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.

six months, six days

six months ago i was running, feeling happy and free, when one misstep changed my life. i fractured my tibia, bruised my femur and tore my meniscus. i was then sentenced to a leg brace and crutches which led me to spend three months in socal with my parents. i couldn't work and i couldn't walk, so i had to depend on others for the first time in a long time. it was a difficult and most humbling lesson.

i was born with a hearing loss and so i never knew differently. as long as i can remember i've worn hearing aids and they are just a part of me and my life, one i never really think about. it wasn't until i was a teenager that my vision loss was discovered and only after that did i notice any changes. it's been ten years since i was diagnosed and i've almost reached a point where i can't remember how much i could see before. the last time i remember seeing stars  was was the summer of 2002. i wish i had a clearer memory of that night, but it was the night of my first kiss so stars weren't front and center. i do remember seeing a shooting star, making a wish, and being really happy. you never think that any moment will be the last time. you never think about the little things you will miss later. having a broken leg reiterated all the little things i missed doing on my own: cooking, carrying anything, freedom to easily move around, taking a shower, sleeping comfortably. it was like all my basic human functions were made to be either difficult or painful. and let's not forget the obvious missing piece, running.

i remember thinking one time how it was funny, in an awful way, that i was accumulating physical handicaps. hearing, seeing, walking...what a trifecta! i've gotten down about going blind at times in the past (and i know it will affect me at times in the future) but having a broken leg hit me really hard. it was emotionally destructive and i really struggled with it. i don't know if it was the cherry on top or what, but being on crutches for 13.5 weeks was a huge challenge for me. there were times i was in a wheelchair and it opened my eyes to a whole new world. you know that saying how you can't know what someone is going through until you walk a mile in their shoes? try rolling a mile in their chair to really learn compassion. so much time was spent just getting from one place to another, even as simple as moving from one room to another. i went to disneyland and used a wheelchair for the day. yes, front of the line perks, but mostly it was eye opening using a crowded public bathroom in a chair. i was often surprised how rude and careless people were, but i was also touched by the kindness of strangers. i met a man who offered to pay for my seat upgrade on my flight from LA to DC, a woman gave me her paul mitchell hair appointment at the Nike Race Expotique, and on my flight back home a flight attendant took special care to give me ice packs and extra snacks. there were enough people to restore faith in humanity.

there were friends who were also great at being supportive and encouraging, letting me cry and vent but also never letting me pity myself. my parents were also amazing, taking me in and caring for me like i was a kid again. my dad even said me being home was like having a five year old around, always having to prepare food for me, carry things for me, do my laundry, etc. i am so thankful and blessed to have loving parents. of course we have had our differences, and i'm sure there were countless times i yelled "i hate you!" as a kid, but i've come to realize my parents are good people. like REALLY good people. they are trustworthy and reliable, responsible and caring, and most importantly, faithful. Faithful to God, family and friends. last week i witnessed the strength of my parents' character when i was at a funeral of a dear family friend. i felt so proud and lucky to be their kid.

my dad's best friend passed away recently and i flew home for the funeral. i wanted to be there for my dad, and because i had grown up with the family. they were good people, and i know they were especially good to my parents when my dad was first diagnosed. Tony and Diane were there the day my dad had surgery and found out it was cancer. Diane comforted my crying sister while Tony put his arm around my mom as she told him it was the worst day of her life. he told her it was going to be ok, we were all going to get through this. i wish i had been there, but i was kept in the dark about how serious things were at the time. my parents didn't want me to worry, so i was 400 miles away and oblivious to the gravity of the situation. Tony and Diane were there for the doctor visits and to help out after, offering prayers and support and love. years before Tony battled prostrate cancer and survived, so i think it was really comforting for my parents to have them around. They had been there done that.

about a year ago Tony, who never smoked, was diagnosed with lung cancer. it was devastating news for everyone. i remember feeling heartbroken that this man had to endure cancer, AGAIN. this time around the news was worse, as the cancer had spread to other organs and his brain. whenever i talked to my dad i would ask for updates, but oftentimes the news was not encouraging. my dad is a stoic man and does not like to burden others with his feelings. i always ask how he is doing and the response is the same: "i'm ok" these past couple of months my parents have visited Tony almost daily, helping care for him and for his family. My mom bought groceries and help cleaned the house. she comforted Diane and the kids, all adults. she babysat grandchildren. my dad watched his best friend slowly die from cancer as he went through his own cancer treatments. i can't even imagine what my parents felt and went through. i only know that they have incredible strength and faith. at the service i saw how grateful Diane and all five kids were for my parents' support and friendship. it made me see the beauty of a 30+ year friendship between families. and i appreciate my parents even more now.

in six days i am running the Nike Women's Half Marathon. last year i ran the race in honor of my dad, who is still fighting cancer. this year i will run in memory of Tony, who was one of those rare individuals to touch so many lives. my  dad was asked to say something at the service and in his speech he says how he looked up to Tony. i think my dad is the best guy ever (despite being really stubborn and making fun of my pink hair) so if he looked up to Tony then that speaks volumes. i know this race will be physically difficult with 30,000 people (30,000 tripping hazards!) i am so happy and thankful i'm able to run again. that i have recovered from a broken leg and broken spirit, that i have strong healthy lungs to carry my legs through 13.1 miles. that despite blindness, i am still running.

the year of inaugural races

i work at a running/swim specialty store and there are some awesome perks, like trying out the newest shoes and a sweet employee discount. another, albeit rare, perk is getting race entries. i was able to get an entry to Nike SF, which was my first race that i actually ran. then Nike opened up the race series to a half in DC, which i promptly signed up for last november. i was only doing it because it was the inaugural DC race and my first out of town/state race. unfortunately i got injured just weeks before it (read previous post) so i didn't get to run.

this year was also the inaugural Rock n Roll SF half marathon, which i was able to score a last minute entry to the sold out race. i was also able to get a friend to be my guide for the race, even though she had never done a half before. the RnR series people were so great about providing a second bib for a guide; my previous experience in trying to get a bib for Nike SF was a mess and also for DC. The original plan was that my friend would run the first half of it and i would pay for a cab ride back to the start/finish line. She wanted to run across golden gate bridge, which was about the 7 mile mark. in the end she was feeling great and ran the whole thing, which i was super grateful for. RnR SF was about 6,000 runners, a much less crowded race in comparison with the 22,000 Nike runners and had a much more staggered start line. those two things alone really helped improve my race experience.

i learned from Nike that i needed a guide, i learned from RnR how wonderful racing can be. i get it now! racing alone was such a stressful experience that i never got to focus on the running aspect of it. racing with a guide made a world of difference because i only needed to focus on her when in crowded situations, like right at the start and running across the bridge. plus she made sure to look out for me at times too, whenever there was a curb or getting water at the aid stations. it was also helpful having her around to keep a steady pace. i, ever the procrastinator, didn't really train for it (yeah, another race without training, bad sarah!). around mile 9/10 i hit a runner's high and couldn't help but run faster. i ended up leaving my friend behind for those last few miles (she was listening to music the whole race so it wasn't like we were chatting and i was abandoning her) and felt like i  was running for reals for the first time in a long time. the kind of running that felt effortless, where your body seamlessly flies along the road. where you feel free and invincible...passing others only fuels your speed. and then finally, i saw the finish line and instinctively started my kick. i felt the rush of my old racing days in high school come back to me and i realized i was smiling as i ran. then BOOM some girl cut me off and we both trip a little before regaining our strides. oh right, a reality check. i can run like the wind but i still can't see who's on my side. whoops, it was like i forgot about the blind girl running part.

the incident definitely threw me off a bit, and there were a couple more bumps and near collisions so the last quarter mile was slower than i'd like. but i crossed the finish line and knew i had a better time than my Nike race.  i waited around for a few minutes for my friend and we found each other in the crowds, grabbed water and food and headed towards the much needed beer garden. oh yeah, the rock n roll race series has a beer garden after the finish line. you get a medal and a beer!

we stretched out and ate bananas and as we walked to the entrance someone asked if we were going to use our beer tickets. um, yeah! we had been up since 5 am and just ran 13.1 miles. a beer at 9 am is totally justifiable, and really, almost necessary.

it was a great race, a beautiful course and perfect weather. when i checked my official finish time i ended up with 2:10, which made me want to run 2:00 in DC. i know i would have been able to do it, but life (meaning injuries) get in the way sometimes. there's always next year for Nike DC, and you better believe i'm going to get my PR on that course. i joked about having a Nike curse: i got a stress fracture and dropped out the week before Nike SF 2011 and then a tibial fracture two weeks before Nike DC 2013. but i'm a glutton for punishment because i signed up for Nike SF 2013, the 10th anniversary race. it's in october which gives me three months of rehab/training after crutches. i dream big, what can i say?

speaking of dreaming big, this november will be the inaugural berkeley half marathon and yup, i want to run that too. so far my strategy has been sign up now, find a guide later. it's only june which means i have plentyyyy of time to convince someone to run with me =)

my vision continues to get worse over time and there very well may be a point when i will have to retire my beloved running shoes (which are currently Brooks Drift, Nike 3.0 v4 and Altra Torin- and don't worry, i am well aware i have a running shoe probem. my collection is currently up to 14 pairs) and give up running. but for now i can keep my dreams alive with a little assistance. eventually i am going to run a damn full marathon, and i'd really like to stay healthy enough to get a BQ. running Boston is the crowning achievement for many runners, and the competitive side of me wants it bad. plus, i will admit, there is a part of me that wants to relish the bragging rights of saying i ran Boston, and oh yeah i'm blind too. not gonna lie, i would feel so badass if i could do that.

when recovery is anything but

it has been four long months since i've posted. i've admitted in the past that i'm not very good at this, at being consistent. oftentimes i will draft amazing and profound posts in my head when i'm running, on BART, waiting at the doctor's office...pretty much anywhere but in front of a computer. all those pearls of wisdom vanish the moment i finally sit down to write.

the last four months have been an emotional roller coaster, both inside and outside of my running life. currently i am recovering from an injury, yet another running injury. i have a fractured tibia and torn meniscus. it's been eight weeks and counting since i've been allowed to walk. the bummer part is that i potentially have another four weeks to go. on crutches. me, a well known klutz and visually impaired. yeah, it's been quite the interesting adventure.

it's also been a wake up call and a period of completely tearing down every aspect of myself. being legally blind has made me fiercely cling to every ounce of independence i can maintain; being blind AND crippled has humbled me beyond words. i have told people in the past how much they take for granted- driving is a privilege not a right! and yet as i have been spouting those cliches i had yet to learn them myself. HEALTH is not a given right, and we must earn it by taking care of ourselves. as a runner this should be obvious. you must train smart in order to continue running, right? well i'm not the best at that either. there's a certain level of recklessness that i embrace due to the fact that i know my sight isn't guaranteed tomorrow or next year. i've adopted a sort of carpe diem attitude since my diagnosis, which has served me well and not so well. i've stepped out of my comfort zone to travel alone, which is a positive thing, but i've also pushed myself too hard to be independent and have gotten physically hurt as a result (getting hit by a car while running in my neighborhood for instance). i suppose God felt it was time for me to learn another hard life lesson, which is that we cannot do it completely alone. ask my friends, my family, and my exes and they will all tell you i'm very independent and possibly that i'm also very stubborn. God must have been laughing at my naivete since here i am, in a full leg brace learning to let others do things for me. learning to ask for help. learning that i am indeed not as self sufficient as i thought.

when i first hurt my knee the initial diagnosis was a torn meniscus, which would mean complete rest for a while but then resuming normal activities after a week or so. but my doctor wanted to get an MRI to be on the safe side, and that's when i found out i had a partial meniscus tear in addition to a fractured tibia and femoral contusion. wooooo. i guess if you're gonna get hurt, do it in a big way! (um, don't. i m not recommending that to anyone.) so when my recovery time went from one week to months, my parents suggested i fly down to socal to stay with them. i did since it seemed like a better alternative to sitting alone in my apartment all day everyday. it is a better alternative, but not necessarily an easier one. i've been out of the house for nine years and this temporary move back in is an adjustment. i usually don't stay in LA for an extended amount of time because i have to rely on others for a ride. it quickly gets frustrating not being able to go wherever whenever you want. and this time around i have to rely on others to carry or get things for me, to help me get around, cook for me, do my laundry...basically take care of me.

it has been emotionally taxing, feeling so physically broken and helpless. not being able to run has been especially hard. i got injured a week after i did the rock n roll sf half marathon (which deserves its own post) and two weeks before the nike women's half marathon in dc. i was on such a high after getting a PR at rock n roll, and super excited for my first out of town race...i felt like i was finally hitting my stride as a runner. and then i had a freak accident while running that left me broken in more ways than one. while my leg has been healing over the past couple of months, i feel like my heart has only been breaking. part of my identity has been stripped away and my life has been put on hold; i left my apartment, my job, my running shoes, and the bay area behind. Things and places and people i love and miss dearly.it is true that i left to return to my hometown and family and friends here, but this is no longer my home. my life is not here anymore and i am reminded of that everyday. i know that this too shall pass, that God doesn't give you more than you can handle, that healing takes time. but for me, this particular recovery time has been a breakdown and constant struggle. i do try to make the best of it, which is why i have a temporary desk while i am here, thanks to a friend. it doesn't pay much and is really just something to do and add to my resume. i am grateful for the learning experience, which is that i need a job i care about or else it will slowly kill my spirit. life is too short to not be happy and do what you love.

so my recovery has been more of a breakdown, leaving me feeling lost and confused. it's been a time that's forced me to think and learn a few things. and, i suppose, grow a little. i have a feeling my real recovery will happen when i get to unpause my life and start moving forward again.

Believing is Seeing: let me introduce you to Laura

In the fourth grade I had a class assignment of doing a report on any historical figure. I can't remember why, but I (prophetically) chose Helen Keller. Perhaps because she's the only famous deaf woman, and since being born with a hearing loss I felt some sort of connection. Whatever the reason my 10 year old self had no idea just how much I would relate to the admirable Helen Keller years later. It's a pretty amazing story she has- living in a dark and soundless world and yet managing to be successful and inspiring. Most people, myself included, can't imagine losing a primary sense like hearing or sight. I once read a statistic that most people would prefer to lose hearing over sight, and further more, would choose cancer over blindness. That second part was mind blowing to me. Cancer! But I can also understand why: there are treatments and even cures for cancer (and constant ongoing ground breaking research for it) whereas blindness isn't always treatable, let alone curable. I guess you would have better odds with cancer.

A good friend of mine just became a published author this week. She is an artist and she has the same eye disease as me. I'm a blind runner and she's a blind artist; we make quite the pair. She wrote a short memoir about living with and accepting RP. Each person who has RP has a completely unique story because it affects us all differently. I've been living with it for almost 10 years now, but Laura found out three years ago at 22. I've been legally blind since high school and she has to guide me around when we go out. While not life threatening, this disease can be isolating and soul threatening. Because it's so rare it's very likely to never randomly meet someone on the street who also has it. I'm thankful to be alive in this digital age and be able to reach out to an online community. In fact, I met Laura through a mutual friend on facebook. Our mutual friend had sought me out in an Usher's Syndrome group, and I noticed Laura write on his wall about seeing the doctor to determine if she had RP or not. I sent her a message telling her that I know it can be a scary process going through a barrage of eye tests and facing a bleak prognosis. It was out of character for me, since I had never done that before (or since). But that message started a very special friendship that I am so grateful to have.

At the time Laura was attending art school in Laguna Beach. She eventually moved back home to the East Bay to sort through the aftermath and pursue writing. She started a blog about her diagnosis process, and it was funny and honest and refreshingly optimistic. We were only an hour BART ride from each other and we made it a point to meet in person to commiserate, laugh, cry and hope together. Though we are still at very different points in our disease, there is a lot of emotional similarities. Feeling lost in the uncertainties, adjusting to a new reality with every degree lost, dealing with those close to us who don't know how to react. Putting dreams on hold, and then encouraging one another to pick them back up again.

I'm still pursuing my goal of a marathon and Laura has picked up her paintbrush again, in addition to writing her first book. For another perspective I encourage you to check it out:

Believing is Seeing by Laura Lawson is available here

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!