Paper Weights and Door Stops

I don’t hate the cold weather.  My body hates the cold weather.  I can’t speak for the rest of my brothers and sisters in the O.I. community, but when the temperature drops, I’m only good for 1 of 2 things.  A paper weight or a door stop.

While I have never suffered a fractured bone in my back (If you listen that’s the sound of me knocking on wood), the cold weather makes me deal with almost constant and debilitating back spasms.  Sometimes they come on their own, and sometimes I fuel them with things like this

Yes, that’s me getting thrown off of the back of a mechanical bull.  Yes, I landed on my head.

I’d like to say that I was talked into getting on it, but as my little sister said “No one had to talk you into that.”

It’s been almost 2 weeks since that happened and the spasms have gone from my entire back, down to the lower back, and now back up to my neck and shoulders.

On a positive note, my girlfriend gives great massages.

Rob

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The Show Must Go On (aka Gaffer Tape To The Rescue)

I first got involved in the Rocky Horror Picture Show community 20 years ago yesterday, when a group of classmates and I went to see the Midnight Showing on Halloween.  We were preparing to start a production of it on our college campus and very few of us had ever seen it, let alone knew what it was.  I spent much of that night trying to participate in the experience while contemplating throwing my roll of toilet paper at my friend for recommending this absolutely horrible movie.  it would be after the movie was over and I had given it time to sink in that I came to enjoy the entire experience itself.

Fast forward 5 years and I’m living in the San Francisco Bay Area and joining The Bawdy Caste, one of the casts in the area that performs the show on a constant basis.  I was active with them for about 3 and a half years, performing a number of roles, and eventually working my way up to being a co-director of the cast.

One night, our normal Emcee called out and we couldn’t find a replacement in time.  It was decided that I would perform those duties for the night.  I figured it was simple enough.  I could get get the crowd fired up, introduce the cast, make the necessary announcements, and then finish getting into costume for my role.  Sounds easy, right?

We didn’t have a stage in this particular theatre.  We had to use the floor at the base of the projector and then would often use risers and other props to make us visible to the audience.  What better place to be to fire up the audience than running around and jumping up onto the arms of the chairs, right?  I KNOW!!!! I thought so too!!!

So there I am, standing on the arms of a chair in the front row, screaming into a microphone, when it came time for the announcements.  And it goes a little something like this (Hit it!)

Me:  And now for the announcements! (Jumping off of the arms and onto the hard, cement floor)

Audience: F*CK THE ANNOUNCEMENTS!

The Big Toe On My Right Foot: SNAPCRACKLEPOPKAHRUNCH!!!!!!

Me:  Announcement #1!!!  I just broke my toe.  Kenny, please take over (Handing the mic over to Kenny, one of our actors.)

Kenny:  Ummm… O…K…

I’m not exactly sure how it happened, but I’m guessing the toe of the sandals I was wearing went one direction and all of my weight went down on my big toe.  It was curved back in a very not so pretty way.

I limped backstage and tried to assess the situation.  I will say that if there’s anything I know how to do well, it’s setting a broken bone.  I took a few deep breaths, grabbed a hold of my toe and pulled on it until it popped.  Then I did it again and again until it stopped popping.  I called out to our Head of Tech and used his Gaffer Tape with my credit card to create a makeshift splint.  I then finished getting into my Criminologist Costume so that I could finish the show.

After all, “The Show Must Go On.”

The hardest part of the night was getting through the Time Warp.  I was wishing I could warp back in time and NOT jump off of that chair.

Rob

The Reason I Started This…

I’ve been tossing around the idea of doing this blog for about a year now.  It all spawned from this thread on Reddit.  The amount of ignorance and hatred I read throughout it was disgusting and offensive.  It wasn’t the stupid jokes that made it bad either.  While they’re immature and uncalled for, they’re also par for the course as far as Reddit is concerned.  Especially in that particular Sub-Reddit.

What angered me were the multiple comments from people that those of us with O.I. were “sick,” “broken,” and “not helping humanity evolve.”

So I thought I’d start this blog and share my stories from my life.  The decisions I’ve made, the mantras I’ve clung to, and the experiences they’ve accomplished.  Hopefully they’ll educate the ignorant and maybe even inspire someone else to try something that someone else told them they couldn’t do.

Rob

O.I. and My Family

I have Type I O.I.  I inherited it from my mother, who appears to be the first in her family to have it.  She had a total of 5 kids and passed it on to all 5 of us.  We 5, in turn, have passed it on to some, if not all, of our kids, and some of them have passed it on to some, if not all, of theirs.  Osteogenesis Imperfecta has branched out to at least 14 people across 4 generations of my family.  Not everyone has been tested yet, so that number could be as high as 21 with the potential to grow even higher.

When my mom was growing up, doctors had no idea what it was.  They thought she just had a bad combination of a Calcium deficiency and clumsiness.  It continued on through my 2 older sisters and my brother until a doctor at the University of Hawai’i at Manoa recognized the physical symptoms, like blue sclerae, and ordered the tests on all of us.  I was 2, going on 3, at the time and my oldest sister was 16.

From that point on every doctor that treated us said the same thing.

NO RUNNING!  NO JUMPING!!!  NO CONTACT SPORTS!!!!!

We listened at varying levels.  One sister played softball and was a cheerleader.  My brother played Little League Baseball but then was restricted to “Adaptive P.E.” in school.  I didn’t listen at all.  I did all the things that we’re not supposed to do.  I played baseball.  I played football.  Worst of all, I’ve trained in martial arts since I was 6 years old.

The bulk of this blog will be my stories of trying to enjoy my life like any other kid out there.  It will be about the joys I had, the pains I suffered, and how I live with Osteogenesis Imperfecta and an Unbreakable Spirit.

Rob