A couple of weeks ago I received an email from a concerned parent of a young girl who wears an eye patch. Recently she had been encountering people who made fun of her eye patch. In responding to her, I felt an urge to post the email here, hoping it would reach other children like her. Feel free to comment at the end. Thanks, iPatchMan.
Hi [Concerned Mother] and Group,
I am glad my name was in the subject line, so it got my attention. I am sorry to hear that your daughter is having some trouble with kids at school. I cannot imagine how it would have been back as a kid to go through all of this.
If I could sit down with your daughter I would tell her that I understand a little bit of what she’s going through right now. Having worn an eye patch for the last 4 ½ years myself, I know how much of an adjustment it is – for the person wearing it and the people who encounter it. That said, I believe wearing the eye patch has been a source of strength for me and I hope in telling you my story that your daughter may find some inspiration.
I tend to write long emails, so please bear with me.
I had my JPA at age 25, while a senior in college. You can read more about my story here: www.ipatchman.com. After a successful surgery, I was affected with nerve damage which caused paralysis in my right eye and facial muscles. As a result, I saw double and used an eye patch to cover my right eye. Nevertheless, it was hard for me to face my new reality as a pirate and deal with everyone else’s looks. The way I have dealt with wearing an iPatch (that is my way of writing it, makes it cool like an apple product) is by owning the look and owning the persona. I get the question all the time, why are you wearing an iPatch (I am happy when I get it, cause it is better than stares, and much better than no stares at all!). I have a whole arsenal of answers, everything from “I was abducted by pirates when I was young” to “remember when your mom told you not to run with a scissors in your hand? Well, DON’T run with a scissors in your hand!”. I cannot go around without little kids saying “mommy, mommy, look! It’s a PIRATE!” while their little faces glow (once I even got called a captain which brought me more honor then I deserved). And of course there were the fears of job searching and dating and just being accepted. Own your Ability is what I always say (disabilities mean nothing to me). I created a whole super hero in my mind, called iPatchMan (he even has his own Facebook account www.facebook.com/iPatchMan), and turned him into my sidekick. My first birthday party after surgery was an iPatch Party. Everyone had to come with an iPatch on, and there was an iPatch cake made that looked like an iPatch! I mixed this party with my first Annual iPatch Design contest where all who wanted to could submit an iPatch that they designed (I have since had a party like that and a design contest every year, more about that later). People had the best time seeing through my “eye” for two hours and experiencing what it’s like to wear an iPatch. I became THE iPatchMan on campus, and everyone knew me (it is really hard to forget someone with an iPatch). Turns out it was not bad for job hunting as recruiters always remember you from school networking events, and you leave an impression in interviews (I now work at one of the top consulting firms in NYC as a Healthcare Consultant to Fortune 500 firms). It worked out not bad in the dating scene and I met my wife Amanda in my last semester at Columbia and we got married this past August. At my last iPatch Party, Amanda got a ton of arts and crafts supplies from Michael’s and had an iPatch Design Table at the party itself. It brought everyone back to 2nd grade, and everyone loved it, making iPatches for the contest at the party. Since my surgery I have been dedicated to the cause and have been active at the Children’s Brain Tumor Foundation, mentoring young adult survivors and teens and heading their volunteer core (and for the past year serving on the board of directors of CBTF).
Most of the time when I am asked about my eye, I answer the truth, I say “I had brain surgery.” It seems to have just as powerful an effect. I always tell folk at CBTF that the kids who have gone through all this when they were young are the real superheroes. I admire them, as they learned to be strong at such a young age.
Recently I have been having trouble with my eye. Since I do not blink, my eye is very dry, and my cornea has begun to break apart. I aggressively lubricate my eye, but I can no longer sustain it that way. I have finally come to the conclusion (last week actually) that it is time to listen to the doctors and have a gold weight put in my lid. Since I was going to have surgery, I decided to talk again to a doctor who does the eye muscle surgery as well (been pushing that off for 4.5 years, since I have been perfectly content with my iPatch). Two things triggered my new interest in the eye muscle surgery. The first was a friend who had a JPA at age 25 that I had referred to my brain surgeon and who later on had the eye surgery successfully and was able to recover his bi-noculer vision. And second, I paid $16 to see Avatar in 3D and could not understand why I had to put on sunglasses to watch the Smurfs. Needless to say I cannot see 3D!
So I have decided to schedule my surgery to fix my eye lid and my eye muscle in one month from today. But that is not the end of the story. I have been having long discussions with Amanda about what this means for me, for iPatchMan and for everything I have created over the past 4.5 years. You see, I feel that in some ways, I have become iPatchMan! HE is the leading character in this TV show, and I cannot just go and kill him off. What about my website, blog, the news articles, the essays, dozens of iPatch designs, my iPatch Parties and Cakes, my T-Shirts, my iPatch business cards! And what about all those kids at CBTF who know me as the Volunteer with the iPatch, what about all those young adults I have told never to be ashamed of having brain surgery and to own their abilities? What about the people at work and the friends I have made over the past 4.5 years who know me no other way? What about me? Turns out I have100 more times the fear about taking off the patch then I had that first day I put it on!
In the end, I am still Akiva but will always be iPatchMan. It was not the iPatch that did all this but me. Yes, it was the tool I used to cope with having brain surgery and getting all my abilities. It was the way I chose to express myself and to feel like I am normal (how I decided It was normal to wear an iPtach is a question for my future therapist). But we all find our ways to cope and surround ourselves with the people who give us support and help us through it. I surrounded myself with a community who accepted me for who I was both despite and for the patch. And that was key to accepting who I was in the end.
The majority of kids will learn to accept your daughter for who she is and with or without her patch. And she can tell the jokes, or the real story to the ones that ask, but if they do not accept it then, I guess she might have to eventually tell them to “walk the plank.” But hopefully she never has too.
I hope this was helpful in some way, Please do not hesitate at all to contact me with any questions or comments. I would love to hear from you.