Finding The (Invisible) Line: Ten Years And Counting

Many are already aware of the fact that I don’t talk (or even write) about having Cerebral Palsy very much. I’ve told myself that I don’t want to be the postergirl for the handicapped, nor do I want it to be the main thing that defines who I am. I kept convincing myself that for that reason, there was no need to bring it up and openly discuss it. But after reading an article on The Huffington Post, I began to realize that when it comes to disabilities (whether they’re physical or otherwise), the media often shows only one side of the story: sometimes it’s completely cast it a negative light, and other times it’s dripping with optimism and a happy-go-lucky vibe. And while I’m all for being positive, I find it troublesome when that’s all that gets highlighted because it doesn’t tell the whole story. Granted, not all news articles and segments have time for the big picture, but I think it would be more helpful in public understanding if both sides of the coin were displayed.

This is not a public service announcement. This is not a pity-party. This is me realizing that while I refuse to lean on having a handicap as a crutch, it has and still does affect me. This is true in both good ways and bad ways. But rather than write this as a laundry list, my hope is that this might encourage and educate people about celebrating differences and doing the absolute best that you can in whatever obstacles or setbacks that you have to face.

I say ten years because it was around the age of eleven or twelve that I became fully aware that I wasn’t exactly like my peers. Before then I had a pretty idyllic childhood,where life consisted of Disney movies, hanging out with friends and family, and just being happy. Then very slowly, reality began to creep in, and it was a tough adjustment.

It was a chain of events, and many of them from that time I can’t recall in specific detail. What I do remember was how it felt; like a black cloud settling over my head, especially when I started to learn that the world (and the people in it) are not always kind. I heard the word “confidence” a lot while having absolutely no idea what it meant.  I couldn’t understand the point of riding a separate bus when I physically had no problems in terms of getting on and off of it. It was all new and strange and I was completely naive throughout all of it.

Back then, I desperately wished to be valued and validated, and to be reassured that I was enough. My mother once explained to me not too long ago that she was never angry or frustrated with me, per say, but more so that she couldn’t do anything to make it all better. And while on the surface it looked like I was begging for it, I just wanted to be told that it was OK to feel hurt, sad, and/or lonely. On the other side of the fence, it’s easy to sit next to your child, friend, etc and automatically want to solve whatever problem they’re dealing with. It’s natural to want to take the pain away. The toughest part is that you can’t. You can only support them and be open to what they need. That might look like putting your arms around them and letting them vent, regardless of how ridiculous they sound or how trivial the situation is. it’s not about being strong or being a hero; it’s about being there.

For those who believe that self esteem doesn’t exist, think about what it would be like to have your peers, probably strangers who don’t even know you, call you a variety of nasty names or tell you that your legs need to be fixed. Imagine the hopelessness inside of you when you feel the urge to take a razor blade to your wrist or pop a bunch of pills because there seems to be no end in sight. Feel the sting when you’re repeatedly told or shown (whether it be on purpose or not) that you’re unlovable. And all you can muster is a barely audible “what did I do wrong? I never meant to hurt anybody.” And this is all happening when you’re just thirteen.

Though I often took it for granted, there were a lot of people who took care of me throughout middle school and high school. My brother stood up for me a lot and I had a number of friends who were willing to hand out an ass kicking or a shoulder to lean on if need be. For where I was at in my life, my church family was amazing, and many are still guiding me today. Allowing a space for a sense of faith and spiritual nourishment has proven to be necessary, though it would take me almost nine years to grasp what that all meant. My teachers and mentors were all very encouraging.

I had been physically defying the odds since the day I was born, but my senior year of high school was a turning point. When I expressed interest in going to Iowa, most of them thought I was crazy. You’re not going to last a semester, some said. You’re going to get lost and will be a number, argued others. Yet I had spent the last eighteen years being told what I was and wasn’t capable of, and I was ready to go in a different direction. Plus I just had this peculiar feeling that it was a place that was meant for me, which I now know is true

Leaving home my freshman year was like breaking out of a cage; I had both my independence and the opportunity to be somebody completely different then in the past. Walking around campus took some getting used to, where my legs would ache from the mileage and I’d remind myself that I was getting “sexy calf muscles.” On top of that I hardly got any sleep due to not  want to miss out on any of the excitement. The first two weeks of school,  kept going and going until I was literally sick from physical exhaustion. I’d only opened up to a few people about what I had and why, though others were starting to notice that something was going on.

Over the years, I would repeatedly run into a brick wall whenever I failed to take care of myself.  When I did Dance Marathon sophomore year, I physically passed out because my body couldn’t handle being in motion (let alone being awake) for twenty-four hours straight. I have no idea how I was able to go out almost every weekend after I turned twenty-one, and more so drink as much as I did without getting alcohol poisoning. Being stubborn has been a trait of mine since infancy; if I’m that determined to do something, I won’t stop until I accomplish it. That being said, if I feel that I’m not ready, I won’t let anyone convince me otherwise.

 Navigating the party culture was another obstacle. In the beginning (and for part of junior year) I wanted to run around and be wild. I was curious, hungry to do everything and feel everything. Yet there were a lot of assumptions made (again) regarding my ability to handle it, and that created some tension between my new friends and I for a while. There were those who didn’t get it, and instead of not caring about what people thought or said, I felt like I had something to prove. While I have some natural independence and have always been a bit of a fighter, I did adopt somewhat of a tough girl, you-don’t-mess-with-me attitude. I didn’t want acquaintances to assume that just because I looked sweet and friendly on the outside meant that I could be easily taken advantage of. In other respects I started to get defensive about my thoughts and feelings, sometimes doing whatever I could to keep that part of me hidden. I wasn’t trying to be someone that I wasn’t, I just hated wrestling with one side versus the other.

I used to think that I was angry at God for making me the way that I am, both physically and emotionally. Had I not been born prematurely, maybe things would be different; I might have had more experience in certain regards, especially with relationships. I would be able to give as much as I take and not feel useless when it comes to helping others. As I’ve gotten older, I see that it’s it’s not God that I get pissed off at, but the ignorance of the culture that we live in. There are more opportunities now than there ever have been to go out and educate yourself, whether it be by research or just talking to someone that has to cope with whatever you don’t understand. And yet it seems like hardly anyone does. I know this because I constantly run into strangers where the first thing out of their mouths is “oh my god you’re so short!” Sometimes I ask why being petite is such a big deal, and sometimes I try to explain that it’s because I was born prematurely. Feel free to chalk it up to not having a filter (or being drunk) but that doesn’t make it any less annoying.

I’ve found that the best way to live in spite of all that is to learn how to truly value myself as my own person. I’ve wrestled with self-love for the last decade because I thought it meant becoming narcissistic or acting like I was better than others. I don’t like the idea of making a list of traits or qualities because those things are always changing or evolving. My strengths, weaknesses, and passions may not be the same tomorrow as they are today. It was not a question of what to do, but how to go about doing it.

And then just recently, I came across something from a friend that put it in perspective.He’s a good person who is very genuine and has a good heart. This was not directed at me personally, but it had such a profound effect that it moved me to tears:

Remember God your creator thinks of you as his masterpiece and has great plans and purposes for your life, even today. Live this day with confidence knowing that! As we encounter people in our lives today, help us to look beyond their outward appearance. Help us to love and believe the best about them. 

I don’t know why it brought out so much emotion in me; perhaps it has to do with something so cliche being presented in a way that’s so simple and yet still very beautiful. Love does not have to involve a million different reasons. Value does not have to involve a million dollars. Identity does not have to be about a million different opinions. It all boils down to being human, but also being a creation of God. And in the moments when even those don’t seem convincing, sometimes loving yourself might just be the act of taking a step backward and to stop trying so hard, at least beyond what you know you’re capable of. The bare definition of self-love is self-compassion.

As I’m just a few months away from graduation, I’m now coming to another crossroads, which is both scary and overwhelming. When you’re on the edge of what truly is the rest of your life, you realize that your decisions do have consequences, and what you decide can either set the course or ruin it. There is no specific set of circumstances that allow you to start over, such as going to high school or college. You have to be the one to make things happen for yourself and create your own opportunities. God does have a hand in it, but that doesn’t mean you have to become a sitting duck and let amazing possibilities pass you by. Ask, seek, and be proactive.

I’m not overly worried about the future or am trying to plan this next chapter out to the letter. However, I have witnessed friends and family make second choice decisions because they were either afraid of getting hurt or believed that they were doing the right thing. I’m not in their shoes so I’m not going to fault them, but I see the unhappiness and I see the regret. I don’t want to look back five years to a decade from now and experience those feelings, which is why I have to be honest with myself about how having CP will play a role as I go out into the real world. In college it’s one thing to brush it aside because people are so close together and can lend a hand if I need any help. Outside of that, it’s a different story. 

As much as I’d like to believe otherwise, my physical circumstances will partially determine what kind of job I’ll have and where I’ll end up living. It has and continues to help shape my standards for relationships and what goes on in the context of those relationships. I need people around me who will encourage me to be the best that I can be, but also who will understand that I do get frustrated and am critical of myself at times. It definitely relates to how much time and energy I can put into projects or commitments. To clarify, none of this is about fear or taking the easy way out. It’s about being self-aware and pursuing what I truly want, while also being realistic. And it’s not just solely about what I want, but what I need as well.

Which is why I try not to dwell on being an inspiration; I’m not going to proclaim whether or not I’m a role model  because I can’t control how people see me. I do still wrestle with depression, though I now accept that I’m allowed to have both good days and bad days. Sometimes I wish that I could conceal my emotions better or not be so sensitive. What I’ve been through on the outside does correlate with how I treat others and how I react to specific circumstances.

 I would much rather be an example of love, kindness, and putting good back into the world than what I’m able to accomplish with physical strength or perseverance. I know that I am a light, but hopefully not an idol or an expectation to live up to. But ultimately if my words and my actions push or motivate somebody, then so be it. As long as it has a positive impact, then that’s what matters the most.

One of the biggest blessings to come out of the last ten years is that I’ve become very intuitive and self-aware. I love that I’m quirky and still look at life with childlike wonder, but have the ability to retain a lot of wisdom and have grown in maturity because of that. I definitely pay attention to detail and and have begun to stop caring about how cheesy it is to be able to remember the most random things. A lot of that has come from having to watch what goes on instead of actively participating, especially as a kid. It all made my feel isolated for a long time, but I’ve come to appreciate it in the long run.

I’ve come a long way, but there is so much more to do. I am beyond grateful for the people that have helped me get to where I am in this moment, the friends and family who’ve seen past the surface and just let me be “Al.” I feel more connected to my parents, particularly my mom, who I haven’t always seen eye to eye with. I don’t know what this next chapter in my story, but I plan on going into it with my eyes, arms, and heart wide open. 

I won’t say that I’m lucky, because I don’t really believe in luck. Rather, I’m blessed; my life is a gift, and I don’t intend on wasting it.

photo credit: happykiddo via photopin cc

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