunderstood, but no longer do I rush to "make" people understand. Because certain aspects about life cannot be taught; certain lessons must be felt, and one perhaps will not  think look beyond their own experience in life to  see beyond my scanning speed or the fact that I resemble a human  tornado behind the register.  How hard can it be to be fast and neat right? Apparently difficult, because as long as I have been with the company I have struggled. , so I focus on my friendly personality and thorough attention to my job. And maybe I shouldn't feel alone when the tornado in me is shining through, but sometimes I do. But I have to be honest with myself about my feelings.
     I don't know if my skin is thick or thin but all I know is it's the only one I will ever have.