NOAH AOC

 Hi everybody. My name's Josh, but my friends have taken to calling me Lucky for years. I'll make this short and sweet- and I hope that I'm not bringing anybody down-that truly isn't my intention. As I've grown up, I've noticed that having albinism is a lot like living a Kafka novel...and the older I get the more that gets to me. I'm certain it means I haven't adjusted with something or some such. But the realization of that alone does me no good- I need to know what you people- who presumable don't wander all over the place reading and acting like loners, might have a clue as to what I'm missing here. Feel free to contact me, if you feel so inclined I wouldn't blame you if this sounded a bit heavyish though.

Peace, I hope you all find yourselves well,

-J 

Huh????

Can you try that in english please?

 Are you asking why your shy?

I am sorry but I don't unstand what you are asking!

 Josh,

I think your reference to Kafka has floored most people on the AOC - it certainly floored me. LOL

I heard a talk on the radio (England Radio 4) a few weeks ago which was given by a reclusive author. She explained that she was rather shy but had other friends who were also shy.

She had a Great Idea - to invite everyone around for a party.

It was a disaster.  None of these vibrant shy people spoke to one another at the party.  Everyone knew the hostess of course but they did not interact.  They just stood around the house checking out what books were in the bookcase and musing to themselves.

The moral of this tale is DON'T BE SHY.

PS  Was Kafka shy or did he just have shy characters in his books. 

Will you be at Vegas in a few weeks time?  That is such a SHY place.  LOL

Brian 

 Hey Josh

I will have a more complete response to your post later. However, for now, you should not have to apologize or even give a disclamer for stating how you feel. I mean, what the heck is this site here for, if you can't express how you feel. 

I understand how you feel about geting older and having albinism getting to you.

 For me, I freaking HATE HAVING ALBINISM. it is for ***. being stared at constantly, being called names. being rejected more than the usual person and (yes this does haqppened), being looked over for jobs and such.There are times where I think. I am the only person who feels this way.  

I must say, I think this board and organization bends over backwards to protect parents fragile emotions. but that is a later post

But Josh, what I am saying is that THIS exactly the place to come a vent even if it brings people down.  

peace

charone  

My Goodness! The Controversy!

 Sorry to those of you who felt I wasn't speaking clearly...or in English. To that end, I'll be happy to clarify my position.

First, I'm guessing based on the myriad answers to my post that there aren't many Kafka fans out there- fair enough. The work I was alluding to was "The Metamorphisis". It's a short novel in which a man wakes up to discover himself changed into a form that no longer seems to fit in his reality. Now, I think this parellels some aspects of, specifically, having a visual disability in that, unless you aren't paying attention you've probably noticed that out there in that vast world there are many signs that...many of us...cannot see (literally). In short, much of the world was designed for a community with different needs. This is what Kafka speaks to. So...might I inquire to those of you who have chosen to respond so far (with the exception of Jerome- whose remarks I actually appreciated a great deal) as to why you think the notion of "don't be shy" speaks to such questions? Beyond that, why do you all seem so threatened for the asking?

Tale Care,

-Josh 

 My Apologies- 

I meant Charone, not Jerome. Spell check did that. :-)

Hi,

I went through all the posts. Josh I have one thing to say to you. No matter however right you are, it is dam tough for us to live in this world which is actually meant fora different set of people, yet we have to live in it. It is completely in our hands to change our life and fight for our rights. I am doing my masters in UK for almost a year now. it is my first time away from Home and family which is India. I am living alone and learning to live by myself in every possible way that i can. It was really tough in the beining but now im loving my independence because I have made myself adapt to it. I have faght really hard to reach this stage which makes me feel special now. Howeverim yet to achieve my dream of becoming financially independednt. i still dont know what kind of work can I do. I am hoping to start voluntary work soon.

Anyway i just want to say that it is totally in your hands to make your life beautiful. There are people who make fun of us or ridicule us. Just ignore them. There are more others who are willing to lend a helping hand. Put a smile on your face and the world will smile back at you.

Goodluck

Eshita 

 Hi Eshita,

Welcome to the Noah AOC.

I am Brian, age 64, who is about to rejoin the university scene as an undergraduate.  I have been accepted by Manchester U to do a 4 year course in optometry that starts in September.

I have been interested in albinism for about 6 years - having discovered my diagnosis for myself.  I am a scientist/engineer by profession with a PhD in Medical Physics. For the past 6 years I have expreimented on my own eyes and have learned a lot of stuff that does not (yet) come up in the textbooks. 

The optomery qualification will allow me to operate within the optics profession rather than outside it.  Poacher turned Gamekeeper perhaps.

In the meantime I have given a number of talks to albino groups around the world.  The next one is scheduled for 10.30  Saturday morning at the Noah Las Vegas conference in less than two weeks time.  It will be a 90 min teach-in on what we see and what can be done about it.  All the way from coloured contact lenses to experimental surgery for the brave hearted. 

 The lecture will be available in pdf form after the conference - probably as a download from the main Noah web site.

Brian

Oh wonderful Brian! My husband and I were looking at that one. We will be attending that!!! See you there!!!

Oh man, I am  SOOO JEALOUS!!!

Brian, I have read all of your 'scientific' post with much interest!  I have a four year degree in Biology with a minor in math, so the scientific and medical aspects of things is always of much interest to me!  I have contemplated a return to school myself--long story, but I should have studied history!! HIndsight is definitely 20/20--especially as you get older! OK, so I'm not 50--yet--next year!!

I look forward to viewing the pdf of your presentation!

Joni

Hi Brian,

It is really nice to ehar that you want to do optometry. And wow a Phd sounds really great. i really hope to do it some day too. I will surely check out the Pdf format of ur presentation as I won'e be able to attend the conference.

E

Josh,

I have read all the posts on this topic.  I had to walk away from the computer for a while to think.

First of all, Josh, where do you live?

I joined this board just last week in order to find some support because I'm having a tough time right now dealing with albinism issues.  So I've been reading through the different posts and responding to some in order to see how others are coping.  It surprises me to see that people are not dealing with social issues as adults.  Or, they aren't admitting to it.  Or, they are in denial.  Or, maybe where they live, it is not an issue.  Perhaps some have had enough family support that they have been able to weather the hard times and come out on top.  Unfortunately, I had zero support and pretty much have been on my own.

The last thing I want to do is aleanate people in the group I just joined, so I'll be gentle. 

First I want to deal with issues of having low vision, not including albinism.  These are common issues that people (adults) with low vision   It takes the driving person 10-15 minutes to go to the grocery store and 20-30 minutes inside and 10-15 minutes home.  It takes me 30 minutes to an hour on the bus, depending on whether I go to the whole foods market or the regular Food 4 Less, and at least 1 hour inside.  If I'm lucky I can find someone who speaks and understands English (I live in a Hispanic area of California) to help me.  If I'm lucky they've spent enough time in a kitchen to know what I mean when I ask for Zucchini.

It takes the driving person 1 hour to get from my area to where I work.  It's 3 hours, 4 busses and a train for me.

Reading?  Scanning into Kurzweil or magnification.  Or listening. Again more time.

House work?  It takes a low vision person longer to find the dirt.  :)

School work?  The research site is not JAWS accessible, and it's impossible to find the right buttons with the mouse and Zoomtext.  Again, it takes much longer to get school work done.

Now, add social stigmas to low vision.  People just don't understand partial or low vision.  So when I ask where the elevator at the metro because the train came in on a different track, and the employee says "You know where it is, you can see."  I fantacize her on the third rail.  Not really.  But you know.  It gets frustrating. 

OK, I'm not really complaining, it is what it is. 

Now add social issues of albinism.  Josh, we all have our personality styles.  Each person, sighted or partially sigted, albino or not, have personality or social styles.  Some are more introverted than other.  Some had the support as children and others haven't.  Some of us have to work harder to get through it than others.  Or some live in an area where people are more tolerant.

Eshita,  I admire your strength and determination.  To move to a different country and go to university?  My hats off to you.  I'm afraid if I have to leave the state of California.  God forbid I get on an airplane.  It means I have to travel more than fifty miles.  :)  You have an incredible amount of strength.  At first I was a little angry about your post, but then while I was thinking I said, you have something good to say.

You're right that it is up to each individual to make himself or herself happy. 

Here's what I do.  By the way, I got seriously harrassed on the bus going through Englewood today.  I was the only white person on the bus.  And I was whiter than white.  :)  I sat there with a smile on my face, and if my bag bumped someone I apologized, and I thanked the driver, who also harrassed me, for allowing me to be a passenger on his bus.  The thing is, we, as humans, have control over one person...the self.

So I use self affirmations.  I am good.  I am smart.  I am beautiful.  I was reading a book about self esteem and self esteem workshops for the blind.  ONe thing there was was an exercize.  I won't go into the exercize, but there was a saying:  "I hear your words, I feel their bite, but I know me and I'm alright."  Sounds hocky, but I change it depending on the situation and use it as an affirmation.  Another thing I do is keep track of how many positive things have happened in a day versus how many negative.  The positive always seems to win, and I then capitalize on those positive experiences.

Josh,  I hope things get better for you.  I hope you find your group that you fitr into. 

Julie