a day in the life

 


it’s been a while since I last blogged, but school is hard.

I hope it was worth the wait, as I’m really excited to share something I’m officially participating in!

first, as background, there’s a truly beautiful human named Rick Guidotti. Once upon a time, he was a fashion photographer, shooting some of the most beautiful people in the world for magazines like Elle. However, he was not so blind as to think that the only beautiful people in this world were the ones everyone told him were beautiful. One life-altering day, he saw a beautiful teenager with albinism at a bus stop with her pure, stark, white hair and was captivated. Through a series of events, detailed in this kick(butt) Ted talk, he made it his goal to redefine beauty, making the faces of people with genetic conditions come to life though his stellar personality and his nonprofit, Positive Exposure

a few years ago, Positive Exposure launched the PEARLS Project, an educational initiative to bring to individuals and organizations where persons with genetic disorders and disabilities have a blog on their site. The intention is to show how “day-to-day life” for a person with a condition is not much different than without

I know Rick from going to conferences (#conferencejunkie) for the National Organization for Albinism and Hypopigmentation (NOAH) since 2010. Last year, he invited me to become a PEARLS Ambassador for my condition (peep my about me page), and between classes, I’ve created my first post!

while I may not be able to make another video like this for a while, I really wanted to do this for my first post. Half of the video is me explaining my condition, very (very) candidly. I share details people may consider to be too personal, but I see it as an opportunity for education (read: I have no chill). I didn’t go too in depth, but if medical talk of any sort bothers you, this first part may not be for you

the second half may be more interesting, as I recorded bits of my day to show “a day in the life” of a (legally) blind college student (with some health issues) studying engineering. This Thursday, March 2nd includes events like taking paratransit to class, walking to Starbucks, going to the doctor, and eating dinner with a friend

check out the video!

why am I doing this? Why share my personal life on the internet? On the surface, I want to normalize disability, showing that we aren’t much different than those without disabilities. I’d also love to gather more awareness for my condition. However. as I mention in the video, I have a strong faith that believes a lot of why I’m still living on this earth is to keep sharing my story. I want others with disabilities to know they’re not alone, and to point to my faith in God, because He’s honestly the reason I keep going

I’d love to hear feedback, so feel free to comment here and/or on this Facebook post. Also, if it’s a more personal question, send me a private message, and while I’m notorious for not answering messages quickly, I’ll try my best to get back to you. With summer coming and since I have to post to PEARLS a few times a month, my posts may get more frequent (woo!)

but for now, have a sunshiny day ☀️

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the phoenix

(adapted from a Facebook post from December 7, 2015)

“you should write a book! You have so much to tell and encourage the world.”

these words came from a receptionist from Dayton Children’s Medical Center. I was visiting the hospital for the first time since I was sick in the outpatient Hematology/Oncology unit. She was the sweetest soul and made me feel like an exceptional human.

her words are partially the reason I started this blog. While I’m not sure how I could write a book yet, I felt this would be an excellent place to start sharing my side of the mountain with whoever would listen.

leading up to June 3rd, 2015, when I had my ostomy surgery, I had no idea how my life would pan out. I had already missed so much of the end of my senior year, including trips, 2/3 nights of the spring musical, countless school days, concerts, connections. I barely remember graduation among the fog of 13 medications and narcotics because I mostly remember wondering why I was there and wanting pizza.

these were only a few consequences from my out of control IBD. I was encouraged to consider surgery in mid-May, but I first wanted to exhaust all my options, not pursuing surgery until it was necessary. Early morning of May 31st, I had my worst hemorrhage to date at Dayton Children’s, the sixth time I had hemmorhaged in a five month period. It was then, while looking at my mother, that I found the courage to say that this was the final straw. On May 31st, 2:19pm, before getting transported to the Ohio State James Cancer Center for hematology, I wrote this letter to my colon. To me, it signified acceptance, reviving my sense of humor that felt long gone, but also accepting that though my life was changing, I was alive.

A letter to my colon:

Dear colon,

You served me well most of my young life. We had some great times full of laughs and moments I’ll cherish forever. But lately, I’ve been sensing a tension between us. I tried to understand your needs, but it’s just gotten so hard lately that I think it’s time we parted ways. After careful analysis, I realized, it’s not me, it’s you. I hope you can find something better at the NIH, and wish you all the best, but seriously, screw you.

Love,

Cassandra

immediately following surgery, I looked down and saw my fresh new bag on my abdomen. I’ve heard many other ostomates describe that moment with grief, but I almost cried tears of joy. This appliance saved my life, and I would never, ever have to go through what occurred in the previous six months. It was a bag of hope, and it was beautiful.

My colon was named Siegfried, the sick sigmoid colon, and after bidding him adieu, I named my stoma (partial intestine) Celeste because she came from heaven to save me. Celeste has been a gift, just like all the people and prayers supporting me at that time. Sometimes things still happen, but it’s much easier dealing with Celeste than Siegfried!

around this time last year, I was preparing myself for follow up surgery to complete my ostomy. Once that was over, my new lifestyle was made permanent. Every day, my bag is a reminder of how God allowed me to transcend death more than six times, so I know His purpose for me has not yet been fulfilled

people often feel sad for me, that having multiple disabilities should be a cause of great concern and pity. Yet God has given me a lovely life where I can go to school for a degree, be in a sorority, have friends from all over, and honor Him.

I’m so grateful to all the friends I’ve met because of it through advocacy groups like Girls With Guts. We often get accused of being too badass for other people, but it’s just another one of the titles I can bear. Life is lovely, messy, and mostly short, but like the phoenix, God had raised me up again and again

we’re all just doing the best we can

have a sunshiny day ☀️

racism is not about race

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a picture of my family last Thanksgiving. we’re outside in front of a wooden fence. from left to right: dad, me, mom, brother (Carlos).

can someone please explain racism?
 
I am a woman of color because I am Latina. My parents moved from Puerto Rico to Ohio (only cultural immigration, not citizenship change). My family has dark hair and caramel skin, and English is my parents’ second language.
 
I have albinism, so I have fair skin and blonde hair
I’m not adopted, I just lack melanin
I still have poufy lips, thick hair and other “defining features,” not to mention my last name ends in the quintessential -ez suffix
 
but apparently melanin is a huge deal
 
not only is melanin nice to have because it diminishes your chances for skin cancer, but it’s also the basis for discrimination everywhere. It’s happened for centuries and there’s evidence in Shakespeare’s play Othello just to bring one of millions of examples
 
my family has experienced open racism and microaggressions throughout their lives with people questioning their aptitude and morals of coming here illegally (which isn’t possible because Puerto Rico is a territory, but hey)
 
yet every day I am treated like a white woman.
a white woman with a disability, no doubt, so I experience countless microaggressions and instances of ignorance separate from those of my family, but that’s not what this is about.
 
people don’t understand who they’re talking to when they make Mexican jokes, mock Hispanic accents (yes, even my mother’s), and jokingly appropriate Latin culture in my presence. Yet when I disclose my ethnicity, people ignore me for the amount of melanin in my skin.
 
I have two surnames (on Facebook).
I speak fluent Spanish, while some of my friends who “look Hispanic” do not.
I have relatives in Puerto Rico, where I have been countless times, not on a cruise.
 
yet I am never enough. once white people know I’m not European, they’re cautious. Even other Latinos don’t hold my opinion with the same standard when they see me (partly, I assume, for my obvious disability). Not here, not there, never fully one or the other
 
as an outsider on every issue of race, I feel I am in an odd position, confused on why racism exists. If racism were truly about “race,” I would face the rampant discrimination so many others do, often on a daily basis. Yet clearly, it’s purely cosmetic.
 
I discovered why I wrote this while I wrote it, and my plea is this: imagine if the person you were less inclined to believe had white skin, like mine. Would you question him/her less? Would you feel more comfortable simply because of his/her skin color? If so, please re-evaluate your criteria for trustworthy people. Not every black person lives in the inner city; not every white person lives in suburban America; not every Latino is an illegal immigrant; not every Asian is good at math; not every Indian works in tech support.
 
please give people the respect they deserve. God gave some people more melanin than others, but He created them just as He created you. Show everyone Christ’s love, because none of us deserve it.
 
have a beautiful, sunshiny day.

what do you want to do with your life?

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A Snapchat of me taken  by a friend during finals week last spring. The caption reads, “Studying Calc 1172 Whoo! “and shows me bent over my computer and iPad, both of which are very zoomed in.  I am working out a problem on my iPad which can be seen slightly on my computer screen.

“What’s your major?”

computer science and engineering.

“wow, you must be super smart! I could never do that!”

 

let me be clear: I am not a genius. I am not acing my classes with ease. Being “smart” is very relative to the environment you’re in, but aptitude is absolute. Every major is difficult in some way —  for instance, I could never ever draft a marketing plan — but we are created to do different things.

I chose to study engineering and technology because I love how tech works. When I got my first computer, I was fascinated how one setting could impact the entire system’s performance. I taught myself a lot, including what not to do to a computer (I nearly broke it, whoops), but I knew I wanted to do something with computers.

as a freshman in high school, I took a course in HTML programming. HTML is the language of the internet, and almost every web page uses HTML in it. Although most computer scientists will tell you that HTML is “cheater code,” meaning it requires almost no skill in programming logic and computer decision making and is based in English, the entire concept of code thrilled me. I could type some symbols in my computer and after some hard work catching errors I could make something that other people could use!

before going to college, I tried as much as I could. I learned basic programming logic through Microsoft’s Visual Basic (now called “obsolete”), MATLAB (which I now refer to as a “glorified calculator”), and learning IT basics, such as computer hardware and general troubleshooting strategies. On my college search, I loved Ohio State’s program since it combined computer science (software based) with the problem solving skills required in engineering without so much emphasis on hardware.

did I ever consider any other major before going to college? Sure! I thought about dietetics once I was diagnosed with bowel disease, but it would’ve required a lot more chemistry classes than I was thinking. I briefly thought about nursing, seeing as how nurses have often saved my life with the simplest things, but I would’ve had to work against my vision daily to stick an IV or read the blood pressure monitor. However, in computer science, I can use technology to enhance my view of things so I can read my own code. Brilliant!

I started college, and as most firsts year students quickly realize, I was now average. there will always be someone in your class that takes a perfect midterm, answers every question, is a quadruple major, and has a crazy side project of developing the next greatest app. While I could use assistive technology, professors write on chalkboards, give lots of handouts paper, and aren’t aware of students with disabilities unless they themselves choose to disclose. I’ve run into many challenges, including failing my first calculus quiz because I couldn’t read the graph, stumbling my way through engineering drawings with no depth perception, and a combative professor who was reluctant to handle my accommodations.

on a different note, I’ve also learned that professors are people too. Most do care and will help you if you are open and honest with them. I never use my disability as an excuse for not doing work and as soon as my professors see that, they can even relate to you on a more personal level. My first semester, I selectively disclosed to professors and rarely used my cane. However, after an initial phone interview with Guide Dogs for the Blind, I used my cane everywhere. I never stopped to think until it was much too late that the professor I was seeing for office hours knew nothing about my vision and panicked when I walked in with my cane, even though she did nothing wrong. We later discussed it and she was extremely helpful, but she still felt unnecessarily guilty, which I felt bad for.

But why do I suffer through difficult classes, dense theories, and hours upon hours of rectifying my code so it actually works? Until last April, I couldn’t have accurately said. Yet seeing as assistive technology, like the use of my iPad or zoom feautes on my MacBook were essential to my success (not to mention good friends, study buddies, and the Lord so I didn’t go insane), I realized I wanted to provide a similar experience to others.

there are extremely few persons with disabilities in STEM fields, namely because they aren’t easy or easily accessible. Disabled people have struggles that most able-bodied people take for granted, but we learn to adapt and make lemonade out of limes. However it’s 2016, at the dawn of what some might argue is a technological revolution, and we have the right to make our already complicated lives a bit easier. Engineering can be for everyone, or even going up stairs without a ramp for people with mobility disorders.

all this to define what I want to do with my life, yes, but more importantly to share why I’m passionate about code that prints out stars in a pattern. The seemingly silly things I’m learning now could very well be the building blocks of my future. The theories and logic I have jumbled in my brain is not just to regurgitate on an exam, but as an active part of the learning process. The often over-quoted Scripture “I can do all things through Christ who strengthens me,” has merit in that He will strengthen you for the difficult tasks ahead that fall according to His purpose for you. I may not know what exactly I’ll do or where I’ll do it, but for now, I’ll do my math proofs and suck up whatever I can on this bumpy ride called college: it only comes once most of the time, so seize it.

a girl with a guide: week one at GDB

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Sitting with Romana outside. I’m on the left, wearing a light green top and jeans with holes. My little lady is in a sit on the right, on leash and looking at the camera. I’m smiling and have my arm around her chest.

Sometimes we fantasize something only to have our expectations crushed, but being at GDB has been far more than I imagined.

before coming here, I was nervous about lots of things, with reason, as this is a brand new adventure: I wasn’t sure I could take care of another living thing, that I had too much vision to properly use a guide dog, that she wouldn’t like me. For the first concern, I felt that my own health was high maintenance enough, or that I wouldn’t understand how important playtime is for emotional well being. Next, many people who have guides have very little or no vision. I’m considered a “high functioning partial,” or in other words, “I’m borderline blind and can get away with things such as not needing to read Braille.” As a person with albinism, though, we are extremely light sensitive, which makes outside travel (and occasionally inside) very difficult since our eyes can’t filter light. Many people with high functioning vision are asked to wear blindfolds in training if we begin to lead and not follow our dogs, which while an effective training method, I wasn’t too into trying since I like to enjoy the nature of what I can still see outside. Last, I wasn’t sure how to create a “bond” with a dog and was afraid he/she would so not be into me.

Though these were all common concerns, Monday rolled around nonetheless. The anticipation of Dog Day was high and all my wonderful classmates wondered what kind of a dog they might receive for the next 6+ years. After the longest lunch ever, we all sat down one of the trainers read, “Cassandra, you will have Romana, a female yellow lab.”

Initial thoughts: “wow, I love her name! It’s not something ridiculous!”, “oh yay, I secretly really wanted a yellow girl.”

we all headed back to our rooms and waited. After what felt like hours, my trainer knocked on my door and brought her in. At first, she looked at me briefly and continued sniffing the floor with great interest. “Romana is 58 pounds, 22 inches tall, and her birthday is September 15th.”

she was stunning, a yellow that was nearly white, with fantastically light, golden eyes.

and just like that, the trainer left to continue getting everyone else’s dogs, and Romana and I looked at each other wondering what to do. I started scratching her and her tail wagged furiously. In typical lab style, she didn’t smile, but her tail said it all: she was a happy girl.

little by little, we learned to brush fur and teeth, clean ears, play, feed, take them out to busy, and so much more. As we started our formal work together the next day in downtown San Rafael, I knew she was the perfect match. I got her going to a little trot and was learning the mechanics of guidework terms like “forward,” “hopup,” (go faster or urge them on), making turns, “halt,” and she executed effortlessly. It wasn’t flawless, but towards the end of the week, the trainer supervisor who peeded in on our route, said, “she looks like a trainer!” From following all their advice and being patient, we were already worlds away from where we started.

when we’re working outside, I remember why I applied for a guide dog: the sun was bright, and between the intermittent shadows of tree limbs, it was extremely difficult to see. With her, we flew down the street, and I had the confidence that she would take me around obstacles and stop at the curb so I knew where we were.

while outside work wasn’t as bad, we struggled when we first went to the mall. Due to the people milling around, Romana couldn’t go her “working pace,” and just wasn’t focused. When we finished, I sat around drinking my cold brew, trying to remind myself why I was doing this. Flickers of doubt poked in my brain, as they do to most people in training. I tried to give us a break, but I couldn’t help but be frustrated. Then, the words of a GDB graduate once told me recently sneaked in: “you’re an engineer, so you’ll want everything to be perfect, but remember that it won’t be, and that’s exactly what training is about: learning about each other and building a foundation of trust.”

the Lord has really orchestrated this, between the people in admissions to Romana’s puppy raisers, to the trainers, and has brought her to me. She’s a gem, uniquely awkward sometimes, just as I am, and very decisive about what she wants. I prayed for my little lady on and off since last December, and God brought this little yellow lab to me. I know that ultimately, He is the perfect handler, and I’m the silly puppy who makes mistakes in the route, sniffing around and wondering what our final destinations is. God is so good, and He will be with our partnership as long as we both shall live.

I’m so grateful for all the support from friends, family, and the GDB staff. It’s hard to believe that a week ago we’d never met. We still have another whole week of training, and I’m so excited to see where we go. One of the first things I said to her when we met was, “we have the whole world ahead of us,” and now I see it. We really do, and I’ll let God take me a happy twist and turn along the way.

until then, “forward.”

blazing trails with waggy tails: frequently asked questions

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A photo of me at the airport. I’m wearing black leggings and a gray sweater with a daisy in my hair. I’m holding my cane and light green suitcase, looking off to the side.

I’m really, actually doing it: I’m taking a step for my independence and going on my first solo trip to Guide Dogs for the Blind (GDB) in San Rafael, Cali!

I thought I would make a short post answering some questions people have asked as I’ve talked about getting a guide dog. Feel free to ask any questions in the comments or contact me directly!

Why are you training for two weeks?

for a blind person, a guide dog is like a piece of medical equipment (like a wheelchair), except it’s alive. From an engineer’s view, both a dog and a person are independently functioning systems with ability to think and make decisions. However, if you combine two independent systems, they become co-dependent and have to learn about each other, like a relationship or marriage. Since we can each make decisions independently, we can make mistakes, and have to learn to function as a team. A guide dog handler (me) has to give their dog commands (like forward, left, right), so as a new handler, I have to learn these commands and how to utilize them.

Why doesn’t your dog wear a vest?

guide dogs do not wear vests for the primary reason that their handler is blind. The purpose of guide dogs is to essentially pull me around as I tell them where to go. A vest identifies a service dog (similar to a guide dog, but does different tasks like seizure alert, PTSD dogs, blood sugar alert, etc) to the general public, and is a symbol for the dog that it’s in “working mode.” However, a guide dog’s harness is a rigid, U-shaped handle that not only signals the dog to be working, but is necessary for traveler since the handler is blind.

How do they know when to cross the street?

the short answer is because I tell him to! Contrary to popular belief, dogs can’t read traffic signals, so I have to use both my auditory skills and sometimes remaining vision to know when it’s safe to cross. However, there are always crazy people running red lights and turning illegally. A guide dog is taught “intelligent disobedience,” meaning if he sees a car coming that is unknown to me, he will not go forward until it is safe and saves my life (a cane can’t do that!).

Will your dog live with you/go everywhere with you?

yes! The Americans With Disabilites Act defines a service/guide dog as a dog who is trained to perform specific tasks for a disabled handler. Service dogs are allowed access everywhere, including places that do not normally allow dogs. This excludes comfort animals/emotional support animals whose sole purpose is to be of comfort and not a specific task (like reminding a mentally ill handler to take medication, alerting of an oncoming seizure, or guiding a blind person). Therapy dogs, or dogs that go to hospitals/funeral homes and provide comfort to more than one person have a different set of laws attributed to them.

so yes, my dog will go everywhere I want it to go with me! I’ll use discretion of when would not be a good time or place to have him (like OSU football games, ayee). He can stay alone in high intensity situations where I wouldn’t need much guiding. But he would be allowed in university dorms and my sorority house.

Do you know anything about your dog prior to training?

no, and it kills me to have to wait! While other schools (places guide dogs get trained) might release information prematurely, GDB does a fantastic job at hiding any information from me until the day I receive my dog. This includes name, gender, breed or literally anything about my dog (those stinkers 😉).

Can I pet your dog? Can you pet your dog?

of course I can pet my dog! Physical affection during guide work (harness on) is motivating for my dog and reminds them they’re doing something right. It’s also necessary and healthy for the dog to be loved by its handler, especially when providing a service to me.

regarding others petting my dog, the answer is yes and no. Much has to do with the handler’s own discretion. If you ever see a guide or service dog, please ask of you want to pet the dog, especially if his harness or vest is on!! If you pet a dog while he’s working, or even make eye contact for that matter, you risk distracting the dog from his job and could risk the handler’s life. Even if a dog is laying by their handler and seems to be doing nothing, if the hardness is on, it’s work time. When harness is off, please still ask as this isn’t your dog, but there’s not a risk of distraction since the dog isn’t technically working.

How do they know what dog will suit you if they don’t really know you?

guide dog schools get to know you pretty well during the application process. They usually do some sort of interview and ask you in detail about your travel habits. For example, I explained during my interview that I’m a college student in a large campus and urban area. Often, they match you to a dog that can fit the required energy levels you need for your daily travels. They also match your temperament based on how they perceive you. There is also a small degree of personal preference for breed and gender that they incorporate, but overall it’s about having the best match.

Do you get to name your dog?

unfortunately, no. My dog will be at least a year old, so it has to be called something for its short life! The generous donors have the unique privilege of naming dogs, which causes for some interesting names.

Are you excited?

I’m so excited!! I feel that I would benefit from a guide because of how much walking I do on campus. My vision is very dependent on the correct lighting (i.e. I’m extremely light sensitive which impairs my vision further) and the sun isn’t disappearing any time soon. I especially feel that this will increase my autonomy and independence when traveling on my own as I do in college.

 

what other questions do you have? Stay posted on my journey as I meet my guide this upcoming week and begin to learn about this new phase in my life. you can follow my journey on Facebook for more up to the minute coverage (link below), and as always, thanks for reading and have a sunshiny day! ☀️

I’m no celebrity

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a photo of me, this past June, in Ketchikan, Alaska. I am standing near a central road in the small town, wearing a dark red skirt and white top with dream catchers and holding my white cane with a green grip. In the background, the sign “Welcome to Alaska’s First City: Ketchikan” is visible.

I was sitting, alone, in a glass room in Ohio State’s main library, drinking a frozen hot chocolate on a warm, April night.

Suddenly, someone I had not the pleasure of knowing quietly knocks on the glass and I, not knowing, wave him in.

“I feel like I’ve seen you before, have we met?”

(bear in mind, he’s asking a legally blind person).

“I don’t think we have,” I respond tentatively, “But I’m the girl with the stick around campus, if that helps.”

“Oh yes! I have seen you before!”

My unexpected guest turned out to be a very nice gentleman, who asked me curious yet respectful questions about my blindness, which led to a good conversation. However, this encounter left me realizing that I am more easily remembered than I know.

I’ve had many encounters of different natures, some with strangers and some with people I’d met briefly, over the course of my freshman year.

For example, I joined a sorority last February. On Bid Day (the day you meet a lot of your soon-to-be sisters once you’re asked to join the organization), I was thrilled to begin a new chapter in my life with women who shared similar values with me. However, throughout the next month, I had girls running up to me, squealing, and saying hello. For me, this was not only amusing, but also confusing… Did I actually know these girls? Which, of the many things I’m involved with on campus, organization are they from? Unless they were wearing our chapter’s letters or the sweater we received that day, I was just happy to be receiving free hugs.

A good friend once said, “You’re iconic, with your bright clothes and lipstick and a flower in your hair,” and I’ve come to believe it, but I’m no celebrity. I decided in high school that if people were going to stare, I would surely give them something to stare at, in a positive way. I want my presence to represent blindness, my Christian values, my sorority, and everything I want to stand for.

So, to all of you who say my name to greet me, thank you! If I’ve only met you once, please forgive me for forgetting where I know you from. I haven’t had enough time to know your voice and your lovely personality. But once I know you, you’ll never be forgotten.