I get many questions about what causes my blindness and the easy answer is Albinism. Albinism is a lack of pigment in your eyes, skin and hair. Living with Albinism has had it’s challenges but it also makes me who I am and I love that.
Some of the challenges with living with Albinism are that well the sun and I do not get along. I will burn in what feels like seconds, and I mean burn not like a little pink, but like it hurts to lay on your back burn. I also never ever tan I get red and burn and then it goes away and I burn again there is no “oh my burn makes a good base tan”. When it is hot out and you want to go swimming in the pool and your hair turns a lovely shade of green from the chlorine in the pool ! This is never a good look !
The sun and my eyes hate each other more than my skin and the sun. I can not stand the sun in my eyes there are no sunglasses dark enough to keep the sun from hurting my eyes. It is so uncomfortable for my eyes that even though all I can see is a little bit of light I wish I could not. I have to keep the blinds in my house down durning the day it is like a dungeon in here. When I hear people say “in my home I want lots of natural light” I am over here wishing my house had less windows !
My eyes have a nystagmus which is something that goes along with having albinism. Nystagmus is the involuntary movement of your eyes or dancing eyes. I have a rotary nystagmus so my eyes move in a circle all the time this always made it really hard to focus when I had vision. Now that I only see small amounts of light it makes that light bounce around when it is really bright which can drive me nuts.
Living with Albinism makes us unique and it is a part of us. There are many people who live with albinism and are shunned because of where they were born and it is truly a nightmare that this happens today. I think that we are all beautiful amazing people no matter what. Albinism is just a part of us that makes us who we are but we are not magical, we do not have red eyes, we don’t all look identical because like every person there is a wide spectrum of albinism and an even wider range of people and personalities that have albinism.
Today June 13th is International Albinism Awareness Day, I am proud of my albinism and the person it has made me today and I hope that every person living with Albinism can feel the same way !
Until Next Time !
Ashley and Rick
All content is copy written to Ashley Nemeth no use of any materials published are to be used without permission.