Scared and no one to talk to
Posted by sadira on 2/24/2011 at 11:52 PM
Hi, I'm new here. My name is Sadira. I am 16 years and attending university. I had a check-up a few months ago and my doctor discovered that I was losing vision in both of my eyes. Now I am completely blind and my doctors still do not know why. It has been really difficult dealing with my family and friends and just people in general. They don't know how to treat me anymore and I get irritated with them. They don't want to talk about the movies they watch or the books they read when I'm around, but I really want to hear about the things I'm missing out on now. They are all so afraid of talking about something they see that it is awkward anytime I walk in the room. If someone is telling a story, then I usually just leave so that they aren't uncomfortable, but it really hurts hearing my friends laughing and having a good time and knowing that I can't join in.
It has been really difficult walking around campus because there is ice on all of the sidewalks and snow everywhere, plus a lot of the campus is being renuvated. I often slip and fall, run into things or walk into restricted areas. It has been frustrating because I don't have anyone to help me or friends who take the same classes that I do who could help me get from place to place. I'm just so tired of everything right now. How is it that I am 16 years old and already I am tired of being alive? I want to give up so badly, but I'm ashamed of thinking these things at the same time, ashamed of being so selfish. I don't know what to do with my life now and I feel like I can't do anything at all. I feel so weak and useless and pathetic and it hurts being by myself. I feel bad writing this here when I know that my family is trying their best to help me and be strong for me, but inside I know that if they weren't around I would have already given up. Everyday, I wake up and think to myself, "Why am I getting out of bed today?" And the most terrifying thing about all this is I don't know why. I don't know why I get up in the morning and I don't know why I'm alive and I don't know what I'm going to do with my life and I don't know how I'm going to face these thoughts everyday for the rest of my life. I just...I want it to stop. Sorry if this is like really inappropriate or something, but I just needed to say my piece even if no one hears. Please help.
There are currently 12 replies
Re:Scared and no one to talk toPosted by Ehuffman on 2/8/2012 at 11:22 AM
I am totally blind, and thought I would reply to your message. Does your university have an office for disabled students? If so, try having them read and take notes for extremely visual classes. I know adjusting has to be extremelly difficult. Your family is going to have to get over the disapproval about counseling though. You need the services.
I wanted to let you know that you could vent any time. I am glad you still have a few friends. It taeks a long time for people to treat you normally and some never will. So, you like science? Maybe you can find another job with it.
There are descriptive movies and some movies do not require description. You can follow the plot based on the dialogue. I hate it when people hesitate when talking about blindness or something visual. It's not like we have a contagious disease! I am 24, and just finished college. I think you call it university. I travel independently with a cane.
Feel free to write back if you have more questions, or just want to vent!
Re:Scared and no one to talk toPosted by ROMAN698 on 1/25/2012 at 10:03 PM
its alot of trust plus a tremendous amount of kraft
to be a solja like you must be. school is too hard and it is amazing you can attend. I can see and there aint no way i would do good...i can barley help clean my house.
and when i think about people my first instinct has always been to hand faynte and uppercut their face off. sports such as boxing and martial arts are fun and help me stay in shape. blindness must be hard. real life. so just playball with what the nonsence is. really amazing things always happen and just say cool. way to go kid!!!
Re:Scared and no one to talk toPosted by sadira on 5/21/2011 at 11:29 PM
I want to say thank you for your support. It's been pretty hectic these last few months, so I didn't have time to go on, but school's out now, so I'm back. Thank you all for your advice and for sharing your stories. I was very touched by all of them. I did speak to my friends and it is unfortunate, but many of them got very upset with me and haven't spoken to me since. It was hard to deal with because they started to be quite mean and whenever I was coming they would dump stuff right in front of me just to watch me stumble. I still don't understand why they felt they should act this way or why they feel they can no longer be friends with me, but I've accepted that if they're acting this way, they weren't my friends in the first place. Some of them, I have known since I was in elementary and it's hard to let go of them, but it's what they want and I can be the better person.
However, I did learn who my true friends are, few though they are now. They get me out of the house and just on outings to go see movies or go shopping. I started my summer job as a cover artist and it was been going very well and my employer is very pleased with what I have done. I am continuing in neuroscience although it is more difficult now especially when trying to memorize diagrams. But my department has been very understanding and has been very supportive of me.
I spoke to my family as well and they have agreed to listen to me more and take my word on things. Before, when I said that I didn't like the way they acted around me, they ignored it because they thought they knew better than I did what was best for me. Now, when I say that something is bothering me, they are much more receptive and willing to change it in a way that makes it easier on all of us. I know they are struggling with giving me independence because all they can think about is how hard it must be and that I need to depend on them for everything. They are learning, slowly, but surely, that I am still the same person who needs privacy and respect the same as I always have. But they are also willing to press the issue when they see that I need help, but I am too embarrassed to ask for it. They have learned to be gracious and I, patient.
Thank you all for your help.
I really appreciate it.
Re:Scared and no one to talk toPosted by Wingman on 3/14/2011 at 11:24 PM
I'm in A similar pardicament I started looseing my vision 4years ago and we are still without a diagnosis I started teaching myself the cane a year ago and now I'm getting evaluated for services. You should call your local rehabilitative services I'm positive they would send some one to you cause considering your areas weather conditions I think you should. Get O& M
As far as your friends why don't you try confronting them explain your vision in my experience usually the ones that are sort of stand off ish they are just curious they just don't know how to approach it so meet them half way and the tension might ease at least
As far as movies your not cut off from them there is still an option Where you can watch them and discuss them have you ever heard of DVS it gives you an audio description during natural pauses of the scenery the clothing etc and movie theaters are beginning to be out fitted with the tech as well some films that you can get anywhere with the descriptions are despicable me avatar up
Re:Scared and no one to talk toPosted by wdalsing2 on 3/14/2011 at 8:27 PM
JoeS of the AFB Staff:
I have to say I think your personal touch and energy
are excellent. I am legally blind in one eye due to
a poor Detached Retina surgery outcome. But I have
one good eye, so far. But I sure can understand
what is going on with the people who have both eyes
failing. Losing one certainly is traumatic. Keep up
the great work. Your work is inspiring.
Re:Scared and no one to talk toPosted by KBShine on 3/3/2011 at 2:08 PM
I'm a legally blind college student as well. I am majoring in psychology, and absolutely love it. I have been visually impaired all of my life, so I didn't have to "adjust" from being sighted to legally blind. Suddenly losing your vision must be quite a shock at first, there's a lot to take in, and it will take time. It's great that you have started the adjustment process, I can tell you want to be in control of your life and not let your vision loss get in the way. Something I've learned gradually throughout my life is that no matter how smart, strong willed, independently minded you may be, you will need a strong support system in place to help you when you need it. I used to try to do EVERYTHING by myself, but I've found that seeking and accepting help makes life a lot easier in the long run.
Since you have only recently lost your vision, I suggest seeking out rehabilitation and O&M services. Believe it or not, you will be able to do most, if not all, of the activities you did when you were sighted, only now you need to learn how to do them differently (but potentially just as effectively). Take an important skill such as cooking; blind people can be excellent at it, provided they learn how to do it without the use of vision by taking advantage of tactile aides such as specially marked measuring cups, raised dots indicating the different temperatures on a stove knob etc.
As far as O&M goes, cane training is a must. Knowing your neighborhood and being able to get to places you need to go without another peson guiding you is extremely important (and good for your mental health might I add.) Especially as a college student, you're going to want to get to different places around town (theater, restaurants, clubs etc) so learning how to use public transportation is key to the level of independence you will have.
You mentioned that the training center is an hour away from you, so it would be difficult for you to travel there regularly. Contact them and see if they have any instructors who can come to you. I was able to have a rehabilitation counselor come to my house to teach me some of the basics of cooking, sewing, etc when I was in high school. Currently I'm studying abroad in the UK, and I was able to have someone from the Guide Dogs association over here come to the university when I first arrived to take me around the campus and the nearby city so I could get used to my new environment. I only had 2 lessons with her, and after that I felt comfortable enough with my new surroundings to get places I needed to go independently. So basically what I'm trying to say is, be persistent and get the services you need. I'm sure the center near you gets home training requests often, and hopefully they will do what they can to accommodate you.
One last thing, I have found that traveling with a guide dog has greatly helped with my mobility, but also has done wonders socially. Instead of looking as me as "that poor, helpless blind girl" people say they marvel at how quickly and efficiently my dog and I travel together. At times my friends even joke that they forget that I'm visually impaired at all; the confidence I have in myself affects others positively as well and makes things less awkward overall. In time, once you're comfortable enough with your cane, and you know your neighborhood well, I'd suggest researching guide dog programs and seeing if you think one would be right for you. It's really a personal preference, there are benefits to both cane and guide dog travel, I have just found that working with a guide dog suits me better than the cane did.
I wish you the best of luck, and do not hesitate to contact me if you have any questions or concerns.
Re:Scared and no one to talk toPosted by PyreflyAnomaly on 3/2/2011 at 7:46 PM
Hello, um, I'm not blind, but I just wanted to say that I think you're really inspiring. I just, I know I take so many things for granted, and as someone who has art related interests and goals, I think if I were to go blind, I'd also feel as if my life were over. I can't even begin to imagine how terrified you must be, and I feel ashamed myself for being so apathetic towards things and people. If I went blind, I don't know what I would do, and yet, there would have to be something that could make me happy, because we only have one life and it would really suck to let it end without a bang or at least a few firecrackers. I think the same must be true for you too.
The fact that you're a 16 year old attending college just blows my mind, that's just incredible. I know you must be a beautiful person and I just want to wish you the best of luck. So don't give up yet, I don't know what you're going through, though I'm sure you're pissed and afraid, but I think there's gotta be a way to find happiness for yourself. Don't worry about what other people want, just try finding a warm ray of light for yourself, you know, and have that confidence that will come with knowing you've railed against something so tough.
And coming from someone who is extremely socially awkward, I think you should just be frank with your friends and let them know how you feel. You'll all feel more comfortable about it afterwords and things will be far more normal. It's definitely important to have someone to talk to, and though I know we're strangers, please feel free to contact me anytime about anything, even if it's just to vent.
My email is email@example.com
I'm 19 myself, and I must say that your plight has made all of my fears and problems seem so very small.
Love and laughter,
Re:Scared and no one to talk toPosted by Joe S on 2/28/2011 at 9:10 AM
Well, there are doctors who are blind or visually impaired, most have some vision, that I can think of, off the top of my head. I know a few that finished medical school whom have no vision. One is a Psychiatrist and there are a few in related fields, very competitively employed. I know 2 that work in a lab at universities. One is a professor at university.
Are there fields related to Nuero Science that you would be interested in?
There are engineers, architects, accountants, and more. I think you will have to do some research, self assessment, and figure out what you would like to do. I don't see why you wouldn't want to stay in the science arena. The American Printing House for the Blind (www.aph.org) has done some work promoting the fields of science and technology. As, has the National Federation of the Blind, they both have had conferences specific to these fields. I would definitely look into these. APH called their conference STEM (Science, Technology, Engineering, Math).
Re:Scared and no one to talk toPosted by sadira on 2/26/2011 at 6:18 PM
I attend university as in college as in post-secondary education. I am in the Honours Neuroscience program although I guess after this term, I'll have to find a different program in I want to stay in university.
There are guidance offices on campus that I could go to for vocational evaluations and counselling. I've looked at CNIB, but it was difficult finding an area that was for university students.
As for volunteering, I honestly hadn't thought about it. I don't know what sorts of things I could participate in. I don't really know if the things I like to do can be careers. I don't want to be a burden on my family.
Rambling is undervalued.
Re:Scared and no one to talk toPosted by Joe S on 2/25/2011 at 1:16 PM
I am back.
University meaning like high school in the United States, right? Or is this college, like you can major in accounting or whatever?
I think you seem to represent yourself well and communicate well through writing (a positive). You are 16, you will not have all of the answers to the world at this point. If you are in high school, are you interested in going to college?
Do you think your parents knew what they wanted to do at 16? Do you friends all know what they want to do? They may think they know, but most likely they don't. Does your school offer counseling, they often do? What about taking a vocational evaluation or something like that? Do you have a guidance office? Have you looked CNIB?
You truly sound like you are being extremely proactive, impressed by your fortitude -- teaching yourself to use a cane. You seem to have good technology skills or screen reader user skills.
You can totally make a difference. I feel that I am making a difference for persons who are blind or visually impaired. We all can make a difference. Have you thought about volunteering for organizations of interest? Are there non-profits in your community? Religious groups? Charities? What issues are you passionate about?
If you had a career interest prior, is there related jobs that you would like to explore? There are tons of jobs in each field, it is just about exploring and getting the proper training.
Life is tough, it is easy to give up, but much harder to put forth the effort and take risks. I have moved all over the East Coast of the United States to expand and build my career. I moved places where I didn't know anyone. I am telling you to move, just be willing to take some risks. I am not saying to not research them. You never know what is possible.
Have you looked at the Hadley School for the Blind courses, they are free to persons who are legally blind. Check them out www.hadley.edu.
I wrote a course on AFB CareerConnect called the Job Seeker's Toolkit, it may be something to check out. It is free as well.
Sorry for the rambling, but don't give up!
Re:Scared and no one to talk toPosted by sadira on 2/25/2011 at 12:16 PM
I have no vision whatsoever. I use a screen reader. As far as I know, I haven't had any rehabilitation so far and I've trying to get the hang of using a white cane by myself because I don't have the time to go the training centre (It would take over an hour just to drive there and I would have to get one of my parents to take time off work to get me there). I live in Canada, but I couldn't find any forums for Canadians living with blindness. I hope it is not a problem. Is it all right?
I've looked into counselling, but my family doesn't approve, so I haven't looked far. I did check out your career connect, but I don't know if there is anything I can do well enough now to have a job in it.
I haven't seen any movies or watched tv in a while (my friends have gone to movies, but I have not been invited). I am lucky enough to know someone who has a text converter which scans books and turns it into an audio file on my computer. It is difficult scanning every page and making sure it goes into the converter the right way, but I love reading and I need to study still, so it's all right. My friends don't read much and we've never really talked about books before, but I can try and see if maybe they would either read the ones I read or maybe tell me about the movies they go see since they won't take me along. You are right. I should try harder to make them understand how their actions have been affecting me. The next time I talk to them, I'll be sure to try bringing it up again.
I just feel like I've been trying so harrd in school to attain my dream and now it has all gone to waste. It's hard dealing with that and I know it sounds childish, but I really wanted to make a difference and now I feel like I can't anymore, at least not the way I wanted to.
Everyone keeps talking to me about exploring my options and pushing me to make a decision about what I am going to do now. I know my family and friends are trying to be helpful, but I wish they would stop bringing it up long enough for me to get used to the idea that nothing I thought I was going to do with my life is possible anymore. Still, you have my thanks for your help and quick reply.
Working to be better than I think I can be,
Re:Scared and no one to talk toPosted by Joe S on 2/25/2011 at 9:16 AM
Okay, so you have not vision or some vision?
How are you accessing your computer? Screen reader or Magnification?
Have you had any rehabilitation services?
Have you had any orientation and mobility training? (training using a white cane)
Where are you?
Have you sought out counseling or support groups?
There are groups online, over the phone, and more.
Have you checked out any of our other parts of the website such as AFB CareerConnect or any of the other programs?
Life is definitely worth living!
Do you go to see movies or watch tv or read books? Why don't you bring up topics with your friends about these subjects? (there alternate formats to access books, how do you access books for school and in general?)
Education can help, if you nicely say, I read books too, or make a joke out of it. But, bringing up the books or movies that you have utilized should open things up.
You may have to talk to a few of your friends about, share how you are feeling in a private setting.
Social situations take tact and practice. But, you will have to navigate these situations throughout life. You are obviously educated if you are in university, so why not share your thoughts.
Counseling can be a great thing, we must first be comfortable with ourselves before others will be comfortable with us.
Life is short, you should get out there and not avoid these situations. Practice navigating them.
I know you can do this!
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