Thursday, February 18, 2016

Hello, My Name Is...

Pink and white "Hello my name is" label
I realized the other day that in the time since I began this blog, I've shared a few craft ideas and projects, some information regarding blindness and my opinions around advocacy and "inspiration", but I have not shared much about myself, my cause of blindness, or my story.  Some of that will be shared over time and made evident through related posts, but I wanted to take a minute to share a little bit about myself and my story, especially with a number of new people following the blog.  I don't know if I will end up reaching more readers over time or not, and I'm perfectly fine with that.  My hope is that I may reach even one person in a similar situation, or one parent raising a blind child, who my story may resonate with.  It is only through sharing our strengths and our struggles that we may gain strength from one another.

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 guide dog Megan and I while attending a gala fundraiser
for a local blindness skills training center, Vision Loss Resources.
I am wearing a formal black dress and pearl necklace and Megan
is seated next to me in harness and wearing a pearl necklace.
So, here's the medical low down:

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.
There are different types of albinism, something research has only shown over the course of the last 10-20 years, so there is a great deal of variety in both physical presentation (hair, eyes, and skin shades) as well as a large spectrum of visual impairment.  There are individuals who have only Ocular Albinism, in which case the lack of pigment is only present in the eyes--otherwise they have normal pigmentation of the hair and skin.  The spectrum of visual impairment with albinism is incredible to me.  I have friends who have very little visual impairment and are able to drive and safely function as a sighted person.  On the other end of the spectrum, I have friends who have only light perception and some shape recognition, while this is very rare, it does happen.  My visual acuity falls between 20/200 and 20/400.  I am "legally blind", a term originated by the Social Security Administration defined as:

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.
While I've been blind since birth, I didn't learn most of the alternative techniques and skills of blindness until I was in my late teens and early twenties.  The phrase "times change" is so true--when I was a child, kids with albinism were given large print, seated in the front of the classroom, and otherwise taught to function as a sighted person.  There are many problems with this, not least of which is that it was difficult and dangerous.  Difficult in that it took me substantially more time to complete homework assignments because I was straining to use my vision.  Difficult in that I frequently had terrible headaches and neck pain due to poor posture while trying to read and the strain on my eyes and body while trying to use my vision.  Dangerous in that I have no idea how many times I fell or ran into something because I didn't see it.  Dangerous because my eyesight is unreliable and there I was relying on it for things like crossing the street.  Dangerous because this expectation of passing as a sighted person set me up for many years of faking it, pretending I could see better than I could, hoping I was crossing when it was safe instead of knowing it was, low confidence, and shame around the fact that I was blind, shame that kept me from using the tools of blindness regularly even when I was given them.  I don't want this to be misunderstood--my parents and educators did what they thought was best for me.  The access to information, community, and advocacy that parents today have was not present when I was a kid.  My parents did the absolute best they could with the information and professional guidance they had at the time.  If I had been born ten years ago, it is very likely that my parents would have been encouraged to teach me the tools and techniques of blindness, simultaneously offering me access to large print and visual materials.

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"


  1. Beautiful..raw..honest and revealing. I wish we knew more, I will never know how things could have been different for you... Despite all the challenges you were presented with, you've blossomed well above anything I could have ever dreamt for you, and I imagine there's so much more ahead for you-no limitations, the world is wide open for you to change it in whatever way you wish! I love you dear daughter and am so grateful God blessed me with you!

  2. Love you Mama. We all do the best with what we know at the time, and that's exactly what you did! I turned out ok! ;)