Post by Kasey Łukaczyński on Jun 23, 2014 20:39:10 GMT -5
Name: Kasey (formerly Katarzyna) Cecylia Łukacyzński
Nickname: Kasey, K.C., K.C. Luke (all said like Kasey)
Age: Twenty Five
Member Group: College student - Kasey received her Bachelor's of Communication from the University of Vermont 2 years ago, at the age of 23. Due to her disability, particularly the amount of time she has to dedicate to physical therapy, Kasey required an extra year of study. She is now pursuing a masters degree by taking classes part-time. she expects to receive her degree with three more semesters of study.
Power(s): none
Play By: Sophie Morgan
About K.C.:
Likes: Reading, blogs, maps, skiing, dancing, coffee, Polish food, social media
Dislikes: people who use handicap spots but don't need them, yogurt, steep hills, big gas-guzzling cars, makeup
Strengths: positive, determined, not easily offended, strong communication and public speaking skills,
Weaknesses: cynical, blunt, self-critical, nosey, getting up in the morning, walking
Fears: Becoming dependent on someone, never finding love, her disease getting worse again
Secret: Some people know, but Kasey's given name was Katarzyna. She legally changed it when she was 17 after years of being called by her initials 'KC' anyway - since her Polish name is so difficult to read/spell/pronounce. (And she hated the nickname 'Kat')
Father: Zigmund Jozef (54 - line cook - Polish Immigrant)
Mother: Anastazja Irenka (50 - school teacher - 1st gen. Polish American)
Siblings: Hanna Dosia (18)
Any Other Important People: Her puppy, Josie
</p>From the blog of K.C. Luke
6/23/14
3:46:23 PM
Welcome to my world...
Today a friend of mine had a bad morning. The kind of morning where everything seems to go wrong - woke up late, hair standing on end, out of coffee creamer, low on gas - the whole sha-bang. And when the cute barista at the coffee shop handed her a non-fat-mocha-late without the sugar that had been requested, she asked me if I ever felt like the entire world was against me.
It took me a few moments to answer - not because it was a difficult question, or because I was attempting to conjure up some existential bullshit from the depths of my soul in an attempt to empathize. I just really needed her to appreciate the irony of the question. I don't think she thought it was as funny as I did, because when she realized who she had just asked that question to, a horrified look crossed her eyes. She began to apologize profusely as she scooped up out drinks and carried them to her car, allow me to hobble behind, bearing my weight on my Lofstrand crutches and laughing at her incessant appologies.<img style="max-width:100%;" src="http://wearehandicapped.files.wordpress.com/2014/04/asophiem.jpg" alt=""></div><p><br>I was diagnosed with Early-Onset Miyoshi Myopathy when I was 12 years old. Long story short (avoiding all long-winded medical terms that I <i>still</i> don't know how to spell) my legs suck at being legs, and one day I'm going to wake up and they'll have stopped working all together. Because the disease kicked in sooner than usual (average onset is at 20. I guess I'm just an overachiever) it progressed quickly at first. By 19 or 20 its progress slowed down, but I was already unable to walk more than 20 ft unassisted. These days, at 25, I spend a lot of time in my wheelchair. I can only walk about 5 ft unassisted when I'm feeling strong (or daring. or stupid). I can walk for periods of time on my crutches before becoming too weak to put any pressure on my legs. I go to physical therapy 3 to 4 times a week to prevent the muscle wasting from spreading to my upper legs and hips, and then to my chest. Because if the muscles in my chest start to weaken, we'll have a whole new set of problems that I can't even begin to get into at the moment (we'll leave it at unpredictable heart and respiratory failure). </p><p><br>I have such an amazing support group, though. Even if I "left" them for bigger and better things at the University of Vermont (I'm literally only 45 minutes away from home, but I don't think my mother will ever get over the fact that I left the nest). My parents check up on me daily, and while somewhat annoying I know that they care. They were the ones who kept me walking when I wanted to give up. They cheered me on when I started to fall. They made being in a wheelchair feel ok - despite the fact that they knew it was going to be difficult. Even my bratty little sister knows when its her turn to pilot the ship for a while, like that time we went to Disney and I couldn't propel myself up a small hill in Animal Kingdom. She had my back then and she'd have my back now, again, I'm sure. As I deteriorate I'm going to need them more and more. Independence is a luxury for me right now, and over time I may have to go back to relying on my family way more than I want. It's all over once I can't reach the microwave.
Yeah, it sounds pretty sucky. Sometimes it is. But it isn't a sucky life. I get cool discounts from unnecessarily sympathetic store owners/restaurant managers/bowling alleys who don't follow the handicap ramp code. Once my legs stop being legs I'll be a candidate to receive some weird, bulky, robot legs that will do the walking for me, at least around my house (and who doesn't want to be a cyborg?). I can still dance, even if I'm all arms, and a little awkward. I can still ski, even if I'm sitting. I can still do almost everything a normal, walking person can do - just a bit modified. And, hey, I still have it all goin' on ~down there~ if you know what I mean. (Call me boys ;D).
It is a hard life, but aren't they all? Today my friend reminded me that we all have our own shit going on. What's a bad day for you may be a blessing for someone else - but that doesn't make what you're feeling any less valid.
That being said, I didn't start this blog today in an attempt to get sympathy or pity from digital strangers. I get enough sympathy and pity from regular strangers. Much to much really. They need to stop. I didn't do it to bring awareness to my cause, although that much is inevitable. I didn't do it to solicit donations or guilt people into finding a place to make them. There are much worse diseases that are much more deadly. People are fighting a much harder fight than I. I didn't do it to appear heroic or special. I did it because I'm an unemployed, 25 year old, part-time student trying to get her masters in communication and live a normal life in a world that sees me as anything but normal. I want to be normal (I don't know how to achieve this through a blog, but it seemed as good a place as any to start).
It's a pipe dream, I know. But I'm a human with dreams and goals just like every other person who can still walk this planet. I'm just walking a little slower... or rolling a little faster. And I'm ok with that. As long as all these restaurants start adding handicap ramps.
Oh.
And no, I don't feel like the entire world is against me.
-K.C. Luke
Name: Emily (Regina)
Age: 222 (is a vampire)
RP Experience: 222 years
How did you find us?: the one the only sydnee
See Eloise Eaton or Gabriel James
