For the first 40 years of my life I’ve shied away from being labeled inspirational. Something just clicked this morning, if the world would like to worship me, then I should just own up to it and accept my faith. I have decided that as my crown is being designed, I should write my speech to my followers, accepting my inspiring position in life. So here goes.
Friends, countrymen, lend me your ears. Despite my cerebral palsy, I was the only one of my siblings and cousins to graduate from college. Oops, not so true. But wouldn’t that truly be a kick-ass inspirational opening line? Reality is of my 20+ cousins, with a BA in Communications, I am the least educated. I know, tough brilliant crowd. Lawyers, and Doctors and Therapists and Entrepreneurs, I think there’s even a humble Rocket Scientist who has never “labeled” herself. Girl if that was me, I would have “I’m a rocket scientists” tattooed across my chest, in a superhero font. Then there’s me. Yeah. Ok.
I have climb mount Everest. Isn’t that an inspirational touch stone? I have to say that out of all the bucket-lists of things to do to push yourself, to me Climbing a freezing mountain falls in the category of least appealing. Don’t get me wrong, I’m not a total sloth. Three years ago, I promised myself that the next full time paycheck I earned, I’d buy myself a 7 speed trike and I would train and finish a marathon. Actually I’m being serious. It’s on my bucket list. But so is a week in Vegas with all my girls and one cabana boy who was schooled in peeling grapes. I’m drifting, oh yes, the trike. My cerebral palsy will let me ride a sturdy trike. Maybe not fastly, or elegantly but it’s do-able. And maybe if I did a marathon or two, it would add to my inspirational creditability.
Three years later the trike thing is still my plan and I’m still waiting on my next full paycheck (same as the one specified above) so nothing has changed, well maybe one tiny thing. It seems that a large number of my friends as well as my underachieving family members have taken up running. So where is the inspiration in being like the 47th person in your social circle to do something, Now, instead of “Holy crap, I never met anyone who has run a marathon, your inspirational,” It’s just “Thanks for joining us.” Not to be kicked when I’m down but a few have even flirted with the idea of triathlons, even one completion. I’m not jealous because one, I can’t swim, although that was 15 pounds ago so maybe the fat would now help my buoyancy. And two, honestly triathlons just seem like too much work, too many clothes changes. Do you know how physically demanding it is for me to change out of a wet swim suit? There’s an inspiring motto, Triathlons, too many wardrobe changes. I figured by my first marathon, I’ll be surrounded by ironmen/ironwomen. I feel like my life equals to always getting in the longest line at the DMV. I see the end result, I just never seem to be able to get there first, or in my case, by the time I get to the head of the line, I forgot to get something notarized, so I get sent back to the end.
To me, being inspirational is doing something for others that is out of your comfort zone. I have been called inspirational for being seen at a public restaurant. Isn’t she such an inspiration for going out in public? Really? My younger younger like high schoolers cousins started a non profit called http://www.icedcapadescakery.com/. They throw monthly birthday parties for kids in homeless shelters. Yeah. I’m really shaking off that inspirational glow huh?
But I assume my devotees are still clamoring for my inspired speech that will make them feel better about themselves. So, here I go, friends, countrymen, lend me your very short attention spans. Inspirational I am not, however I do strive to be, how should I say? Normal. My normal which my upraising has dictated, my intelligent, motivated friends have enforced and what my personally income bank account thirsts for. So by my next decade’s celebration, I can’t bring myself to type that particular number. But I do have 9ish years to accomplish crazy inspiring feats such has working at a big company in a little cube that has a 501k. Riding my trike in a 5k, then eating doubled the calories I just burned in pasta. And if I’m really lucky I’ll publish the novel that I have been working on whenever my muse drops by. Making me, perfectly normal, striving to be inspirational. But it’s an awfully high amount of peer pressure, as the bar is constantly being raised. And for that, I am just a tad irritated but mostly very thankful.
P.S. if you subscribe to my blog, you’ll receive my ebook, “My Walker and Other Glamorous Accessories,” Over 8 sold. Your email address will never be sold, abused, or used as ante in a high stakes poker game.
The older I get the less worried I am about what others think about me, except for my family of course. Because try as I may to shake it, I’m a respectful Vietnamese catholic guilt-ridden daughter at heart. But other than my family, I like to think I have evolved into not worrying so much what people think about me.
Most of the time I can laugh off what strangers think of me. The two harsh knee-jerk judgments are, one, that I am mentally challenged. And two, that my husband is my father. Ok, the latter is kinda, sorta, a tad bit hysterical. But, as I type quickly before my husband unsubscribes to my blog, this only happens because he has gorgeous salt and pepper hair and I do look kinda young, which totally makes up for the stuck-in-a-wheelchair forever thing, not! My husband is so sick of that argument, “Sorry you had a bad day but at least you can WALK.” Married 15 years, he’s a saint not for putting up with my cerebral palsy, but for putting up with my lip. When people mistaken him for my father I always want to do something like start making out with him. But we are usually in the grocery store and although I’m not a prude, it seems a little odd making out in the pasta isle.
I try not to let it get to me but one thing that does bother me is when people think they know how smart I am, just from my looks or the sound of my speech. I have a Bachelors of… Arts. And it only has taken me a year to finish one thirds of a novel. And once I won a game of Carcassonne. (if you knew the game, the players, and the cut-throat competition, you’d be impressed, really.) Wow ok, this probably wasn’t the best example of why first impressions are bad. I just want people to judge my intelligence on a conversation or by my actions, than if they decide I’m just a pretty face, it may be a fair assessment.
As my son enters 7th grade, I’m finding it harder and harder to preach what I’ve always tried to practice. Be yourself, except around older family members than be extremely polite and agreeable, other than that, be yourself, and you will find a group of friends that will love you, quirks and all. For the most part I have done this and have the most amazing group of friends you can imagine.
But let’s face it, kids tease. And I don’t want Nicholas to be teased by anyone but me. I gave birth to him, I think it’s only fair. I know kids will tease him about his glasses and call him beaver because of his teeth, which he laughingly told me about. I just really hate the thought of being a “quirk” that can be used against him. I’m an awfully big quirk that mean kids may use against him. Worse than my mom’s accent, that I didn’t know existed until it was pointed out, worse than my hubby’s mom always wearing floppy gigantic hats. I’m a rolling target of things to be teased about.
The reason this is on my mind, is Nicholas has an orientation tomorrow. It’s a weird time, midday when my hubby is working. And sadly I find myself not wanting to go. I have gone to all school functions with my husband and I never realized how much I rely on him as a buffer. If a kid has questions, he can answer. I can’t do what I do in the real world where when someone stares at me, I usually stare back. As rude as it sounds 90% of the people will realize what they have done, bow their heads in shame and go away. I know, it’s my one and only super power. In school, this may be perceived as stalking so I reframe from staring, although I’m considering wearing dark sunglasses all the time.
It just bothers me that Nicholas might have to defend me in a large crowd of his peers. It bothers me more that it might come back in a bully’s comment. And just like his dad, he would, to my pleads not to, defend my honor, chivalries yes, worth detention, not on his life. When Nicholas was about eight, we were at a friends house and I overheard him explaining me to a new friend he had just met. “Oh, that’s just my mommy, she’s a lot smarter then she looks.” Best out-of-the-mouth-of-babes line ever. And that’s sorta a good representation of his view about my disability.
I still haven’t decided what I am going to do on the orientation thing. I have a feeling if I don’t go he will use it as a get-out-of-a-bad-grade card in the future, he’s smartly annoying like that. I should go while he still wants me around and is still proud that I am his mommy. For I know the days of “mom’s coolness” is dwindling away. And it has nothing to do with my handicap.
P.S. if you subscribe to my blog, you’ll receive my ebook, “My Walker and Other Glamorous Accessories,” Over 8 sold. Your email address will never be sold, abused, or used as ante in a high stakes poker game.
This will be one of CripClassified’s FAQs. People often wonder how I got cerebral palsy. In the famous words of Lady Gaga, baby I was born this way. Although I was not hatched from an egg on the red carpet, that would have been much more spectacular. I’m sure there is a better medical explanation, but here is my spin. Which you probably won’t be using as a reference, any medical definition that shares a pop star’s song in the same paragraph seems a little questionable.
I think I was in such a hurry to enter this world, I didn’t read the birthing manual. I decided I should be born feet first, maybe thinking I would get a head start on life. Looking back I now realize I should have at least glanced at the “quick birthing start glossy diagram”. It seems that perhaps newborns need oxygen for their little brains to develop. Oops. You’d think after my tragic mistake I’d be better at following instruction, but upon a quick reflection of my life, not so much.
Medically speaking, the lack of oxygen effective my speech, coordination, and balance. I also have a weirdly sensitive startle reflex. This sadly brings my husband and son much glee. They enjoy sneaking up behind me, yelling boo. Truthfully, they don’t even have to yell. Sneak up, just say hi in a normal tone and I hit the ceiling, leaving a trail of laughter. I thought about banning air horns and other obnoxious noise makers in my house but that only encourages them. Because I have a complicated, multifaceted, personality, I thought you might find it interesting that fireworks and bubblewrap are two of my favorite things. With ear plugs and head-phone type ears protectors, (yes, I prefer using both) I barely jump. Really.
The coordination and balance thing sucks but I guess because I was born like this, I don’t generally notice. I just do the way I do and usually it does. There was a significant shift in my hips a while back. The end result was that I had to transition from using a walker to a wheelchair. I resisted for a long time out of fear of perception but my hubby finally talked me into it. He said it was out of self preservation. I had a continuous bruised knee, and they always blame the “norm” husband. I think he probably curses the day I got my electric chair. I’m a bitch at malls, vacations, and long walks in the park. “My batteries are still full, stop being a wuzz.” As it turns out, electric wheelchairs, best invention ever.
From appearances, because between the slobber and my twisted left arm, my handicap is very obvious. But you may be surprise to know I think my biggest obstacle is my speech impairment. It’s why most waiters won’t talk to me. Although I’ve come to sorta pity them because my friends usually mess with them. Like “No, I actually cannot read HER mind, let’s ask what SHE would like.” Gotta love my friends. It’s why doctors never talk directly to me. And without getting on my soap box, it’s probably why I’ll never work in corporate America again. I actually did, fresh out of college, but I started as an intern, and let’s face it, to know me is to love me. That is, until you really, really know me, then my annoying, sarcastic, tendencies shatters my adorable, inspirational façade. Now that I think about it, my old man hasn’t called me adorable in a decade. Weird.
There ya go, my Cerebral Palsy in 550 words or less. Sometimes it sucks, especially when it comes to the job search. I know my hubby was trying to be supportive last week when he said “You’re not alone, 500 rocket scientists got laid off and have to look for jobs too.” Isn’t there a joke like 500 rocket scientists and a Crip liberal arts major with a emphasis in creative writing apply for a job… Upon reflection, it’s amazing I’m not a drinker. Until next week please post any questions you have and/or column ideas. Except of course, what were you thinking? Creative writing? Aren’t you from a hard science family? Yes I am and If I could, I’d kick myself every day, but the last time I tried, I fell forward, almost breaking my nose.
P.S. if you subscribe to my blog, you’ll receive my ebook, “My Walker and Other Glamorous Accessories,” Over 8 sold. Your email address will never be sold, abused, or used as ante in a high stakes poker game.
Welcome back to CripClassified. My blog is about living, laughing and most of the time loving life with my wacky physical disability, cerebral palsy. Hopefully this blog will educate, defunk myths about disabilities, and most importantly make you laugh.
Before we get to this week’s blog, the masses have been demanding to know my blogging schedule. Ok, the “masses” may be a little exaggerated. My two friends who I play scrabble with would like me to commit to writing this blog daily so I’ll stop bugging them to play. After much consideration I have decided to publish once a week to begin with. Honestly, just between us, I’m not interesting enough to have a daily blog. I’m obsessed with finding a job before I turn 41 and perpetually puzzled as to why my extremely intelligent 12 year old son is constantly looking for his shoes. That’s about all I have on my mind. Although those will surely be topics of future blogs, we really don’t need daily updates of my job situation. So every Thursday, rain or shine I’ll publish a new blog. And maybe on the occasional Tuesday if someone has a good suggestion that my muse can run wild with. Now, on with the blog.
I thought it might be fun to research some of the myths going around about us folks with physical disabilities. I found an excellent article about this at http://www.easterseals.com and took my favorite five. Here they are: Myth 1: We are heroic and courageous. Myth 2: We are chronically ill or sickly. Myth 3: We are more comfortable with “our own kind.” Myth 4: It is all right for “norms” to park in accessible parking spaces, if only for a few minutes. And myth 5: We want a lot of help. Let’s dissect each of these myths. Please keep in mind I am very self deprecating with a weird outlook on life. So like if you are going to meet your future mother-in-law who is in a wheelchair, think, what would that crazy Claire with cerebral palsy say, do the exact opposite, and you’ll do fine.
Myth #1 about living with a disability like cerebral palsy: I am Wonderwoman, just because I have physical disability. Truthfully I’d loved to be because living with a magic lasso would be cool. I could tie up my husband, never letting him play with that stupid video game again. Sorry, I digress. Seriously, why are people with cerebal palsy seen as courageous? If you ever seen me try to wait in line for a rollercoaster, big chicken. I think they let me stop trying the 3rd time I wet myself. I never understood this stereotype.
I’m trying to think about how my friends would describe living me. I think, hands down, it would be annoying and stubborn. My girls might say persistent because they are nicer but yeah, never been called heroic and/or courageous. In a later blog I will get up on my little soap box and explain why the worse thing you can ever call me is “Inspirational”, and trust me, I’ve been called every name in the book.
Myth #2 – about living with a disability like cerebral palsy: I’m always sick. Unless you’re counting sick thoughts I’m healthier then a horse, a saying I never really understood. And when my husband uses it about me, it’s borderline offensive, I suddenly feel like I’m a herd animal. My philosophy is if advil can’t cure it, it will eventually go away on its own. I’m not proud of this fact but on the rare occasion that I am on antibiotics, there are always some left over. It’s not my fault, I inherited this from my mom, if you feel better, you’re cured. Silly idea, finish all your medicine. I’m in deep ka-ka if I had to take meds everyday. In this way, I know how lucky I am to be living with a physical disability without too many health problems.
Myth #3 – about living with a disability like cerebral palsy: We with cerebral palsy are more comfortable living with “our own kind.” I have to admit, this one is true. Even though I have a husband, and a son, I have to say they are weird. They would rather slip on a plastic grocery bag then pick it up. They laugh at purposely self-made body sounds… Males are just yucky. Oh, oh, I just reread the article, the myth was “norms” vs. “disabled”. Sorry. Never mind.
In my opinion, I think we gravitate to the group we fit in with. I was thinking of my husband and his friends. Met at different times, one at word, one through a group, ect. But I always tease that they are the evil trio. Even though they were raised in different parts of the country, with varied backgrounds, all three are computer nerds, enjoy RPG’s, share very similar views and worse, all very annoying while playing board games. In high school and college I just gravitated to friends with common interests. Because there were very few kids with disabilities at my high school and college, as an adult, I admit I don’t have that many friends with disabilities. But it was not a conscious decision. So my theory is as long as you fit in somewhere. And hopefully we with disabilities do not discriminate. Norms can be entertaining.
Myth 4 about living with a disability like cerebral palsy: It is all right for “norms” to park in accessible parking spaces. In the future, I will dedicate a blog to this subject. Hopefully not about how my hubby got his ass kicked for asking a biker dude to move his bike from the “striped” area. It’s a rational fear because my husband is a bit outspoken about people who park illegally. Me, I got bigger fish to fry but just don’t do it. It’s rude, inconsiderate and oh yeah, illegal.
Myth 5 about living with a disability like cerebral palsy: We always want help. If you ask my son, does your mommy need a lot of help, he would probably say yes. But that’s because he’s 12 and he draws everything painfully out. But in reality, as a severely disabled woman, I don’t think I really need that much help. Maybe 10 minutes a day of “weird” stuff, like pouring my day’s milk. And maybe 20 minutes of light housework split between hubby and son. Oh not because I’m handicapped, because I’m just cruel and lazy.
I hope this defunked a few of the popular Myths about living with physical disabilities, but I probably just made the waters murkier… and I’m kinda proud of that. Maybe next week I’ll do a few more. That’s me, here to inform a little and entertain a lot.
A very young almost 41-year-old seeks… I donno. Welcome to TheCripClassified. I am seeking so many things from the world, I needed my very own classified section, so I guess the first thing I ought to do is finish my ad.
A very young 40-year-old seeks the extra push over the hill so she can speed gleefully into mid-life. See the problem is I think I’m at the top, looking over a beautiful horizon. But I’m stuck. I mean it, I’m in a wheelchair and I do believe one of my wheels is stuck in quicksand. If I do nothing I just sit, and if I speed up, I usually make things worse.
All my life, I just wanted equal opportunity in love, life, and employment, not pity. But the more I think about it, if pity gets me a dream job, I guess I can swallow my pride, maybe I’ve never gave pity a chance to prove itself to me. I always say I have an open mind, let’s try the pity thing.
I never know when to tell people this. I have cerebral palsy. Raise your hand if you did the pity nod. I know most of you did. For 35 years I’ve been telling people it’s no big deal, but it is. I have no love, no friends, children think I’m a crazy freak, and I’m unemployed.
Any pitiful reactions? Anyone? Anyone? Never mind, I was just trying out the pity thing. And it really didn’t do anything for me so let’s put pity back in the bottle. Unless, that is, you’re an employer who was going to hire me. Then it’s all true. I have no love or friends currently in my empty house, and children do think I’m crazy, especially my very own.
I guess I should take cerebral palsy out of the equation for a second and do a full disclosure, but it’s so less-pitiful when things are put in black and white. I’ve been married for 15 years to a most wonderful man. If you see us in public, I’m sure you’ll do that pity nod thing and think what a saint he is for marrying me. He always gets the question “Was she like ‘that’ when you got married.” He has never really told me his answer but I assume its “No, every year she gets bitchier.” In that regard, he is a saint, just not for the-elephant-in-the-room reason.
We have a kid. Planned, wanted, and had fun making, cuz you know you were wondering. So far, he doesn’t show any signs of being traumatized from having a mom with CP, although while most folks save for college, I have a “therapy jar”.
As for the friends, where would be the pity in saying “I have the most fabulous, loyal, gorgeous, intelligent set of friends.” Honestly and without a doubt I do. Most of them are from college, and I’ve been lucky enough to pick up a few more along the way. I thought my ability to keep such great friends was one of my greatest achievements, until I read a theory that every hot group has one “homely friend” so I mentally ran through the list, not Pam, not Julie, Not Lin… It must be… CRAP.
Even with all this going for me, I can’t seem to get pass this bump. I think the cp makes the mid-life crisis worse because I think how much more awesome would I be if I wasn’t stuck in this broken body. One of my guy best friends and my husband always tell me that if I wasn’t disabled, I’d be a rich successful gorgeous stuck-up lawyer who would have never gave them the time of day. And the downside is? Clearly they need to work on their pep talks…
I guess I should finish my classified ad, “A very young 40-year-old blessed cp middle age chick in search of the tiny missing piece of happiness to get over the bump.”
Serious stuff: I’m hoping that through this blog I can educate, inform, and entertain. If you have any questions about living with a disability, please ask. If I don’t know, I’ll make it up.
TheCripClassified 