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