let's get personal: life goes on so i'm running with it

i've been really bad about keeping this updated. i keep meaning to post, and i halfway start writing and then find myself distracted with other things. but two people said things to me that made me think and i feel the need to write as a result.

i stopped posting mainly because i stopped running for the better part of the last couple months. i ran a half in october, but i didn't train for it and sort of slacked off after too. i've come to realize that this blog isn't just about my running life, though i did set out for it to be that way; it crosses over into the personal stuff too. so here i am, getting personal.

i have mentioned in previous posts that i was in a relationship, without getting into gritty details, i had to end that a few days ago. when i realized the foundations upon which it was built were broken. it was a serious relationship; we didn't talk about *if* we would get married but *when*. as someone who never had marriage in my life plans, it was a big deal for me to think in those terms. a friend asked me how i was doing today, and i said i was honestly ok. the first couple of days were hard- a period of shock and pain and anger and confusion and then the numbness when you reach your emotional limit. my friend replied, surprised, "wow, you're tough. you're handling it so well." i didn't know how to answer that, so i just said "i can't change what's out of my control. i just have to move forward." in my head i was thinking, well i've had  a lot of other shit to deal with in my life. trauma is no stranger, in it's many forms of betrayal and disappointments. my own body is betraying me everyday. people that were closest to me and most trusted have taught me how deep pain can cut through you. accidents and cancer happens. and i realized i am tough, i have made it this far through each life bomb and i'm still standing. each time it feels like your world is collapsing, closing in on you and ending at your feet. but i've learned that it's just the world as i know it, that pain is from the breaking of the shell that encloses understanding (wish i could take credit for that line, but i read it somewhere and never forgot it).

then a little later i saw an email notification that someone left a comment on my blog (wait, people actually read what i write?? one: super awesome, two: how sweet!) and it really made my day. it was very encouraging and i cannot express how much it meant to me. this person said i helped cheer her up and give inspiration, which is more than i hoped to do with this blog. she also sent a link about a trial for artificial implants in patients with RP. a complete stranger took a few minutes of her day and made mine so much better. it's the little things in life.

i do have running related news to share as well. i am signed up for the Nike Women's Half Marathon in DC next april. i'm trying to figure out the details of how to get a guide, and to find one. i would love to run the Rock N Roll Marathon New Orleans february 24, and they have even said i can get a coach bib if i find a guide. which is the big issue...finding someone willing to stick with me for 26.2 miles and not get a finishing medal or official finishing time of their own. ah well, i've had bigger challenges than that before ;) so if there's anyone out there reading this that would be interested, or knows a runner willing to be a guide, please let me know!

one last thing i'm appreciating throughout the shit storms is that people can be wonderfully surprising. i've been touched by kind words and hugs from unexpected places. it's easy to focus on all the awful painful parts of life, reflect on that growing list of tragedies and overlook the good that people show you in those times. despite the harm that people can and may cause, there are much more sources of warmth and comfort to restore your faith in this world. no matter what happens, life goes on and so will you and i. after all even winnie the pooh got it: "you are braver than you believe, stronger than you seem, and smarter than you think."

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 ;)

confessions and convictions

i am a stubborn person. sometimes people say determined or even tenacious, but mostly it's plain ol' stubborn. i don't really like being told what to do, or what i can't do, and i often dig my heels in to prove a point. the adage that our strengths can also be our downfall is certainly true and i'm at that crossroads right now. life, and training, doesn't always go as planned.

i'm in talks with a team in training, mentor for chicago, and team manager about whether or not (or how) to proceed from here. because of my mandated rest period and subsequent scaling back of mileage, i'm about a month behind a standard training schedule. now, i like to think i've always been a natural distance runner and so that i of course am special enough to run anything whenever i want to. unfortunately my body doesn't always get the memo and falls apart on me. quite literally, my joints are so flexible that they slip out sometimes. so i'm torn: my stubborn i-can-do-whatever-i-want-no-matter-who-tells-me-i-can't self is all "psh i got this. i'll push through it and do the damn thing!" and my rational let's-talk-through-this self counters with "i want to stay healthy to run more marathons in the future, i should be smart about this" followed by my impatient i've-been-trying-to-run-a-marathon-for-a-year-now self is thinking "let's go run!" yes, i realize it sounds like i'm crazy and have multiple personalities, but people who want to run marathons are a special kind of crazy.

so here's the deal my friends, i am trying to talk/think/pray about this to make the best decision. i want to run chicago, with all my heart, not just for my own personal goal but for team in training and for the donors supporting me and the amazing people fighting cancer. no matter what i know i will run a marathon. it might not be chicago and it might not even be this year, but i am going to keep going until i get it right. adjusting your training schedule is something ever runner faces at one point or another and so we must adapt. life happens and even though i feel feel like i'm running against the clock as my vision continues to get worse, i'll just find another way to do it.


someday i'll be a marathoner =)


please keep your fingers crossed for me!

fighting the hamster wheel

it's been a long time since i've posted...much longer than i intended. to be completely honest, i have never been great and regularly updating. whether it was a diary when i was younger or email correspondences now, i just have a hard time forcing myself to sit down and write. these days i find myself which events or feelings i should share, since being a runner and training had so many topics in and of itself, and having RP has just as many potential posts. as i'm going through my daily life there are countless "rp moments" that i think about sharing on here, because one of my goals is to try to explain what this relatively rare and unknown disease is like. but then i remind myself i'm not trying to be the rp poster girl either, that i'm a runner, and need to talk about rp in relation to running. so yeah, there's that silly little battle going on in my head most days.

the main reason for my hiatus is that my training has taken a bit of a hit, since i'm having some shin splints and knee problems. i got check out a couple weeks ago and have been resting and scaling back, and then i've been sick so that derailed training even further. it's been a whirlwind of emotions in the past few weeks: disappointment, frustration, anger, sadness, hopefulness, determined. chicago is still on my horizon but, and i really hate to admit this, there's also a fear i won't recover in time and a sense of deja vu. i'm trying not to stress about it and be proactive, but damnit that fear and doubt keep nagging at my mind. then i got sick (still feeling sick) which i attribute to a stress induced weaken immune system. i just moved, and am still in the process of transitioning between places, and it's physically taking a toll on me. it's been a rough month so far.

on top of all that i've had too many reminders of my legally blindness. for the most part, i almost forget about it on a daily basis. it's my "new normal" and even when i try to remember what my vision was like pre-diagnosis, it's not very clear. i have flashing lights in my periphery 24/7 and i usually don't notice anymore. sometimes there will be more flashing lights, especially when transitioning from different levels of lighted ares (bright sunlight to inside light, or inside light to outside night). i can't remember what it was like not having any lights in my vision, which started when i was 16. a whole decade ago. i have memories from before then of course, but i can't remember seeing more and without lights.

when i was in la i went for a run with my younger cousin. he ran cross country in high school and for a year at community college, and is really the only other runner in my family. we had talked about going for a run together for years now but our schedules never seemed to align, but for my last trip we were determined to make it happen. he got off work late so our run was pushed back to 7:30ish, and the marine lyr was already rolling in by the coast. i used to run at dusk a lot, especially during cross country season when it was getting dark by the end of practices. it's been something i've avoided in recent years, even though i always preferred running later in the day over early morning. we made it a quick run since it was getting late and the route we were taking wasn't the best well lit street, but it was a warm night with a touch of humidity and running along the bluffs was calming. even though i couldn't see the ocean, i could smell the salt air and feel the breeze and that was enough to make me happy. unfortunately i had to focus on where i was running more so than usual. my cousin and i ran and an easy conversational pace, but i had trouble seeing in the dark. a part of me was ready to just stop and sit and cry on the curb that i was fairly certain a foot away from me but couldn't really tell. i'm not sure if my cousin is aware of my condition since it's not something i really talk about and it's not something my family ever brings up. i couldn't remember if i ever told him or if he just assumed i never got my license (his girlfriend never got her license so it's not *too* uncommon). either way, it wasn't something i wanted to bring up or explain at the time since my runner's ego was already feeling bruised. it was just a couple miles, poorly paced since i went slow to be careful, and i felt disappointed for a) realizing i will never be able to do a dusk/night run without a guide and b) i wanted to 5-6 miles and didn't even come close. i have to remind myself that getting out there matters and i can't beat myself up for falling short, especially when it is because of my physical limitations.

i've gotten in touch with my guide for chicago, bobby. he's a chicago based coach for team in training and this is the first time he'll be a guide and it's my first time having one. i've tried to explain my condition and how it affects me, but it's not something i can do in one conversation with one or two examples. it's best done spending a day with me and witnessing the things i miss and bump into, seeing my hesitations when walking through lighting changes as i try to slowly adjust, counting the apologies i say to people i bump into or hands extended for a handshake i ignore. bobby and i will do a short practice run the day before the race to get a feel of what it's like, and i am going to try a tether method for the marathon. the tether will be a piece of rope looped at both ends and we each slide a hand into, so while we are running i'll be able to feel him tug at the rope to warn me of curbs, cones, people, etc (along with a verbal warning) and not have to waste as much energy scanning the crowds. that way i will (hopefully) be able to focus on my race- pace and breathing and mental perseverance. since i don't normally use my cane, it will be one of the first times i voluntarily flag myself as a blind/visually impaired person in such a public setting. as the day gets closer i'm sure there will be some emotional preparation needed, but for now i am concentrating on getting myself physically healthy and ready.

i keep reminding myself i need to adapt, which is true of all runners. injuries and obstacles will always arise during training schedules and we need to adjust ourselves accordingly. so i'm picking myself up from my training slump, starting fresh with a new apartment, gearing up for a new school year, and embracing the change. moving forward is all about change, right? i mean, i heard that's what life is. time to get off this hamster wheel of a rut and run again =)

true grit and inspiration

i am a daddy's girl, no doubt. my dad is one of the most amazing people i know, which of course, is something a lot of people say about their fathers. my dad is a lot of things: stubborn, quiet, handy around the house, forgetful, prayerful, strict. one thing everyone can agree on is that my dad is an honorable man. and in our society today, that is a rare quality.

my dad is a proud christian and his strong faith is very important to him. religion played a huge role in my household and i went to catholic school for 13 years. while i'm not a practicing catholic anymore, my parents did instill a sense of faith and spirituality in me that continues on in my adulthood. my parents still attend service every week and Bible study once a week. my dad is involved with two Bible study groups, and has daily devotions. others may not see eye to eye with him on religion, but they do respect him and his dedication.

like his faith, whenever my dad believes in something he wholeheartedly follows his convictions. he switched to a healthier lifestyle when i was young and was the first vegan i have known. we're talking about mid-90s in wilmington, ca. vegetarianism wasn't even that widely known, and there certainly were no options other than salad at restaurants. it wasn't a trend yet (not that my dad would ever follow a trend, let alone know of any current ones) but he wanted to "eat less crapola" and cut out all alcohol. he also started to learn more about eastern medicine, taking vitamins and herbs over prescriptions and OTC drugs. he even took up yoga for a while. basically the point is that he was trying his best to be healthy, mind body and soul. not to say he was the perfect role model, but he was on the higher than average track.

which is why last august was a complete shock to everyone: he was diagnosed with cancer.  it came from no where. one day my mom called to talk, and then mentioned my dad was having a little procedure the next morning but it' no big deal. she made it sound like he was just having a check up sort of thing. so the next day i didn't really think much of it until i got home and my roommate asked if i had talked to my mom yet. this immediately set off alarm bells. turns out she had jenny's email address and contacted her to check and see if i was home alone or not before she called me. instant panic. all of a sudden it clicked- my dad's appointment WAS a big deal and it did not go well. i called my mom to find out what happened, and heard the scariest words of my life, "the tests came back positive for cancer." my dad, my own superhero, was sick. with cancer. that ugly c-word no one wants to hear or talk about. the word we all wish could eliminate forever. i felt blindsided. this couldn't be happening!

it's 11 months later and my family has been very fortunate and blessed that my dad currently doesn't have any known cancer cells. due to the nature of his tumor, he has to undergo treatment for three years. in the beginning it was 6 weeks of weekly in office treatment, 6 weeks off. now it's every three months and of course routine check ups. he's been "cancer free" since december but there was a false alarm in april, so we can't take it for granted that he's cured. it's scary to think that any day it can come back and turn our worlds upside down again. it's a thought that, through rarely happens, does cross my mind and makes me to stop to reevaluate life. am i on the right path? am i making smart decisions? is my dad proud of me?

recently i won a spirit award for team in training. the community captain picks a team member who embodies the spirit of the organization: being part of a team, supporting, enduring, inspiring etc. she picked me because i trained last year and had to drop out of my event last minute, but still went to the race to cheer on my teammates. i was up at 5 am with them before they lined up the starting line, and encouraged them throughout the course (another captain had a car so we drove around sf). i'll admit it was hard not to be jealous of my healthy teammates who were running, but these people  had trained (and suffered!) with me too. i had to be there for them. and then i came back this year, because i need to finish what i started.  i was surprised to get the award (epsom salt and champagne, glass included) and humbled. i first joined TNT for selfish reasons: guaranteed entry to Nike. i gained a fantastic support group and great friends in the process, and now they were rewarding me with even more? gosh!

i told my dad about it as part of my training update. his response (via test) "that's my girl!" and told me i truly have grit and spirit. i jokingly replied that maybe i'm just a certain kind of crazy, and then my dad said "crazy people do the impossible." it was one of the most supportive, highly praising things he has ever said to me.  he said i have grit...the guy who has never once complained about cancer and who continued working as if nothing happened, despite working nights as a crane driver. he doesn't act like a cancer patient and most people don't even realize he's still undergoing treatment. after he sent that text i sat still for a moment thinking about how lucky i am to have my father, and how powerful his words to me were (and still are). crazy people do do the impossible, or what is generally considered impossible. like running a full marathon legally blind. it is a crazy idea, but who said dreams have to be practical?

friday the 13th

why did friday the 13th get such a bad rap? yeah, i know the whole jason horror movie thing. but really, why does 13 have to be so bad and friday the 13th cursed? i'm not superstitious at all and i believe any day can be awful or amazing. case in point: february 24th 2003 changed my life forever. it was the day i first ever heard about retinitis pigmentosa and learned i was going blind. it was a monday and probably one of the worst days of my life. january 13th 2012 is another life changing day; i ran into some friends at a bar and met my boyfriend on, wait for it, FRIDAY THE 13th! he's been one of the best things to happen to me (i know, mush alert) and has been a really wonderful source of support. and now today i got some really fantastic news: TNT has found a pacer/guide for me! i already woke up pretty happy to have made it six month in a great relationship, but now i can stop worrying about how i'll manage the chicago marathon. 

as i mentioned in my previous post, i was having some major anxiety over the marathon. not the miles or course itself, but the race was completely daunting. but because TNT cares about all its participants and their needs (seriously, they really do care) i now have a TNT coach based in chicago who will run the WHOLE marathon with me. i will have someone to follow through the crowds (the coaches always wear really bright shirts for races, so very easy to spot) and to alert me about any bumps, trash, missing shoes etc on the road, as well as make sure i see upcoming aid stations to stay hydrated and fueled.

i've had a pretty good week of training, logged in almost 20 miles so far and feeling strong. i also feel much closer to achieving my goal of completing a marathon, which is a reat feeling. not stressing about how to deal with other runners is a huge relief and a total game changer.

so screw horseshoes and rabbit's foot keychains and shamrocks. i feel like the luckiest girl in the world right now.

officially registered. officially panicked.

last week i submitted my race registration forms for the Chicago Marathon.  woohoo! totally exciting right? heck yeah! it will be my first race ever (unless you count high school cross country and track, which i do not). it's my second time training, since i wanted to run the Nike Women's Marathon last year. trained for four months and five days before the race my doctor said "no way you're running the race, or for the next couple months." yeah, it was awful finding out i had a stress fracture and tendinitis.  but that's a whole 'nother post.

so here i am, marathon attempt #2. i ended up taking FIVE months off from running (yeah, it was brutal not running!) to get healed and healthy. getting back i the groove has been slow, for a number of reasons. 1) i got used to be lazy. like realllly used to it. and sleeping in. 2) i switched to minimal running shoes and had to retrain myself how to run. more about that later. 3) life happens and gets in the way sometimes. darn being an adult and having responsibilities! also, i'm trying to be extra careful this time around. my injury prone body hasn't caught up tot he fact that yes, i WILL be completing a marathon this year. so i'm tricking it by pumping up knee strengthening exercises, cross training more, and loading up on healthy vitamins and recovery nutrition. 

i am having delayed onset panic.NWM had over 22,000 participants last year. even though i had to drop out, i still went to the race to cheer on friends. and to get a glimpse of what to expect next time. holy crap! 22,000+ people in union square, sf is A LOT of people. plus lining up for the corrals starts before dawn. before dawn. before dawn is a time i am well acquainted with (thanks to morning boot camps and training runs) but it is a time when i am never fully awake and i don't see very well. part of my condition is that i have very poor night vision. it's difficult to see in dimly lit places (ie movie theaters, "romantically lit" restaurants, etc). another part of my condition is that i don't have a lot of peripheral vision. so to sum up: darkness+crowds+early morning= scary environment for a blind non-morning person runner. i had forgotten about those things when i decided to do Chicago. then came paperwork time and a box for visually impaired/blind participants. hm, should i check it? i mean, it's not like i need to tether to someone to run, or have a service dog, or walk with a cane. i don't look like a blind/vi person. which is probably the biggest battle of having RP. appearances are deceiving. i bump into someone and apologize, but still get an angry "watch where you're going!" um, i was watching...as much as i can see to watch! so then i reminded myself that it can't hurt to check it, that i probably need a special bib to put on my back that says "hey watch out, blind person running so stay out of my way!" or whatever. 

then all of a sudden memories of NWM came back to me. throngs of people everywhere. cones and roadblocks (which are realllly easy to walk into/trip over. benches, low garden fences, curbs, potted plants...all foes of someone with limited vision). ok yeah, maybe i should ask if i can have a pacer to navigate the early miles crowd.  now i need to back track for a sec: i'm running chicago through Team In Training. it's an awesome group that i'll write more about some other time. TNT handles the race entry, hotel, transportation, etc and training schedule while i fundraise for the Leukemia and Lymphoma Society. hence my TNT badge to the right of my page. ok, so i'm emailing bonni from TNT about chicago last minute because i just switched events. i originally signed up for the kauau half, but the lure of a chicago, a full marathon, was too hard to resist. i had two days before the absolute deadline. one of those days was fourth of july, when everyone is out of the office and closed. so thursday, july 5th, is a mad scramble to get everything printed and faxed to bonni. oh and to casually mention i'm visually impaired, so how scary is the beginning of the race? naive and new marathoner that i am, a little googling revealed there are 45,000+ participants. say what? and bonni tells me that there isn't much dispersing of runners as the course goes on. cue onset of panic. visions of tripping over runners or road blocks or water stations and then getting trampled by an endless crowd flashed through my head. when you have very limited vision, being in crowds can make you feel claustrophobic. i imagine that feeling magnifies hundred-fold with a running crowd. ok, yes, definitely need someone to run with me, to help navigate runners, alert me of upcoming aid stations, and generally make sure i don't trip to my trampling death.

bonni, who was so nice and understanding, said that a coach can run with me for the first couple miles and she would try to find a volunteer. she also offered to pay for a second entry so that i could bring someone with me. which would have been awesome if i had any marathon friends who could agree last minute to fly out to chicago with me. i tried desperately asking around but it was a big commitment for any one person on such short notice. so, as of now, i'm still waiting to hear if some poor soul at the chicago TNT group will run/guide me through my first marathon. as if training and running a marathon wasn't hard enough! in the meantime i am trying to let that fear go and just hope and pray it'll work out in the end. because that's really all i can do for now, right? that and run my ass off.

taking the first step

i'm a runner. it's really the one sport i was ever really good at, and i was lucky enough to stumble upon it when i was 12. despite the long list of injuries i've accumulated over the years, i'm still running. sometimes there's an ongoing disagreement between my head and my body; i'm determined to keep running and my body is determined to make it known it doesn't always appreciate 1) waking up before dawn for runs and 2) running miles and miles at a time 3) eating gels.


my body feels like it's being punished since i've started training for a marathon. "what do you mean i have to get up (and moving) at 4:30?" "this GU isn't real peanut butter! Muscle Milk isn't real milk!" "this foam roller feels HARD and uncomfortable!" are a few top complaints.and yes, when you stop to think about it, running a marathon is a certain kind of crazy. subjecting yourself to 26.2 miles for no real reason other than some deluded sense of accomplishment isn't exactly rational. it's part impressive, part insane. 


but here's the thing, throughout the pain and fatigue and sacrificing nights out with friends and eating/drinking whatever the hell i want, running is what keeps me sane. when non runners ask me why or how i do it, there's no good explanation for them. "it makes me feel alive, complete, happy" doesn't translate well to someone who hates running just one mile. 


there are a million blogs out there about running by runners, newbies straight off the couch to seasoned vets. at first glance i'm just another 20-something girl running around the bay area, which is teeming with runners to begin with. but here's what makes me interesting (hopefully): i'm legally blind. this blog is about my journey of training and completing my first marathon, and the obstacles i face as i struggle with slowly losing my vision. i have a rare genetic disorder called retinitis pigmentosa (RP) that is destroying my retinas. i've been legally blind since high school, which is when i was diagnosed with RP. yeah, as if running a marathon wasn't hard enough, i'm going to do it with very limited vision. i'm incredibly excited, terrified, and determined. 


ever since i was diagnosed in 2003 i kept my condition mostly to myself. i told people on a need to know basis, refusing to let it be a defining part of my identity. i don't know if it's maturity, acceptance, or something else, but i am becoming more open about it (dur, i'm posting about it on the internet!). having RP doesn't have to define me, but i can't deny that it shapes me.