The Smell of Bone

Bone dust has a very distinct and instantly recognizable smell.  Especially when it happens to be your own.  It’s a smell nobody would want to grow accustomed to yet it is as familiar to me as grandma’s sugar cookies or my mother’s body lotion.  Needless to say, it does not invoke the same feelings of comfort and home as the aforementioned.

My first surgical experience came at age 18, a remarkably old age for someone born with the bone-decimating juvenile rheumatoid arthritis.  By the time we scheduled the surgery, my knee joint was gone and my leg was permanently locked at a 10 degree angle.  My tib fib had managed to burrow itself up inside my femur like a squirrel preparing for winter.  I’d asked my surgeon  if I could keep the joint so I could put it on my curio shelf with all my other knick knacks.

“That’s not really the way it works,” he laughed, “You’d pretty much end up with a jar of pink dust.”

“Bone dust!” I thought,  “I wonder if it’s anything like pixie dust!”

It’s not.

It was during that first surgery that I learned my lack of chin was more than just an inherited trait from my father’s British ancestors.  My lower jaw, due to the JRA present during my formative years, had failed to form correctly and it was now blocking my airway making intubation all but impossible.

This surgery and the 12 surgeries that would subsequently follow would have to be done under local anesthesia, also known as a spinal.  Essentially I would be paralyzed from the waist down but quite alert from the shoulders up.  My anesthesiologist assured me he could keep me asleep and unaware of what was happening to and around me.  It didn’t work.

I popped awake to the sound of heavy construction; carpentry saws, impact drills, the sound of a sledge hammer against metal.  I started singing “I’ve Been Working on the Railroad.”

“Why are you awake?” the anesthesiologist squealed, crawling back in to his skin.  He turned up the gas and held the mask a little more firmly against my face.

“I just wanted to know what they were doing.  What’s that clanging?  Is that me?  I wanna see!”

“Go to sleep!” he insisted, “Everything’s fine.”

That was when I first smelled it; a mixture of wet chalk, the faint but distinct iron tang of blood, and the smoky scent of flint struck but no fire.  Bone dust.  My bone dust.  At the time the smell was intriguing something new and strangely intimate.  22 years, 7 joint replacements, 2 hardware removals, 2 “orthopedic D and Cs” (for lack of a better term) and a uterine cyst removal later, the smell is not so benign.  It has come to haunt me and not in that Casper-the-Friendly-Ghost kind of way.  No, I’m thinking a more Linda Blair kinda thing here.  It grabs me by the throat, throws me against the walls and yes, frequently results in projectile vomiting.

This fiendish smell snuck in on me today out of nowhere, curling up out of my honey nut cheerios.  Before the smell could take over, I ripped my entire sage plant out by its roots and torched it shouting “DEMON’S OUT!”

And here I sit, hiding in the sweet cleansing cloud of smudge smoke waiting for the malignant spirit to depart.  At least this time I didn’t run Febreeze through my neti pot to abolish the smell.

Matchstick Theory

The first time I read Spoon Theory, like many others, I was inspired. As a woman who has dealt my entire life with chronic pain what grabbed my attention first was the friendship between Christine Miserandino and her friend. In any true friendship one doesn’t just share the joys and pleasures of life. One seeks to share in the pain, to understand it, and if possible to help hold that pain for the other.
Christine had this kind of friend. A friend that knew her inside and out, had earned the right to ask “what does it feel like to be you.” I have that kind of friendship with my girlfriend Dia. She knows me inside and out. The first one to visit me in the recovery room after surgery. The one that comes over and massages me on days when my arthritis is so flared I can’t move. Hell, she even flew all way home from Texas for one of my surgeries and then planted pink flamingoes in my yard as a welcome home surprise before she left. Dia, like Christine’s anonymous friend, has earned the right to ask “What does it feel like to be you?” and expect a full and honest answer. I fully believe that everyone should feel free and easy to seek knowledge about another’s life experience and asking questions is a great way to do that. However, I also whole heartedly believe that one has to earn the answer to that question.

And that is where I have a problem with Spoon Theory. Suddenly the whole world thinks they know what it’s like to be me. Except you don’t. Now we have all these dickheads running around handing out spoons, embroidering them on samplers and asking me in a condescending way “how are your spoons today?” I’ve grown so tired of spoons I’ve started eating my Lucky Charms with a fork.
Look, Spoon Theory is great and has inspired many of us, given us a safe, friendly, non-confrontational story to share with the people we love and who are also there for us every day. The good days and the bad. The happy times and the bat shit crazy times. Forgive me for saying this, but the rest of you don’t deserve a nice, safe, friendly and non-confrontational story. For those of you that have never suffered (or suffered with someone who had) chronic pain, I give you Match Theory.

Imagine waking up each morning with one fresh pack of matches.
Get out of bed? Strike a match.
Watch it burn.
Will it burn long enough to make it down the hall to the Bathroom? Most Mornings? No. It will not.

Strike another match.

See I can get a lot of use out of a spoon. Most people can and do. That’s why the spoon analogy doesn’t work for me. I’ll use it to stir my coffee, eat my fruity pebbles and then grab out of the sink later to eat a whole tub of cookie dough. But a match? A match is a one-use item and it’s time is finite. Like my body and it’s go juice.

Sometimes the unexpected happens. Strike a match? It breaks mid strike.

Somebody with no placard has taken the last handicapped spot in the lot. The snow plow cleared the parking lot but left all the snow piled up in the handicapped access, leaving no clear egress to the sidewalk.

Some mornings you wake up with a full pack of matches but some rat bastard has ripped off the striker. You’re not going anywhere today. This is what we call a flare up. The disease has your body in a vice and you probably couldn’t strike a match if you tried. There are many reasons for a flare. It could be a sudden shift in the barometric pressure; that late-night freak snowstorm the weatherman forgot to mention. It could be stress. Your boss has warned you that project must be on her desk by end of day yesterday. Or it might just be that deep-fried pizza you ate all by yourself last night.

Then come the mornings where you wake up to the smell of sulfur. That last spark from last night’s last match has landed on today’s matches and incinerated them. You’ve overdone it again. Held the match for too long. Let it burn down til your fingers blister. It’s your best friend’s wedding and by god you’ll burn every last match down to ash to be there for her. Or it’s that early morning phone call. Your father’s in the hospital again and you need to fly out today to get to him.

But here’s the other thing Spoon Theory doesn’t address to the chronic pain uninitiated. Whether it is the stranger on the street or a government agency, these individuals frequently make overarching generalizations of an individuals overall health, ability and needs based on a snapshot moment in time. They think these spoons are gifts to be used sparingly and responsibly. Some may even feel entitled to prescribe how one’s spoons should be allocated. Particularly if the cripple in question is on disability. Here’s where Match Theory gets bad-ass.

These are my goddam matches.
I decide when and where to light them and how long to let them fucking burn.
End of fucking story.
So, you saw the girl who parked in handicapped parking tearing it up on the dance floor. That’s her business. Not yours. She may be burning five fucking matches at once and the instant the music shuts off maybe she will too. Those few short feet to her car may be the most painful of the night. But they will have been worth it. She needed the dance. Needed to feel alive. Needed to move. Tomorrow she’ll lie in bed like the tin man, a scorch mark on the night stand next to her but tonight she forgot the pain, forgot the doctors, the drugs and the disfigurements. Tonight she lived.

To learn more about Spoon Theory, please visit Christine Miserandino’s original piece on “But You Don’t Look Sick”.

The Spoon Theory written by Christine Miserandino

https://en.wikipedia.org/wiki/Spoon_theory
The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from disability or chronic illness. Spoons are an intangible unit of measurement used to track how much energy a person has throughout a given day.

Bringing Sexy Back

As a young, disabled woman living in the United States of Impossible Beauty Standards, it can be difficult to feel sexy.  As a marginalized group, we are most likely the most under represented group in the media. Sure, we have Marley Matlin, that one chick from Facts of Life, and all those Down Syndrome girls Ryan Murphy keeps casting to play bitchy little mean girls as a reverse bully fantasy for all of us who were ever called cripple, gimp, retard, or my personal favorite, “leper”.  (Kids are fucking idiots). Four decades and we’ve had only a handful of role models?  What gives?!  Granted, there have been a some attempts to normalize females with disabilities with shows like Push Girls, which features strong independent women with disabilities.  One caveat?  To be on the show you MUST be ridiculously thin, and sexy.  Then we have the plethora of examples of inspiration porn where we see stories of a disabled woman, usually played by an able-bodied actress, overcoming her pathetic disability and leading a successful life wherein she is accepted as worthy of coming out of the house.  “Good for you for getting out of bed today.  You are a true inspiration!”  But again these are all stories that focus on the disability at the expense of the person.

I challenge you, think of a single show portraying a WOMAN with an ACTUAL physically evident disability wherein the disability isn’t the main focus of the show.  Can’t do it?  That’s because we aren’t there.  Like Sasquatch, we might be there but nobody has actual photographic evidence.

Hell, even in medication and health care ads targeted to our demographic, we don’t see disability and deformity portrayed.  Example:  a woman in full makeup and lusciously coiffed hair sits on the side of her bed, a pained but ethereal look on her face.  She gracefully extends a ballerina thin arm to the bottle on her night stand.  With long, thin fingers she dexterously opens the child proof bottle. Cut to the beach scene:  same woman runs along the beach with her dog.  Cut to: dancing salsa with her husband. Cut to: climbing Mt. Kilamanjaro.

It’s ridiculous!  Here’s the ad I want to see:

Shriveled up little lump of pain rocks back and forth in bed until finally able to throw legs overboard to upright herself.  Hobbles into the bathroom like the tin man searching for his oil can.  After running ham hock hands under scalding hot water for five minutes manages to grasp bottle with gnarled fingers.  Slams bottle against counter until cap comes off spilling contents onto the counter.  Snuffles up pills with her tongue like an aardvark going after termites.

Cut to elegantly dressed woman sipping cocktails with her girlfriends at the all-male review.  Those same gnarled and permanently deformed fingers now deftly tuck a bill into a stripper’s G-string as he winks at her.  I mean fuck that running on the beach bullshit! That shit is bad for your health.

Go with a Gimp: Your Handy Travel Specialist

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I’m thinking of starting a new travel service.  It will be called “Go With a Gimp”. For the low, low, price of paying my way, I will accompany you on your vacations.  In exchange, you will be able to cut directly to the front of the security line, board the plane before even those rich, self-entitled first class passengers and, in some cases, upgrade to the extra leg room seats with no additional charge.

Once at our destination you will be treated to the best in primo parking. After all, those handicapped stalls are reserved for the truly VIP individuals. Whether your dream vacation is to ride every ride at Disneyland twice or visit every major landmark attraction in NYC in a single day, your goals will be realized with our special cut-to-the-front-of-the-line pass

This service is not available to everyone.  A strict screening process will be put in place to ensure only the finest candidates may utilize this service.  The following conditions will immediately disqualify candidates from participation in this program:

1.       Candidate is a rich, self-entitled asshole who resents the fact that the disabled get all the “primo parking spots”.

2.       Candidates who believe it is unfair that disabled people have these services provided for them.

3.       Film producers who hire able-bodied actors to play disabled characters because they don’t want to deal with ADA accommodations.  Seriously folks! Black face is now considered an abomination.  Why is “cripple body” tolerated?

4.       Film producers who treat Latinos, Middle Easterners, Asians, Polynesians and Native Americans as one big interchangeable culture.  This really has nothing to do with disability.  I just think these people are dicks and I don’t want to vacation with them.

5.       Republicans – especially the ones who vote for the repeal of ADA.  (Ahem, Mr. Trump.  How many times did you violate ADA accomodations in your own buildings?)

6.       Any religious zealot mother fucker who wants to tell me my disability is (a) a punishment for sins committed by me, my family, my past life self, or “the gays”, (b) part of God’s “special plan” for me, (c) God’s test.  Really only atheists and Episcopalians need apply.  Oh and no Mormons or Muslims ‘cuz I like to flash my boobs on Splash Mountain and I know you people don’t like that.

Interested parties may submit a letter of intent, along with a travel proposal in the comments section below.  Our customer service agent will contact you with application instructions.  Please be advised, candidates selected for the “Go With a Gimp” travel program may be required to carry my bag.

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How to Go to the Bathroom without Being a Total Dick About It

Dear Asshole Toilet-Squatting Women,

Stop it!

Seriously!

It is high time for you grown ass women to just knock this shit off and take a seat.  There are no hungry sewer alligators lurking in toilet bowls.  Especially if, like me, you live in Utah.  We don’t even have any alligators here.  Unless you count the two in the zoo (or is it three….hmmmm.)  Come to think of it, we don’t have much of a sewer system to sustain much reptilian life.  Certainly not the palatial subterranean water works commonly featured in Ron Perlman vehicles (Hell Boy, Beauty and the Beast, City of Lost Children.)  Your juicy buttocks are safe from repto-amphibious attacks from the deep.

Sewer AlligatorsAnd contrary to what our incompetent school sex ed curricula may lead you to believe, you cannot get pregnant from a toilet seat.  If you could, we would have heard about it by now from Wendy Williams.  Plus, Maury Povich’s baby daddy episodes would be much less mundane.  “Carissa, in the case of baby Xstaci, the second stall toilet at the Wendy’s bathroom inside the Cheyenne Chevron IS your baby’s daddy.”

On a similar note, the CDC has issued precisely zero alerts on the catastrophic rates of toilet herpes.  That is because herpes germs are wimps and their survival on the rim of a toilet bowl is about as likely as a naked Neil Armstrong’s chances on the moon.  Besides, the level of intimacy you and said toilet seat would achieve before you’d need to check in for an STD test does not bear consideration.  If that is the fetish you’re in to, keep it between yourself and the duke of dookie.

So what is it then that keeps you from sitting the fuck down and using the goddam toilet like the rest of us?  Is your ass so special that it must only touch virgin porcelain?  Have you had it’s flesh surgically replaced with leather fashioned from the ears of two-day old albino lambs?  Is your derriere by Cartier?  Just sit the fuck down!

Or if you insist on squatting, at least do what most 5 year old boys have already mastered and lift the Christing toilet seat.  I’m not concerned about you remembering to put the seat back down, trust me.  That’s just a dick move men do to remind us that the goals of feminism have not yet been realized.

So my final plea to my squatting sisters is to entreat you, if squat you must, could you at least not squat in the handicapped stall?  It’s a real slap in the face and a fine fuck you too for those of us unsquatables.  You’re so concerned about your own silk-lined backside, have you failed to realize that the rest of us don’t consider it a treat to sit down in your backsplash.  Never yet have I seen the golden backsplash of even the saintliest of urine streams cure so much as a hang nail let alone heal  the paraquats or feeble-limbed.  No good can come of your failure to simply wipe the fucking seat off.  Save the miracles for church, not the public restroom of the local megaplex.  I always have to pee after a two hour movie and my artificial knees and hips can’t take squatting without going down like the bridge over the River Kwai.  And when that inevitable fall comes, I don’t need to splash down in your leftovers.

Respectfully,

The cripple with your pee all over her ass.

 

These Are a Few of the Best Fucking Things Ever

It’s on obscenely cold, gray days like this that I like to take a nice chilly, deep breath in and take stock of all the nice little modern conveniences that make life bearable.  Things like central heating, fleece lined leggings, and maple and brown sugar oatmeal packets.

If you have never stopped to think about the joy that is central heating, congratulations!  For one has never known true suffering until one has opened one’s fridge only to  be blasted with what feels like a gust of warm air.  Yes, when one’s milk and Lunchables are cozier than one’s own self one can only surmise the slumlord has turned off the furnace again.  Such was the case with the first apartment my husband and I shared.  In an effort to save money, our landlord would simply turn off the furnace and then insist it was broken and he was waiting for a part to ship.  With all four burners of our gas range at full bore and the oven set to 750 degrees Kelvin we called the slumlord to report if the “part” didn’t arrive soon we’d be taking a page from Tom Waits’s album and tear up the floorboards in the living room to cook us up a box-spring hog.  Within an hour the furnace was miraculously fixed.

Sadly, these early days of discomfort predated the arrival of my second favorite cold-weather comfort, fleece lined leggings.  Legging technology has made more advances in the past three decades than the NASA space program.  Recently, I found my old 80s leggings and having put them on quickly remembered why I had stopped wearing leggings for two decades.  Made of a strange combination of poly-cotton blend and unyielding spandex, these leggings glide on with the ease of chain-mail over fish scales.  After an hour the spandex usually decides to go out for a smoke break leaving the crotch sagging down to the kneecap in a grand mpdanceimpression of Dick Van Dyke’s penguin dance from Mary Poppins.  Now I understand why Batman and Superman always wore their undies OVER their poorly made leggings.  Today’s leggings, however, seem to be made of the same stuff as Rebecca Romijn (no-longer Stamos)’s Mystique costume from X Men.  AND they now come LINED WITH FLEECE!  If you have never enjoyed the sensual caress of body-hugging fleecy leggings…well you are probably a very hairy man that hates the way it tugs at your leg hair like velcro.  Either that or you are one of those self-righteous busy bodies who don’t think leggings are pants.  Guess what?  They are, by definition, pants.  Check your sources and then deal with your irrational fear of the female body cuz you are missing out on the singular best piece of women’s fashion ever created!

But perhaps the best ever modern day cold-weather convenience out there is the maple and brown sugar instant oatmeal packet.  Anyone who hates mornings as much as I do but still feels the need to oh I don’t know….EAT understands the appeal of instant oatmeal.  For those of you uninitiated, I share the following recipe.  You will want to start this the night before to save on prep work and clean up and give you those extra 30 seconds in bed tomorrow morning.  The cat will thank you.

  • Pour contents of one packet maple/brown sugar instant oatmeal into travel mug.
    • I recommend a travel mug that has not gone through the dishwasher as this causes the vacuum seal to break leading to chunky leaks.
  • Throw away packet.
  • Let sit overnight
  • In the morning, add 1/3 cup  hot coffee to dry ingredients. (that’s more than the instructions call for)
  • Shake like hell.  This is where you are really going to test that vacuum seal.

And viola!!  A delicious oatmeal maple latte!

“But Psarah,” you ask, “can’t I use apple cinnamon or cinnamon raisin?”

My answer is a resounding fuck NO!

  • Apples and raisins taste fucking terrible in coffee.  (Jesus, people!  Standards!)
  • Choking hazard.
  • I find they clog up my crazy straw.  As I usually drink this on my way in to work, I find a crazy straw to be a necessary safety precaution.  Hands at 10 and 2 people!  Not 12 and coffee cup!  Save a life.  Invest in a crazy straw.

Add this delicious recipe to your morning routine and tell me it doesn’t put an extra pep in your step.  After all, breakfast is the most important meal of the day.  Start treating yourself right and take those extra 30 seconds to optimum health.  You’ll be glad you did.

Mad Max: Flurry Road

Ah snow days! As a student, I cherished them. As a teacher, I begged for them. Now, as the Artist Formerly Known as Teacher, I decide when to take a snow day. And as a rational and responsible adult I hereby declare today a snow day. As I sit in my cozy nook scrolling through Facebook posts, I take note of the average two- hour morning commutes and road closures funneling these brave road warriors onto increasingly diminishing roadways.

In the midst of this automotive apocalypse emerges the yellow menace.  School buses packed with screaming, careening youth that make George Miller’s war boys look like the Vienna Boys’ Choir. Yet school districts insist on dispatching these war rigs onto already chaotic and dangerous roadways. Granted, most bus drivers could give the Road Warrior a lesson in post-apocalyptic driving conditions. Put Max Rockatansky behind the wheel of one of these child transport vehicles and he’d flip-spin it off the nearest cliff.

But child safety is not my main gripe with Utah’s refusal to declare a snow day. Indeed, most districts pride themselves on their accident-free records. No the true threat to our children is the horrors of a childhood devoid of the joys of a snow day. One district even prides itself on having gone six decades without a snow day! That is three generations of deprived children. There are consequences for this level of neglect. Where would architecture be without the training gained from building snow forts? And yes folks, it takes a good 8 hours to build a truly palatial snow fort. Would we have the world’s strongest military without the marksmanship garnered from neighborhood snow ball fights? What of our calligraphers? Would your wedding invitations have been as elegant had these artists not perfected their dexterity by writing their names in the snow? And now with the invention of the female urination device (which I have nicknamed the weenis) girls too can enjoy this right of passage. Score one for feminism!

Yes, it is time to do right by our children.  It is time to demand a snow day. Don’t our children deserve a day of unsupervised mayhem? Besides, it sure would help clear up the roads.

mad-max-fury-road1

Thanks to Shannon Barnson for his commentary on Utah’s traffic update.

Don’t wanna. Can’t make me.

One thing I really like about my blog program is that it understands me in ways so few people do.  Like whenever it’s thinking about whether or not to let me post something, it says Beep Beep Boop.  Man, it really cheers me up when it does that which is good because I’ve been in a pretty dark mood lately.  That may explain why I haven’t posted for a couple weeks.  It’s just too hard when you wake up to grey skies and are actually expected to write in a room with absolutely no mood lighting.  Outside the window, the set decorator for Wizard of Oz Act I Scene 1 has been hard at work and I have two choices:

overhead oncant-write-2 or  Can't writeoverhead off.  Bleak.

Nobody should be expected to work under these conditions.  There is also a strange smell in here and I am honestly not sure if it is the cat’s butt or mine.  I did just have Crown Burger for lunch but then so did the cat.  Shit.  That reminds me.  I need to put the leftovers in the fridge.  Where was I?  Doesn’t matter.  Where’s the cat?  A much more pertinent question.  The smell is gone so there’s ONE mystery solved.  The anti-anxiety drugs seem to be helping, not me, the cat.  The kitty klonapin seems to really be helping.  Mingus has been much more sociable these days so he may be on Snapchat.  It can be hard for a cat of his advanced age to connect.  Especially since we keep his cat door closed now.  He was inviting entirely too many racoons over for dinner.  Did you know spellcheck cannot come to a consensus on the spelling of raccoons plural?  It only acknowledges racoon singular which means there is only one raccoon on the planet and he is involved in an elaborate hoax to convince us all otherwise.  I just wish he’d leave my fucking cat alone!

The impending storm is suggesting that I get away from electrical devices before it shows up so I will leave you with a fun Holiday game! Find the differences in the two pictures below! The winner that successfully finds them all and lets me know in the comments section of this blog could win a Grow Your Own Zombie Hand that has already been grown!!!

Image 1

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Image 2

Can't write

Falling Down at Red Rocks: one incident, many perspectives.

“This chic, like, totally biffed it on the stairs tonight at Red Rocks.  It was so funny!  Her glasses flew off her drunk head and everything!  ‘Here sweetie,’ I called to her. ‘ Don’t forget these.’  LOL!”

“This fucking guy got in my way tonight at Red Rocks.  He was holding this slow ass chic’s hand.  I pushed past his ass to get the the bathroom before them.  Not gonna be waiting behind those two!  Fuck that shit!  As I ran past, this drunk ass cooze fell on her ass.  Good!  Serves her right for holding up traffic!”

“Another drunk fell in the stairs tonight at Red Rocks tonight.  Glad it wasn’t in MY section!  Ain’t my section, ain’t my problem.”

“Some drunk just fell in my section tonight at Red Rocks tonight and then proceeded to sit her happy ass down in the VIP section! Nu uh, chica!  Not on my watch!  Who the hell does she think she is!”

These remarks are what I imagine are the responses I get from people whenever I fall, which is entirely too frequently.  That’s not quite true.  These are not the reactions I get when I fall on the street, in the grocery store, at work.  In situations where it is acceptable to be “handicapped.”  At the bar, a club, a concert, it is a different story.  In these venues, cripples need not apply.  After all, we should be in bed resting up and taking care of our poor little selves.  Furthermore, if we can’t even make it in to the grocery store without taking up all the “primo parking spots” what makes us think we have the right to expend our precious energy on having fun?  I mean, surely we aren’t even CAPABLE of dancing, are we?

Sadly, the reason it is rare to see one of us gimps out in society is that for many of us, we have given in to the fear.  Fear of falling.  Fear of being jostled, or bumped.  Fear of being mocked, derided, misunderstood or ignored.  And, ironically, fear of not being able to find a parking space.  It seems that after midnight, like Cinderella’s coach, handicapped spots turn into VIP parking.

I believe the greatest fear, that has even begun to crush my own exuberant vitality, if the fear of how we will be treated IF something goes wrong.  After all, following my fall at Red Rocks, not one person came to my assistance.  Instead they saw a crazy drunk girl because that was what their assumptions told them this was.  A cripple out for a night of fun was not part of their perceived societal norm so they were incapable of seeing it.  Granted, I did get the attention of the security guards AFTER I sat down in the VIP section.  But they were unwilling to call for assistance even after being told repeatedly that I was disabled.  Their reason?  I wasn’t injured and since the assumption had already been made that I was drunk*, my rights to assistance had been nullified.

My right to expect assistance should not be conditional.  As a fiercely independent disabled person, I find it difficult to ask for help.  But when I do, I don’t expect a second party to determine the validity of my request, nor should it depend on my level of sobriety or cheerfulness.

*On a sidenote, I was not in fact drunk.  At the point when I fell, we had only been at Red Rocks for a half hour.  I had had exactly 1/3 of a vodka lemonade that I shared with my brother and husband.

Finding T Rex: Thoughts on Deformities

I was at a one year old’s birthday party when it happened; a moment of perfect truth.  She’d been watching me since my husband and I had arrived at the party.  She couldn’t have been more than four or five and had the natural inquisitiveness that comes with children of that age.  She slowly sidled closer and closer until…

“Hi!” I said.

“You look like a T Rex,” she replied.

My eyes lit up and a smile spread across my face.

“You’re right!” I said. “But can you tell me why I look like a T Rex?”

“It’s your arms,” was her confident reply.  “They’re like this.”  She quickly mimicked the sharp angles at my wrists and elbows.

“That’s a very good T Rex!” I said and with a roar we took off into a full scale dinosaur battle.

For the rest of the night she studied me as a biologist might study a new species.

“Catch this,” she’d say, throwing me a ball.  I’d catch it in the crook of my arms, my arthritic fingers lacking the dexterity to properly grip a ball.  She continued her experiment with a number of requests.  “Hold this glass.”  “Pick me up.”  At no point did she judge my ability or inability to perform these tasks in the “correct” manner.  She just observed HOW I did these things.  It wasn’t good.  It wasn’t bad.  It was just different.

There have been times in my life when I would not have embraced this comparison.  Growing up with arthritis, my biggest and only insecurity were my arms.  I idolized the Venus de Milo for her lack of arms and did everything I could to hide my own.

By college I had figured out I should embrace my arms and stop trying to hide them.  I found new idols in the form of squirrels, raccoons, and meerkats.  But it wasn’t until I found T Rex that I could fully relate.  T Rex was strong.  T Rex was powerful.  T Rex was king and when he got knocked down he got pissed.

I remember a time in high school when some kid tripped me to be funny.  I flipped over on my back and started kicking the shit out of him.  When someone managed to pull me away and help me up I stormed off slamming the door hard enough to shatter the glass.  Yup.  I had found my spirit guide.  T Rex and I are now bonded for life and have been for about twenty years now.

unstoppable_trex