Since my visual impairment is not completely obvious upon meeting me, it is usually up to me whether I tell someone I am first meeting about it.  As I mentioned in a previous post, I see a counselor in order to discuss some of my struggles with RP.  She told me that one of the ways I will know that I have really accepted my vision loss is when I can freely tell people about it, whether the cashier at the grocery store or someone I’m hanging out with for the first time, and not feel completely emotional about it.  I understand her point to a certain extent, but as my sister has mentioned before, I don’t want RP to be the first thing someone thinks of when they see me.  It’s nice to get to know someone before saying anything, so that they know there’s more to me than RP.I realize this dounds a little crazy and some people (especially w/o RP) may be thinking that it’s not a big deal or that anyone who can’t look past a visual impairment isn’t worth getting to know anyhow.  But I don’t think it’s anything people would do consciously or maliciously– I think we just sometimes have a one-track mind when it comes to first impressions.  Let’s admit it; you see someone who is tatooed from head to toe with missing teeth– you’re going to form an opinion.  And I can’t say that I haven’t made judgments in my head when first meeting people (“Oh, they seem a little full of themselves.” etc)

In the past, when I have waited a bit to tell a new friend, I always feel so relieved if they say something like, “Wow, I never would have known.”, as if I’ve somehow gotten away with something.  Yet I cringe when I hear, “Yeah, I kind of wondered why you didn’t wave at me when I waved to you in the hallway or seemed kind of lost going into that restaurant,” or worse yet, “Oh, so-and-so already told me how you can’t drive and all about your vision.” as if they’re talking about something as insignificant as not having enough change at the pop machine.  This may sound contradictory– wanting RP to be a non-issue while also not wanting it to be brought up so casually.  I think it’s more that I feel it is my place to first bring it up to someone– not other people’s business to share when I’m not around.

I’m not sure why I think it should only be my place to tell people.  It could be that I’m afraid incorrect information will be passed on (i.e. when a person I was talking to just thought it was something viral that would go away with antibiotics!)

I’m also not sure why I feel such a sense of shame and embarrassment about it– as if it’s anything I can even control.  I remember walking into a restaurant about 10 years ago to use the bathroom, and since it was very dim, I circled the room several times before tripping over a stool and finally stumbling into the bathroom.  A woman working at the restaurant came up to me and asked, “Young lady, have you been drinking?”  I was mortified.  One would think at that point I would simply explain that I’m visually impaired, right?  But I was so taken aback and embarrassed that I simply found my way out of the restaurant as quickly as possible, got into the car where my husband, Ben, was waiting and began to sob.  After I told Ben the story, we actually began to laugh, and I could definitely picture how a person stumbling around would appear wasted!
I do think that I have come a long way since that incident.  When I went on a mission trip to Paraguay 4 years ago, for example, I told our team of people– most of them strangers– immediately.  And I find myself speaking up even in stores now. Yet it still doesn’t feel natural to say.

Sometimes it feels more natural to just stretch the truth.  When checking out at Trader Joe’s a few months ago, I couldn’t see the credit card screen to click “accept” or where to sign my name because the screen was really faded and dark.  Thinking quickly, I said, “Oh gosh I’m not wearing my contacts today and can’t even see this screen!”  The cashier was like, “Oh, that has totally happened to me– here, I’ll just put your pen on it for you.” Even the man in line behind me started talking about how blind he is without his contacts.  I felt right at home and didn’t feel an ounce of embarrassment.  But it wasn’t the truth!

Should I settle for telling white lies or hope that telling the complete truth will get eaier? Just the other day I was checking my 5-year-old into the doctor’s office and was asked to sign some papers.  The receptionist saw me looking around for a pen and replied, “Oh, the pens are right there,” making a large sweeping motion with her hand, and walked away to make photocopies.  I turned my head from side to side, scanning the counter, looking for this obviously-placed pen, but still did not see it.  I looked down to ask my daughter to help me, but she was at the drinking fountain.  I felt my face getting hot and my anxiety level rising before realizing that I was making myself frantic over a pen and needed to just ask for more help.

When the woman returned to the desk, I simply said, “I’m sorry I still don’t see the pens– I’m visually impaired.”  She immediately handed me a pen and said, “wow, you’re doing pretty good then!”  I know she meant it as a compliment, but for some reason i felt really emotional, as if I would start crying if she said another word to me.  So I quickly sat down with Lucy and began reading a book to her, but then felt paranoid that the receptionist was watching us, wondering how I could read fine but couldn’t see a large container of pens.  I, of course, started thinking about how I should have been more specific and just told her I didn’t have peripheral vision.   Another tip that my counselor brought up is to have a specific, rehearsed phrase to say, pointing out that the more I say it, the more natural it will feel.  I am willing to give it a try but am also curious how other people with RP handle this.

So all you RP’ers out there…. I know most of the comments thus far have been from our family and friends (thanks guys!) but if there’s anyone reading this who can relate, can you please comment on how you feel about telling people, particularly strangers, about your vision.  Do you have a certain “line” or phrase that you tend to say?  And does it get easier the more you do it?

I guess the question is not really “to tell or not to tell?” but “how to tell?” and “how much to tell?”

I am afraid of flying balls.  (please take a moment to snicker to yourself if necessary).  Ahem, for a person with limited peripheral vision flying objects of any sort can be dangerous.  But it seems flying balls have been the ones I’ve had to deal with most in my life.  I can recall being smacked in the face by one on several occassions.  And what better time is there to be smacked in the face with a flying ball than elementary school?! Continue reading

I always felt I should possess some amazing talent to reconcile my missing rods and cones. Perhaps if I stood out as a musician, athlete, or scholar, I would not stand out for my lack of vision.

My parents took me to voice lessons with a nice, old nun in a dark, scary convent when I was eight. Yet “Go Tell It On The Mountain” practiced 50 times over did not improve my voice. I auditioned for the Young Naperville Singers in hopes of improving, but the director said she had heard kindergartners who could hold notes better than my third grade voice. That ended my hopes of becoming a female Stevie Wonder!  I also tried my luck at cross-country, a fabulous sport where there is no unforeseen ball to smack you in the face.  I was a good runner, but didn’t stand out as the one who won the races, and in my narrow vision of compensation I wanted to be that winner.

I think we’re taught this type of compensation in America. If you’re not right-brained, you better be left-brained: and if you’re not left brained, you sure as heck better be right. If you’re both, you’re blessed. If you’re neither, there’s something terribly wrong. If you’re lacking in looks, you better have a superbly gregarious personality. If you have no personality, you better at least be a genius. And on it goes.

I’ve come to learn that we should pay attention to our strengths, but we shouldn’t rely on them to block out our weaker areas. Our challenges will still be there, and we must deal with them. Our equation of wholeness is oftentimes flawed-a visual impairment is not a -50 and a great voice is not a +50. A visual impairment could be a +10 and a great voice a -25, depending on how they are used to shape and teach us and those around us.

Ever since I can remember, I’ve wanted to be “normal”.  I’ve wanted to just blend in and not make a spectacle of myself (which is pretty hard to do when you’re running into poles and such.) I’ve literally pictured what my life would look like if I was “normal”, and by normal, I of course mean perfectly-sighted.  I would live out in the country– or maybe I wouldn’t– but I’d at least have the choice to live in the boonies because the “normal me” could drive.  I’d have some job that required a lot of driving– like a pharmaceutical rep– or maybe I wouldn’t– but at least I’d be able to choose a career that involves driving.  I’d play beach volleyball– or maybe I wouldn’t– but at least it’d be an option on a hot, summer day.  You catch my drift;  “normal me” has a lot of options.The funny thing is that most of my “normal me” fantasies don’t envision my life all that different from what it is now– I’d still be married to the same amazing man, have the same sweet children, the same supportive friends, live in a similar house with a similar career path, but I’d be a much “better me”.  I’d look better (because I’d be able to do my makeup better if i could see it more clearly, of course!), act funnier and wittie (because I’d see funny things all around me), be a more-together and fun mom (wouldn’t lose a thing if I could see!), be more outgoing, athletic, involved…… I’d just be me with a little boost.Okay, so “normal me” is beginning to just sound like “perfect me”.  Definitely not saying I would be perfect, but I really can’t help but think I’d be BETTER.  I know that most people have their “thing” that makes them feel abnormal– the family they grew up in (probably half of America for that one), some physical trait that they don’t like about their face or body, some secret about their past, some act that they wish they hadn’t done or hadn’t been done to them…… there are probably very few people who would say they feel “normal”, whatever that word really even means.

But if so many people don’t fit into being “normal”, why do I sometimes feel like I am the only one who sticks out as “not normal”?  And if I really do enjoy most aspects of my life, why do I daydream about changing it?  Let me re-phrase that:  why do WE daydream about changing it?  Based on many of the RP chatrooms I’ve visited, I know that this is something we all struggle with, and I don’t think daydreaming about being perfectly sighted is necessarily unhealthy.  But I do think that we should pay attention to how we view ourselves and the vocabulary that goes along with those views, especially the “n” word.