Exploitation, inspiration, admiration. what makes that distinction?

There's been an ongoing dialogue, within the disabled community, about the "I word" and wether that's a compliment or downright  blatant exploitation.  Most of the question,  stems from the barrage of images depicting a disabled person doing something "extraordinary." In many cases these "extraordinary" moments, are fleeting everyday activities. Such images have, even, been dubbed "inspiration porn." I have a dog in this fight, and to be honest even I don't understand that.

The idea is that we are exploited to give able- bodied people something to be grateful for.  Somehow my existence fuels someone's hope, and appreciation for having a "good life" isn't an idea that I subscribe to. I took this idea to my sister. She's 5 years younger than me, and has lived through the good, bad and ugly with me. she's "able- bodied" but has a very clear, concise understanding of what it means to be disabled. I asked what things went through her head when she saw someone in a wheel chair pushing a shopping cart, or an amputee driving. She said "it's normal. Everyone needs to grocery shop." She was quick to point out that growing up, in our house, there was nothing abnormal about wheelchairs, walkers and physical "abnormalities." I then asked her if looking at me, and knowing my physical limitations ever made her feel better about her life. She said "No. If anything I just never understood how you did it." Did what? "Did things you knew you couldn't, and accept that things were hard for you, ignore that people stared at you." I know she's bias. But if that's what the world thinks when they see the amputee on top of a mountain, or the woman in the wheelchair snuggle her baby that's admiration, not inspiration. We're using the terms interchangeably, and they're not!

 I've been completely open and honest with regard to how I feel about the word "inspiration," but it bares repeating. I want to inspire. I relish opportunities, when I can do so. I'm in the unique position where my life, has given me wisdom, and tools necessary to navigate through some really dark times. I want to share those parts of myself. Where I draw the line is at being an "inspiration" for living a mundane everyday life. Being inspired by my trip to target is metaphorically patting me on the head saying "Good brave girl you ventured out into the world all by yourself."

However, we're a society that thinks in images. A picture is still worth a thousand words. And yes, there is something very "inspiring" about a photo of a person defying the physics of their own body. That's  reason the world loved Oscar Pistorius, and affectionately called him "the blade runner." To this day we can see a picture of Martin Luther King, and still admire the bravery and courage it took to be him. He inspired a world to change.

To be inspired by someone doesn't mean we had to pity them first.
 

Is it a change of heart or giving up?

What is it that separates changing your mind from giving up on your current situation? That's a good question, isn't it? It's a question that I've recently been challenged with.

I've always advocated living with passion. I always tried, my best, to live my life by that. If I don't have passion for it I feel it's not worth doing. That being said; I've noticed that my passion has been guided by the possibility of success.  I found myself locked in my comfort zone. I rarely venture outside of things that I'm good at. That probably explains why I've resigned myself to being an eternal student. However, as I've gotten older my priorities have changed. It's no longer the possibility for  success that drives my passions. It's the other way around, as it should be.

I'm struggling to get to the most recent goal that I've set. I've lost the passion for it. One might ask "which came first the chicken or the egg? Did I lose passion because I'm struggling? Or am I struggling because I lost passion? After much introspection I can say with 100% clarity that I don't have the passion to propel me forward in this direction. While trying to make myself feel something I no longer do I'm making myself miserable. I'm not in pursuit of a passion, right now. I'm pursuing SUCCESS. I'm going after a way to make a life for myself, in which I'm well paid and live a comfortable life. A career in medicine is something great and something that I did have passion for. At  some point down this path that passion fell apart, where it is merely fragments that lay at my side.

When you put your focus on what your heart wants often your ideal changes. So yes, you can have a change heart the minute you let yourself be guided by it. Once I quiet the practical brain I see I'm not having a "change of heart" A change of heart is when you allow yourself to be guided and fueled by a passion that may lead you down an impractical path. "Giving up is a conscious decision to stop trying altogether.

I've never given up on anything in my entire life! However, I do reserve the right to to have a "change of heart."  

Moving mountains

I recently began a rapport with someone, incredible. I wont apply the pressure of saying he "inspires" me me. But I can say that he makes want to be a better version of myself. Occasionally the topic of mountains comes up. I can't help but see the beauty in that metaphor, as it applies to the human condition.

The most glorious lie ever told is that self belief is all you need. Society perpetuates the story of "The Little Engine That Could." - "I think I can, I think I can ..." It's a resounding untruth that is forced upon most of us. Especially, those of us who face any challenges.  Here's what we're not told: Self belief without actual application is just a dream, that will probably never come to fruition.

We are all standing before a mountain. Regardless of the size we are all staring directly at some mountain. And there we stand with all the faith and that we can get past this mountain. We believe we can. We have that faith someone or something will get us to the other side of this mountain. Some of us stand there and scream "Get out of my way!" Some of us get frustrated and emotionally cave to the grandeur of this thing before us. We doubt everything we thought about ourselves. Because we stand here believing in ourselves and in our abilities, but this mountain wont listen. We can't get it to move!

Here's the truth: This mountain can't move. It is a part of the earth, a formation that existed long before  we got here. We'll never be able to make it move, and we can't magically walk through it. The only way to the other side is to take the long trek up: become bruised, watch the calluses form and allow yourself to feel your grip to hold on. You'll most certainly feel the ache, and fatigue but you don't stop, because you know you'll fall and all the previous work will be for naught. And when you think you cannot make another move you realize you're at the top. From there you can scream to the world: "I am bruised, and I am tired, but I am now as strong as I BELIEVED I was. Then with very little effort you descend the other side. And there you stand seeing things unfolding that were previously blocked from view. Undoubtedly, there will be another mountain. It won't necessarily be any smaller, but will be far easier to climb. The strength, courage and endurance that blossomed inside you, as a result of that first uphill climb has set you up for the next one, and the one after that .... and thus success is achieved. And the world will look vastly different from the opposite side of every mountain you climb. So don't tire yourself out screaming, and begging for that mountain to move. Take  all you have right now, strap it to your back, grip tight and start climbing.  

What we leave behind

When our tombstones are carved they will inevitably have the date we were born a ----- followed by the date of our death. We all know the date on which we were born. Our loved ones will sadly know the day we died. But who will really know the   -----? What seems like a pointless way to separate those two dates is really everything that we've done in between.  That dash interrupts who we were when we we arrived from the person we were when we died. That represents an entire life  lived. Who will know, or care about that "space.?" I think everybody wants to leave behind some kind of "legacy" We all have the desire to be remembered, and to mean something. Therein lies  our quandary. 

At it's root what does it actually mean to "mean something?"How many people must one impact, or share themselves with to feel like they've meant something? The answer to that question is there is no real answer. We're bombarded with images of people who, in our eyes, mean something: Men contracting the Ebola Virus trying to help children, who have it, in Africa. Veterans returning from a war, most of us know little about. Commercials of people wrapping wounded puppies in blankets while a depressing  Sarah Mcgloghlin song echos eerily in the background. Then we're moved, and touched, and sometimes even envious of these glorious beings that are doing things that will ultimately "mean something." It's a vicious trap that is so easy to get caught in.

I'm extremely guilty of this. I've always known that whatever I do would be great. But I also knew that I needed it to be profound, and have a huge impact. As far back as I can remember I've wanted to change the world.  When I was nine I sat in my parents kitchen, with my Smithsonian Chemistry set convinced I was going to find a cure for AIDS. With every bubbling reaction a created I believed I was on the cusp of saving lives. I ignored the fact that every bottle in that set had a label that read "Warning harmful if swallowed."  For years my quest for greatness marched on. I wanted to find undiscovered planets that I'd tell NASA about, and ultimately have named after me.

Was I a narcissist or just really naive? Perhaps a little of both. The quest to mean something and impact people is at the core of who I am. Yet I'm forced to question why I want it on a grand scale. When I'm gone I have a desire that everyone knows what that dash between my dates of birth and death meant. And that is where I've gone astray. 

I saw a man at the gas station, the other day. I asked him to help me with using my debit card at the pump, because I can't see the screen. He graciously gave me assistance, and in a roundabout way told me he hoped the 5 dollars he had would get him home to Farmingdale. I knew with the price of gas 5.00 would barely get him down the street! I thanked him for his help and ran inside and paid the clerk 10 dollars for that man to have an additional 10 bucks worth of gas. That man was extremely grateful, and thanked me more times than I can count. When we parted ways I knew, regardless of how infinitesimal   I had meant something. In that small act of kindness I had an impact on someone's day. 

While little things may not be life changing, or world enhancing. They do make the world a slightly better place. It was Ralph Waldo Emerson who said:  "The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” 

    

The "I" word.

I've been reading and hearing a lot of talk about use of the word "inspiration." The opinions vary, as much as usage does. Some within the "disabled" community find the word "degrading" in a sense. While others feel it is an endearing compliment. I know you can't play on both sides of the fence, but with this subject I do. 

I've always, strongly, hated being called an inspiration for doing things that were naturally expected of my peers. When people called me an inspiration for going to college I'd cringe. The implication was that  I couldn't or wouldn't achieve such a "normal" milestone under, what others viewed, as an "abnormal" existence.  What those people ignored was it was (is) my existence. it was all that I have ever known, therefore, I saw nothing abnormal about it.  I lived/live the life I was given. What's so abnormal about that? So don't be inspired by my trips to Target, or my ability to have an average day, just like yours. 

The word "inspiration" can often be "crippling" What is so ingrained in me, at this point is: I can't falter. I can't fail, I can't quit on anything. Why? Because the first half of my life has served as demonstration of "overcoming", to family, friends, and people who barley knew me. Just my getting in my car, and getting on the highway has inspired somebody. So it often feels a normal moment without great achievement lets down the world. I'm struggling through a Chemistry class, and I want to drop out of it. Someone actually said "But you've already been through so much!" Big deal! I have been through alot, but I don't want to go through Chemistry! I know that image of failure, or my giving up pulls away some of my "inspiration" status for you.   

I once said I've never done anything special. I believed ] that anyone would have done the things I did if they had to. That  was some naive attempt at humility. The truth is: No, not everybody could weather my storm ...That's why it was my storm. But what everyone can do is stand back up in the middle of their own storm. Wether or not they do is a choice. 

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In the appropriate circumstances and for a valid reason the word inspiration is a compliment that touches me deeply. Ok, yea my graduating college with honors, the same year I  almost died from a cerebral hemorrhage might be inspiring. But what touches me most is when a kid, from one of the classes I've spoken to. A young boy, the target of bullying calls me inspiring and wants a hug. I know there is purpose and legitimate reason for him saying that. Or when someone who has intimate knowledge of the path I've walked says it, I'm overjoyed. That means that person has watched me fight, and validates that I've made good choices, and when it all ends my struggles have meant something, to someone I value.

Where outsiders have seen strength and determination, my family saw insanity. My family watched me ignore,medical advice, make up my own rules, and do drastic things with the hope that it would all work out. That, somehow, it would all be worth it. 

So if you're going to find inspiration find it in the fact that I live my life, Not in the fact that I live my life despite the way you THINK it could have been lived. Driving a car, being in college, having a social life, none of that should be inspiring. Nor do I want these things to serve as some "power" that someone uses in their time of great trial. Admiration and insipation are two very different things.  You can admire my character and attitude without  thinking my life can provide some footprint for you to follow, simply because I get up every morning and plant my feet on the ground. Because I'm pretty sure you do that too!    

First comes LOVE ... then comes marriage

I haven't had the most productive "love life." Of all the things, in my life, that didn't fit into the mold of living "normally" my love life is the one that plagues me the most.

It was in high school that I realized that having a disability may actually put me at a "disadvantage" where men and relationships were concerned. It worried me a little, but I was only 16. I had plenty of time to deal with those issue. Never did I think that on the cusp of my 34th birthday I'd still be dealing with this.

I was talking with my best friend about dating and the desire to find "Mr. Right." "It's not easy being a 4' tall woman and finding someone to see beyond that. I know I'm not "standard."  Those words fell right out of my mouth without my even noticing. It wasn't until I was alone, that night, in the quiet of my mind that I realized I verbalized those thoughts. While those are feelings I had, they were also feelings I kept secret. Even when those feelings were my reality I never uttered those words aloud. To share that with someone made me vulnerable to some confirming and solidifying the way I felt.

I live my life with unmatched confidence. I've broken boundaries and overcome obstacles with ease and grace. I always thought I embodied the cliche of: I get knocked down and get right back up. Yet when it comes to love and relationships my self-esteem is crippled. The confidence I pride myself in, is replaced with doubt and fear.

I was in love, with a man who said "I love you." No one had ever said that to me before. I had finally heard it, and those words resonated so deeply in  every cell in my body. My heart was feed, as I heard "I love you" on a daily basis. I was having a love affair with the idea of being in love. When that ended my heart was shattered. He actually said "I'm too superficial for you." At that point everything I thought I thought I believed about myself and my world were now just fragmented questions. I'm just like everybody else. Was I, really? I'll eventually meet my prince charming. Is that possible? People see beyond physical differences once they get to know you. Really? Who are these people, and on what planet do they exist?

So I took everyone's advice and "put myself out there and tried "dating." How else do you date in 2014? You join dating websites and go on a bunch of awkward first dates at Applebees. Every date or initial first meeting, at a coffee shop, was my campaign to be seen for who I am. We'd ignore the elephant in the room. And that goodnight hug, would be some poorly choreographed "routine" that started with me  wrapping my arms around some man's waist, and ended with him crouching down on one knee. (and not with a ring!) After all, it looked rater odd and inappropriate for my head to be inches away from a man's crotch in the doorway of some restaurant. So naturally a true gentleman (or any man that didn't want our encounter to be anymore "strange" and uncomfortable.) would prefer to crouch on his knee.

 There was never a "natural" way to address that elephant in the room. What could I say? "Yea, I'm 4 feet tall. And yes I drive.  Sure, I live a normal life. Yup, sex is a possibility ..." And run off the rest of the list of things I can do? So made sure it was known and accepted ahead of time. I updated online profiles to include that I had physical differences, and if that would be a problem or something that couldn't be accepted let's not waste each other's time. Or if met someone at a bar or Starbucks I'd openly preform my daily "acrobatics" to climb up on the stool or reach the straws, and things like that. As strange as it is, it was may way of saying: "yea, I'm different but I handle it." If you can get a guy to still chat with you after you've used the corner of his stool to push yourself up on yours, you can be sure he got the message.

However, being blunt and open has also backfired. Now what I'm getting in return is the tongue in cheek "you're the perfect height" joke. If I had a nickel for every time I heard that I'd be able to retire tomorrow. Most recently I heard "I always had a fantasy of being with a little person. Would you wanna go out, and maybe make a baby." So now I'm some kinky fantasy? I can't win!          

The superstition of being "well."

I'm sure we've all experienced the feeling of "this is too good to be true." Bathed in euphoria as a persistent thought floats in and out of our consciousness: "This can't last." I've heard this in reference to: lovers in new relationships, excited new employees who feel they've landed the perfect job. However, there is one group that this feeling resonates with, louder than any other.



Ask any person that has battled, fought, or beat any disease, illness, disorder and they'll tell you that fleeting thought of "this can't last" strikes utter panic amidst the euphoria of feeling "well." In a misguided attempt to hold on to your "victory a superstition can take root. With each passing minute, hour, and day the superstition grows bigger.



I woke up the other day and realized that I haven't had a seizure in 6 months. I wanted to shout that from the mountain tops but I quickly hushed myself. "Shhh you don't wanna jinx this." I did the same thing when medication was reduced and I was still seizure free. Even as I type this a small voice is echoing that superstition so loudly I can barely hear my own thoughts. - I said I've been seizure free 6 months. In saying that did I ruin the possibility for 7 months?



Health is such a continuum with an ever changing status. I WAS seizure free for over a year. What about the woman who's Breast Cancer WAS in remission? Or the little girl who WAS doing so well in physical therapy? Or when my mom WAS making progress?
What is it that transforms the "is" or "am" that belongs in those sentences to "WAS?" Is it some silly jinx? Is it a matter of counting our chickens before they hatch? Maybe it simply is the fact that things ebb and flow. Life has peeks and it also has valleys. That includes the status of your health.



The challenge is to temper caution with optimism. Find a way to stand upon those peeks and shout "I FEEL GREAT!" when you do, while maintaing a healthy respect for a valley that is just beneath you. There will always be an "is" that will become a "was" or an "am" about to be an "am NOT." The only "jinx" there is is the one in your head that will cheat you and everyone who loves you out of the joy of acknowledging the fact that you're feeling well and thriving!



As for me: I'm doing great! I'm back in my car, off one medication, got my hair cut and am back to living my life the way I'm use to. Oh yea .... I'm still SEIZURE FREE! (shhh ... don't tell the part of me that hasn't fully given up the superstition that I told you!)