am i the only one?


Recommended Posts

I wrote a blog the other day on basically feeling like a walking freak show but some of the comments were just..i dont know. I guess Im making this topic to see if anyone other YOUNG SURVIVORS out there has ever felt the way I feel or am I just crazy. If you are a caregiver, dont fall in the "young survivors" category, or didnt have a massive stroke, I don't want to hear from you because you cant understand me. I don't care about people who are worser off than me. There are thousands of people in the world who are worser off than me but that doesnt change me. People come into my library everyday with legs missing, an arm missing, walking with a cane, or in a motorized wheelchair. But looking at them does NOT make me feel any better. Shame on me.

 

As I said before I am thankful for all that I have. I give thanks everyday that I reached all of my wordly goals (graduation, moving, working, driving) but I still want to look normal. If I can be normal, I want to at least look normal.

I guess I am the only one on this message board that had a massive stroke and lives with spastic muscles 24/7 that make me look and feel deformed?

I guess I am the only one that has dealt with bullying, self esteem, and depression my whole life. As a child I was "fat dark skin and ugly". After the stroke at 12 even when I was home schooling myself and needed tutoring at my local school one of the kids that didnt even know me tried to pull my wig off in front of the other kids. and Im sure you all know the horrors I experienced in high school.

 

I want to go out and have fun but don't want anyone to look at me. I want to make new friends but what if they enjoy doing things I cant do or going to places I dont have enough confidence for. I want to date but everytime I meet someone from the net, through acquaintances, or out in public, Im afraid to meet them again because they will want someone better once they find out my arm is deformed and I cant wear high heels.

 

So now Im sitting alone in my apartment sad depressed and lonely because I dont want to think about going to work tomorrow and Im too stupid to go out with the people that keep asking me to hang out with them since I think I look like a freak show while other 24 year old pretty young women are out today in sundresses and sandals with confidence swinging one arm as they walk and using the other to hold their clutch purse.

 

I guess Im the only stroke survivor that has ever felt this way.

Link to comment
Share on other sites

You're not the only one, Katrina, and I felt a frustrated at the comments you were given...or rather the lectures. But it was really just another example of people who do not understand the entire scope of stroke.

 

One thing that stands out to me,that I haven't fully experienced either, is that you're age plays a huge part stroke or no stroke an I think it needs to be considered. It is completely normal for people your age to be dealing with peer pressure and fitting in and worrying about what others think of us. Stroke doesn't change that, but in the same vein, it's normal to feel self conscious and think others see what we fear they see instead of what they really see. For instance, You said you're stupid and that shocked me because I don't think of stupid when I think of you at all but I know you feel that way. Lectures or ridicule won't change that and it isn't support. One the other hand, it may help to remember that and try to remember that others may not see you at all like you think they do.

 

I really think, more than for older survivors, it's important or helpful to find a counselor to help you through this stage of your life. Teen and young adult years are very hard for everyone but even moreso with the challenges of stroke.

 

Finally remember that people who aren't in you're situation don't understand although they may say they do and may sincerely want to help. Their comments say more about them than they do about you.

Link to comment
Share on other sites

Hello, I'm a 36 year old survivor who had a massive stroke at age 31. I think it's good that you're able to identify and communicate your feelings. Because you're gifted with the ability to share your experience, perhaps counseling would help during this difficult time. That's just my opinion. I mostly wanted to respond to let you know I can understand your frustration about wanting what others your age have. For me, it was wanting to have children and participate in all the outdoor activities I once enjoyed. It took years of counseling for me to come to terms with my limitations, and now I'm at peace with myself.

Take care,

Veta

Link to comment
Share on other sites

Katrina Im sure you are not the only one but I dont think people think of you that way. You are going to have to find a way not to think of yourself that way. You are your cruelest critic. Maybe you need to consult a therapist to help with your self confidence. That is your biggest problem not the physical problems. Please get help or you will never be happy.

 

mc

Link to comment
Share on other sites

MC, I don't know or remember how many times I have told Katrina that same thing many way as I know how. She walked gracefully without any help across the stage to get her degree certificate graduating from a four year college. Right there is all the beauty you could ask for and even if you were in a wheel chair being pushed across the stage you are somebody special.

 

You can't begin to count the number of students in high school that didn't go on to college and had no physical defects at all. Here Katrina was a stroke survivor since the age of 12 and now 24 and can apply for any job available in her field of study and degree. There are workers in the nation's capital, the Pentagon, and the Veteran's administration working from wheel chairs because they can't walk, climb stairs or they use prosthetics to get about.

 

Katrina thinks she is ugly because of her left arm and hand she has been trying to hide since she was old enough to know people were looking at her. I call her and take her as my little sister but can as well be my grand child at her age. I don't see a thing in the world wrong with her or her arm and hand.

 

There are other kids, girls and boys born with abnormalities doing the best they can and living daily needing help to just get about and not on their own. Here she is looking good, can walk, talk, drive a car, and go where ever she need or want to go and yet not happy about how her left arm looks to HER. No one ever complains about how it looks. They only ask her some cases, what happened? People see me coming or going and know right away I survived a stroke, so what, I'm among the living.

 

You know I often wonder what will she think and say when she is much older and perhaps may need a walker or a WC to get about or even a scooter as I must use now at my older age. Young and older men don't ask you for your arm, hair, legs, or face but for your heart and your love for them as they give you theirs in return. That's what makes a real courtship not a person looking at you and making slurs of any kind.

 

I guess she could never date some of the young men here that has been to war for their country and returned deformed for life. I know I'm one of them!!!!!!

Link to comment
Share on other sites

Katrina, Even tho I'm nearly 2x your age, some of your words rang very true for me, but, as much as I want to respond, I'm not sure what to say, without sounding "holier than thou", or lecturing. Let me start by saying that I had a massive brainstem stroke 6 yrs. ago. I do not have spasticity, but I am in a wheelchair, which everyone can readily see, like your arm. I, too, experienced alot of bullying growing up. My Father was in the Air Force, and we moved around alot, so I was always the "new kid". To make matters worse, it wasn't hard to get a rise out of me, so I made an easy target. But I couldn't help it, their comments hurt so much. I think when you're innocent of any wrong-doing, but hurt anyway, and POWERLESS to stop it, it scars you. What I believe it did to me, was to make me a very untrusting adult. I have a hard time trusting others or their motives sometimes. Through the years, I've learned to deal with this, but, then at 50, had my stroke, and had to deal with it again in a way. All I can tell you is to trust yourself in all things. Be open to suggestions, but trust yourself to decide whether that suggestion works for you. And, let yourself out of the cage every now and then, as you don't know what you can do, until you try it! Becky

Link to comment
Share on other sites

I feel that way too Katrina.it sadden me to hear what comments you received on your blog. I look at other girls and wonder if my husband looks at them with a yearn to be with someone who, like you said, can wear high heels or a sundress. At times I just want to be left alone for I feel that way.

 

One thing that has helped me is reading the daily Dharma( Buddhist teaching of The state of Nature as it is) which is just dealing with you and focusing on what makes you happy regardless of what you may think what others think.Try to block all the 'if's'

 

YOU ARE BEAUTIFUL TO ME

 

http://media.psychologytools.org/Worksheets/English/Unhelpful_Thinking_Styles.pdf ( READ THIS) I have a copy on my fridge from my therapy

Link to comment
Share on other sites

Katrina you are normal for our situation - you are young & not a hardened ol;d crock - like I am at 61 I get self conscious/ uncomfortable when

i leave the house---afraid of embarrassing myself( being rude- belching- saying some toitally out to luncxh & totally unrelated to the conversation.

 

 

remember the Dr Suess quote Kimmie uses" be who you are say what you feel -- those that matter don't mind , & those that mind - don't matter

 

Abe Lincoln " you can't please all l the people all the time

 

Katrina in 1999 I had to deal withg my husband's infidelity through that I got 2 very profound statements to help From a counsellor & infidelity support group.

 

 

 

feeling gu8lty about the infidelity " if only I had done....." ( this is about him not you ) - same for you - anyone whjo says or does something to make you feel bad is the JERK - not you! - it i is about them & their problems& insecurities.

 

 

from the cousellor to Wayne " for Susan to ever trust you again--- you words & actions must match!"

 

 

Justa few things to live by that have helped me. Although I do have a husband & 2 daughters to support me & you are pretty much battling this alone

 

 

Kaqtrina you do am,aze most of us here I know that doesn't help in your daily struggles

 

 

best wishes & never never stop talking to us

 

Susan from Alberta Canada

Link to comment
Share on other sites

Thanks guys. I really appreciate the reassurance that I am not the only one that goes through these anxiety attacks. Customers at my job have actually made me chuckle a few times this week. Ever since my OT told me to wear the carpel tunnel wrist support all day, I have been getting asked "how did you hurt your arm" a lot more lately. One guy asked me if I bowl. I guess I look like a bowler? lol and at least 3 people have asked if I punched someone lol These customers come to me while I am sitting at the desk so they cannot see that it is my whole left side and not just my wrist.

 

I think its kinda weird though that the security guard I work with asked me if my wrist has gotten better and one of my coworkers asked me how I hurt my wrist. Like these people I work with everyday dont notice me only using one hand to do everything and limping as I navigate this 50+ pound book truck past customers without running into the bookcases? I guess I do pay more attention to it than others.

 

I wore a dress (for the first time in 5 years) on Sunday and finally forced myself out the house. I was limping but I actually got compliments on how nice I looked in the dress and no one asked what happened to my leg. Lastnight I went out with a group I met from meetup.com. Only 1 person asked me about my arm as we were walking the 2 blocks from the restaurant to the theatre to see Macbeth. After I told her what happened she seemed nicer to me. She helped me put my umbrella in the bag. Although I had to navigate uptown Charlotte on a Saturday night in the rain, I was proud of myself for getting out (and not getting into an accident). Eating then watching a play with an older crowd was perfect because it had nothing to do with what I can/cant do and since it got dark by the time the play was over I didnt care about the girls walking to the bars in their heels and short dresses. No one could see my black wrist support and Im sure no one noticed my limp so instead of feeling self conscious and having an anxiety attack, I actually felt happy that I drove uptown, enjoyed myself with a group of nice people, and drove back home to my own apartment (something I only dreamed of 10 years ago as a bullied 14 year old stuck at home on Saturday nights wishing I was normal enough to hang out and have fun). Now if only I had the energy to go out at night more

Link to comment
Share on other sites

Here's a funny but true story that might shine some light on self consciousness and just how little people notice sometimes. I had to have all my teeth pulled when I was forty. I was also single and I looked horrible. so I thought. Shortly after I got a new job in an office. I fixed my hair and i wore make-up everyday, except I never wore lipstick to draw attention to my mouth and I never smiled because that only looked worse. So finally the day came when the dentist called and said my new teeth were ready and I went the next day to get them. I prepared myself for all the talk about teeth and dentures and how I should have done it sooner and how bad I looked without them.

So I got to the office and walked in the door and my coworker took me by the shoulders and said..."WOW! Did you put on make-up today????" I said yes. The rest of the day all anyone noticed was my make-up...which they had never seen me without.

I thought my mouth was so ugly that I couldn't believe everyone else couldn't see it too. And when I did tell them, they didn't believe me because they were so sure they would have noticed that.

Link to comment
Share on other sites

Katrina,

Your an inspiration to me & whenever you write a piece, it's like I'm reading about myself! I can not gather my thoughts to

write back to you just now as my home is in a remodel but I just wanted to let you know Your not alone, and your not the only

one who has anxitety attacks & feels this way. Even though there's an age difference between us we are on the same journey..

So good to hear your went out @ night in a dress & saw a play with a group of people & felt comforatable.

 

I love the song by Alicia Keys about a caged bird! She has a deep heart & truly cares about others that comes out through

her songs.

 

And as someone wrote to you I feel the same YOU ARE BEAUTIFUL TO ME INSIDE & OUT! When I watched the video of you

walking to the stage to receive your college degree & give your beautfiul speech I felt a kinship w/ you & cheered you on in

life! As I said your an inspiration to me! As my daughter who went onto college & got her masters(she's now 25 yrs old) I will pm you

one day & tell you about her!

 

Sending Love & a hug,

 

Nancy

Link to comment
Share on other sites

Here's a funny but true story that might shine some light on self consciousness and just how little people notice sometimes. I had to have all my teeth pulled when I was forty. I was also single and I looked horrible. so I thought. Shortly after I got a new job in an office. I fixed my hair and i wore make-up everyday, except I never wore lipstick to draw attention to my mouth and I never smiled because that only looked worse. So finally the day came when the dentist called and said my new teeth were ready and I went the next day to get them. I prepared myself for all the talk about teeth and dentures and how I should have done it sooner and how bad I looked without them.

So I got to the office and walked in the door and my coworker took me by the shoulders and said..."WOW! Did you put on make-up today????" I said yes. The rest of the day all anyone noticed was my make-up...which they had never seen me without.

I thought my mouth was so ugly that I couldn't believe everyone else couldn't see it too. And when I did tell them, they didn't believe me because they were so sure they would have noticed that.

 

that is too funny

Link to comment
Share on other sites

Hi, Katrina, I'm Lin, a newbie to this website. I met you several days ago in a chat room session, and was very interested in your comments b/c of your age when you suffered a stroke. (I was 34 years old when I had 2 strokes, which I think made it easier than if it had happened at a younger age, like you.)

 

But I'm the type of person (or make that a new person, lol) who can't filter what I say.....therefore, I can't understand your negative self-image. Your picture shows that you are very, very beautiful, a young girl who would have men fall to the floor to get your attention. So hold your head high, Katrina, don't think about post-stroke deficits, just concentrate on all the great things you are!! You are only caged if you allow it.

 

Hope to meet you again in chat room. Prends garde à toi (take care of yourself).

Link to comment
Share on other sites

  • 3 weeks later...

I think its great that you can verbalize your feelings so well. Im amazed by the number and ages of people who have had strokes and what is truly amazing is the resiliency that people have to overcome this. Im so honored and blessed to have found a common among all the people on this site. Keep it up Katrina, your beautiful on the inside and out. People are blessed to have you in their lives because you have a level of compassion that most people do not have that makes you a different kind of person,

Link to comment
Share on other sites

Katrina im lucky I can hide my differences my balance improved and my walking is ok no paralysis's anf I tend to forget my speech is bad until I speak. last week at a restaurant I frequent I tend t not say much just ill have the whatever ( boy at first a few years ago I dreaded when the waitress came to the table) anyway when leaving a young lady commented on my new car and I responded and said too much making me feel as if I really drew attention to me being abnormal . so anyway I tend not to speak publicly too much

Link to comment
Share on other sites

And Paul, that is just human nature. I would sit with Bruce in Outpatient. You recognize the stroke victims and you have a guess as to their age. I would see people older than my Bruce, walk into therapy and those in power chairs, much younger. But it gives one a gauge as to what can be accomplished with hard work.

 

Best was the pool. We worked with a group, all about our age, all differently affected. Had a blast. Everyone looked out for everyone else. I would be working with someone and his caregiver would be working with Bruce. Five families. And I think, with that kind of support and interaction - people who were dealing with the exact same issues - we all did better. I can't tell you how many times one of us would be in the "family" area, going over to the locker room and helping with shoes and sox. Towels, Depends, pulling up pants. Everyone was comfortable and helped out. I only wish that had continued. But therapies are dc'd, people moved on. The stroke victims cheered each other on and us caregivers were comfortable with everyone.

 

But the main thing was acceptance. When you are confused, time to get out and recenter. Tired - same thing and everyone understood. For Bruce, anyway, he loved competing with the other four. They would all do laps - us caregivers alongside mostly. When there is true cameraderie among people with the same deficits, there can be progress, support. Comparing Bruce, now, to his healthy college roommates - not very productive. Debbie

Link to comment
Share on other sites

Hi Katrina,

I understand your frustration. I really hope you can get emotional support and therapy you need for your hand. I have tight tone in my hand and fingers as well. It is extremely difficult to get used to. It's been about 2.5 years for me. I've been getting Botox injections for a little longer than a year, including my leg. I have noticed a difference since getting these injections, that my fingers aren't clenched as tight as they used to be. I still cannot use my hand to do anything. I feel your emotional pain.I still have stretches of time where I feel lonely and cry and keep to mysel, which is good sometimes, but then i get myself back on track, which cam be a challenge. I try to keep up on your blogs and you really inspire me and I can relate to you in many ways. Keep your chin up :)

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.