I have had Stargardt's for 11 years now, but I am just now trying not to hang my head in shame of being disabled. My onset was when I was 15 and I went to drivers education classes just to be turned down at the eye test for the actual license, which the eye doc had said I would pass. My vision went from 20/70 to 20/100 in a matter of months and progressed to 20/200 before high school graduation. I was ridiculed when I let people see my disability, so I got into the bad habit of hiding it, i.e. not reading in public, pretending I could see what people were looking at, stopped doing my school work in school, and not asking to be put in front of the chalkboard. Even my high school guidance counselor said I couldn't do much having my disability. I am trying to break my bad habit of hiding this, so I apologize if I sound like I am complaining. My grades fell, and I never learned to be me with low vision. It is still a work in progress getting out of that frame of mind. I understand not wanting to look like a freak, I still wrestle with that one. But, we have to try to think of ourselves and NOT what other people might think of us. Vision loss is a very frustrating thing to go through. Lean on me WHENEVER you need it. Getting it out of your system can help you start to deal with this. It seems that some people out there without this problem think that if you aren't completely blind, you should have no problem. I hope that this whole experience is making me a stronger person.

From Tom:

The blurred-out faces are difficult to look at, but I find it uncomfortable for me to look at someone off-center. Instead I just look directly at their face and pretend I can see them. I'm pretty much living a lie. I think one other reason I don't want to look at people off-center is because I don't want them to think there is something wrong with me. It's like admitting I have a handicap and I'm not ready to do that just yet. Even in my classes, when the professor has the class sit there and read a certain section in the text, I pop open my text and pretend to be reading, like everyone else. Of course I'm probably on the wrong page, but it's fun to do. Am I the only one who has done this sort of thing? Or is everyone on this list "out of the closet" so to speak? I'm interested in hearing what everyone has to say.

From Dr. Jen:

Hi Tom,

I am a huge advocate of people standing up and educating those around them about their vision, but my husband also chooses not to do this. Not a soul at work knows he has a vision problem, and he has come up with a million ways to hide it. It frustrates me no end.

How can any one understand low vision if no one explains it to them? People imagine vision loss as the blind beggar on the street, how will they ever learn otherwise unless they know someone with a vision impairment who discusses it with them? How can you ever network with others with vision loss if both you and they are hiding it...likely you are crossing paths with others just like you every day and just don't know it.

Vision loss is the invisible change. No one can tell that anything has happened to you unless you tell them. Just think of the number of misunderstandings that could be avoided.

By assuming that those around you cannot possibly understand you or your vision, you make the same mistake as doctors who assume you cannot understand what is going on with your eyes, so they fail to give sufficient information to you.

From Sharon:

Dear Tom,

You describe my first 25 years with low vision. I began this journey at age 15. I experienced the pain of others looking over their shoulders and the strange looks I got once they knew why. It didn't take long to learn to do what you described: deny myself the connection so that I could appear "normal." I also opened the books in college and in other places--yes--to the wrong page. Imagine how much more foolish I looked to those who noticed,

I realized after many, many years of faking it, that I was becoming just that: a fake. And for what? Did it bring me closer to others? No! Did it allow me to feel better about myself? No! Did I gain anything good? Again, No! Instead I became nervous about facing situations that I couldn't have planned out exactly. For example, I would call a restaurant ahead of time to find out what was on the menu, so as to order something when out on a date. Little did I know that I was missing the winks from my date or the other visual cues that left them puzzled and often leery.

Lack of eye contact, as mentioned by Linda, is such a difficult blow. This society is based on eye contact and what that says about a person. I have been thought of as shifty or untrustworthy, because I don't make that eye contact. Even when I try to appear to look at their eyes I am not truly doing so.

I don't want to appear to criticize you or others. Please don't misunderstand. I have been where you are, and am slowly crawling out of the closet, wounded and lonely! I have found that the initial discomfort is easier than the self denial.

Most people make judgments either way. It depends on whether it is better to be thought of as visually impaired or weird. Most of those who know me would say I am both. Ha! By the way, I am the only one in worship team at my church that doesn't hold a book or paper. It is my personal statement to speak the truth about me. I do not condemn doing it the other way. I just warn you that it is you that is being hurt in the long run. It is said that it is not what we do that makes us who we are, but it is who we are that makes us do what we do.

From Sharon:

My Dear Tom,

I DO know your dilemma! I really do! The answer is both yes and no. There is always discomfort, sometimes even terror in the beginning, even after 29 years. That is because I still want to fit in and be like everyone else. That is because others sometimes are threatened by my disability. The only true freedom I have found is to suffer through the discomfort initially, and then enjoy the hours of freedom from fear of being found out or from pretense. I believe, though, that the work must begin with yourself.

You need to struggle down the path of acceptance. I hated that word! I felt that it meant that I would come to like it--NEVER! I changed the goal to coping and that helped slightly. Being young and in collage I was still trying to get a handle on who I was. This unpleasant secret wasn't in keeping with the person I wanted to be. This is why coming to a place of acceptance is crucial!

I ache at the thought of you or anyone else taking as long as I did to get there. Please let us, as a group and/or me as an individual, help you through this! I am so willing to talk and listen privately or publicly with you as you stumble down this road. You are absolutely normal for feeling and reacting the way you are! Don't add shame upon shame. You need to remind yourself, though, that you are just like anyone else inside. This is not just a platitude. It is the truth. Remember my theory that we are probably only as accepted as we are willing to accept ourselves. We can not be responsible for everything others will think about us. We can only be responsible to be the best "us" that we can be.

I wrote a poem that I am going to share with you. It is titled "A Secret Place," and I wrote it after meeting a lady at the park while I was playing with my son. I didn't tell her right away, and it became increasingly evident that this wasn't going to be a one-time meeting. I agonized over how to tell her now after I avoided it originally, I worried about running into her and not recognizing her, and what she would think. It all worked out, I told her, and we are friends now.

Please write to me anytime you want to vent or scream or whatever. I am not judging you. I did the same thing for two decades!

A Secret Place

From Donna:

From Sharon:

Hi Sharon,

I know what you mean about the changing nature of this stuff and the confusion that causes for others. The truth is, I have become more interested in what is best for me than them. I say this because, as you very clearly pointed out, this is not something you can explain easily, if at all!

I have a rule of thumb these days. If I am going to be tempted to pretend or deny myself the fullness of the situation, then I will tell those involved. If these aren't an issue, then who cares! I only care what others think if it leaves me feeling fake or misunderstood. An example: I was at a conference a few weeks ago. We came in late and sat at a round table with four other people. We were to be underlining things in the workbook and taking notes. I was not. We were also to introduce ourselves and say some personal things to one another. I, at that time, explained that I had a visual disability and may not appear to be looking at them. I also told them this was the reason that I wasn't taking notes or even opening the book. My brother (who also has this problem) was in a similar situation and did not give this information. It was communicated to the Pastor of the church (which his conference was at) that this individual would not be a good candidate for leadership because he did not make eye contact and was generally uninterested, as he didn't even open the book! I hope this is making sense.

We have to protect our dignity, and that can only truly happen when we are honest about who we are. Going around introducing yourself as Sharon, the visually impaired person, is not the truth either. We need to use tact and care, but if we are going to be left with the isolation of pretense so as not to face the discomfort of exposure, then we are in essence agreeing with the false stigma that there is shame and weakness in our lack of vision.

Forgive me if this sounds dramatic, but after a lifetime of the pounding I have taken around these decisions, I can't afford to spend time creating a false image. I have had to, and still have to come to some sort of peace with my reality and make visible the invisible.

You are correct, no matter what we do or say people are going to talk and judge. I try hard not to feel any responsibility to correct that. Instead I try to let the thoughts stop at the truth. There is nothing to hide, and there is no shame. I am valuable--not despite my disability-- just valuable!

It's not easy, and I haven't yet arrived. All we can do is encourage each other, laugh at ourselves whenever possible, and try to cope with integrity.

From Irving:

I am also a great fan of Winnie, the Pooh. Don't you think he would say, "Oh, bother. I can't see so well today. I guess I'll go over and talk to Piglet. I can't go to Eeyore. He would just think it was something awful. Tigger is too bouncy for me right now. He would jump out of nowhere and scare. Yes, Piglet is the person to talk to."

On the way to Piglet's house Pooh would have to stop and get something to eat from one of his honey jars, get it stuck on his head, and first thing you knew this would be the reason he could not see.