Monday, November 19, 2012

Giving Thanks

In the spirit of this week, I wanted to spend some time focusing on what I am thankful for.  It is so easy when living with a disability, to get bogged down in the day-to-day doldrums.  To give in and let the disability win.  And I hate that part of this life; I hate that sometimes the Tourette's wins and dictates how I feel about my life.  Don't get me wrong; this sucks.  I wouldn't give it to anybody.  But, I am thankful that I can see (with contacts), that I can hear and talk and walk. 

Even when the tics make these things hard; I am still capable of doing them.  Could I conceivably perceive a time when I might have to resort to adaptive equipment to walk? Sure.  If my tics tried to take my legs away again, and it was beyond the scope of Owen's help, I would (begrudgingly) use adaptive equipment.  Even when my tics make my eyes squint shut or make me blink so rapidly that I can't see straight, I am still capable of sight.  Eventually the tics will subside and I will be able to see. 

And yes, my tics have even taken away my ability to speak.  I stutter due to the palalia and I have chronic aphasia that varies in severity.  Some days I speak perfectly fine, and other times the words get so jumbled up in my brain that they come out in the wrong order or I use the wrong words.  Or I lose vocabulary... It's good fun.  But even when that happens, I can still write.  I get teased about being too verbose on my blog, but it's because no matter what my brain is making me do with regards to verbal communication, I can always type and my thoughts come out just the way I want them.  Now if only I had a computer that could keep up with my typing instead of eating the things I write due to hard-drive malfunctions...

I am unbelievably thankful for all of the people who donated to help me get Owen.  Without your help, I wouldn't be about to embark on this amazing and incredible journey.  I still can't fathom the generosity of perfect strangers.  I am a cynic by nature; a pessimist if you will.  I've seen the worst side of humanity due to my disability.  I am slow to trust people and quick to end a relationship if I think I can't trust somebody anymore.  I am cautious in public because I don't trust how anybody is going to react to me.  And yet, because of my disability, I have seen the very best of people.  I have had people I had no relationship to, no friends in common with, nothing, donate to help me get Owen.  There was a family in contact with Heeling Allies about getting a dog for their disabled adult son and when Heeling Allies told them they didn't feel like they were the right fit, this family donated $250 to help me get my dog.  Even though they were going to have to hire a private trainer where they lived to train a service dog for their son, they still donated to help me.

There have been people my mother knows through online forums who we have never met in person who have donated, collectively, hundreds of dollars.

There have been complete strangers who we don't know donate.

Teachers, with very little money themselves, have donated to help me get Owen.

I was hesitant a year ago to fundraise and ask for money; I didn't like having to ask for something, especially in so public a manner.  But by doing so, I truly have seen the very best that humanity has to offer.

I am so thankful for my friends.  I don't think you could understand what it means to be the friend of a Touretter unless you are one.  It isn't easy.

Me?  I'm used to the stares in public and the comments and everything that comes with having Tourette's.  But somebody who is healthy having to deal with it too?  That's asking a lot.

My friends could care less when people stare at me out in public or when people laugh or snicker or say something.  They indignantly tell me that I should hit the person that is standing too close to me in line because I shouldn't have to struggle to mask my tics just because somebody has no concept of personal space.  They don't mind when I make loud noises in a quiet place.

My friends position themselves on the right side of my body when walking or sitting somewhere.  They do so, fully aware of the fact that by sitting or standing there, they will get hit.  They do this so that I don't have to worry about hitting a stranger.

They ask me where I want to sit when we go to a movie theater.  Sometimes this means sitting next to the asshole who won't stop talking the whole movie so that I can sit in the aisle.

They laughingly tell me that yes I did hit them when we were out somewhere and that is why they make sure to sit next to me.

They hear me bitch about the stuff I have to deal with, and even though they have no context for understanding my disability, they listen.

They stand up for me when somebody says something about me that they think is rude.

They look out for me; my friends have vehemently argued with me that I need to take a break, even when I am adamant that I am fine.  They have covered for me at work so that I could take breaks when I needed them, even when it meant giving up some time off of their own break.

They help me keep track of my schedule when my brain refuses to remember what day it is.  They laugh when I argue with them about what day my brain thinks it is, and text me reminders if I have to do something that is out of my normal schedule.  They remind me when assignments are due and keep a lookout for me when my brain decides to check out for a few days.

They pick me up when they want to go out at night, because they know I won't drive if I'm tired.  They drop me off at home without once expecting anything in return.  And they do this without even asking.

They laugh and move things out of my way that I might knock over.  They ignore the beeps and squeaks and snorts in a conversation.  They don't see the tremors and eye rolling and head shaking.  They accept it as part of who I am, and they don't hear or see the tics.

They never say that they are frustrated with me or embarrassed to be out with me.  They simply don't see it anymore.  They do what I wish everyone would; acknowledge that I have Tourette's, and move on.

And of course, I am unendingly thankful for Heeling Allies.   I don't know if they will ever realize what it meant to me, a year and a half ago, to search "service dogs for Tourette Syndrome" and stumble upon their website.  They have given me my hope back; hope for a normal life.  Hope to be free of this chronic exhaustion and pain and fear of being in public. 

Through Heeling Allies, I have met some amazing people who have received, or are about to recieve, a Heeling Allies dog.  People who I know, beyond a shadow of a doubt, I will remain in contact with for years to come.  (If you want to read about somebody who has been partnered with their Heeling Allies dog for a few months now, check out With Ben).

I am thankful for the opportunity I have been given.  I have been given the chance to walk with a service dog, to hold my head up high and once again feel confident and safe with my body.  I have met some amazing people throughout this journey, and I know I will meet a lot more.  I have found my voice with regards to Tourette Syndrome awareness; a few years ago I was ashamed to admit what I have.  Now I literally have the awareness ribbon tattooed on my body.  It will always be a part of who I am.  I am confident when speaking to groups of people about my life, and I sincerely hope that by doing so I am helping to change somebody's perspective on Tourette's.

And I hope that in a year from now I can be writing about how I am thankful for Owen; thankful for the new life he has given me; and maybe even thankful that I have a "big-girl" job.

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