Monday, February 28, 2011

...A Different Perspective

Hello there,
so nice of you to pop by!

This post is an attempt of a cumulative response to many questions I get asked about my being legally blind(and the sub heading of the blog).
For those of you who don't know yet, I was born with a condition called Albinism; I have already explained what this entails dermatologically wise here and here. Feel free to read, discuss blah de blah.
I'm not gonna go in minute detail of all the different problems that affect my eyes that come with Albinism but I'll try and explain some of them as easily as possible -I'm aware that not anyone is familiar with medical terms.
Just to give you a general idea of how bad my eye sight is, it's 5/100: basically what a normally sighted person sees at a distance of 100 feet, I see within 5. Oh yeah, blind as a bat, right here! It goes without saying driving is out of the question....
As for short sightedness when I read a book, I'm at the pc, I text etc etc, my eyes need to be a few inches away only, we're talking a max of 3 if the print is big. Try and imagine now the enormous effort that goes into make-up application for example: extra long tools(i.e. brushes, pencils etc) really don't help as they ALWAYS have to be used at an angle in order for me to get really close to a mirror, and I go super slow to make sure application is perfect and I don't make mistakes. As we know it's always easier to add than remove, especially colours on a white canvas(that's my face for you and me).
Every day tasks that appear effortless to normally sighted people, are enormous challenges for me. Actions like making a cup of tea for example: I have to lean forward a little to make sure I can see I'm pouring boiling hot water IN the cup and not OUT on my hand or foot.
How about public transport? Well when I used to live back home I used to go on many week-ends away with friends, most of which required me taking trains on my own. "How did you manage then?" I hear you ask, very nice of you to ask. Thank you!
Well when your senses somehow fails you, you try your hardest to find ways around it and one of them is the use of technology. In fact taking a train requires having to check the flipping screens to see what platform your train is leaving from and if it's delayed. And for that I use my trusty camera and its handy little zoom! Yep, I may look like a loon standing in the middle of a train station or tunnel seemingly taking photos of a screen, but hey, it does the trick for me, so who cares!
Unfortunately the same doesn't work for buses or airplanes. If I'm flying somewhere on my own, I have to book "special assistance" which comprises a nice little fella(they're not little, really) in a fluorescent vest walking me to the boarding gate and on to the plane and vice versa. It does have its perks sometimes: people most of the time thinking I'm some kind of celebrity requiring security, not having to stand for an hour prior to boarding to get a good seat, meeting the same security people after a few times you've used an airport and them recognising you and making you feel like they're talking to a friend of theirs. But other than that I just hate it, it's the fact of depending on someone I really can't stand.
As for buses....unless there's only ONE bus leaving from that certain stop or someone is there to tell me "this is your one", then I can't take one. The camera trick here doesn't work, mainly because I'm outdoors and don't have long enough for the camera to zoom on the bus number and for me to realise it's the right one. As for asking EVERY bus driver "is this the X?", I get EXTREMELY frustrated after asking twice.
Something else that badly affects my eyes is my nystagmus, the involuntary eye movement we ALL suffer from. However in people with albinism this is remarkable and constant and it affects our vision. Basically until 3 years ago if you looked at my face you would have been able to see my eyes rapidly going back and forth. At the moment though I manage to keep it quite under control with a daily dose of a drug called Gabapentin. I'm not gonna go into details of that, however if anyone with Albinism or a bad nystagmus wants to know more, I shall blog about it, just let me know.
The number one thing that REALLY bothers me along the bad vision, is the fact that my eyes aren't straight. And unfortunately it's getting worse and worse as I grow older. This is why sometimes on the blog you'll see FOTD's showing just one eye -it's because that particular day my strabismus is worse than usual and I couldn't find a good enough photo of my whole face- or photos taken from a certain angle -that's the angle where my strabismus shows less-.
Normally this issue is easily corrected when you're a kid just by simply training your eyes with prisms. Of course my parents being my parents gave my brother the option but not me. And now that my brain has fully formed, it's too late to train my eyes back into position.
My eyes not being straight REALLY make me extremely uncomfortable when I talk to someone or when friends ask to take photos together, with my horrible unstraight eyes I ALWAYS end up ruining otherwise perfect photos of my gorgeous friends. It REALLY bugs me as it's something I have NO control over.
My life is filled with frustration from the second I wake up as I either can't do something because of my vision, or because I have to ask for some body's help.
Not to mention the fact I'm unemployed and have much difficulty in finding anyone that will give me a chance.
Most of my friends will tell you they tend to forget about my impairment and that I'm more independent than many women they know, but it's not enough for me and I believe unless you suffer from something similar, you will never understand the amount of frustration I deal with on a daily basis.

I'm on the process of looking for an eye surgeon here in Ireland that is willing to try and address my strabismus and/or somehow correct my vision slightly. So far I've had very little success so if you know someone who might be able to help me in any way, please point me in their direction!

This post could have been a heck of a lot longer, and it's taken me a few days of editing, trimming and pondering to get it finished. I didn't want to be too medical or too burdening.

I do hope it's offered you an insight of what my life is and what living with a disability means.
If you have any comments or wish to discuss anything with me, please go ahead and do so.

Thank you for reading,



  1. that was really interesting thank you :)
    I think you're quite harsh on yourself though saying you ruin pictures, your friends obv dont mind and WANT you in the pic, so you should say to yourself "fuck it i'm lush" and smile pretty girl!
    yes you're different
    no its not a bad thing!

  2. reading this was pretty much a mirror of my own situation. Have u ever considered getting a monocular? it really helps. i used to use my camera just like u described but then i realized i got a more steady thing going with a monocular. :)

    Yes i sure would love to know more about that drug u mentioned please.

  3. Thanks for being so open in this post LFD. I didn't know a vast amount about albinism, so this has really enlightened me.x

  4. This is very interesting, indeed - we don't realize how much we need and use each of our sense when we don't lose the ability to do so. You're very brave! I hope you do find some doctor that can bring some improvement to your sight.

  5. Thanks everyone for your lovely comments!!

    @ Liz, yep I have tried with a monocular but there wasn't much idfference to be honest :-(

  6. Brilliant! Thanks for sharing, love. You have a healthy perspective and a good understanding of what we go through.

    I am always amazed when I mees someone else withe albinism who has no true understanding of their own condition.