In recognition of White Cane Safety Day, I decided that today's WAGR Wednesday piece should be about what vision is like for our loved ones with WAGR.Here are three things I have heard over all of Evie's 10 years:
"Oh, she looks so tired..."and
"I don't think she's as blind as you think she is," or "I think she can see more than you think she can."and
"Won't glasses help?"
First thing's first, the sleepy baby...
|Age 1~Trying to see her world.|
People with Aniridia have no irises...the colored part of your eye. The iris acts as a protective device against many factors that wage war on the eye, one being LIGHT! That being said, you can imagine how BRIGHT things are for those with Aniridia. Being all pupil, Evie is VERY photo-phobic and often will wear her sunglasses even on the cloudiest of days. Yes, she often will look sleepy because she won't open her eyes extremely wide as one might usually do if the iris is there to protect the eye from bright light.
Another thing that many people with Aniridia experience is ptosis of the eye. This is a droopy eye lid, which varies in severity from case to case. In Evie's case, she spent the first two years of her life gazing through about a 1/4 inch slit of space to see the world around her. As she became more able to manage her gross motor movements, she would hold her right eye lid up so she could get a better view. She never touched her left eye, and that's because her brain may have never learned to use that eye as she had undergone several surgeries on that eye due to her glaucoma. When Evie was about 22 months old, she had a surgical procedure to lift those eye lids so she wouldn't have to do all the work herself. What a difference that made, but she still has a "sleepy" look about her at times, so we still hear about how "someone needs a nap."
|After Evie had her Ptosis Surgery|
I don't think she's as blind as you think she is...
Evie runs around, climbs stairs, swims, dances, rides horses, writes, reads...so, people who aren't familiar with the variations in blindness often don't think she's blind. There are many factors, however that affect the level of visual acuity one has. Take for example the fact that Evie has had consistent vision since birth; she has not LOST vision and she has not GAINED vision. So, if it's all one knows, than one may be very comfortable with that level of vision. She learned to run without seeing out of her left eye, and only seeing a blurred vision through her right...she learned to read with just a blurred right eye...she learned to dance with no peripheral vision and just looking through a blurry right eye...IT'S.ALL.SHE.KNOWS.
What you don't know CAN hurt you...if Evie doesn't know there's a post on her left, she will run into it. If Evie doesn't see the car mirror on the left when walking through a parking lot, she will run into it. If Evie hasn't been to this house before and races through the kitchen, she will trip over the cat or dog food bowl and slam into the counter on her left. If Evie is supposed to be following a circle of cones and running in a circle around them, but they are running counter-clockwise...she will run in a direct line straight out because she can't see the cones on her left.
|Jenny (from England) and Evie at WAGR Weekend 2013|
Yes, she is, indeed as blind as I think she is.
Evie's white cane has given her tremendous independence and safety. She has been using it since she was three because we learned at a conference that kids who start with their cane at age three are less likely to reject their cane as they get older, and others have learned to see the cane as "part of them." PLUS...Evie's vision is very fragile...we could wake up tomorrow and it could be worse than it is today, (it sometimes goes that quickly with Aniridia, cataracts, dry eyes...all of dangerous factors that can pop up quite unexpectedly in our WAGR world). We want Evie to know how to use a cane before she is DEPENDENT on her cane...why wait and put the pressure on her when she'll be adjusting to other changes in life? Let's do it now.
Can't glasses help???
Glasses help to correct the refraction of light that comes through the cornea and the lens of the eye. But, get this...in the eye of a person with Aniridia, the main problem with vision is that there are not enough cells at the back of the eye that will transmit the messages received by the eye to the brain. (Aniridia Network) While some people with Aniridia DO wear glasses, it is to help them with the same type of near-sightedness or far-sightedness that we are used to hearing about in people with typical eyes...it does NOT help the type of vision loss that comes from Aniridia itself.
This was a longer post than I'm used to doing...so, if you made it this far, CONGRATULATIONS! For me, White Cane Safety Day was a day for me to learn more and tell more. I appreciate all of you who join me in recognizing this day which celebrates the accomplishments of such extraordinary people.