How we appear to others is a powerful thing. I've recently had the opportunity to relearn this seemingly simplistic concept and I want to share with you how it changed my life.
My appearance has always been important to me. I pay close attention to personal hygiene and grooming, make sure that I dress fashionably and appropriately, eat right and exercise to stay fit, and don't mind spending money on accessories that help to round out my public image. This attention to appearance extends to the accoutrements of being a person who is blind, too. When I use a cane, I make sure it is not scratched up or bent. I keep my guide dog well groomed and make sure that her harness is polished and not scuffed. And when I wear shades, they are attractive, contemporary and fit well. In fact, it was this attention to my appearance that prompted me to wear shades for almost 37 years.
My blindness was caused by retinoblastoma, and part of the treatment I received prior to age 3 included radiation to my left eye. Way back then (about 44 years ago), the science of delivering radiation to the affected spot was not as refined as it is today, and the "splatter" effect caused damage to my facial structure immediately around my eye. It took a while for the full effects of this to manifest, but by age 9, I could no longer wear a regular prosthetic eye on the left side due to damage to my eyelids and shrinkage of the eye cavity. Several plastic surgeries were attempted to try to fix this, with no positive outcome, and in the end I had to start wearing shades to cover the fact that I did not have a left eye.
When I was 17, my parents learned of a clinic in Iowa where they were making prosthetic eyes that would suit my purpose. In addition to making the eye, they also used a hard plastic substance to re-create eyelids and a rim around the eye that would then fit against my face. I was so excited! Maybe I wouldn't have to wear shades any more and worry about having Joe Public discover inadvertently that I had no left eye. Granted, the resulting prosthesis was better than nothing at all, but it was just not attractive enough to give up wearing shades. It looked too much like a piece of plastic stuck to my face with an eye in the middle of it. People actually asked me if I'd just had surgery because it looked so different. So I went back to wearing shades, this time to cover this less than attractive prosthesis.
About 15 years ago, I found another clinic that made a valiant effort to make me a new and improved facial prosthesis, and while it was better than the first one, it still was not very good. What's worse, it deteriorated with time to look even less appealing. So I continued to buy the latest and greatest in shades and wear them whenever I went out in public.
I need to interject here that I am very comfortable with the fact that blindness is a part of who I am, including its impact on my appearance. Although I am all too aware of how society tends to react to it, I do not think of blindness as being a particularly negative thing. I believe that I live, work and play as an equal to my peers even though not all of them accept me as being equal. I am confident that my appearance has always fallen well within the norm of acceptability and it has not hindered my progress personally or professionally. As a trainer for a national training and technical assistance project, I have felt absolutely confident to be square in the public eye without apology for either being blind or for wearing shades under all conditions. At the same time, I am not unaware that the general public approaches me with reserve if at all, that they have trouble initially accepting that I am the lead trainer or even a co-trainer of a significant project, that people in general are uncomfortable when they can't make eye contact. I'm equally aware of the role that shades play as a barrier to interaction, even knowing that it is a better role than would be played by a disfigured or not-too-attractive left eye. My approach has been to minimize the shock value and make the best of the resulting situation.
Early in 2005 I decided to do a web search to learn what is being done with facial prosthetics these days, and was surprised to find someone almost in my own backyard who is an expert in the field. Robert Barron formerly worked for the CIA where his job was to create disguises for agents that would alter their facial features significantly enough for them to go undetected in dangerous circumstances. He used a process that was also used in Hollywood to create masks for actors, and he honed his talent to a fine art because the lives of his co-workers depended on how realistic he could make them look. Upon retiring from the government, Barron established Custom Prosthetics in Ashburn, Va., where he makes prosthetic ears, noses, and eyes for people who have disfigurement due to birth defects, burns, surgery or other treatment such as radiation. I got really interested as I looked through his web site when I discovered that he makes the kind of facial prosthetic that I wear, only much, much better! I sent the link to his web site to my mother, sister, daughter and close friends, and the response was unanimous: "Make an appointment now!"
I made the initial contact, we exchanged e-mails and I sent pictures of myself both with and without the prosthesis I was wearing at the time, and we scheduled an initial appointment. After seeing me in person, Barron said that he was sure he could make me a much better prosthesis -- one that I could wear without covering it up with shades if I chose. We discussed both the process and the price and I agreed to go forward with it.
In the first sitting, he made a plaster mold of my face from just above my brow ridge to the tip of my nose. I had to sit very still, and most importantly, not move any part of my face during this procedure. He first painted on a thick layer of paste which hardened and dried very much like the masks used in facials. Then he put the plaster on top of this primary layer. The chemical properties of this substance caused it to get quite warm while it solidified into a mask of my face. It was not extremely uncomfortable, but it felt heavy and definitely warm. Once the plaster had set, he then gently peeled this mask from my face. He had a perfect mold of my face from which to begin forming the prosthesis. He took a lot of pictures from every angle, measured the distance from the pupil of my right eye to the center of my nose, and was very meticulous at gathering all the information he needed to make me a very realistic-looking left eye with eyelids.
The next two sittings were all about getting the color and texture just right. This is where Barron's talent as an artist was most noticeable. He fitted the newly formed facial piece to my face and then with tiny brushes and infinite patience, painted in the lines and shading to match my right eye and make this prosthesis begin to blend into my face.
The last part of the process involved putting in the prosthetic eye (the same kind of prosthetic eye that anyone might use, only cut down to fit the space available within the facial piece) and putting on the eyelashes. I was then shown how to use an adhesive to put it on my face and more pictures were taken.
The transformation was immediate! For the first time in 37 years I walked out without shades. I am told that if someone stands about a foot away from me and stares specifically at my face, they can see the line where the prosthesis meets my skin, but that any farther away than that the distinction is not discernable. When people look at me now, they see my whole face, including two very realistic-looking blue eyes, and the difference this makes is phenomenal. Family members laugh out loud with pleasure and tell me how good I look. Friends tell me how good it is to look over and really see my whole face. Strangers are much more likely to engage me in conversation than ever before. In general, people are much more comfortable with at least the simulation of making eye contact that couldn't be achieved through the barrier of shades, and they read and react to my facial expressions much more now than ever before. I feel more open, more attractive, much less like I have something to hide behind dark glasses.
Is there a down side? Well of course, there's always a trade-off. People are much more likely to point at things or ask if I can see something. Guide dog notwithstanding, people just have much more difficulty believing that I'm really totally blind. When I'm walking with a friend or colleague using sighted guide technique, it takes longer for other pedestrians to realize that I'm blind and not able to make the alterations sighted people make when walking in a crowd. But all these things are minor and usually rather humorous when compared to the overwhelmingly improved sense of self-esteem that is the product of my changed appearance. Does it really change how people accept me as a person who is blind? Well, yes, and it gets the door open sooner so I have the opportunity to effect that change through interaction.
I'm sharing this experience because I know that there are others out there who have some disfigurement due to whatever caused blindness. I want people to know that facial prosthetics are available and possibly an option, and it can really make a difference in your life. Yes, it's costly and it may be necessary to save toward having one made or seek sources for financial assistance. In some cases medical insurance will provide some reimbursement. For me, it was well worth the expense.
For more information on Custom Prosthetics, visit www.prosthesis.com.