|Pink and white "Hello my name is" label|
I hold many roles in life. I am a wife, mother, daughter, sister, friend, and advocate. I love reading, writing, singing, the arts, crafting, and creativity. By profession, I am a vocational rehabilitation counselor and have worked with the general population (people with all disabilities) and the blind population (solely serving blind, visually impaired, and Deaf-Blind individuals). Currently, I work within our home as a stay at home parent. I am sensitive, hard-working, compassionate, determined, and fiercely independent. I am forever in search of growth, development, and learning--striving always to become the very best "me" I can. I am also blind.
My blindness is due to a genetic condition called "Oculocutaneous Albinism". In common culture and media, you may have heard of a person with albinism, or you may have heard someone being referred to as an "albino" (more on that later, but I highly suggest not using that term to refer to people). Hi there friend, that's me! If you break it down, this means that my skin, hair, and eyes are affected by a lack of pigmentation. As a result, my skin is very fair, my eyes are a light blue/gray, and my hair is very light blonde. Contrary to the suggestion of popular media, people with albinism have neither red eyes nor magical powers (too bad really, it would be beyond awesome if I could snap my fingers and have my kitchen clean itself!).
|Photo of my parents and me when I was very young. You can see|
that my parents both have normal pigmentation. I am the only
person in our family line with albinism as far as we know.
1. Reduced central visual acuity of 20/200 or less in your better eye with use of the best eyeglass lens to correct your eyesight; or
2. Limitation of your field of view such that the widest diameter of the visual field in your better eye subtends an angle no greater than 20 degrees.
Definitions are great and all, but most people ask me what "legally blind" means, their question of course referring to "how" I see, and how my residual vision functions. I would caution you that visual impairment and blindness have so many causes and interactive factors that the answer to this question is entirely individual, and it is very difficult to explain. I have never seen out of eyes that function correctly, so I have no period of time of perfect eyesight with which to compare my eyesight. With the medical description in mind, they say that what someone with 20/20 vision can see from 200 or 400 feet away, I would need to be 20 feet away in order to see. That seems an inadequate description though as well because even 20 feet away I suspect what I see is blurry and very non-descript compared to someone with 20/20 eyesight. I have substantial photophobia, to the point that, if I am outside on a sunny day or I am walking through a store with fluorescent lights, I typically cannot keep my eyes open, sometimes even with sunglasses on. My vision is also very poor in darkness with periodic lights (an example would be night time in a residential neighborhood with street lamps and outdoor house lights). In those conditions, my residual sight is rendered useless. When conditions are such that I can see, what I see is typically lacking detail, and I suspect blurry in comparison to what someone with 20/20 vision would see. My functional vision also declines as the day goes on and my eyes become fatigued. Those who are close to me say that my nystagmus (repetitive, uncontrolled movements of the eyes) is a tell-tale sign when I'm becoming more tired as my eyes move more as I get more tired.
|Me, dressed up and ready to go to a fundraiser|
for our local library with a theme based on
Mad Men. Hair, makeup, and my blue rockabilly
dress were all chosen to compliment the theme.
As it was, my parents never allowed my blindness to result in low expectations. They expected inclusion and full participation, responsibility, proficiency, and high academic performance. They expected me to strive for my highest potential. By maintaining high expectations of me from day one, my parents set the stage for success in all areas of my life--including as a blind person.
So, welcome to my world! I realize this is by no means a thorough introduction, but I will continue to share over the course of the next few weeks!
Until Next Time,
|Vertical rainbow striped background with white letters spelling "Nicole"|