“I don’t want anyone to pity me; I just want people to respect me like they do everybody else.”
Amanda
"I got a cochlear implant in May of 2015, at age 28, after not having hearing in one ear for most of my life. Before, I was constantly asking to hear everything people said a second or third time. I expected it to be like those YouTube videos you see where people turn it on, and immediately they're just like, 'Oh my god!'
"I mean, that is how I felt initially, but I've realized it's not that easy; it's a slow process. I'm exploring all these new sounds, and noisy situations are tough for me, or even quiet situations. My implant differentiates between when someone is talking to me or when sounds are just background noise, but my brain isn't there yet. I'm learning to hear more clearly, but I'm not totally there.
"I got my first hearing aid at 21. Before that, I had just been getting by. I had stayed pretty quiet in school because I couldn't really hear people talking to me, and it was embarrassing, but I found makeup as a teenager was an outlet for all the expression I was holding back, speech-wise. It's a big part of me, still. Except now, I don't stop talking."
Taylor Miller / BuzzFeed
Jenice
"I was diagnosed with Crohn's disease at age 10, but if you didn't know me, you wouldn't think that I 'look sick.' A lot of people, even medical professionals, assume ostomies smell or are unhygienic, but that's simply not true. I love to go out and dress up in formfitting clothes. I'm an avid swimmer and wear cute suits. The fact is, unless I tell someone or get completely naked in front of them, no one ever realizes I have a bag. Everybody poops, I just happen to do it a little differently!
"I am not just my Crohn's, or my scars, or my bag, but they're an important part of me. My illness is why I went into the medical field. Eight years ago, I was on what I thought was my deathbed, in a medically induced coma with every imaginable complication from my disease and subsequent back-to-back surgeries. Coming out of that relatively unscathed, I realized that patient care was my calling. Now, in addition to being an EMT, I'm a medical assistant and certified nurse assistant, and I'm hoping to one day work in gastroenterology as a wound care, ostomy, and incontinence nurse. I know better than anyone how it feels to be a patient, and if my experiences can help others, then I believe that's my purpose in life. That's the reason I was given what I was given.
"Something I think about a lot is that all literature and medical supplies related to ostomies only show depictions of older white people. It can be discouraging to young people — especially minorities and people of color — who are already thrown by the transition of starting to live with a chronic medical condition. That's why I always try to represent. Hey, I'm sick and young and of color, and you wouldn't have guessed it, would you?"
Taylor Miller/BuzzFeed
Steve
"I’m 25 years old and I have muscular dystrophy. The biggest way it's impacted my life is that I can’t go wherever I want, whenever I want. It’s very frustrating to always have to check if buildings have stairs to get in or if a subway station has a working elevator. That said, the most common misconception I face is that people don’t think I do anything or even go out.
"Despite my disability, I’m still a regular guy. I’m a substitute teacher, stand-up comedian, actor, and motivational speaker. I can be just as funny or as big of a douchebag as everybody else, and I’m going to live my life how I want and not let my disability get in my way.
"I chose to be photographed before my show at the Peoples Improv Theater because it's a place that makes me feel so special. It gives me the opportunity to be myself and make other people laugh, which gives me so much satisfaction and feels so rewarding. I’ve fought every step — I mean, roll — of the way, and I’m having an incredible ride."
Taylor Miller / BuzzFeed
Cameron
"I have a connective tissue disorder called Ehlers-Danlos syndrome, which results in hypermobile joints and a number of other health conditions and concerns affecting my digestive, respiratory, skeletal, circulatory, immune, and other bodily systems.
"EDS was first described by Hippocrates. It's not a new disease; it just needs research. There is a lot of ignorance and denial in the medical field when it comes to connective tissue disease, so if you want answers, you have to advocate for yourself. It could save lives in ERs if doctors knew how to recognize an aortic dissection, or even just knew more about EDS than hypermobile joints, which isn't to say doctors are the only ones with a lack of understanding. People without EDS tend to take for granted eating standard food, walking a few blocks, using the stairs when the elevator is down, or only seeing a doctor once or twice a year. They can eat what they like, when they like, without worrying if they'll be in too much pain to see a friend or go to class. Their hips don't come out of place while sitting, and they don't collapse because their knees are not in place.
"One thing I run into a lot is people staring, which seems to defy basic manners. I know I'm young, and maybe the people who stare feel bad, but...everyone knows there are children with cancer, so why can't there be young adults with other diseases? Don't stare. Offer a seat instead of taking up the disabled seats on the subway with shopping bags. Leaving nasty notes on cars with disabled stickers is the suburban equivalent of this. There is a reason that person has a sticker!
"Patients like me, who need a GI motility specialist, usually have to go to Philadelphia or Baltimore for help; I had to wait a year to get an appointment with one closer to me. You're very lucky if you ever get to see anyone for EDS at Johns Hopkins; the waitlists are so long, most of us wind up on them and get terrible care in the meantime. And all the things that can be done to help an EDS patient either may not work, or doctors consider you too risky of a patient to touch. You can have surgery, but you might bleed out or rupture something. You can have a feeding tube, but because of EDS you also have autoimmune deficiency and you'll get dangerous infections. EDS should be called 'The Catch 22 Disease.' But you cannot win unless you laugh."
Taylor Miller / BuzzFeed
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