why NWM was the worst thing i've ever done, and why i can't live without running

it's the day after my first half marathon and physically i'm ok. i admitted before i wasn't in great shape (i realized i only got two runs in the month before...oops!) but i knew the running part wasn't going to be my biggest challenge. i had huge, and some would say irrational, fears of tripping and being trampled. while that didn't happen, by fears were not unjustified.

the race was as just as miserable, even worse at times, as i thought it would be. i basically wanted to cry the whole time. it was the biggest NWM to date, with over 25,000 runners. majority are halfers, with only about 6,000 full marathoners (i think, numbers may be off but that is a ballpark figure). i almost had a panic attack getting to my start corral; there were people everywhere, runners and spectators alike, milling about and stopping to take pictures. it's pre-dawn so it's hard to see (even with street lights and some additional lighting near the start there are always dark pockets that are difficult for me to see). it's chaotic to say the least. i managed to find a volunteer to ask where i needed to be, but she wasn't quite sure. she was letting people though the gate who were a slower start time than myself. another team in training person (not in my group, from central california chapter) also had the same color band as me and we both were a bit lost. another volunteer pointed to where we needed to go, but given my limited peripheral vision, i didn't see where he was pointing amidst the chaos. luckily i was able to follow the TNT guy to our start. it helped he was taller than most women and had decorated his shirt with metallic letters. 

ok, made it to the start corral. i took a couple of breaths and looked around me. it's hard not to feel claustrophobic with a sea of people in front of you, and a sea quickly filling up behind you. i took some pictures, tweeted, texted my sleeping boyfriend, and did my best to keep calm. there are people giving pep talks and trying to get the crowd stretched and warmed up over the sound system, pumping music and whoo-ing all over, but i'm just thinking "just make it through the initial rush." i would later learn that it doesn't really thin out much. the next 13.65 (according to my runkeeper app, since i was a bit way from the official start line) would be a battle- i had to constantly scan to try not to trip or bump into anyone. it was an impossible feat, and i stopped counting how many "i'm sorry"s i doled out and flat tires given after mile 2. i wasn't prepared for that. runners weaving through were a nightmare for me because to me, they were literally coming out from no where. i was so frustrated because i couldn't run at my own pace, instead being cautious and slow and getting boxed in. i had a hard time trying to pass others and so i ended up running a much slower race than i'd liked. i never got my own stride going. 

another thing i was worried about were the water stops. fortunately, they are impossible to miss. unfortunately, i can't easily make my way to them and grabbing a cup and run away. so that was another delay for me. but i felt well hydrated and fueled for the race, which is the important part.

though i have lived in the bay area for eight years, i do not know san francisco that well. outside of downtown (and walking distances of bart stations) i am pretty much a tourist. that being said, i was sort of aware of the course but i didn't really know it. i've heard about the hills, which never scared me. i'm weird because i loooove hills. in my cross country days i won many races by killing it on the hills. one of my strategies was to pass up people on the hills, make up some ground that way. i did not take into account the groups of five or six women who would walk up the hill side by side. or the barely running people who probably could've walked faster. as i already mentioned, i couldn't really weave through the crowds. the hills weren't hard for me and i felt so restrained. talk about suckage. at some point in the race, around mile 6, i kinda had to give up being polite and cautious. i tried to pass up people, said "sorry!" as i almost always knocked into someone one one side. the one big hill of the course i heard a woman say "we're walking just as fast as people running" which i am guessing was in response to some frustrated runner trying to get around her. i really wanted to yell out "no, lady! some of us want to run faster but you and your walking buddies are blocking the who freakin' path!" this was my first race so i don't know of any race etiquette, but isn't there some unwritten code for runners and walkers on the same course? like walkers, get the fuck out of the way? or shouldn't there be? ok, in a much nicer way, shouldn't there be an understood rule that if you need to walk then move to the side so that there is a clear moving path for runners in the middle, or move to the right and people can run up the left. that sort of thing. also, don't be more than three across or something.  i totally understand if you need to walk- i did for a brief time- but try to run slowly to the side and walk. just don't stop when you're dead center of the course and people are right behind you.

at mile 7 i started to feel a blister on my right foot. my big toe, actually. i couldn't understand how or why, since i wasn't using new socks or new shoes and i've never had a blister in the spot before. i have very rarely gotten blisters in the past, so this was just the worst timing ever. by mile 8 i wanted to stop and cry in a ball on the side of the road. i felt so beaten, emotionally. blind girl running seemed like the stupidest thing ever. now a blister was making itself head with every step, and even though i tried not to, my gait was being altered and so i could feel a dull ache in my knee (which, for the record, was my "good" knee). i thought about why i was doing this, about my dad and the honorees i've met and learned about in the past 18 months, about that damn little blue box, and i realized i had to keep going. it wasn't about running a stupid 13.1 mile race, it was proving myself that no matter what, i'm still a runner. being a runner is one of my earliest identifiers and first loves, i wasn't going to let rp take it way from me just yet. and so i kept running. eventually the blister became a nonissue (thanks adrenaline!) and i let my thoughts wander for a bit. i spent most of the race trying to focus on the people around me that i couldn't enjoy it. by mile 12 i felt like i could run forever. just like forrest gump. just keep running. runner's high i guess, but a completely different one than i have ever experienced before. it was more of a surrender to the run than a triumph over pain. i felt achy all over, my lower back and shoulders especially. my feet hurt with every step. i felt tired, since i couldn't fall asleep before midnight (running on four hours of sleep probably wasn't the best idea). but in that moment running was my everything. maybe i thought i could run the pain and stress away, i could run sickness and bad things away. at that moment i felt like if i stopped running i would stop breathing. i realized that no matter if battle injury after injury, or if life sometimes gets too busy for me to run, i am a runner. i will always be a runner. running is like oxygen to me. i need it in my life. that brief moment of revelation is one of two redeeming factors of the race. 

the second? 

yeah, it's my superficial reason. but it's my first (hopefully not last) piece of tiffany and i like that i got it for myself. even though i pretty much hated every minute of this race, i want to do it again next year. because i am a crazy runner and because i want to do the full. and because i want to start my own NWM tiffany collection.

i crossed the finish line at 2:44:23, my official finish time was 2:36:50. i did better and worse than i expected: i ran more than i thought i would (i thought i would run about 8 miles, run/walk 5. i ran about 11 miles and ran/walked about 2) but my overall time and pace was slower than my normal speed. i now know that i really do need a guide to run with, and perhaps a sign on my back to let other runner's know i can't see them from the sides (so don't try to cut me off, i might trip you on accident!). also, i will actually train and try to set a PR. i'm pretty confident with a little bit of effort, and a guide, i can make it closer to 2:00:00. plus, it took me about half an hour to get through the finisher's chute. it was a mob with people looking for each other, taking pictures, trying to get all the swag...another visually impaired nightmare. i got my necklace, my shirt, and some food some how (even got a picture with an SF fireman, tuxedo suited up handing out those tiffany boxes). a little further away from the madness i met up with a friend, which i was eternally grateful for to see a familiar face. he lives close to golden gate park and i really appreciated seeing someone after that emotional and hellish morning. he also helped me find my shuttle bus, which i'm pretty sure i wouldn't have been able to do on my own.  today i feel fine, just general soreness that was to be expected. i took the day off from work and so i've been pretty lazy, eating as much as i can (i never seem to feel full!) and blogging. i'll have to wait until that ugly blister heals before i can get into the groove of running again, this time for me and not for training. i lost motivation long ago with the pressure of needing to train that i forgot i just need to run. so my new goal is run when i need to, which is whenever i feel like it. and to find a race partner for my first full, hopefully sometime in march or april. i'll be accepting applications now ;)

gratitude and nike women's 1/2 marathon eve

with all these changes going on, i've been reflecting a lot about my life, who i am, what i want. i've come to realize how much my life has been impacted by retinitis pigmentosa, and up until recently, how much i didn't acknowledge that. in my very first post i made it clear that i didn't want my disease to define me, but i couldn't deny that it has helped shape me. it's literally been life changing, and it's also changed parts of me. like my perspective on things, my awareness of others' silent burdens, and ultimately, teaching me to be much stronger.

since it's easy to focus on how much it's progressing and the negative impact on my life i decided to write why i'm grateful to be losing my vision. yeah, sounds counter intuitive. there are perks to this whole disability thing, some shallow and some deep.

1. Preferred Parking
 i can;t drive (major bummer) but i do have a handicap placard so whenever i get rides to places i can get the premium handicap parking. going to the mall- on a super sale saturday- and i got you covered. costco? yup, we can park right next to entrance baby. disneyland? oh hell yes. no more getting lost in mega parking lots trying to figure out which boonies of  spot you're in. also, no quarters? no problem! with a placard i don't have to pay for meters, or adhere to green zone time limits (no need to rush back to the car to move it after two hours my friends. sit back, relax.)

2. No License, No Excuses
as previously stated, i don't have a driver's license. so when trying to decide who is the designated driver i never have to whine my way out of it. i don't always want to drink, but it's nice to know the option is always there.

3. Change is Good
i had my life planned out by the time i was 15. i thought i had it all figured out in high school (yes, i was precocious and a perfectionist). my original plans and dreams had to be scrapped and i learned an important life lesson: making plans is great but you have to adapt to whatever life throws at you. life isn't perfect and i can't worry about being perfect. i learned to let go and more importantly, grow outside of my comfort zone.

4. Perspective is Better
i've always been a sympathetic and compassionate person; i placed being a good friend and helping others high on my priorities list. having been diagnosed with an untreatable, incurable, degenerative disease, i've been forced to step outside of my life and realize that it is short. whatever goals and dreams you have, you may think to yourself "i can always do that later, next year, whenever. i have the rest of my life!" i had to come to terms that my physical limitations didn't promise me a tomorrow in which i can travel to see the northern lights or learn to fly a plane or surf when i'm 60. perhaps it's cliche, but i found a new appreciation for what i am able to do, for now. and hey, it's not terminal. life as i knew it may have been over, but my eyes were also opened to a new one. i would have never pushed myself to take time off from school to take art classes for fun, spend a summer in ireland, spontaneously jet off to peru to volunteer with orphans. i wouldn't have taught myself to snowboard and get back up on the board even when every muscle ached and screamed. i've made more unforgettable memories in the last nine years than i would have otherwise.

5. Different can be Special
my life story is a better one because of rp. having a rare disease automatically does that. sure, it's also more depressing at times, but you know, trade offs. not to say that i've done much of merit, but potentially i can inspire others and hopefully create change for good in my own environment. rp is different for everyone and affects people in different way at different rates. i've met a handful of people, mostly through online groups and message boards, who have rp and each story is so unique. we're diagnosed at different ages and it's interesting to see the varying paths rp took each person. there are many things that make me "special" but rp is probably the biggest one.

6. Spidey Senses
ok, so i can't legitimately prove this but i'm pretty sure my sense of smell and taste are above average. supposedly if one sense goes out (for lack of a better wy of putting it, not to compare senses to light bulbs) the other sense become keener. i was born with a hearing loss so that's never been very strong, and i'm going blind, so that leaves three. it's possible i have have a strong sense of touch since i'm super sensitive and ticklish. seriously, getting patted down by TSA tickles.and it's happened on more than one occasion that i've been able to taste subtle flavors that my friends miss, or pick up scents sooner. i had one roommate who would always have me smell her milk because she could never tell if it was starting to go bad or not. and once at work i smelled (and eventually help find) a dead mouse before anyone else. i'm pretty sure i could do a smell/taste test of different whiskeys and get it right.

7. What Doesn't Kill You...
this list wouldn't complete without a cliche. life is hard as a rule; we all have our own burdens to bear. whatever those obstacles may be, they make each of us stronger. i've learned i have to fight a little harder, push a little further. try just one. more. time. i'm more of the shy quiet time but leaving everything i knew in socal forced me to be my own advocate.

in about 12 hours i'll be at the start line for my first official race. i'm more nervous than anything, because i'll be braving crowds pre-dawn to find my start time and make my way through the course. to be honest, i'm not in top physical shape for this race due to injuries but i'm ok with mostly running a half. i know that i can run 13.1 since i have dome more than that in the past. i'm not worried about time since no matter what it is it will be my PR. tomorrow is more about redemption: i had to drop out last minute for Nike last year and it was heartbreaking. it's bout facing huge fears being within crowds and dim light. it's about making it to the finish line and getting that little blue box. so here i am, a year later, ready to do the damn thing and get my tiffany necklace. because we all know this race is about the bling ;)

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 ;)