About Me

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just another 20-something stumbling through life, one mile at a time.

Saturday, November 9, 2013

the unforeseen costs

i totally got down on myself yesterday for about 20 minutes.i had a moment where i literally felt frozen, panicked and just plain awful. i was standing in front of a pile of broken glass, another victim of my disease. it was dusk and i was walking to meet with a coworker after his shift and two blocks from the store i banged into a table holding very pretty (read: pricey) lamps. it was an small local shop and i stood there, angry because i walked into yet another thing that's going to leave a mark, and feeling like i was a walking blind disaster. the owner came out and asked what happened. for a split second i wasn't sure how to answer without it sounding like a lame excuse: oh i just bumped into the table, didn't see it. i look totally normal and all but you know, i'm actually blind.

i immediately apologized and did tell him that i bumped into the table. he seemed annoyed that my first words weren't "oh let me pay for it!". which is pretty much what his next words were. i apologized again and told him that i just didn't see the table, and as i paused trying to figure out how to explain it he replied with "that table has been outside of my store for about a year now. i'm just a small business and now i can't sell this lamp."  i blinked back tears and blurted out "i'm legally blind! i don't have peripheral vision so that's why i hit the table."  that's when HE apologized and said that changes things, that i shouldn't have to pay for the lamp.

that's probably the most annoying thing about having RP, the complicated explanations. there is no quick and simple answer without feeling like you're revealing your soul to strangers. most people have preconceived ideas of what blindness (or any disability) is. it's a white cane and sunglasses. it's a person that just sees darkness. it's a guide dog. it's not a 20-something girl leaving the gym in an outfit that matches her pink running shoes. and you're probably thinking, well why not use your cane? the honest answer is that i don't feel "blind enough", which is also a ridiculous answer. there have been times that i've had my cane out and people totally steer clear of me but give me suspicious looks, and some have even asked pointed questions about it. "i saw you texting. why do you have a cane?" that was an actual question when i was on the bus. there's the assumption i'm faking it. i've actually had a guy yell at me when i was with my sister as i got into her car because we were parked in handicap. i have a handicap placard and use it whenever i'm a passenger. yes, it makes parking easier (and free! don't have to pay for meters) but it also make it easier for me. i know i have fully functioning legs and so i can walk from the far spaces, but i don't have fully functioning eyes to help navigate cars or shopping carts in the parking lot. and one i realized that i stopped feeling guilty for using my placard. and yes, having my cane with  me 24/7 will also help navigate objects, like tables full of lamps jumping out of no where, but having a cane would also slow me down. literally. i couldn't break into a run to catch the bus, or i'd feel obligated to be a walking PSA about how one can see and still be legally blind. in my past experience, a cane has been more of a burden than a help at this point. i'm sure it will change as it feels like the day when having a cane is necessary is rapidly approaching.

in the past i would often just apologize to people and walk away, trying not to care if they were angry and thought i was rude/a klutz/whatever. there was an incident where i bumped into an elderly lady in the bathroom at the airport. she was really short and i completely missed her as i stepped towards the sink i apologized and said excuse me and she reprimanded me saying i needed to watch where i was going and to be more careful. this was the point where i'd usually ignore her and just go about my day. i don't know if it was because she kept scolding me while washing her hands next to me, or perhaps i was just fed up with strangers judging me, but i cut her off and said "look, i apologized. i'm actually visually impaired and didn't see you. i wasn't being careless." it's a scary thing to admit blind spot, whatever it may be, to complete strangers. or maybe it's scary to have a label put on yourself--  by telling someone about my condition i am no longer a random stranger but now a Blind Stranger. the response is always the same: "oh i'm sorry, i didn't know." well duh! if you had known you wouldn't have been such a poopyhead about it! that's another part of the problem, a lack of general compassion for people. everyone carries a burden whether obvious or not. why not try to give people the benefit of the doubt before judging or retaliating?

hitting that table yesterday was both physically and emotionally painful. it never occurred to me that i would create a path of damages, that having RP would cost more than just degrees of vision. i lose things on a daily basis, miss things (like my phone on the table) and leave them behind. i often knock over things (glasses, bottles, and now, lamps). there are times when i vent my frustration over yet another lost item or time spent trying to find something right in front of me, and my friends will say "i lose/knock over stuff too!". i know it's meant to make me feel better and that i'm not the only one. every incident is just a reminder that that my vision is failing me. after i broke the lamp all i really wanted to was curl up in a ball and cry. and i almost did cry on the sidewalk. i almost texted my coworker to cancel. i almost gave up on my night to wallow instead. i didn't and i ended up having a great night. i bonded with a coworker who is now a genuine friend. turns out he had read my blog before and already knew about my condition, though it never came up in conversation before. i was really surprised that a) he read my blog (or that anyone does really!) and b) a small sense of relief that i didn't have to have the explanation conversation. it also isn't such a game changer anymore; when i was 17 and had to tell people i often saw a change in how they saw and treated me. i became more fragile and helpless to a lot of people. at 27 people are still surprised in their reaction, but there isn't that immediate "oh you poor thing, i need to help you!" vibe anymore. i don't know if it's because i'm older or because i carry myself better when telling people. i still only tell people on a need to know basis, or when the topic of why i don't have a license comes up.

living with RP hasn't gotten any easier in the last ten years but it it has become a new normal for me. i know that doesn't make sense and doesn't sound very positive, but it's actually very reassuring. it's often a constant struggle with the little setbacks, like losing my phone for the billionth time or accidentally breaking things and adding to my collection of bruises, but the coping part has gotten a lot easier. the pain and frustration is as acute as ever but recovering from it is a lot quicker. if i had broken an expensive  lamp years ago i would have been in a funk for days, coming to grips with yet again more vision loss and being angry with myself for not trying harder to be more careful. this time i took a day to be ok with not feeling ok and reflect, which led to this blog post. a friend tried to cheer me up and say that i'm so awesome and that shop owner was just a dick blah bah blah. i defended the guy because he didn't know, just like i didn't know if maybe he was having a really shitty day too. i also realized that i have to acknowledge my own shitty feelings and be ok with feeling down sometimes, because sometimes it IS really fucking hard to be going blind. denying that would only hurt myself. and that holds true for anything else that gets us down, whether it be losing your sight or losing a loved one or losing your job. you have to embrace those dark negative feelings before you can let them go, otherwise we would never heal.


  1. You have a good job, good friends, and a good outlook on life. Don't forget that people care about you.

    If I could, I'd send you a baby panda.

  2. You are far from fragile and people that have treated you as such do not recognize strength. I count myself lucky to have you in my life. You are the greatest example of acceptance and progress. I hope to handle my disability with your elegance.