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

Friday, October 5, 2012

new scars, harsh realities, and another dose of hope

i'm going home downhearted and hopingi'm close to some new beginningi know there's a reason for everything that comes and goesbut so many people are looking to meto be strong and to fight but i'm just survivingi may be weak but i'm never defeatedand i'll keep believing in clouds with that sweet silver liningmost days i try my best to put on a brave facebut inside my bones are cold and my heart breaksbut all the while something's keeping me safe and alivebut so many people are looking to meto be strong and to fight but i'm just survivingi may be weak but i'm never defeatedand i'll keep believing in the clouds with that sweet silver liningand i won't give up like this, i will be given strength

it's amazing how much music can impact our lives. after having a completely shitty week, i find myself home alone on a friday night sipping a "fuck it all" beer. i've taken quite the beating, both physically and emotionally, and so here i am licking my wounds in solitude and feeling particularly crestfallen when i randomly decided to listen to some music. low and behold, kate voegele's "sweet silver lining" plays on shuffle and i actually stop to listen to the lyrics for once. it makes me stop and think all i've had to deal with and overcome and what i have yet to face. and a single song can help hope grow again.

**full disclosure: i started this post a few weeks ago and much has happened since. it's another late night and i once again find music to be cathartic.**
it's been a roller coaster lately and i finally feel like the ride is slowing down to a stop. the biggest "down" of the proverbial ride is my vision; or rather, my ever deteriorating vision. about a month ago, right before i started this post, i had a particularly harsh reality check: i was out running errands (quite literally, running to bus stops and whatnot) when i was walking from a BART station to a nearby shopping center. i was rushing to make a a light and started cutting a corner short.  i was looking down to be careful not to trip on the curb or hit the fire hydrant when i ran full force into a no parking sign. i just clipped the pole but thanks to that whole law of physics (momentum is a bitch!), the impact caused my sunglasses to pinch my eyebrow. after the initial few seconds of shock, followed by pain and anger and humiliation, i realized that my sunglasses were sitting funny on my face. as i tried to readjust it later became apparent my eyebrow was caught between the frame and lens of my sunglasses. fuck, not good. after separating the sunglasses from my face i started to feel a warm trickle. i took a deep breath and quickly remembered where the nearest bathroom was. i strolled, as nonchalantly as possible with one hand trying to stop the bleeding, into rubio's and grabbed some napkins. i was trying to keep my cool, since i hadn't eaten much that day and was feeling a little lightheaded. walked to the bathroom and it was locked. ugh, had to interact with someone looking like a battered victim to get the key. as i was waiting at the counter to have someone get the key a woman approached me asked, "are you ok sweetie?" i was both annoyed and touched. i tried to smile and be polite answering with a short "yes thanks, just getting a key to the bathroom." inside i just wanted to curl up into a ball and cry. i make it into the restroom and cleaned myself up. i looked in the mirror my now swelling eye still bleeding and tears just started spilling over. i remember thinking "don't cry! still got shit to do today and you can't look like a mess in public." which now, when i think about it, shouldn't matter how i look to others. strangers weren't going to ask what happened. my injury was my own personal scarlet letter. i know that having a medical condition isn't my fault or a punishment, but sometime it feels like something to be ashamed of. like some sort of weakness that i can't control. and whenever i have an incident- whether it's bumping into furniture or street signs or people, it always leaves some sort of mark. there's the usual scolding: i should have been paying more attention, i need to be extra careful, etc.i always have this internal struggle of blaming myself and realizing how much i have compensated for my limitations. it's not completely unnoticeable; mostly i just come across as a clumsy space cadet. 
after i gathered myself as best i could and the bleeding (mostly) stopped, pain started to hit me full force. i grabbed more napkins and some ice on my way out ignoring stares from diners. i made it about 20 feet out the door until i sat down on an outside chair and a fresh wave of tears appeared. it was late afternoon and there were quite a few people out and about passing me by. lots of looks but no one else asked if was ok. i called the one friend i thought would be free to possibly keep me company and when he answered i started crying instead of talking. i had to text him to get words out, and it turned out he was stuck in the city though very sympathetic to my feelings. i still felt pretty alone and my head was now throbbing, i managed to find a soup and sandwich combo and cupcake at a cafe. a hot meal really can make up for a lot, and i continued on with my errands. by the time i got home a few hours later i noticed i was starting to bruise. my oversized jackie-o style sunglasses were leaving me with quite the black eye.

make up is amazing and i managed to cover up the black eye part. the swelling made me look tired puffy mostly, and no one noticed/all were too polite to ask. i'm grateful either way because i didn't want to answer any questions. i tried to think of reasonable and plausible cover stories but nothing sounded good in my head. you might be asking why i couldn't be honest and just tell the truth. well, the truth is that i'm not very forthcoming about my condition in my every day life. not everyone i work with is aware, i'm not even sure if all my bosses know. at this point most of my friends are at least aware i have a vision impairment but i don't think a lot know to what extent. i find it hard to talk about it in real life for fear of coming off as a weak victim or worse, as if i'm seeking pity and attention. so i think i often brush it off and try to make it as small of a deal as i can. but the street sign accident was an in-my-face reality check (ha, pun not intended) that hey, this is actually a big fucking deal. just as i got used to a new normal another wave of vision loss happens. it's frustrating and painful and sometimes incredibly disheartening. i was diagnosed 9 years ago so i've had a lot of time to process and accept my prognosis. i came to terms long ago that blindness was a very likely possibility and in all honesty, the probability. and i have, from time to time, imagined what that would be like. using a cane everyday. having very specific spots to easily find keys/purse/phone/etc. having more routine and organization. but no matter how many times you run a scenario in your head, when it happens in reality you can still feel blindsided (look how pun-ny i am tonight). it's one of the hardest lessons i've hard in this journey- learning the harsh differences between accepting my future reality and then living that "future" reality now.
so yeah, even after 9 years i still have bad days where i feel completely defeated and broken.  i don't think it ever really gets "easier" but it starts to feel like a new "normal". if i stop to think about it for too long then it does feel really hard and overwhelming. but then i'm still living and each day can be full of opportunities or good news about research. and though i've been going through a rough patch, there have been rays of hope with news that california is the next state in line to approve computer driven cars within the decade, that uc davis recently helped restore vision in patients with macular degeneration (not what i have but another retinal disease), that they are making more progress on artificial retinas in humans, that there's a contact in the works to cure nearsightedness. none of those things will directly or immediately benefit me, but it's all progress. and progress means there's still hope for a brighter, clearer future. a sweet silver lining, if you will ;)


  1. There's a saying that God only gives you what you can handle. To me, you seem to be a very strong-willed individual and I'm sure you'll find a way to pick yourself up any time you fall (no pun intended either). I'm proud to call you a friend because of how strong and positive you can be. Keep your head up and know I'm always rooting for you Sarah!

    - paul

  2. thank you paul, that means so much coming from you. so glad we can say we've been friends for a decade now! xoxo

  3. Hi there, I came upon your blog a few weeks ago and your posts are so inspiring! I was feeling down the day I found this- some of your posts made me laugh, but mostly they really cheered me up :)
    Anyway I wasn't sure if you had seen this- it's from a few months back, but they're doing trials in the UK for eye implants on two people with RP. Here's the link:


    There's always hope! I hope you never lose your sight but more importantly I hope you never lose your great spirit!
    Keep posting! :)

    1. i can't express how much your comment means to me...it's easy to believe that no one actually reads what i post or that it even matters. i really appreciate your support, and for letting me know about the trials. thank you so much!