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Tuesday, February 6, 2018

Be the change you want to see in the world

Facing life’s hurdles 

I thought a lot about this and really went back and forth on how I felt about writing it. The idea behind this blog is to raise awareness. Not just about AS, but about the hurdles we face along the way. It isn’t that I have an issue with sharing my personal experiences, it was more about figuring out how to write and not get off topic due to my emotions. We all face hurdles every day in life. Especially in this day and age. A world full of people who have a self entitled attitude, you owe me something because you hurt my feelings. You all know what I am talking about. People are not accountable for their actions anymore. It has led to a world with more anger and hate, rejection and disapproval, worst of all everyone is offended by everything.


A world that passes judgment 

Yes, as much as we like to pretend it isn’t true, the world is full of people judging us. From what we wear, to who our friends are, the color of our skin, the area you grew up in, your past, and everything you do day to day. This judgement is passed by people who don’t bother to get to know you. They don’t know your story and they don’t want to hear it. I have plenty of friends who have faced their share of struggles, and yes, I am aware that my life was probably far better and easier than some while being far worse and harder than others. It was only recently that I even felt like anyone judged me for something I couldn’t control. This is what brings me to this blog.

My disease isn’t all that I am

Just recently I discovered one more thing that I struggled to do because of AS. It wasn’t impossible, it was just far more demanding on my body than I ever expected. For 11 years I have been certified in CPR and First Aid, that is until a week ago. I attended a course held by a member of the local American Red Cross and I quickly discovered how difficult this was going to be. I recognized the need for possible adjustments to prevent a flare of increased pain and lack of range of motion. I asked for the instructor to allow me to do a full round of CPR with supervision as required to pass, I was instantly told I would be failed. Now, tell me if you don’t watch my skills then how do you know I need failed?

Facing mistreatment 

Now I explained what AS was and why doing CPR while not observed would not be a benefit to anyone and explained I was happy to do it while she watched, but I had to consider my bodies abilities to continue through the rest of the day for doing more than what was required. I never in all my life felt like suddenly I was a lost cause because of my AS, in fact, I have always believed this is the reason I can overcome so many difficult situations. I was ignored from that point forward, refused to answer any questions I had, singling me out with clear differences in how I was treated compared to other students. I was failed, actually I was passed off and not taught. Why? All because I expressed interest in protecting my back from more pain. I asked for a little consideration because I have a chronic pain disease that greatly impacts my ability to move normally. From day to day I never know what I’ll get. This somehow made me incapable.

That’s not acceptable 

I’m sorry, but I can’t be okay with that. Yes, this time it was me, it was my disease but none of it is acceptable. I don’t care if it’s the young man at the store who doesn’t look like he needs the handicap spot, or if it’s someone who is clearly different than you because of their handicap and definitely not if it’s because your own ignorance makes you think someone is clearly different than you just because of how they look. Not one bit of it is acceptable. I am disappointed in the things I see coming from just about everyone. I see it regularly at my job, and it’s disgusting how much it’s in social media.

Be the change you want to see in the world

Yes, my if you want to use the term “disability” is AS, well, that and maybe putting to much stock in people genuinely treating others with respect. Yes, I have made my fair share of these mistakes, I’m far from perfect. I don’t write because I’m seeking attention, I write to offer some glimpse of hope to those who might be worse off than me. I can get a million negative responses and that one needle in a hay stack gives me strength to do it again. My thoughts might not change the world, but all of ours can! Put those thoughts into actions and words, be the change you want to see in the world. I never won’t anyone to feel like I have because I have AS, that’s why I lead a support group, why I blog. I also think everyone deserves fair and equal treatment no matter what.

AS is my diagnosis not my disability 

Yes, sometimes I struggle to shave my legs and put on shoes. Other days, I can clean my entire house and possibly run a marathon. Well, maybe that last part is in my head! My point is, I have AS, and yes I have had to accept that I might need help, or that I just can’t do something. Maybe I just have to adjust how I do it. None of this is seen as a disability in my eyes, this was my gift, this gave me passion, drive, strength, dreams, friends I never would have had otherwise, and countless opportunities. Nobody gets to make me feel like I don’t matter because of this. Yes, one door might have closed, but many others opened. I took an opportunity to turn life’s lemons into lemonade. I will hold my head up high and like always.....


Kick Some AS

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