“Shame was the reason I decided to describe myself as ‘blind’ versus ‘visually impaired’ because it was important for me to accept the word ‘blind’. Once I did this I was able to get a grip on my fear and move forward.”
I’m not sure why I felt shame when I lost my eyesight but I think it was closely tied to my personal biases and lack of understanding where blindness was concerned. In walking through the process of sight loss and facing my shame/fear head-on I was able to move forward.
Do you Face Everything And Run? Or Face Everything And Rise? Fear can motivate or repress and your response is a matter of choice.
Choosing To Rise:
The first step is doing an honest self-assessment. Like following a map, unless you know yourself, you will get lost.
The next step is to set short and long-term goals.Goals should always be written, periodically reviewed, revised and once they are met, new ones should be set.
The third and final step is to stay the course.When you get derailed, get back on track and keep pursuing your dreams. Do not let anyone, tell you that you cannot succeed.
When it gets down to it the choice is up to you. You decide how to navigate your path to success.
Image: Abigail (Abby) is in the background of the text with her white cane and handbag.
While there is no cure for glaucoma it is preventable. If you are at a higher risk it’s important to take care of your vision by having periodic dilated eye examinations. You can find more detailed information on Glaucoma Research Foundation.
Back when I was a youngster through my high school years, there were many days I wished I could just disappear. I was a prime target for bullying in school because I was so quiet, shy, and afraid, and after school homelife wasn’t much better.
Thankfully time, distance, and many therapy sessions later have muted most of my childhood memories. There are however triggers from time to time that take me back to a specific situation.
If you’ve been following me for a while you know the primary focus of this blog revolves around style as it relates to blindness. However as I’ve said many times we are so much more than how we appear which is why I weave stories of my life into my outfit posts. Today’s memory partially revolves around the brightly colored fleece sweatshirts in the attached photos (more on this in a minute).
For years I thought I was different because I grew up in a dysfunctional environment however I’ve come to understand my main issue was unworthiness. In adulthood my codependency evolved into a strong desire to strive for perfection and to always be in control.
While my need for control had its own set of issues, when it came to someone I cared about being threatened my lioness instincts kicked-in. One of my bullies found this out firsthand when he decided he was going to pick on my little brother, to this day I still have the scar to prove it, I chased the creep down, unloaded on him and didn’t realize until afterwards that I skinned my knee.
Through protecting my younger brother my inner crazy was unleashed. So it only made sense when one of my other bullies thought she could still push me around, I channeled the crazy and from that day on the bullying ceased.
If I thought discovering I had a lioness instinct was huge imagine my surprise when, in my last year of high school, I finally found a way to become accepted. Prior to 11th grade if I wasn’t in school or studying, I was sleeping. Sleep was my way of escape so it really wasn’t a revelation that being introduced to alcohol would bring out a Steph I didn’t know existed.
For the first time in my life I was outgoing and fun to be around. Finally, I could become the person I always wanted to be because alcohol relaxed my inner turmoil. I now had a social life and was one of the kool kids.
When I began having children it was time to get serious and I remained true to my childhood vow that life would be different for them. I was unafraid to show them affection and would hug, kiss, and tell them at every opportunity that I loved them. I needed them to know they were valued, wanted, and more importantly loved. I would have fought to the death for them however while I loved them like crazy, I was strict because of that whole codependency/perfectionism thing.
Looking back now I can see how I’ve become so intense and how losing my eyesight would push me over the edge. In order to move onward after a life-altering situation like sight loss at some point you have to succumb to the circumstances.
So what does all of this have to do with fitting in? The answer in three words: The. White. Cane. When I first began using my white cane I felt like it was a beacon. I stood out and at times felt uncomfortable but I had to keep pushing through because as I saw it I had two choices: give up or give in. I chose to give in because giving in meant that I was going to accept my situation and learn to work within the parameters set before me.
In today’s photos I decided since I stand out with the white cane I might as well go all the way and wear bright, attention-getting tops along with my little granny boots and coated jeans. These fleece sweatshirts are two of three (third on is displayed in Mix and Re-Mix) that I got for $6.00 each at Kohl’s. Following and in Alt-text are descriptions on the photos.
Outfit #1 – fluorescent coral fleece sweatshirt, black-coated jeans, black lace & faux leather lace-up booties with a kitten heel and a multi-colored fringed scarf (in shades of burgundy, brown & white) tied like a loose neck-tie. Accessories are lacy diamond-shaped dangling earrings, silver bracelet and rings.
Outfit #2 – This outfit is exactly the same as outfit #1 except I’m wearing a bright peach colored fleece sweatshirt.
Outfit #3 – This outfit consists of the same jeans & booties but I’m wearing a gray & white striped tee and a black boyfriend blazer cuffed (cuffs are black & white plaid). Accessories are a long pendant fringe necklace, silver and gray beaded stretch bracelet and the same earrings as in outfits 1 & 2.
If you’ve experienced severe vision loss you’ve probably heard these words before and their impact can be devastating. Imagine then, the excitement on the birth of your first child and upon delivery, when the doctor places the baby in your arms he tells you that your baby is blind and has a genetic disorder for which there is no cure. This is what happened to Teri Shields the mother of Amy Hildebrand, the young woman I’m featuring in today’s Fierce Fridays.
“…and the doctors told my parents I was blind. My mom was 20, my dad 24, and as if they didn’t receive enough shock when the doctor placed a white haired baby in their arms, he then proceeded to tell them that I had a severe case of Albinism, and that there was nothing they could do to “fix” me.”
After Amy was born, the doctors told her parents that she wouldn’t be able to do a lot of things because of her blindness due to severe albinism. Albinism occurs when one of several genetic defects makes the body unable to produce or distribute melanin, a natural substance that gives color to hair, skin, and iris of the eye.
The National Organization for Albinism and Hypopigmentation (NOAH) states that approximately 1 in 17,000 people in the U.S., has some type of albinism. Vision problems that are not correctable with eyeglasses occur in all people with albinism however the extent of visual impairment differs depending on the type of albinism.
While Amy’s albinism makes her unique, I was struck by her resolve to prove the doctors wrong as detailed in an excellent article by Susan Donaldson James (ABC News). One of the things that impressed me most; aside from the fact that Amy’s a wife, mother of 2, professional photographer, and Best Day Ever business owner is her tenacity.
Back in 2009 Amy challenged herself to a 1,000 day journey where she would shoot a photograph that summarized each day and then post to her blog, With Little Sound. She started her challenge on September 14, 2009 and ended it with the 1,000th photograph on June 12, 2012. I have not seen all of Amy’s photos but I can tell you the ones I did see were awe-inspiring. It takes special fortitude to make a commitment and follow through like Amy did on this challenge.
During an interview in 2012 with Rachel Devine and Peta Mazey of Beyond Snapshots, Amy was asked “What is it about this project that speaks personally about you?” “Thankfully my parents weren’t the type to believe everything they hear, and so they started searching for doctors who had studied the albino eye, in hopes there might be some way I could gain my sight back. Ironically enough there was a young medical student here in Cincinnati that was wanting to research the affects of contacts on infants’ eyes. My parents eagerly signed on the dotted line, and at three months I had my first pair of contacts.”
“A few weeks later I was grasping for shadows and the experiment was deemed a huge success. The med student and I were written up in medical journals across the country. The next twelve years or so I was fitted for all different types of glasses and contacts, but around fifth grade I sort of topped out. I can still remember those early days though, around the age of 2 or 3 studying shadows and light on the kitchen floor of our apartment. I think even then I knew how lucky I was.”
When I read the above excerpt I had goose-bumps and I realized that Amy came by her steadfastness honestly. To put oneself in the place of her parents who fought valiantly on her behalf so that Amy would have the same opportunities in life as her sighted counterparts speaks volumes.
“My photos are sometime straightforward and sometimes more imaginative, but I treat every one with the mindset that I never would have seen these amazing images if it had not been for my parents, that med student and God’s grace.”
After reading the Beyond Snapshots interview and the ABC News article, I was not surprised that Amy would eventually come to love and then become a successful photographer. Amy, you are a remarkable person who is proof that in the paraphrased words of Jesse Jackson “if the mind can conceive it, the heart can believe it, then you can achieve it”!
If you haven’t already done so by clicking on the links provided in this post you can visit Amy and her husband Aaron’s website at Best Day Ever.
“Strength does not come from physical capacity. It comes from an indomitable will.” ~Mahatma Gandhi