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Its all in your attitude…

27 Aug
Frustration is an emotion we regretfully indulge in each day.  We allow the little things to get the best of us, bringing out the ugly demons we so often try and shackle.  But, sometimes the overwhelming amount of frustrations explode.  As it explodes, words and hollers slip our tense lips and our eyes glaze over as if we’ve been possessed by another being.  Frustration isn’t typically aimed at any specific target, but it can land upon the innocent. I try not to take my frustrations out on those I love or the strangers I often come across.  I’m not saying I’m perfect.  That would be a false statement, but I try my hardest to remain calm and collected and deal with my frustrations in a logical manner.  In every negative I try and find the positive.  Even if the positive is so small that Google map cannot locate it, I still try and look past the negative. 
 
Being disabled can cause a life full of constant frustrations.  I know first hand that its very easy to get sucked into the “poor me” mentality, like a big black hole.  But, I am a strong believer in happiness is all in the attitude.  One has to choose to see the brighter things in life, rather then the dismal.  And even when I do become frustrated for valid reasons, I choose to smile and move on.  If you allow it, frustration can be a temporary emotion.  If not, you choose to be stubborn.  It will linger and eventually run your life to the ground.  Frustration can turn to anger, and then to resentment.  That is not a life to be lived.  As a matter of fact, that is not living at all.  A life full of negativity is not healthy for ones soul.  If you cannot change the situation, why get frustrated?  Take what has been placed before you and turn it into something good.  People are just as happy as they make up their minds to be.  
 

Why am I writing about frustration and ones attitude?  The answer is simple.  I’ve been inspired by a few things recently.  I’ve had to face many of my own frustrations with my disability.  I’m been cold towards those who have stuck by my side through thick and thin and I’ve noticed my frustrations have caused me to grow introverted at times.  So, I’m working hard at not worrying about the “what ifs” in my life and just go with the motions.  My frustrations are no ones problems, but my own and I cannot take it out on others. 
 
This summer has been very eventful for me.  I have surrounded myself around people I love and have made great memories.  I have been to many gatherings, which requires me to figure out transportation.  I own a disabled accessible van that has a ramp for my wheelchair, but I cannot drive myself because of my physical situation.  So, I have to rely on friends, family, or caregivers to drive me to where I need to be.  But, sometimes I cannot find a driver, which leaves me to rely on Access Para Transit (a public taxi service for the disabled and elderly).  I (and many others) have a love/hate relationship with Access Para Transit.  The pros of Access is that the ride cost no more then $3 each way, they take you all across the Los Angeles County (which is a lot of ground to cover), and it’s a easier option of transportation then the bus.  The con of Access is that Access runs like a bus and has share rides (pick ups/drop off of other passengers on route).  So sometimes, the ride that would usually take 20 minutes can turn into a ride for an hour or more.  And sometimes the passengers are not the nicest or they smell. 
I know people that have expressed their frustration with Access.  Whether it be how late they are running or how the driver didn’t pick them up and so on.  But, my luck I haven’t had a bad experience yet.  And I probably just jinxed myself.  Maybe its because I don’t send out negative vibes saying how much I hate Access.  The way I look at it is we are lucky to have a service that will drive us at such a cheap rate and if they are running late you have to consider the drivers route and traffic.  I’ve seen on many occasions passengers roll up to the van and the first thing they say is, “you’re late!”  The poor driver cannot win for nothing.  I usually always greet the driver with a smile and a friendly greeting, no matter how later they are or how tired I am.  The driver does the best he possibly can do. 
 
 I’m typically not a confrontational person.  I am an opinionated person, but I know when its best to pipe in.  Last night I finally met my match in the Access Taxi.  I had just been picked up around 12:30am up at Universal City walk and we had to pick up one passenger down the street before dropping me off at my house.  Luckily the other passengers pick up wasn’t far from city walk, so I knew I’d be home soon enough.  As we drove to the next pick up, I was happy, reminiscing the fun times I just had and enjoying my nice buzz from my Dirty Shirley.  But, as we pulled up to the next stop, my happiness had diminished quickly. 
 
A middle-aged woman hollering in pain cut my buzz short.  She was ordering people around as if she were in charge.  She quickly  transferred herself out of her manual wheelchair onto the back seat while yelling, “take me to the hospital, my foot is swollen!”  To my assumption, she broke her foot.  She then asked the driver who was being dropped off first and the driver told her that my drop off was first.  She started cussing and putting down the driver and threatening to report him, while calling me a bitch.  And right then, I had to say something.  Not because she called me a bitch or ruined my buzz, but because she was taking her frustrations out on the innocent driver.  So, as to my attempts to put the middle age woman in place by telling her that Access is a taxi and not an ambulance, she then tries to say I’ve never felt pain.  I laughed at her and said, “Yea because you’ve had 10 surgeries in 19yrs”.  She quickly changed the subject.  She whined about having to drive 10 minutes into Burbank and if she’d known she would have had her neighbor drive her to the hospital.  I do not understand why she waited “2 hours” for access if she had another way to get to the hospital.  Though I know her excruciating pain fueled her frustration, I couldn’t allow her to be rude.  I told her she was being rude and shouldn’t have put the responsibility of her pain on the driver.  I’m not sure if she got the message, but I did get her to shut up. 
 
 I’ve been guilty of taken my frustrations out on those who help me, but I honestly try my best to stay calm and respectful to others around.  And, if I am rude or snappy I admit fault and apologize for my behavior, which the lady did not.  It’s all in the attitude.  Be grateful for every situation, whether it is bad or good.  It’s all mind over matter.  

A Conversation With A Cloud

22 Aug

Today I had a conversation with the clouds.
It was as if pillows were placed across the dusk sky to put the sun to rest.
They crashed together forming pictures to tell a story.
The suns fluorescent rays bounced off the cotton stroked edges.
Battling against the night that crept behind.
The stars acted like bullets, shooting the sun down the horizon of the sea.
The tales that were told were anything but boring.
And as I slithered through each city with a stranger navigating my way.
I grew forgetful of the concrete traps and more thankful for this beautiful day.

Aren’t there any real MEN out there?

20 Aug

When it comes to romantic relationships, I am as innocent as one gets.  I am not ashamed to admit that I’ve never had a boyfriend, much less been on a date.  Along with my long list of “never”, you can add the physical aspects that go into a romantic relationship such as never being kissed or being sexually promiscuous.  I figure since I’m only a few weeks shy to my twentieth birthday, I’m still young and I have time to experience love and find my soul mate.  Sure, I have my days where it completely sucks being single to the point of wanting to send a bullet straight between the eyes of any happy couple.  But, for the most part I wait for my time and just enjoy what life throws at me.  I’ve been trying harder to be more outgoing towards the male species.  For the longest time I’ve held my guard up because I figure no guy could possibly be interested in a girl that is as physically disabled as myself.  To deal with the frustrations, like mentioned above, I’ve decided to make a documentary about the dating life of the disabled community.  So far, I have found answers and confronted fears of my own that I never thought existed.  I feel the process of making this documentary has encouraged me to look past what I typically wouldn’t do or say and take a chance with love.

I’m not sure if its a coincidence or if I send off a vibe to guys like a cat in heat, but it seems like recently I been receiving more attention then necessarily wanted.  Though you would think I would want to check a few things off my “Things Chloe Has Never Done” list, I am not going to settle for anything.  I have needs and values too.  If you know me well, then you know I am against dating anyone who is disabled as well.  I’m not judgmental.   I’m realistic.  I know the work that would have to go into a relationship with two disabled people, especially if he is physically worse then myself.  A few men in chairs have approached me online and I respectfully decline their flirtatious messages and continue on my way to find someone more suitable for my needs.

In April I met a guy at the Abilities Expo in Los Angeles.  For privacy issues, lets call this guy Larry the lecherous.  He is in a wheelchair as well.  From what I remember, Larry is a paraplegic (paralysis of the legs and lower body, typically caused by spinal injury or disease).  I’ll admit, Larry wasn’t hard on the eyes.  Sure enough, we became “friends” on Facebook.  Because you can’t be friends till you are friends on FB right? We would chat periodically about random things or he would send me encouraging messages to keep up with my art or tell me how beautiful I was.

Out of the five months of knowing one other, after only meeting once at the expo, Larry begins to call me on my cell phone.  The first time Larry called me, it was at 4am.  I didn’t notice I had a missed call till that morning since I was probably having hot dreams about some other guy.  I thought it was odd for Larry to call me at such an hour since we’ve never spoken on the phone prior.  We continue to play phone tag for about two weeks.

Then finally I happen to answer the phone when he called.  I could tell Larry was uncomfortable making dialog with me.  So, why call in the first place?  Of course I fall in the role of carrying the conversation.  Then, I give him a chance to talk and he asks me a question I dread.  “Why are you single?  Or do you have a boyfriend?”  I always answer by replying if I knew why I was single I wouldn’t be.  With that said, Larry awkwardly asks me out on a date.  Like I’ve mentioned above, I’m not pro-cripple dating, but I was willing to give Larry a chance since he seemed to be sweet and his disability wouldn’t be an issue to me since he had upper body strength.  We agreed we would go on our date later on in the week.  It was also a plus that he lives thirty minutes from me.  At one point he wanted me to pick where we would spend our date, but I made sure he got the point that I’m old school and if you invite me out, you better plan it.  He had also mentioned he would pick me up, but that was also a no-no on my list of things to never do.  I was a bit uneasy after hanging up with Larry.  I wasn’t as excited as I thought I would be, being that it was my first date ever going on.  But I figured it was nerves that this too shall pass.

Minutes pass and I received a text message from Larry.  Being the typical girl that I am, I saw his name and assumed the text would read something in the lines of how he looks forward to our date.  No, instead it read, “So, do you get physical Chloe?”  The naïve girl I am, wanted to believe he meant physical as in sports, since he just attended a sports camp, even though I knew he meant sex.  I’m going to spare myself from typing the whole she said/he said conversation and just get to the point.  Larry continues to tell me how he wants to “go down” on me.  So sure, you find me sexually attractive.  I can’t get on a guy for feeling that way.  I’ll just be sure not to have him pick me up for our date.  I made sure he understood he wasn’t getting any of my goods because I’m not that type of girl.  He perceives himself to be an innocent Christian man on FB which then irritated me more by what he was saying.  Cause you have to ask, What would Jesus do?  He sure wouldn’t tell me how he likes to “go down”.  I hesitated his religion would be an issue if we did date since I am not religious.  Then I find out he’s 39 years old.  Thats 11 years younger then my dad, 20 years older then me.  So not only is he an old man, but he’s a perverted hypocrite. CREEPY!

I have never been so disrespected or creeped out by a guy in my life.  He said I should feel flattered that he wants to be sexual with me.  In a odd way, I am but not.  If he was more respectful then definitely.  But, he moved way too fast for my liking.  I barely know him and he thinks it’s appropriate to talk like that before our first day.  Even after I tried to change the subject he tells me he wanted to know if I knew how good it felt.  He also had the great idea of me painting while he “went down” on me.  Yuck! Not that I’m against anything sexual, but let me get to know you first before you try and get in my pants.  I knew from then on this guy was a creep and there was no way I was going to go on a date with a guy that thought he could talk to me in such a manner.  I respectfully took back my acceptance to his date offer and told him the sex talk was creepy, being we only met briefly.  I don’t understand how anyone could possibly be ok with talking like that.  If you want to get laid I’m not the girl to call.  I respect myself too much.  So now, he’s probably at home pissed off because seeing that I blocked him on FB and our date is not happening.  His old ass just got dissed by a 19-year-old girl.  Don’t mess with me.  You’ll regret it!

So my question is, aren’t there any real MEN out there?  Disabled or not…They seem to all be the same!  Maybe they are all sexually frustrated!

You’ve Been Invited!

17 Aug

Its quite ironic how things play out in my life.  It seems like things always fall into place when I need a miracle to happen.  Like when I’m lonely and I get invited to five things at once.  Or when I’m broke and I get commissioned for an art piece.  And like recently, I’ve been dealing with the next stage of being a disabled woman.  And while I’m looking for answers for my future, something I never expected takes place.  I have been invited to participate in a clinical trial for Congenital Muscular Dystrophy (CMD) through CMD International Registry (cmdir.org).

“Definition of CMD: A class of muscular dystrophies that show themselves  at or near birth. Muscular dystrophies in general are a group of genetic, degenerative diseases primarily affecting voluntary muscles.” -www.mda.org/disease/cmd.html

What is Muscular Dystrophy

Gene Discovery in Congenital Muscular Dystrophy:

Purpose of the study: Dr. Peter Kang and his laboratory at Children’s Hospital Boston hope to identify new genes that cause congenital muscular dystrophy (CMD), using modern genetic tools such as linkage analysis and next generation sequencing. This study is a component of the Harvard Neuromuscular Disease Project.

Eligibility: Patients with CMD and their family members who do not have a genetic diagnosis known to date. Special attention will be paid to individuals who have already been screened for one or more of the genes known to cause CMD, but others will be considered on a case-by-case basis. Enrollment from outside the United States will be considered on a case-by-case basis.

Participant commitment: Individuals must be willing to provide family history, medical history and a saliva or blood sample from which we will obtain a source of DNA. Enrollment can be done in person or by phone with the study coordinator/genetic counselor. . Additionally, we would like to obtain a portion of muscle tissue from a previously collected muscle biopsy or from an upcoming clinically necessary surgery. A biopsy procedure to participate is not recommended. If no muscle tissue is available , enrollment will be considered on an individual basis. All research participation may be done remotely, and no travel is needed.

Benefits of participation: Participants should not expect a direct benefit from participation in this study. Participants will be contributing to research, education, and possible discoveries in the genetics and therapeutics of CMD. Participants have the option to have their individual results confirmed through a local health care provider. The cost of conformational genetic testing is the responsibility of the participant and/or their insurance company. If participants choose not to learn individual results, study results as a whole are always available to any participant. All participants will receive a yearly newsletter to keep them updated as to study progress.

I’ve always known my body was better used for research, rather then my personal canvas to tattoo.  I’ve known for the longest time that if I were ever to be offered a spot in a clinical trial, then I would consider it immensely. Lately I’ve been having mixed emotions about my disability.  I’m sure those who are disabled will agree with me when I say that being disabled is a blessing and a curse.  I have never wished for a cure because I am content with my life, even through the hard times.  I won’t lie and say I don’t have my days where I wish I didn’t have to ask for help and do things myself, but I have more moments that are filled with happiness and love rather then depression and anger.  If this trial were to give the researchers more facts to hopefully better the lives of the next generation or give my family members, like my two older brothers answers about their concerns in having children of their own, then I would proudly be a patient.  But, I would not go into it expecting to gain my strength back or be able to start running marathons.

What my muscles look like

About two years ago I decided it was time for me to write up a will and sign a DNR.  At the age of eighteen, this was a lot to take on.  But, I did it on my own and was not coerced into it.  I’ve always told myself that when times get tough, I do not want to be resuscitated or put on life support.  This is my choice.  It was a hard choice and even harder to admit it to my parents that their little girl has made that decision without discussing it with them.  But, life is hard enough on them and myself with the limitations I face now, I cannot image being in a worse state.  The next decision I had to make was what to do with my body once I pass.  Sure, you could burry me and visit my burial once a year and then go one with your life, or I could donate my organs to those who need it.  Doctors have told me that my eyes were perfect for a blind person in search for a donor, but the rest of my organs are probably to weak to do anything with them due to my disability.  So, the next choice I made was to donate the rest of me to research.  If I can continue to change the world once I am gone, then that is the greatest thing to know.  It doesn’t make death look so bad.

I don’t do anything for myself when it comes to research and my body.  I immediately think of my brothers, then my parents and then the young boys and girls in the world that have it worse then I do.  My body is just a body to me.  It is not something that defines me.  This disability was brought upon me because I am one of the stronger ones that can admit I know what I want and I am not afraid of sacrificing certain things or going through pain to better the lives of others.  I expect nothing in return.  And the best result to me is knowing I tried.  So, I contemplate whether or not this is the trial for me.  I have some questions I need to ask and whether or not this will be conflicting with my many projects such as my documentary.  But, at the same time, this may be a good thing to document; the life of Chloe Blohm.

It’s really hard to explain how I feel about this subject without sounding cocky or that it doesn’t affect me.  It does affect me.  But, I cannot allow myself to ever become hopeful that my life will be more than living in this wheelchair and depending on others.  CMD’s progression varies with type.  Many are slowly progressive and some have shortened life span.  These diseases are sometimes inherited through both parents and sometimes inherited from one parent. They can also occur spontaneously because of a newly developed genetic flaw (mutation).  So maybe the trial can give me a longer life span or not, but I am looking forward to finding out more about this clinical trial.  Maybe this will be the beginning to something new and life changing.

My Mother is On Facebook

13 Aug

To the left is a picture of my mom as a baby.  I absolutely love pictures.  Especially if the picture is old, as if each rip and wrinkle tells a story.  I am hoping once my mom gets her new Laptop at the end of the month, she’ll start blogging as well.  Her stories are amazing.   And if you were to sit with her for a while and really got the chance to know her, you would understand why she is who she is.

Its beautiful, that bond a child has with a mother.  But, it’s even more amazing when you consider her to be one of your best friends.  I’m not embarrassed to say I love my mom more then life itself.  I’m not going to say my mom has never embarrassed me, but it takes a lot for her to do so.  As a kid, I always remember my friends and I having such comfort around her to always be ourselves.  She always treated me like a mini adult.  She gave me choices in life and allowed me to pave my own road.  She has been my rock, and I believe in some ways I’ve been hers as well.  We share a bond that I’m sure some find odd.  But I do not care.

My mom has always been close to me.  We’ve have been through hell and back.  She has sacrificed a lot to make sure my needs were met.  She has sat for hours in hospitals with me and has wiped away many of my painful tears.  Granted, every relationship has its up’s and downs, but nothing could ever make me forget the times my mom has held my hand or made me laugh in my hardest moments.

My mom is quite the character.  And whoever knows her to any degree, will agree with me.  My mom is witty, fun, driven, compassionate, honest, opinionated, silly, wise, beautiful, talented, crazy and free spirited.  She is everything and more.  You can’t not love her for who she is, even if you don’t always understand her.  And the older I become, the more I see her in myself.  I believe I get my love for life from her.

My mom is my friend on Facebook.  I approved her friendship without hesitation when I first made my account back in 2005.  And prior to Facebook, my mom was my friend on Myspace.  You would think I would dislike the idea of my mom seeing every detail of my life for her to analyze and later become disappointed in me.  But, the truth is, I could never withhold information about my life from my mom because I value her opinion.  And she never shows disappointment in me, only love.  And though I may not agree with everything she has to say, I still listen with an open ear and save her advice for later.

I remember when Facebook was just becoming a big fad and a bunch of my friends were complaining how they were upset their parents were befriending them and their friends.  I’ve always been the opposite.  My mom was always welcome to be my “friend”.  I mean the least I could do is add her.  She did pop me out of her vagina.  So without her, I wouldn’t even be on Facebook.  I would be non-existent.  And, the funny thing is that my friends ask my mom to be her friends.  Well, that might just because she’s a hot momma! Does it irritate me? Not at all.  She’s a big part of my life and I have nothing to hide from her.  I’ve always believe that if I’m doing something that I’m too embarrassed to tell my own mother about, I shouldn’t be doing it in the first place.  Sure enough, my mom is usually the first to “like” or comment on anything half worth writing on, but I love it.

I’m not saying my mom and I never get on each other nerves or that we don’t argue.  Trust me, we do.  I am a very opinionated and strong-headed woman as well, so we can get heated.  The older I become the closer my mom and I grow.  I moved out for 2yrs to live with my dad, hoping that would be a good transition for me to later live independently.  But, we had no idea the cost it entails for a disabled individual to live completely independent. And since my dad was moving out of the L.A area, I decided it’d be best to move back in with my mom as a roommate/caregiver situation.  It wouldn’t be like the mother/daughter arrangement we had in the past.  Now that we both have independent incomes, our own social lives, and a great bond, life has never been better.  I’ve always considered my mom a friend of mine, but now, we hold no expectations of one other.  I’m sure some do not agree with having their mom so involved in their lives, but I don’t see her as a mom.  Of course she’ll always be mom, but she’s also a friend.  She is not an image of me, nor am I a image of her.  But I am proud to be called her daughter.

My mom is one of a kind.  It takes a certain person to keep up with her.  But, I know this much, she has a genuine heart.  She doesn’t do anything out of spite and she takes responsibility for herself.  She has taught me to be the person I am today.  And, even in her own mistakes, she has taught me what not to do. We have both grown individually while apart for those 2 years.  Living with her again for the last 4 months has been better then ever.

My mom may not be the perfect definition of what a mom should be, according to others.  But to me she’s everything and more.  I know recently she feels like Facebook isn’t for her and she’s considered deleting her account.  If she were to leave I would miss her virtual friendship.  Even though she’s in the next room from me and I can “poke” her in person. I wish everyone would give their mom a break.  Because like my mom always says, “I was cool before you were!”

Go add your mom!

A Curious Mind

8 Aug

There’s a part that is lost inside.
A part that cannot be satisfied.
Perched on the edge of my thickest thoughts.
It can be lonely at times from this view up top.
I’ve painted myself in the brightest of colors.
Now I’m fading and growing tired.
I hung my sorrows with the strongest noose.
Surprising to find it slipping loose.
I thought I tied it ever so tight.
Exhausted from this brutal fight.
These feelings that burst forth are like tapeworms burrowing into my mind.
Nasty but truthful, not always kind.
Infestation, breaking down the foundation.
Eating its way from the inside out.
Curiosity defies death.
Challenging what the nieve resists.

Can someone please be strong for me now?

6 Aug

Sometimes the best way for me to completely express myself is to write it out. But, not in a journal for only me to read, but for the world to get a glimpse of what really goes on in my mind.  So, here I am writing about something very personal to me.  And, since I’m emotional right at this moment, I find it the perfect opportunity to be completely vulnerable and spill my heart out to all my readers.  And, I’m pretty sure my readers will not enjoy reading parts of this, because honestly I don’t like it myself.  But, there’s no failure in honesty.  This is my life…

This is rather difficult for me to write. I’ve stared at my screen for nearly thirty minutes now.  Just glaring at my screen saver of the Pacific Ocean that I took on a trip up the California coast.  (it makes me feel calm) I keep pausing, backspacing, and so on.  I know what I need to say, but I’m hesitant to let my guard down.  So, I sit her with dried tears upon my cheeks and thoughts racing at a thousand miles per hour.  I know that what I have to say is going to bring me a lot of turmoil, but I am ready to face any consequences that may come with my honesty.

Lately I’ve been pondering on my life.  As my teen years are a month shy to being over, I can’t help but to think of what is to come next.  Since my teens have come and gone so quickly, I now realize I didn’t enjoy those years at all.  For most, people my age have fond memories of first date, school dances, parties, hanging out with friends, and so much more.  And while my peers were out having the time of their life, I was sitting at home twiddling my thumbs.  I was never granted the opportunities to date or be invited to parties.  It was difficult for me to make friendships, which meant I had none.  Most of my teens were spent alone.  I don’t often talk about my childhood because I chose to block it out.  I was in and out of the hospital, I was lonely, and I was trying to find my own.  So, as I enter my twenties next month I try harder to search for the answers I so desperately need.

The older I’ve become, the more of a social life I have made because I have put myself out there.  I have put away my insecurities of people judging me and started living life for myself.  There’s no doubt about the fact that I am a busy girl.  I try my hardest to keep occupied so my demons don’t eat me alive.  With staying busy though, I am constantly thinking of what I have to do.  One of my worst flaws is that I am very detailed oriented and it’s hard for me to just go with the flow.  But, I feel at my best when I do what I love.  Whether that be writing, painting, or hanging out with my fiends or family.

Since I was never invited out to parties as a kid, I find myself craving certain experiences I have yet to experience.  Though some don’t agree with my choices, I’ve become a casual (if you even want to call it that) pot smoker.  I know you are either all in to it or not.  And I’ve found myself recently having to face some loved ones that do not quite understand that I enjoy the rare occasions as to when I do smoke.  I am a drinker on occasion and no one ever seemed to mind.  I feel as if pot has a stigma to it.  I’ll admit, my second time smoking, I overindulged and blacked out. I had mixed it with alcohol, which I had no idea I’d wind up like that.  It was terrifying not only to me, but for my friends who had to witness me in that state of mind.  I was unresponsive and viciously ill.  After that moment I internally shut down.  Those who have been reprimanding me for my choice do not understand that I took it as seriously as they.  But, I knew for myself that I have to learn from my mistakes.

I have smoked since then, without alcohol of course.  And I have to say I enjoy it.  The only way I can put this is, it calms me down when I can’t stop thinking.  What can I possibly be thinking about that would make it ok to take a few hits every so often? I think about my parents and how they have sacrificed their life to better mine.  My mom is my full time caregiver.  My dad is the breadwinner.  My stepmom as well cares for me.  They have all put aside their aspirations for me.  I think about my brothers and how I hate how they fear their children could have Muscular Dystrophy too.  I think about my lack of a  romantic life and my sexual desires.  I think about my future and eventually living independently without the help of my parents.  I think about death and how I know I won’t have a long life.  I think about how the world portrays me while keeping that image.  This is what I am constantly thinking about.  So, if someone wants to get on my case about how I drink or smoke every so often, then so be it.  Because some how, through the load I carry on my frail shoulders, I think I’m granted a nice buzz periodically.  True, I went over board once and I am ashamed, but lessons learned.

This may come off selfish, harsh, and bitchy, but I can no longer maintain a smile for those who love me.  I cannot avoid the topic of death because it disturbs some or that I am “morbid” for even wanting to talk about it.  I cannot stay strong for my friends and family.  Because I found that no one is being strong for me.  It seems like the topic of death sends my friends and family the opposite direction.  This is my reality.  So, while I may face certain situations like me blacking out, I feel obligated to apologize for almost killing myself.  But, why am I apologizing?  No one has thought to ask my thought on death.  If I’m scared of it or not.  And this is where I become selfish.  I am not afraid of death.  This thought has occupied my mind more then others.  It scares me that I am not scared.  Why aren’t I scared I wonder?  Is it because I know there’s something more then just you and me on this planet?  There are bigger things out there beyond our reach.  I am not trying to rush death and I don’t anticipate it, but when it does arrive I’ll greet it with open arms.

I’ve died once when I was ten years old.  I had flat lined in the hospital while recovering from surgery.  I saw the light, it does exist.  I can’t tell you if God was waiting for me, but I can tell you it was the most peaceful feeling I have ever felt.  I suppose being disabled, I see things differently.  Death isn’t the worse thing that could happen to me.  In my opinion, being stuck in a body and not being able to do all I’ve hope to do is death.  And, in the last year I’ve noticed my body weakening and I get tired quicker then I would have a few years back.  The thought of me becoming so weak to the point that I couldn’t paint is the ultimate death.  Life isn’t worth living if I cant express myself.  Though I have a bunch of people in my life that I love all with my heart, I would not be myself if I couldn’t do what I love.

I constantly feel like I have to live up to this image that people have painted me to be.  If I am not the bubbly Chloe everyone knows me to be, people tend to freak out and turn it on me.  Can someone please be strong for me now?  I cannot always be the logical one with all the answers.  I can’t always be optimistic.  I can’t always be strong, witty, and inspiring.  And every time someone calls me an inspiration, I feel the pressure even more.  I cannot always be what people want me to be.  I so often hide the depressing emotions that occupy my thoughts because my friends and family constantly remind me that they can’t live without me and I’m the strong one.  I don’t want to always be strong.  But, no one seems to notice that I am vulnerable, shy, lonely (romantically), frustrated, and guilty.  No able bodied person can come down to my level and completely understand my feelings.

I am expected to be strong because that is the role I have played for so many years.  But, I’m done being strong for everyone.  I need to be strong for myself.  I need to live my life as I choose and have the experiences I desire.  Whether that means some agree or not.  I have managed to become successful with my art.  I write poems that speak from my core.  I am a motivational speaker that discusses living life to its fullest.  I am going to start being an inspiration to myself, not to others.  I think I am doing something right in my life if I managed to accomplish so much in my nineteen years of life.   And while this was difficult for me to write, I felt I had to get it out there.  I am the author of my own life.  I will make typos, but I don’t regret them.  Life experiences make a person.  And all mine have made me that much stronger.