blondewhimsy

looking at life through a platinum blonde fringe.

My story

Well it’s all about me today. 🙂

This is the draft of the talk I gave at my first Albinism Fellowship of Australia conference a few years ago. I was asked to give my introduction, which I did. I hope it’s of use to someone!

 

When I was growing up, I went to school with an albino. Honest I did. It was really weird. She was a year level below me, and her skin was white and she had to hold books right up to her face to read them. I think her eyes were even pinky coloured. She always had her head down when she was outside and I never really saw her inside, so I can’t be sure.

Everyone looked at her and then at me and said “so… are you one too?”

“Nup.” I would reply. “Look at her, her skin’s different and her eyes wobble. AND I don’t read up close like that. So no way I’m an albino”

“So how come you’ve got white hair then?”

“Dunno. I’ve got German and Irish in me, so I guess it’s just a double dose of fair genes.”

“Oh righto.”

 

So there you had it. I wasn’t an albino, I didn’t have albinism.

 

Even one of the top eye specialists of the day, who checked me out quite regularly as my older brother was a patient of his, told my parents I had inherited an “excessive fairness” gene.

This didn’t mean I was overly kind and forgiving, just that I had excessively fair hair and skin. He said there had been a 1 in 4 chance each of their kids would get it, and I was the lucky one. (3 brothers are all pigmented)

At around 15 I went to a dermatologist about my revolting acne. He told me I’d have to be really careful in the sun as my skin would burn; even to the point of putting on sunblock to hang the washing on the line or walking to school. I was interested in this and asked him if he thought I was “an albino”. He laughed and said “no way, look at you; you’re just very fair skinned, you just need to be careful, that’s all”.

As I grew up I learned to wear my “excessive fairness” gene.

I had teasing or verbal bullying every single day of my school life.

Why didn’t I complain? Because I was so stubborn I wouldn’t let them win.

They were calling me “albino rhino”, “albino”, “casper” “whitey” – amongst the printable names.

Why didn’t I complain?

What were the teachers going to do? In those days, bullying was treated differently and the culprits were chastised with what they had said, with the victim within range…

as in “did you really say XXX to her?”.

 

So was I going to let a teacher or headmaster repeat, therefore reinforce, those words in the perpetrator’s mind?

I don’t think so.

Besides, I wasn’t an albino so what did it matter anyway?

 

High school was horrible, I was one of the top students in my year level, not that you’d know it from my results. I almost failed my final year. Why draw even more attention to myself by being clever? It was easier to be in the middle and coast along and hope I didn’t get singled out in any way.

By this time the boys in the school had hormones that were kicking in, and they saw the “white girl” as a bit of a challenge…who could embarrass her the most? (She went really really red at the slightest thing, so it was easy to do).

“Do you glow in that dark at night?” being one of the most common and inoffensive questions I was asked

Again, you can ask why I didn’t tell a teacher.

Because, I’d have to explain what they said or did and why they did it. And it was so humiliating, and the whole school would find out, so I shut up.

I didn’t date, I didn’t have boyfriends, partly because I wasn’t allowed to, and also because I wasn’t remotely interested in guys who wanted to date the “albino girl”.

I ended up marrying my first boyfriend, and am still married to him, 25 years on.(Now 30)

He tells me he doesn’t like bottle blondes, he only likes real blondes; though I have seen him “checking out” a lot of blondes…apparently to make sure which they are…. 🙂

 

Not long after I turned 40, I went to a new optometrist, and as he was prescribing my lenses, he said “….but that’s normal with albinism.”

I gave him the look….

He continued on about my prescription, but I couldn’t let it go, all I heard was the A word. I knew he was wrong. No doctor has ever said it, nor have all the eye specialists or optometrists I’ve seen over the course of my life. Yeah I knew my eyesight was a bit odd, but figured that was just me. I…wait for this…even worked for an optometrist who would mutter things about “your eyes”, or “your eyesight…”. And would shake his head and say “one eye far sighted one eye near sighted and astigmatism. Tch tch”.

I had even had a specialist tell me my vision was so good there was no WAY I had albinism and he wanted to send some hair bulbs off for genetic testing to see what I did have.

Other than as denial, NEVER had the word albinism come up about me.

So I challenged this new optom on it.

He looked me in the eye and said “I’m sorry you feel that way, but frankly all I have to do is look at the photo of the back of your eye for a clear cut diagnosis.”

He showed me photos of a “normal” retinal photo (a very deep red colour) and then mine (a very pale pale pale colour). He showed me my husband’s photo and compared it to mine. He then saw all my children, did their eyes, and showed me the results.

I nodded politely and chose my glasses.

I couldn’t let it go. It bugged me so much, and I started quietly researching albinism on the internet.

Now mind you, a few years previously, my husband had told me of a couple in our town who’d had a grandchild diagnosed with albinism. He wondered if I’d like to speak to the mum as she was really upset.

I ruffled with indignation. “What can I tell her?”.

He also saw in the paper that there had been a day out for people with albinism (PWA) in our state, and thought maybe I could get in contact with the group organizing it. I looked at the photos of all those white people and thought “Nup. I’m not putting myself with those people. I don’t fit in.”

Because why?

Because I don’t have albinism

.

 

I found the NOAH website (National organisation of Albinism and hypopigmentation –

www.albininsm.org) which documented hypopigmentism, which is just the lack of pigment but nothing else affected.

See, that was me, not the albinism….wasn’t it???

 

When I went back to find this hypopigmentism information from NOAH to share with my uninformed optometrist, the only information I could find was about albinism.

So I did more and more research, and when I read that PWA actually DON’T have red eyes, they don’t have to have white hair even…

And they didn’t all hold books close to their faces.

What the..?

 

I let it slide for a while because this was getting into incredibly uncomfortable territory for me. I needed a new script and went back to the same optom.

He didn’t say anything I considered controversial. Something triggered in me and I did more research in earnest, and figured that maybe the optom was right, maybe I actually did have albinism, but I wasn’t convinced. I found an online chat group called albinism international which I joined, because I figured this way I wasn’t committing to calling myself an albino, I was just joining for…information to prove I wasn’t one. The Aussies on the group encouraged me to join the local version which I did as well.

Man, that was one of the best and worst times……from the conversations people were having about stuff…

for example…

how people tell you off for not waving when they go past in their cars? I always get that…my “I didn’t see you” they take as a rebuff. But it’s albinism that does that !!

how they can miss facial expressions and therefore totally miss the point of a conversation…I do that !!!

how they don’t walk in a straight line and can miss the curb and guttering on a road. Hey.. me again.

the more I read of what they were saying, the more I knew this was me.

 

This explains why, if I’m more than a few rows back at a concert or a conference, I might as well not be there. My husband paid a fortune for me to see Cliff Richard for my 40th birthday. He was just a white rectangle from where I was. And Debbie Harry’s blonde wig fell off in the concert we went to. Everyone laughed, I didn’t know why… I couldn’t see what had happened, so was unaware until my husband told me.

So now I had to face it, it was more than likely that I had albinism.

Who should I tell?

No one !!

I needed to work this through by myself. Unfortunately it was like a grieving. All these years I had known I didn’t have albinism had come to an end. I went through denial, through anger (at the medical profession) , through the poor me, but never the why me, strangely enough….through a depression which I couldn’t find the cause of until later, which made me lash out at other people including my husband, who I almost left while struggling to come to terms with this….

and to a not yet full acceptance.

That will come, I know.

 

I nominated to go on the AFA (Albinism Fellowship of Australia, albinismaustralia.org) committee, but I didn’t want a role where my name might come up somewhere… or otherwise people might ring me or talk to me about albinism…

Why??

I don’t want them to know I might have albinism.

I’ve hidden it SO well til now !! (side note: this was an attempt at humour… like a PWA can.. HIDE)

What would they think if they knew that all these years, they’ve been friends with an albino???

Do you know what they think?

The ones I have told have looked at me and said “you’re not serious, are you? You mean you’ve only just worked it out? I’ve known for ever.

But I’m still not quite ready to publicly embrace the name I gave that girl in primary school. I have to grow into full acceptance yet.

 

So…if I had known from birth that I had albinism, would my life be different? Who knows? My parents may have done things differently for me including the four years we lived in Malaysia, but they bought me hats and tinted glasses and long sleeved shirts, I chose not to use or wear them.

I may have gone either of 2 ways with school bullies; either: retaliated with “and your point is….” Or curled in a foetal position and cried. Most likely the latter.

It may have influenced my career choices; it may have made me work harder at school.

Knowing I had albinism may have made me a stronger, better person accepting from birth that I had a condition and learning about it. It may have, or I may have rebelled against it and cursed myself, my parents, the world and God that I was the way I am.

I may have been more confident wearing strappy tops and shorts, or I may have been even more self conscious than I have been.

Would I have put myself “on display” with public speaking and amateur drama, as I did, or hidden away in case people didn’t like the way I looked?

I don’t know and really what does it matter?

Through the short time I’ve been with (others with albinism) I have learnt so much about myself, so much about albinism and the world of eyesight, yet I’ve barely scraped the top of the available information.

Since my time here, I’ve also “confronted” the optometrist. I told him he had offended me by diagnosing my albinism, but that I was never more glad of being offended, as it had been the catalyst I needed to confront myself and my condition. He was amazingly informative, and joined my horror at having not been diagnosed til this point.

How can someone go right through life and have never been told? I double checked with my parents, and I remembered that I had specifically ASKED people “am I an albino”…..with a negative response all round.

Last year I travelled to Sydney to meet (friends with albinism), other conference committee members. I really didn’t know what to expect.

Would they accept me?

Stupid question.

Look at them.

They are lovely, caring, compassionate, and damned funny people to be around.

Meeting them affected me hugely. I saw myself as one of them, and for the first time I really, really belonged.

I’m not looking for sympathy in that statement, just trying to give you a glimpse of the “coming home” feeling I had. These people just “got it” without me having to try to explain anything about the effect of glare or shade or long distance vision.

I have since then seen an ophthalmologist who gave me an absolutely definitive diagnosis of albinism.

I’m not a fraud!

He assumes that because my vision is comparatively good, I was missed by specialists looking for me to have “legally blind” vision, and so the diagnosis just didn’t come back in the 70s when my parents would have been responsible for my care and digital imagery wasn’t possible.

I am getting braver at admitting the albinism, and am so glad to finally know why my vision isn’t good and now, instead of pushing myself to see what others can, I back off and say “nup I can’t read that” and know there’s a reason.

So… where to from here?

Who knows.

Stay tuned, because if I don’t know what I’d have done before I knew what I do…who knows what I’ll do now I DO know !!!

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