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"HE HAS WHITE
HAIR!"
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"HE HAS WHITE
HAIR!"
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How many times have I heard that, or something similar? Sometimes the comments are from the mouths of children with an innocent curiosity, and other times they emanate from passing cars full of tantalizing teenagers. It is a rare sight to see; a man with snow white hair and dark sunglasses on a cloudy day. Only one person in every 17,000 (or so) looks like this, and the ones who do, know too well, the ups and downs of being different. I wrote this story in the form of a self portrait because I am one of these people. I hope that it is both interesting and encouraging for people who are, or know someone who is, dealing with the condition of Albinism.
Born on January 27th 1966, I popped out at some ridiculously early hour in the morning. What a shock! After previously having two "normal" looking babies, my mother, Jeanette watched in awe as this little white bundle emerged, and I was born. Doctors at that time knew very little about why my hair and skin were so white. It was later discovered that I had a hereditary condition known as "Albinism", caused from a recessive gene that BOTH parents MUST carry in order for this to happen. If both parents carry this gene, there is a one in four chance of albinism occurring in offspring. My older brother Scott, and sister, Jodi were not born with the condition. Along with the white hair and skin, there was uncertainty as to how much I could see, or if I could see at all.
As a
baby, I didn’t seem to respond properly to moving objects. I had no interest in the
toys that were put in front of me. I didn’t follow the doctor’s pencil as it
moved from side to side, and I was a late crawler. It was almost as if I couldn’t see
at all. My parents were totally lost. They were now facing the possibility that their 18
month old baby was blind. I was taken to my family doctor who had but one suggestion. He
told my parents to buy a very large beach ball. They did just that and when they got home,
blew it up, sat it in front of me, they cried as they watched me chase this ball all
around the livingroom. It had to have been the happiest day for them since I was born,
learning that their baby could see.
My eyesight was regarded as poor; 10/200. There was very little pigment in the retina. The
iris did not properly block light. My eyes danced around as though I was in constant REM.
I was nearsighted and had astigmatism, which is when the front of the eye is not perfectly
round causing even more distortion of light. All of this not only hindered my eyesight,
but also caused the under-development of my visual cortex, the part of the brain that
deals with sight. In fact, if there was some way to put new eyes in my head, there would
be little improvement, since at around 6 months the visual cortex has already undergone
most of its development. The "damage" has been done. Once diagnosed, I was
fitted with glasses that corrected the nearsightedness and astigmatism, but nothing else.
The lack of melanin in my skin, the stuff that protects the skin from burning, caused sunburns in minutes. The sunscreens that are available today were not around when I was young. Our family took frequent trips to Florida. They were very careful, keeping a constant double layer of sunscreen on me and placing me in good shade. Despite my parents’ profound efforts, I still ended up with a few really bad burns.
My world was a small one. Walking was not on my list of
things to do until about 18 months.. Why walk when crawling put me closer to the ground,
and closer to what I was doing and where I was going? Time passed and once I got bored of
the baseboards, heat registers and dog food, I figured it was time to move up in the
world. Behold…Craig, the toddler.
Things started to "look up" for me. I started learning ways of coping with my
sight limitations. I became more active and inquisitive.
This new freedom brought on some very
peculiar behaviors, some of which concerned my parents. I would sit on the couch and rock
backwards and forwards. I would pretend that I was a dog, quite a normal thing for a four
year old, but I took it to extremes. Picture this little white head stuck out of the car
window, barking at passers by. In the department store, I loved to pretend that I was
… get ready for this one … a camper trailer, latched onto the back of my
mother’s pants and hitting bumps on the highway, complete with sound effects and full
animation. Once home, I often got a bowl of Smarties and joined the dog down by her dish
for a hardy meal. I was a WEIRD kid at best. Craig’s world was one full of weird
sound effects, and off-the-wall behaviors. My parents were a bit concerned, but when they
asked the doctor, he smiled and said, "You have a very imaginative and creative
little boy here who will probably grow up to be a genius".