Meh

There's so much that I want to write about.

I used to think I was good with words, but I'm not so sure anymore.

It doesn't come as easily these days - not since September past.  The words just aren't there for me anymore.

I'm tired of all the judgmental people on social media, and in real life.

I'm tired of having to go through all the bullshit just to get a straight answer.

I'm tired of family members making me feel like I don't matter, and their actions prove I'm justified in feeling this way.

I'm tired of being made to feel somehow less because I'm disabled, when it really was just a genetic lottery...

I'm tired of the whispers and rumors that say I must be gay, because of my age, and lack of relationships....

I'm tired of feeling alone in this world.

I'm tired of being lonely.

I'm just so fucking tired of having to fight, scratch, and claw for everything.

I'm just so fucking tired.....

Well...hello...again...

Yeah, yeah, yeah.  I know.

I have't posted in forever, but why post when you don't have anything to say?

Well, I do now.

Family can really do a number on you sometimes.

I've got a cousin who I only see maybe once a year, if that.  Everyone in the family knows I have HSN, and usually, it's a non-issue.  Not this time.

While working at a local festival, this cousin comes up, looks at my feet, and tells me "your braces are too tight".  What?  And then proceeds to tell me that I "have to get the other braces."  The 'other' braces being these molded plastic braces that go under your foot, up the back of your leg, and are secured with a wide velcro strap just under your knee.  My current braces?  There's a picture of them on this post.  Those are the braces my OT recommended because I'm so active.

Anyway.  This cousin tells me that I'm being selfish, and only living for today, and that I NEED to give up doing things I love, and think about tomorrow.

Excuse me?  For anyone that doesn't know, with this disability, it's use it or lose it, and I'm not willing to lose anything else at this point.  And as for living for today, what else do you have?  Tomorrow is never promised.

The thing is, until you know, you don't know.  You can see, sympathize, but until you've actually been in the situation, you can't really understand.  I don't care how many people in the family have this particular disability, you can't know my situation.

***Tiny bit of backstory:****
I was diagnonsed 5 years ago, and got braces early.  Why do I have the braces I do?  I told my OT how active I try to be, and that I didn't want anything that was going to slow me down, or make me lose muscle mass/tone in my legs.

Fast forward 5 years - my core strength has gotten better, I'm a licensed Zumba Instructor, and I teach at LEAST 3 times a week (although, admittedley, I'm not teaching during the summer...but I swim,  go for walks, and I'm learning new routines to do when I pick my classes back up).

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I'm the most active person in my family with this damn disability....I'm doing my level best to stay that way for as long as I can.

So there.  

-CT

My Zumba Story

Hi.

My name is Cayla, and I've been doing Zumba for nearly two years now.  A couple of times out at a class, and at least once a week using the Wii.

Why is this remarkable, you might ask?  I would say that it's really not, except that I'm doing it while dealing with a disability.

I have HSN (Hereditary Sensory Neuropathy).  If you Google it, there are literally dozens upon dozens of pages that will come up in the results.  Basically, this form affects fine motor skills.  Mine was injury onset - starting with spraining my ankle.  Now, when I walk, my feet tend to drop, which can make walking difficult and tiresome.  Without my braces, I have to walk lifting my legs from the hips, which, after a few minutes, becomes really hard.

On May 2, 2011, I went to my first Zumba class.  I went, not knowing if I would be able to do it, if my feet would allow me to make it through that first hour.  (This was before I got the braces I have now).

(As you can see, my toes don't lie flat on the floor - they curl a little.  This is due to the tendons in the back of my leg getting tighter and shorter)

It was a basics class, with the first song I ever learned the choreography to being "Que Te Mueve".  I made it through that class, and was hooked.  Some songs I found nearly impossible to do, but I kept going, kept learning new steps.

After a year, I got some new braces!  They are probably the ugliest things ever, but really, I'm not complaining...much...because they do help me so much.

(They're not as complicated as they look, but they *are* that ugly.  Really)

Zumba has really been my saving grace.  It keeps me active, and that's key in keeping symptoms of this disease at bay.  Since starting Zumba, my core strength and balance has improved so much.

There are things in Zumba that I still physically cannot do. Things like pointing my toes - those heel-toe moves are brutal!  Things like heel lifts - again, because I can't stand on my toes.  Samba kicks my butt...again, because the toes thing.  I am the QUEEN of modifying moves.  They might look a little different, but it works!

Since getting those braces, I'm constantly discovering things that I can do, things that I used to do before all of this.  Things like jumping.  A simple jump out. jump in.  The first night at Zumba, I nearly cried when it was time in the choreography to do the dreaded jumping jack move, but to my complete and utter astonishment, I did it!

After two years of Zumba, I can stand in a line at a store or the bank, or at Tim Horton`s without having to shuffle (much), or having to have something to lean on.  The little things that most people take for granted.  I know I sure took it for granted before the onset of HSN.

Zumba has given me back some of the things that this disease started to take away.  My core strength has improved, and with it, my balance.

I just love Zumba so much!  I go around telling people that if I can do it, then they can too!  Disability shouldn't stand in the way of doing something that's just SO much damn fun!

If you're thinking about trying Zumba, but there's "something" holding you back, an injury, or the inability to move a certain way, please just give it a try.  Zumba is for everyone.  If there's something you can't do, don't, or modify the move so that you can.  I do it all the time.  The thing is, it's all about moving, and most importantly, having fun while you're doing it! 

Zumba is not about losing weight for me.  That's just an added bonus for me.  (Although, I have gone down a couple of sizes!)  It's about keeping myself active, and reasonably fit.  Yeah, it's a little harder for me, but I dearly love a challenge!  Tell me that I can't, and I'll do my damnedest to make you eat those words.  Someone, a couple of years ago told me that they didn't think that I'd be able to do Zumba, because of my feet.  Look at me now!

(That's me, on the right.  Yes, with the neon pink legs.  You can clearly see my braces.  This was taken at a recent Party in Pink Zumbathon. )

When I say it's for everyone, I mean everyone.  My mother, who is in a wheelchair, does Zumba.  No, she's not up doing the Meringue, or the Salsa, but she IS doing the arm movements...even if there aren't any.  She's doing arm movements for everything.  So, yeah, Zumba is for anyone and everyone.

I love it so much, that it's become a goal of mine to get certified as an instructor.

Why become an instructor?  Because 1) I think I'd be good at it, and 2) I want to show people that physical limitations shouldn't hold you back from doing something that's this awesome!

If I can inspire just one person out there....whether it be to go to a Zumba class, or just lace up their sneakers to walk to the end of their driveway and back...to not let the physical limitations get in way of being physically active, then job well done.

******UPDATE******

I really should have done this sooner - but I'll be honest.  I forgot.  Repeatedly.

As of November 1st, 2014, I officially became a ZIN member.  That's right!  I got licensed to teach Zumba!  And I started teaching my own class in February of 2015.

So, if I can do it, so can you!  

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