[SophiaG]

I've never spoken about this to anyone before. But I think it need to come out.

I had a close friend die almost a year ago. He had the same disability as I did. Ever since he died I've been having a rough time. I mean sure I went through difficult times when he was alive; but I always felt as though there was hope. Now with him dead; life is different for me.

I loved Max (that was his name). I loved him dearly. Even though he drove me batshit sometimes (pardon my french). He was the person I looked up to. He gave me hope that despite the fact that I was born with a disability that I could have a happy and succesful life. I took his life as a sort of blueprint; a reassurance..."Soph, if Max can do it...so can you." and now that he is dead...I am full of fear (I dont know anyone else with my disability because its so rare). Fear that...because of my disability I wont be able to lead a fulfilling life. That I wont be able to pay my medical bills, or get a job, that I will always struggle with life and not be able to enjoy it.

I've seen figures; 200,000 in medical bills for what? 3 years? o_o

And my mom ever since I was little has been telling me "soph you should get married." and its been out of a fear I wont be able to financially support myself when I am older. She's always made it clear that she worries about that.

And there was the career guy that told me that all i'd be able to do was freelance work if I was lucky.

I feel afraid guys. And my fear is paralyzing me.

Tell me the truth; do I have reason to fear? To feel hopeless about the future?

Oh! to explain what my disability is...here is a quote from another post of mine. That should help you answer this post.

"I was born without a Jaw. which means i use sign language to communicate as well as writing things down on paper. So around people I am silent and its hard for them to tell if i am intelligent or not. (which...i like to think that i am....) So i usually just sit there and listen to them talk. This also means i have a tracheostomy and gastrostomy. Tracheostomy is for breathing and the Gastrostomy for eating since i cant eat through my mouth. "

[gimmeice]

(((((((((((( Sophia )))))))))))))

First of all, I am sorry for your loss. I admit that I know nothing of your disability, I have never heard of that. I am not sure if there is anything that you can do career wise but try to look into stuff that compliments your strong points.

[Rapunzel]

Sophia, I'm sorry about your friend. How did you meet him? What did you learn from him that you can hold on to? I don't want to take anything away from your need to grieve for him and work though what you are feeling.

You probably know about resources like vocational rehabilitation, right? You can find things that you will be able to do. And there are people out there who will help you. How about communication systems? You probably know about assistive technology and stuff that you can use to be able to communicate. I just wanted to make sure you know that there are options, even if they are not perfect.

I'm sorry that you have this disability and you are doubting yourself. Even if they don't have the same disability, maybe you could find other people with disabilities who are overcoming them, and develop some new role models and mentors. And then be a role model for someone else, because you can overcome this too.

[turquoisesea]

I just wanted to say,
it isnt because of him that you kept going. He gave you hope, but you can find hope elsewhere too. I'm sorry that he's gone.

But you still can. Yes its scary. Keep trying, and I think you can find a way. people who can't talk and use signlanguage seem to make it in the world. I know you have extra physical things to worry about esp financially, but I think it's possible

[madisgram]

thank you for having the courage to share with us your fears, financial concerns, your disability, and about max, your friend. i know you must miss him a lot. good friends are so very special.
there is a state run agency called vocational rehabilitation that is 80% federally funded. (in the white pages look up your state name in the phone book for how to contact them) their primary purpose is testing, training, and helping people with disabilities aquire a skill that will provide them with gainful employment to enable them to be as independent as possible. they also provide counseling and are trained in how to communicate with you, so no worries there. they also network to help you with job interviews within the range of your abilities. i strongly encourage you to contact them. you seem highly motivated and i applaud you. their funding begins at the beginning of each fiscal year..jan. 2009, in this case. at that time they will be given their financial budget for the year so money is more plentiful in the first half of any year.
the greatest tribute to your friend max, who gave you hope, is to live your life to the fullest you can. he would be here cheering you on if he could. so each step towards success that you make is like celebrating his life and how inspiring he was to you.
let us know how things work out for you!! i wish you well.

[daggy]

Hi Sophia
First off can I ask did you paint your profile picture? If you did you are very talented . I know how hard it is when you loose a loved one be it friend or family and people tend to deal with it in so many different ways. I lost someone this year and being it a family member and she knew she was on borrowed time I still find I miss her talks and cards and advice . But she was very prepared for the end and told everyone that where she was going it wouldn't hurt her any more and to live life for her to the fullest we could she was in so much pain and thankfully she passed in her sleep but I still miss her She gave everyone strength to do what they had to do after wards. But the biggest thing was to remember the love and think of what they would like us to be doing to remember them.
You come across as a very strong willed character who would be great to know
I'm sorry about the jobs situation and stuff but there are others here that may help .
Do you write?
I`m at a mental block right now but will have a look for you at things ok



daggy

[SophiaG]

ty all so much for responding. I think it is pointless to worry about at this moment in time. have to keep moving forward. that is most important.

[daggy]

not a problem Sophia I'm glad that you asked for help not many of us ask the right questions sometimes me included but I hope you gained or will gain some help