trained to survive and learning to thrive: college life with IBD

This post was originally written for Girls With Guts’ online blog. Girls With Guts is a nonprofit organization seeking to empower women with Irritable Bowel Disease (IBD) and ostomies. Find the original post here, and consider supporting Girls With Guts or the Hermansky-Pudlak Syndrome Network.

(description: photo of me wearing a striped sweater and distressed denim overalls, holding a latte against a brick wall)

College is a time of transition and self-discovery. There’s no other time like your undergraduate career that you can try a variety of different clubs, meet people with similar beliefs/interests, and learn something new by being immersed in diversity, all while getting a degree and becoming a “real adult” to find a career.

However, for many students with Inflammatory Bowel Disease (IBD) (also called Crohn’s Disease, colitis, etc), college can also be a time of acceptance and re-acceptance of your condition.

While you no longer have to sit through classes for eight hours of the day like in high school, no one will force you to go to school like your parents did. As one of my professors reminded us in lecture last week, “College is completely voluntary. in fact, you’re paying to be here, and you come by choice.” Exams are stressful, your GPA will rise and fall like the tide, and you constantly question why you’re pushing yourself so hard for a piece of paper. So, if you’re chronically ill, have a medical device or take 42 different medications, why would you choose to do it?

I can’t answer that question on behalf of every chronically ill student, but my answer is: because we’re trained to survive.

I have a complicated rare disease called Hermansky-Pudlak Syndrome (HPS) that involves albinism (lack of pigment in hair, skin, and eyes, often resulting in legal blindness), a blood platelet clotting defect, and, in some cases, IBD around fifteen and pulmonary fibrosis around thirty. I was diagnosed with Crohn’s Disease when I was fifteen, between my freshman and sophomore years of high school. Although my doctors always said my case was very mild, it progressed quickly, and, coupled with my platelet clotting disorder, caused a lot of internal bleeding. I ended up having a total colectomy just shy of eighteen and two weeks after my high school graduation as a result of six hemorrhages and nearly fifty blood product transfusions in five short months. Two months after that, I started my freshman year at Ohio State with my new ileostomy, setting out to get my BS in Computer Science and Engineering.

Why?

I say all this not to gain admiration. However, due to the nature and progression of my illness, I was essentially incapacitated from February-June of the year I started college. As soon as I had recovered from surgery, I wanted to taste the world; I craved life and so badly wanted to feel like a part of society. I tried everything, went to football games alone because I didn’t know anyone but refused to miss out, and even rushed a sorority three weeks after removing my rectum.

What’s my purpose with all this? It’s just to say that life is a delicate balance, and college is the perfect place to learn that. Although I spent about two years medication free, I was recently re-diagnosed with another Crohn’s-related complication and have been reflecting on “sick” times and “healthy” times. I’ve re-learned that while chronic illness never leaves you, you have a very small amount of control on what you do in the time you’re given. If you’re feeling “healthy,” seize the time you have and try anything and everything. Otherwise, if you’re feeling “sick,” take the time to step back and give yourself what you need. Celebrate small victories, grieve losses, practice self-care and acknowledge your emotions. Still push yourself to maintain relationships with people who “get you,” and consider being part of a support group to remember you’re not alone. And, when you do graduate after 4(+) years, with maybe some stop and go, you can hold your piece of paper and say, “I’m a warrior, and I’ve learned to push hard and pull back, move forward and pause, laugh and cry, pass and fail, thrive and survive, and I’m not going down without a fight.”

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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 ☀️

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

thanks

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.

blazing trails with waggy tails: frequently asked questions

image.jpeg

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! ☀️