Christmas Shopping (or maybe not)

One of the greatest things about my friendship with Gene was that we understood one another, like a few years ago, when he agreed with me "Christmas has gotten out of hand." No one that I know needs anything for Christmas that will show him or her my love. Best of all, my love does not require batteries and cannot be lost underneath a couch.
         At the same time, I feel guilty that I don't have the urge to spoil my loved ones on Christmas. There is this expectation that I should relish a trip to the toy store to pick out gifts for my nieces and nephews, but I don't like crowds, and anything that I would want to give them is too expensive. I always feel a Christmas let down when I am excited about what I got for Christmas and someone else says "I got fancy electronic A, designer B, and cutting edge C." A few years ago, my dog needed knee surgery, so Christmas wasn't that eventful, and this year, she had ear surgery. Fine with me. Some people want a puppy for Christmas; I would rather have my eight year old lab mix be well.
     So what I decided to do in lieu of gifts this year is a sizable donation to a charity I have been meaning to donate to for some time. The minute I filled out that PayPal form and put in the amount, I felt hope fill my heart. The donation cannot cure the pain of the family that lost their son way too soon, but I hope to contribute to his memory.  I think of grieving people and people facing economic hard times especially this season. If I feel pressured to be happy and spend money, I can only imagine how others feel.

Danny Holt Memorial Fund




 

Help: The Living Definition

A boot company's box was presented to me on my birthday. I took it as a sign that I needed to switch up my wardrobe, however, something ever more magical that floated my sneaker-loving, poetry-writing , boat. I opened up the box and snugly between the tissue paper was an Ipad. At that moment, the words "help" and "love" were defined for me. I'm not a materialistic person, don't let the sneakers, hoodies, and fleeces fool you., as the ones I buy can be expensive. I am uncomfortable asking for high end, pricey gifts, and only asked my sister and brother -in law as a joke. I didn't expect it. Love means "Ok, you can't ever buy this yourself, and you struggle sometimes, and I feel for that, and so here is what you asked for for your birthday as a joke." And help means "Here is something so you don't have to carry your computer up and down the stairs. I know I don't usually spend this much on a birthday gift, but I want to help you be happy."
    I have a sister and a brother in-law  anyone would envy. They seek to better my life and understand my life. My sister never hesitates to get right down in there and help, rather than just talk about it. She taught me what love is. Thanks to my sister and brother -in- law I have found new hope. I love you guys so much!

A different definition of "Help"-Part 1

Last week, I came across a great blog post.  And I thought "Wow, that's my life story! I should write about it!" But a lot of the time, as I sit down to type at my computer, my mind goes blank, instead my blog posts pop in my head when I am in bed, or at work.  I know that when people say "Have you thought of this, What do you want to do with your life, Have you just been working at the store?" they mean to help motivate me. If only motivating me were that easy. By "they" I could be talking about my family, acquaintances, or longtime friends, or even customers. I  understand they are trying to help. But that's not help. It's giving advice on what I should do with my life and sometimes this advice tells me I am doing something wrong right now.
       Another tactic for "help" is asking someone for something and this person might just tell you to ask someone else. Only sometimes, due to the fact that people have their own lives to attend to, my parents work, and it's hard for me to ask for help because I know that the possible response might be a cheerful "I wish I could, but why don't you ask ___________," I have asked this person because there is no one else to ask. How embarrassing is that! I cannot talk about it, because the fact that a lot of the people in my life are busy gets confused with the question of whether they love me or not. Sure they do; love has nothing to do with it, I'm a swell gal, I have a sense of humor. Love is the easy part. Practical help right then and there and shifting obligations to help me isn't as easy and I get it. I don't know if it's known I get it, so I just don't ask for help at all, even if I am urged to, and I don't even talk of my need of help.
How to help me the most? I appreciate a ride to an appointment, work, or to do errands without complaint or without a comment that it is so nice that a person drives me places. If I ask someone to do something, it's easier if this person does it without telling me to ask someone else. Accept that I work at a grocery store with a master's degree for health and dental insurance. Thinking about it, help to me means accepting who I am and following my lead.
      

End of an era

I'm really proud of myself. I lasted three and one fourth years in braces. I didn't expect to feel different, but I do. It means an end of a chapter of being a preemie and having a brown tooth, and congenitally missing two teeth, avoiding the dentist for years, then going faithfully, and  then onto orthodontics, having two teeth pulled to relieve the crowding.
   Having been under the care of many doctors in my life, I have to say, my orthodontist is my favorite. He wanted me to be happy with myself. The first week with braces was the hardest; I had canker sores from my lip getting caught on the brackets, I didn't understand why I drooled so much, and my lower lip was huge. I wondered, did I make a mistake? Can I handle this? But I called him up, and he agreed to see me the next day to switch a few brackets to a smaller size, and also to cauterize my canker sores.   
      Movement of my teeth seemed noticeable, but a long process. Everyone says that braces aren't bad, and they aren't horrible, but I was uncomfortable. Eventually, I got used to the feel of them against my lips and inner cheeks, I learned how to talk over them and eat without biting directly into the fork instead of my food. I lived without gum, or corn on the cob, and cut up apples.
     And then suddenly, they were off, my teeth were polished, and I looked in the mirror, thinking that I would know, since I had the clear braces, what my teeth would look like. I looked in the mirror, and I cried. I cried like that show where they "move that bus," I cried like a winner in a game show. It wasn't all out sobbing, just tears of pride, relief, and joy. Growing up with cerebral palsy, you learn, or I have anyway, how to accept your flaws, to know who I am inside no matter what my gait looks like. But the fight seems easier now, as I know no child would point out my need for braces or wonder what those things were on my teeth. I felt an ease about myself. I have struggled with orthopedic alignment all my life, and it feels nice to know that my teeth are now where they are "supposed" to be, all the more confident about how beautiful I am inside.

Keep in mind

1. Not everyone has a cell phone, computer, or internet
2. Not everyone can drive
3. Not everyone has a GPS
4. Even if a person can drive, that doesn't mean he or she has a vehicle. 
5. Not everything that is easy for one person is easy for the next. For example, I might look like I should be able to crouch down, kneel, sit on the floor comfortably or cut in a straight line, but these things are not easy for me.
6. But that doesn't mean there aren't thousands of things I can do or am willing to try.
7. Being willing to try takes courage
8. Being willing to try takes patience

Follow @runmeesarun

A new mission

A shock, breaking my heart

I breathe in, and I say the news

And I knew he was in a better place,

And I even had a dream about it once

I need a way to spread the joy I found in our Friendship, yes with a capital "f"
The relationship was pure joy and deserved a capital letter

Everyone should be required to have  a "Gene " in their life.

I want to grab a pen and paper and scribble down anecdotes that I remember, and there were many

I want to sit at my computer for hours, finishing a novel, because he didn't

Don't label, Don't judge. If you are going to perform a task, act like it matters. Marvel. Be honest. Love. 

That was Gene.

Gifts

    In the interim between my internship and student teaching, about a semester's worth of time, I decided to go back to Stop and Shop, given that I needed money, and it was what I knew I could do. Sometimes I used to think about the fact that I had not "graduated" from Stop and Shop yet. Now I know better. If I had not returned to Stop and Shop in March of 2008, I would not have met  Gene at all. I wouldn't know that, while a person does not think I necessarily need to become a better person, I still would grow into a better person. Gene was out on Medical leave for about five months. I didn't want him to rush back if he was not ready, and I didn't think he would decide to come back. So, imagine my delight, when coming down the stairs I see one of my favorite people walking up the stairs to punch in. I screamed with joy and threw my arms around him, and he hugged me back. Normally, Gene and I didn't hug. We didn't need to. I believe I exclaimed "I didn't ever think that this would happen!"I was given another gift of a few more months of working with Gene. Now that he had been gone a while, I had time to compare the before with the after, and the relief I felt to work with him, not only because it was fun, but because when he was with me, I knew that he was okay, or at least okay enough to work.
  I am glad for God's gift of friendship between Gene and me, and the precious months that I worked with him when it would never happen again. Think of it, my friend. No more hospitals, no more struggle, no more sickness. I hope that wherever you are, you can see my trademark huge grin whenever you want to.
     It breaks my heart, but you have broken free of your life here on Earth. I love you.

Pain

        If I feel like I have lost my best friend, maybe I have. If I look sadder, I am. Gene was loved by everyone, and there were people that knew him in a different way than I did, but the way I knew him, I know few. Or shall I say the way he knew me. It's a balance of understanding pain and the importance of feeling whole, expecting the same but understanding the different. Few can do that, and I have recently realized a person has to be my friend to do so, must be close to me. Too far away and it is easy to count me out as a person who talks too much or is too sensitive, too close and the past clouds a person's view. Many people I have worked with have known me for twelve years or so, but they have formed their own opinion that I might not agree with. And so now as I start over, the store might as well be a new place, as I have lost an ally. I know everyone lost someone important and we are all grieving. I'm older now, with less patience for beating understanding into people. I might be told to move on. I might be told to do my job and I will, but with less enthusiasm. I just don't have it in me anymore.

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.

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.

A simple mini guide to life

1. I think that if a friend is going through hell you have two choices.
a. Convince them that they are only in "heck" or my favorite,
b. Grab a fire extinguisher or a hose

2. My dream is that at work, nobody would realize whether I was standing or sitting. I would just be a person working. Nobody would make a joke or ask a question.

Treatment, by others not doctors

I was asked if I struggled between being treated like everyone else, and being treated "special." I can't say I agree that it's that simple. I want to be treated like who I am and how I treat other people. For example, if someone treats me poorly, but they treat everyone that way, I still would take offense because it's not right to treat anyone that way.

Sometimes I am sensitive because of who I am, because that's who I was meant to be, and not because I have cerebral palsy. And I don't think, I can double check this but I am not sure that being sensitive is a crime. I guess it depends on the definition of "same." Treat me as a respectful, educated individual that has insights others might not? Sure. But treating me as if cerebral palsy isn't there? As if I am an average person with average experiences? I'm not sure I want that because that's not who I am. I don't like people asking why I'm sitting down at work, and I'm not sure why, I just don't like it, and that might well be just a preference, not CP related. Life is tricky. Sometimes I don't feel better when I hear people say "It could be worse." Life is not straight forward like that.

Take notes, Here's some critical stuff

In life, in an effort to be unselfish, to avoid being selfish, I have a tendency to want more for other people than I do for myself. In theory, it sounds wonderful, but in practice, it's not the best method. What I mean is, I wish success on other people, I make decisions that are best for others rather than myself, and that is not acceptable behavior. Wanting for others isn't a bad thing, but risking your health, emotionally, bodily, or financially is never a good idea. Ever.

In life, in an effort to be laid back, I tend to want to let things slide. But sometimes, standing up for yourself is important, even if the incident was not what others would call in the scheme of things, "a big deal. Standing up for yourself draws a line that says "I won't be treated this way."

I ask myself a question. "Do I want to go down like that?" Meaning, known as a person that doesn't care how she is treated? No. So sometimes I have to say "No, that joke is not funny." Or "I understand your point but there is no need to suddenly treat me as if I don't matter as a person." To that last point, I don't know where this comes from, but I must have this vibe about me that says "I don't understand anything, so feel free to just yell at me if you are having a bad day." I understand what it feels like to have a bad day, I have had plenty. But is that an excuse to just blow steam off at the nearest bystander that is simply asking you a question? No.

The most important point is last. We only have a certain amount of time here on Earth, and we have to take what we are given and live the best life we can. To make our life the best we have to make good decisions for ourselves, defending ourselves when need be.

Power

Sometimes in life

we look back and think of times when some aspects were better

Oh back in college when I walked by myself everywhere

and long to go back there

When I try to travel back there it's like there's a power line down on that road,not possible

I could investigate this and say is it CP or is it anxiety?

But then something hit me: I don't have to even care anymore

Because my life isn't about walking, not anymore at least

I have the power to make my life the way I want it to be

Even if I often don't think that I do

I don't have to investigate and come to a conclusion to shut the door on the great walker usage debate

I can just reach over and close it myself

Working through to find my path

Six years ago tomorrow, I earned my BA in social work. I started thinking about how quickly time moves, and felt sad that I don't see my college classmates anymore save for when they come grocery shopping. I could dwell on my underemployment or compare myself to peers, but I don't

Last year on Facebook one of my best work friends posted an answer to a random question about me. It was "If they made a movie about Melissa, what would it be called?"
He answered "the girl that can't be stopped." I printed out that quote, I put it on my wall and when I moved I made sure I had it with me. Life is hard, for everyone, even a smiley Nike(tm)wearing optimist like me. When I graduated college, I didn't know what came next. I was overwhelmed. Now, though, even though I have not yet secured a paid social work position, I realized what my friend's quote meant. What is unstoppable is not my body, but my spirit. Still working at Stop and shop? No big deal, get through it! Make the best of it. I get up every day and I try to make it a good day.

But sometimes, because life is hard, and life carves out a path for us that is unknown in purpose and not chosen for ourselves, and so I do have a bad day. But I am learning how to feel. II've felt for years that I was running, at break-neck speed away from something. Even when talking to professionals I would avoid this issue, not really knowing what issue it was. I am finally staring at my struggle of self-worth in the face, after years of on one hand telling people my life was beautiful and on the other, hiding emotional pain I felt, how I felt at times alone, unable to express my frustration and sadness when I look back and think "I never rode a bike. Maybe I could have but I didn't because I didn't try hard enough." Now, I know I am no worse for wear seeing that I haven't ridden a bike, It's not a be all, end all life experience, but I file it under "Would have been nice." I didn't tell anyone that not driving bothered me, that I longed to be fast and neat and organized, all areas in need of work in my life, because I thought I was supposed to be"Over that". But I learned in some ways, getting over hard times completely represents an unfair expectation. Some things, like difficulties that will always be with me, aren't "Gotten over" but "worked through."

Life

I know everyone is different, but there are little differences about me that have changed my life experience.

I can't wear cute flats; they won't stay on my feet.

But out of necessity, I'm comfortable with who I am

I don't know why but in anything other than an athletic or plain T shirt I feel a need to change my clothes.

I don't feel comfortable expressing when I am in a lot of pain

But at least I know when I can't push myself anymore

As in, it's not possible

I have trouble using my hands sometimes

But it doesn't look like there is anything "wrong" with them, so I have to explain to others, at work, at a medical appointment, why it's hard.

Lame things hurt..

Like counting money for a long time (Think a lot of singles)

Or when the paper bags at work are sticking out from the shelf and poking me in the hip where I have had four surgeries.

Sometimes it seems like I am just complaining, but in reality I'm in pain and asking for help.

CP is a lot.......these little things add up to a lot and the pressure to stay positive can bear down on me.

Because I like to think of it as no big deal, I'm used to it.

Some days though I want to be able to have more endurance, to wear the cute shoes, to not be in pain over lame things or not have to express my pain at all as opposed to wanting pain to be understood.

At least I give life my best

Confession: I read too much

I read a lot. Probably too much, especially with apps like Kindle and ibooks for ipad. I don't even have to go anywhere! Order with one click? Sure!

A Sampling of what I have been reading

How to be a sister: A love story with a twist of Autism By Eileen Garvin (Hilarious! Tears rolling down my face!)

A dog named Slugger By Leigh Brill (Want to read a book about someone similar to me, except I never worked a service dog? Her attitudes concerning CP are similar.

Retail Hell: How I sold my soul to the store confessions of a tortured sales associate By Freeman Hall (Pretty much like grocery store customers, except upscale)

Up from the blue by Susan Henderson (Sometimes I read fiction with sad themes)

You don't look like anyone I know By Heather Sellers (Read about it in a magazine.)

Sing you home By Jodi Picoult ( I read Jodi every year)

As far as the siting goes, in college I was taught to only capitalize the first word in a title, and by the way I don't necessarily favor amazon, but it was easy to link the books that way.

Small steps

I have a tendency to want everything all at once. For example, I want to be more social and have a better job and move out on my own, and I would like it tomorrow. But changing your life takes smaller steps. I recently found out that going to bed earlier and waking up earlier changes my whole outlook of the day. I feel more awake and that before work I am able to accomplish more. This will lead to more job searching online, and more time spent writing, leading to perhaps a contest entry or two. I want my life to change dramatically, but first I have to start out small.

I should have said No Thanks, or that I am 13

A number calls my house every day. So I decided to pick it up and they tell me I am getting a Boston Globe This Easter. mmKay. Then I have to talk to the supervisor and all of a sudden I am being signed up for a paper that is five dollars a week. Something about the Sunday coupons! I don't even clip coupons, as I can never find anything that I want to use, and am not swift with scissors. I am not even head of the household, really. I am what you would call at times "The only one home in the household." What is it with subscribing people to Newspapers, after telling you that they are sending you the paper this Sunday and to look it over? I probably won't read it. People don't have money these days to just give to newspapers they will not read because they were sneakily signed up for them. And to think I could have just said no to the fact I was over 18 (Actually that would have been so 11 years ago.....but it would have been worth it.) and avoided the whole thing.

Would I want to change the fact I have CP?

I have considered this question, and the answer is no, because right now it's not possible, and because overall, I am happy with who I am. A lot of the decisions are made for me. I know my limits and I know my choices and so in some ways my life is simpler. Also I believe the choice that I make is to focus on what I have rather than what I do not have not just for optimism but for my sanity. I can't think about what could have been because the fact is, I wasn't born full term, I wasn't compliant with an exercise program when I was younger, and I was more afraid to try new things. The only aspect of my life I can change is to make life the way I want it now, and now that I am thinking of that fact of life I think it's the same whatever a person is facing in life.

Dare I?

Dare I look into the bare places of my life instead of

focusing on the thriving overgrowth of love?

Linger in that emptiness for more than say a second

to focus on what I really want

that I don't already have?

Dare I want, dream, envision a life not with a register,

an apron, paper, plastic or reusable bags?

Without regard for missing my favorite tv show if I socialize

Escaping the familiarity of the IM and the email?

Yes

Time to Dare

Cute?

So, I don't have a picture on here, but I have been called "cute" many times. It's just the look I have I suppose? So I'm visiting my Grandma in a rehabilitation facility, an the CNA passing by said "Oh she is so cute!" I said, "Who me?" Yes, she was talking about me, but it made me think. It didn't feel particularly good, positive. Might as well have called me a baby. And I don't want to seem ungrateful but it's not even like I had my hair in pigtails, my hair was done and I had makeup on. So sure, I was with my grandma, and I tend to fall into the cute role when I am with her. Maybe I always need to wear a business suit.

It's Poetry Month!

Dear six year old self
Your determination was amazing
I wish I could have told you then what I know now
Your smile lit up the world
And your strength, how you just
Told yourself to be strong
And not to cry
You sat there and you got blood drawn
Not a tear
But if I could go back and do it again
I would have rather cried
Expressed
Educated
Forced people to understand
But I am glad that my smile lit up the world
And it still does

A friendship that defies face-to face contact

When I was in high school, I started talking to teens online through the aol health boards. Then everyone from the CP boards grew up and we just didn't post as much but through these boards I received an email from a teenager, when I was 20 years old, asking if we could be pen-pals since my posts stood out to her.
And so I said OK. Seven years later, we are still each other's cheerleader. Through PT, through her high school and college and my graduate school years, we coached each other on. Remarkably,
We are both lefties. One of her siblings was born the same exact birthday as mine and her mother and I have the same birthday. She inspires me to give and I inspire her to be herself, and then because of that, I'm okay with myself too. I want to do more, more more because I know despite everything I have gone through I have a great life.
Thanks, Molls
Thanks for being you.

just wondering

If something happens, say a person is upset, and another person walks in and asks are you okay is it ever okay to say no?
How about if you fall down, is it okay to say no then too?

A weight lifted

In 2007, I enrolled in a Master's of Science in Education program. I excelled in my classes, all but one, the computer class that was required. I looked it up online, I purchased web addresses, I purchased software, I sent emails for help. But after many years of frustration and also embarrassment that I did not yet complete the class therefore not receiving my master's. I finally called the instructor and explained that I had tried multiple times to finish the website, the final project, but due to my fine motor difficulties, and the fact that I could not easily attend additional classes in order to complete the project, I asked him what he thought I should do. He gave me credit for the course and so, now, finally:

I can say I have a Master's in Education

What I want to do with my life? Buy sneakers!

....I'm kidding!
As I think of my life, and what I am good at, and what cerebral palsy does not affect, it comes back to the same thing: writing. There are a lot of blogs by aspiring writers, but writing is what I do best. I don't feel the struggle when I am typing on my laptop. Writing is not a laborious task for me as say, walking a long distance. I love words, I love watching people interact, I am fascinated by families. I don't know what this revelation will lead me to. But I am thinking that perhaps this is the beginning of what my life should be.

Half full, half empty

If a person were to ask me about my life, I would say It's great! I love my pets, my nieces and nephews love me, and I am fortunate to have three living grandparents that are relatively healthy. I'm smart and friendly, I know who I am, and I am a force to be reckoned with.

Yet, when talking about abilities concerning employment, I tend to mention my shortcomings. My organizational skills leave much to be desired. My brain tends to quit when I am overstimulated. I have trouble focusing on many different aspects of an issue, forgetting some aspects. I work slower than other people. What gives? I don't understand how in general I have an optimistic attitude and I even own a" half full" T shirt from Life is Good. But in talking about potential employment, what a downer I can be!

The one aspect of CP I cannot talk about and avoid thinking about

is Driving. I avoided emotion about the subject for years. I simply would not feel, pushing a thought out of my head. Because I couldn't feel how I truly felt about it. I couldn't feel like driving would be impossible. That's just not me. I don't usually think tasks are impossible. Also, I know that it's not the end of the world, I know there are other things I can do, and that a lot of people can't do a lot of the things I can. If only I could get to work via poetry writing or playing a trivia game, I would be set. Part of me wants to try and the other part cannot stand to think about the fact that if I tried and it didn't work out anyway. My heart could not take it. Public transportation is not fabulous where I live, but for now I enjoy being near my family, and I think the biggest obstacle I face concerning the driving is the feelings I have about not driving, how trapped I feel. It may seem lame, but the pain I feel is real.

What Testing Felt Like

I realize
This poem may be written from a point of view of someone that has been analyzed a lot.
Walk over here.
Get an xray of this.
Draw this
Count backward by seven from 100
You are too sensitive
You need therapy
Well if you are on medication already maybe you need another.

The testing room's walls bored me.
claustrophobia
Familiar looking boxes of subtests
Being asked to bare all
so I do
I cry and I know in the back of my mind
she will write this down in the report
But I can't stop it
This room is boring.
I'm missing work today
My foot is protesting and telling me to go to the doctor
and I don't know it now but tomorrow I will get a boot and miss a week of work, having to use my walker in the house
But right now my foot tells me
Don't sit too long, stand too long, walk too long
This test amplifies all of my disabilities
Why don't I just wear a sign that lists my difficulties for crying out loud.
At this moment I don't feel like my mother's daughter, a giving friend
a fun auntie.
I am a testing subject sitting in a room with no pictures on the walls, and maybe one window
performing tasks I have done before
getting frustrated and knowing I am being watched and judged for my frustration
But I cannot help it.
I bore all in that bare room with no hope
I kept it real and if it was below average, if I was too anxious
If I cried too much
That's how it was.
That's how I felt in that day in November, even if I didn't feel that way a week before.
Because the fact is, sitting in a small, nondescript room, answering questions about things I don't like to talk about, for hours, to someone I have never met, knowing how people perceive me
is difficult

There is only time for love

Sometimes I think I get lost in the day to day, the coming and going. the losing and finding. In doing so I fail to realize that love is the only thing that really matters in life. I followed a blog for a while at 65redroses.livejournal.com. Eva posted her good bye video about a year ago. This video taught me that while becoming aggravated is natural and a given in life, time is of the essence. She taught me that there is only now, so say what you feel and love as much as possible. To do as much as possible, with a sense of urgency.

In a few days I will turn 28. It's time to expand my circle of friends. While I am a friendly person, I generally only socialize with a few people, the rest of my aquaintances saying "Oh someday we will have to do....." But then life goes on, and I don't or the person and I don't. I want this to be the year I expand my life. Go out more often, resisting my urge to give in and nap on the couch. I also would like to job-search effectively. It's time to move on. For one thing, the uniform I wear to work is ugly and for another, I'm not being my best self by staying in a place where I won't grow.

It's time for more.

How I got my laptop down the stairs

1. Put the laptop on the ground

2. Sit on top step

3 Put my laptop on my lap

4.. Lower myself down the stairs sitting down

Times like these, although they remind me I have cerebral palsy, just show me how resourceful I can be.

Ideas for products for people with disablities

• Easy button shirts and pants
  
• adaptable Make-up tools
• fashionable shoes that are soft yet supportive
  
• Equipment that eases lifting and pouring for cooking
• Software that corrects handwriting and spacing
  
• Binders and folders that make it easy to put papers in, and take them out
• Mandatory accessibility for gyms and health clubs
• Dentists and Orthodontists that are familiar with the dexterity issues of the hands and fingers.
• Exercises in magazines that everyone can do
  
• Validation that the experience of having a disability is not quite the same as not being good at sports or math, and actually having a disability is different from having worked with people with disabilities.
• 
  
• I don't want to feel like I must pretend CP isn't there.
• 
  
• True fairness. What I mean by that is, instead of saying a workplace would not give me a set schedule for me to be able to schedule the bus because it would be unfair to everyone else, a workplace would recognize that I need to schedule the bus because I cannot drive, walk to work, or use a regular city bus, not just because I feel like it.
  

Why I never thought I would blog

I never thought I would blog because I don't think of myself as an extraordinary person. I'm just a petite gal from a big family in suburban Connecticut working at a supermarket. I'm not particularly neat or artistic, or mathematically inclined.
But here I am, because I feel there is a place for me, even though I don't stick out as someone who is really great at one thing or another. I like to write and I'm really great at being human. I try to never mispronounce or misspell someone's name, remembering their favorites, (For example, my niece loves cucumbers, my nephew loves the color orange, and a friend at work loves the Atlanta Braves because at age 11 she saw them on TBS and loved the colors.) I'm always asking if anyone needs a snack or drink at work, as I don't want anyone to be hungry or thirsty and it is totally possible to only bring money for say, a drink but then you are really hungry on your break.
I have been through some experiences some people have not because of cerebral palsy. I've had surgery, I've experienced general anesthesia, I've learned to walk a few times. But I have also rocked at Spanish, stunk at math, became decent with Math, passed tests on the first try and had to retake a test. I've won awards, I've been overlooked. I've been strong at work and I have cried from frustration and not even felt bad about it.
I'm here and I may not be 100% inspirational all the time, but I have a voice that can speak to a lot of people.
I want to start using this 'voice' more as I blog.

Difficulties

The hardest thing about cerebral palsy is that 1) Ordinary tasks that don't look hard are hard for me. Opening a cereal box for example, requires careful effort, but usually I do not put forth this effort as I hungrily rip the flaps on the box.
Pouring drinks: If a jug seems heavy, it's hard for me to pour it, or my wrist shakes with the effort. Luckily, my younger brother is happy to oblige.
Unwrapping coins of change: Bang against the side of the tray? No thank you, this causes the change to go everywhere, causing more sorting to occur, and so I carefully unwrap the rolls and may leave the paper in the drawer.
2) I may have worked really hard but it does not seem so. Sometimes looking at my workstation I may look like a hot, careless, mess. But maybe it was busy and I was having trouble putting all of the tenders in the teeny slot. Sometimes it feels as though I cannot try harder, don't ask me to, I can't do it. And I don't like to say I can't try harder but I suppose what I really would like is for some understanding.

What I want people to know

• Just because a person has a disability and works at a supermarket does not mean this person is a bagger
• Just because a person has a disability does not mean that at 16 he or SHE did not go into a store and fill out an application on a whim to see what would happen on her own without any agency help.
• People with disabilities can, in fact, pass difficult, required standardized tests such as the PRAXIS II

Things are possible, I learn this more and more every day. On a bulletin board I saw a basketball team at a gym advertised and I thought of signing up. Yesterday my niece wanted me to dance this dance she choreographed as only an enthusiastic three year old can. She said "You can try it." And then told me "You're doing great!"

An epic journey.......Or "Making a smoothie"

Step 1: Get the milk out, and then you close the fridge on your left thumb and then spill the milk.

Step 2: Clean the milk
Step 3: Pour in milk, yogurt, frozen strawberries, and pineapple.
Step4: Blend
Step 5: Pour, and spill so that the smoothie goes down the outside of the drawers.
Step 6: Blend again but spill more putting it in there.
Step 7: Pour, then become tired of working on the smoothie, that one just puts the remaining chunky liquid/solid in the fridge.

Before you ever tell someone to stick it out

Let me tell you something no one ever talks about

There will be times in life where you have feet of lead,

You can't get out of your own head

Energy may rev a little, but still feel like you're experiencing a treadmill

I never knew this before, thought I could have fought through it all

But sometimes..it's just not meant to be

Things are possible

I attended the Uconn Women's Basketball game versus Louisville in Hartford, CT at the XL center w Something clicked within me.

Granted, I am five feet tall and already completed college. But it was just so much fun and I realized: I sell myself short. I looked at the court and said to myself "Hey I could run that; it doesn't look that big!" I pictured myself stretching with the team.
Another reason why I have been stuck in this post-college/grad school cashier phase is that I always wondered, "What have I accomplished to really say to people 'I made it?'" But it's not about specific achievements or even about myself but drawing other people out and encouraging other people to lead fuller lives because I am an encouraging person.

I often say to myself "Oh I don't like crowds" or "Oh it's too much walking."
Now, I'm not saying that Hartford, CT is like NYC and seeing a Broadway Show.
But I am saying, without my walker, just using my brother and grandma for supports, I did fine. I should not just count myself out but encourage myself to go more places, and even to be athletic