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still caged bird


CagedBird

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Yesterday I had a moment at work where I was fighting back tears. First of all last week a customer asked me what happened to my hand and told me she noticed because she works at the hospital. As I told her why I couldn't get anymore therapy, I felt like I needed to keep looking. Even though my doctor and his nurse couldn't find any providers in Charlotte that will take my dad's insurance, and I searched the website and called a list of providers myself, I just knew there has to be a provider in this city that will take my dad's insurance. So I dug a little deeper and found one. I have an appointment next Wednesday right after my neurology appointment. (Had another minor seizure Tuesday morning. Still remained conscious just woke up from my sleep and felt nauseous and felt like my head was shaking. I thought it stopped but then it started again. Next time I looked at the clock I had been sleep for a hour. )

 

So back to work. I met a lady on Thursday who was looking for a inspirational book for her mom. I was trying to help her find Joel Osteen books because she said her mom listens to him a lot. Then she told me her mom just had a stroke. I honestly told her "lady I read all the time and there are no books that can make you feel better about having a stroke. I had a stroke when I was 12. Im 24 now. Sometimes even when you want to be happy you just cant. Our brains have been rewired unfortunately and I cant think of any book that has made me feel any better." I gave her the only Joel Osteen book I could find and I was not trying to be negative. I just wanted her to understand surviving stroke is a process and it may not be that simple to cheer her mother up especially since shes gone the last 66 years of her life as "a normal-brained person."

 

So anyway back to why I felt like crying. I hate looking in the mirror. When Im at work I feel the public's eye drop down to my arm which refuses to straighten as Im using all my strength with my right arm to push the cart. Even when I try to use both hand to push I always feel like my hand is going to fall off so I move it. When I wear the wrist support people asks me what happened. When I dont wear the wrist support I feel like a freak show. I hear the announcer saying "look everyone not only cant she walk straight but her arm looks like a broken pole lamp. Come see this circus attraction!" Yesterday this girl that looked kind of "slow" asked me if my arm was okay. I told her yeah. She asked me if it just hurts. By this time I wanted to slap her in the face but I told her I had a stroke. She said awwww Im so sorry. I just stared at my computer screen and waited for her to walk away.

 

I thought of this song "Caged Bird". My wings are my arms. Im tired of everyone looking at me. I just want to be able to spread my wings. I posted the video with lyrics and lyrics. I know you guys said Im no longer caged bird since I've accomplished so much but anytime I go into public I still feel like this...

 

 

Right now I feel like a bird

Caged without a key

Everyone comes to stare at me

With so much joy and rivalry

They din't know how I feel inside

Through my smile I cry

They don't know what they're doin' to me

Keeping me from flyin'

That's why I say that

I know why the caged bird sings

Only joy comes from song

She's so rare and beautiful to others

Why not just set her free

So she can

Fly, fly, fly

Spreadin her wings and her song

Let her

Fly, fly fly

For the whole world to see

She's like caged bird

Fly, fly

Ooh just let her fly

Just let her fly

Just let her fly

Spread the wings

Spread the beauty

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When asked "what happened to your hand/arm" why not just reply "Why? Is it missing?" or "Which one?" and turn the tables on them. There is nothing "wrong" with your arm...you still have it...don't you!

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hmmmm.... well now... it looks like the only other choice for people who have stroke loved ones, is to ignore them, not try to do anything to help them feel better, and tell them they might as well give up, because their life stinks and always will. Is that the message you were trying to send? Listen to me, your bitterness is not doing you any favors. You need more anti-depressants so you can enjoy the things you are successful at and they seem like nothing, when depressed. I'll tell you something, my husband would be over the moon if he could read a book. It depends if someone is an avid reader, if they love to read, getting them a book could be a great thing.

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Katrina :

 

you need to accept the way your life is right now or you will never find happiness, and trust me no one likes to be around unhappy people. I strongly feel happiness is a choice & one can view same situation negatively. start writing things you are grateful for, I can't believe you will be so fixate on your left hand that you will not see what is still good in your life. your left hand does not define you though your attitude defines you as a person. I can't use my left hand either so I understand but you need to accept what is it is & stop ruining your present moment.

 

Asha

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You are the one that has put yourself in a cage, not the ignorant public that do not understand what has happened to you. They are just curious. Knowledge is golden, maybe you should use your stoke story to bring awareness to those out there that think stroke only happens to the elderly! Maybe God has put you in this position at work to be able to help someone else. Have you ever thought of that? Maybe the next person that asks you what happened to your arm you tell them that you stroked at the age of 12 and that they should read up on the causes of stroke so that if it happens to them they will know the signs and can get help before it kills them or one of their family members! Did you ever think of that? Not trying to sound mean. You are a beautiful and bright young lady. Now go out there and live life!

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i dont hate my life and im grateful for a lot of things i just hate how my arm/wrist/fingers look and i hate the way i feel self conscious about it. I used to think I looked normal but as the spasticity worsened over the years and now that I go out more I realized that I do not look normal. My arm is bent my wrist is bent my back is bent and I walk like Im tired 24/7 (which I am). Its not about trying to make myself happy. I can feel happy but that doesnt change the despair I feel about my arm.

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when you lash out at strangers on the job... do you realize you are putting your job at risk? The one that hired you saw all your physical problems, and chose you because they thought you were a real fighter and you could change their mind about that, if they begin to see you differently. You are not the only one suffering, horrible things are going on to people every single day, and they either rise above it, or it dominates every moment of their lives. You are not getting the help you need to function and not be miserable. Will your insurance pay for phyciatric sessions? You need help with all these feelings, and not getting it will keep you stuck in a repeat of the same bad self images and self consciousness. It's more than just trying harder, you have some deep self worth doubts and need help to be able to see thru them, to where you can concentrate on the things you can do.

 

I remember seeing this little girl on a tv talk show. She was in a wheel chair and totally spastic all over, as the result of her mother trying to abort her as a fetus. She was smiling and felt blessed to have made it alive. Ok, we all have bad days, so no one expects anyone to never have a bad day, but you have to get some relief from the constant emotional downer you feel most of the time.

 

>i just hate how my arm/wrist/fingers look and i hate the way i feel self conscious

 

- yea, I just hate how I walk like a penguin, rocking back and forth with painful feet, ankles, knees, hips - but you know what? I CAN walk, and no matter how crappy I feel on a given day, I know there are thousands of people who would beg to trade places with me. And there are thousands who would give anything to be able to be as functional as you, and do the things you do, and feel like a bird set free, just to be you!

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I had a hard time accepting me after my stroke. That I was't the same me and that I had several issues that were basically not going to go away. I was always constantly aware of any mistake I made, my strength lost in my arms..... my speech.... I do not think taking a pill is the answer. I take too many now. I have less trouble now as I have accepted me. It took me along time, and I did go to some counseling and it actually helped. And saying to myself that I am not perfect and not trying to meet some standard I set for myself and then feel like i failed . Because I was my worst enemy. I can deal with the others.

Terry

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Katrina, Katrina,

 

You are still so young in life don't down yourself, you got what you got and you Survived a stroke at an early age!

 

It's not like you were born like that and you worry more than the public does how it LOOKS. To your mind it stands out in public but YOU still got your arm. Your concerns are how it feels, pain or no pain not how you think it looks to others.

 

Some survivors like me being 50 years older than you have nothing but pain in the whole arm and side too.

 

Think about this for a minute...Soldiers here came back from Iraq and Afghanistan with an arm or a leg missing, you still got yours. They will never get theirs back. People lose an arm early in life tuck the shirt sleeve in their pants and keep on living.

 

I see women and men when I go to the VA without legs in a WC and pushing themselves with one leg, one hand on the big wheel until some able body person stops to give them a helping hand. I have heard them say sometimes "thanks but I can manage myself."

 

YOU are working, holding down a paying job and got both your arms. Sure one is paralyzed but you GOT IT. These soldiers arms were left in a foreign land fighting for your freedom to be at work in this country.

 

I went to work at walmart on a scooter, couldn't walk but they hired me and I did the job for three years before I got tired.

 

You are right there near Ft. Bragg Army post you said so look at those soldiers get around with limbs missing. They don't care who looks at them with no arm or leg! They are not caged up they can do what others do just not as fast if it takes two legs or arms they don't have. Don't down yourself, don't try to think what others are thinking, it doesn't matter!

 

Look at the guy that got burned badly face and body and hands on Dancing with the Stars...He got out in public and on national TV and won the trophy with his dancing partner. There are many others right here with me I see daily with their wife and kids shopping for school clothes. YOU ARE A SURVIVOR OF A STROKE you didn't die! Be proud!!!!

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Katrina, most insurance companies work directly with you. You call them and they pull up a list of any in your area. It may even be able to see the list online yourself. Doctors can't know everyone, but that's why you call the insurance company, they KNOW who is on their list.

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Katrina, thank you for your honesty. Every time you talk about how you feel about your arm it reminds me to have compassion for others, to try and put myself in their place, to feel what they feel. I hope there are people you meet who make you feel great, who look at you with affection, who share a joke or a smile or a story that says "welcome to my world". If you were here I would hope I could be one of those people. (((hugs)))

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Katrina, I want you to know that we do GET how you feel. None of the things we said came from not caring about how you feel or what you long to be like instead. Even caregivers have had their 'would have been lives' ripped out from under them. We are accutely aware of what our lives would have been like, and never will be like again. As caregivers, we are the cheerleaders that give our strokers peptalks and try to keep them positive so that they CAN achieve things and be able to enjoy what they have. I thank God that the rehab center he went to was a place filled with joy and laughter, otherwise, we would not have known it possible to laugh in the face of such losses, and feel joy again. Without us, our guys would, no doubt, be miserable, sitting in a corner, only thinking of all they've lost.

 

Knowing you have lacked the support from family & friends that you have always needed, we wanted to be that for you... to reach out and give you the support to find joy, like we have with our own strokers. We see the difference it makes in our guys, and only hoped to do that for you. I'm sorry you did not feel the care behind the pep talks, it is really there. But, I will restrain from responding to you again, because I see you are not in a place to understand what we are trying to give you, and so it only feels like we don't get it and so it makes you miserable. We do get it, we live with it. God Bless You.

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