First published 5/14/2016 by Odyssey.com
Being different is underrated.
Growing up with an extremely rare condition, Larsen Syndrome, has majority impacted the way I view the world. This condition, which affects the development of bones in my body, basically means that all of my joints are dislocated, and I have no knees. My legs can always be seen sticking straight out, and trust me, it sure is a great conversation starter. Because it is only seen in 1 in 100,000 babies, not many people have heard of someone like me, and I’m proud to have some of the rarest legs in the world. Wherever I go, I never seem to be able to escape my disability, but my condition has allowed me to gain perspective and realize what truly matters in life. Here are some life lessons that my physical disability has taught me throughout my 18 years of life.
Resilience is key.
There are times and challenges that have pushed me further than I ever thought imaginable. Instead of throwing in the towel, I have realized the importance of pushing right back, keeping my head up, and handling everything life throws at me one step at a time.
Looks aren’t everything.
As many other physically challenged people, I have never had the “normal” body type or have appeared exactly as those you see in everyday life. Far too many times, I have wished and prayed to change the way I look to fit in more. I realize now that I accept the way I am, and there are no true versions of “normal.”
Nothing is ever going to come easily.
Everything from the day I was born has taken both hard work and patience, and I have never had the luxury of having things simply handed to me. There are always going to be challenges in everyday life that able-bodied people do not have to worry about, but it is essential to handle these challenges with grace and keep persevering.
Progress takes time.
After a surgery or other milestone, I usually get caught up and frustrated because I want to see results immediately. I jump steps ahead and forget about the time it takes in between these hurdles to heal, recover, and refrain strength. Slowly but surely, progress will be easily seen. It just takes time.
Not everyone will understand or accept me.
This one’s crucial. As much as society likes to preach how it is completely accepting of the world’s largest minority, the disabled community, not everyone you meet will share this same attitude. There have been individuals I have come across in my life who for some reason did not understand the challenges I face daily, and they treated me like I was a completely different species from them. It’s important to remember that this is no where near true and not to let these small-minded people ruin how I’ve come to get to where I am today.
I can’t do everything, but that’s okay.
There are numerous sayings that preach that everyone can do anything they set their mind to, but I can attest to the fact that this is most certainly not the case. By not having knees, I cannot run, kneel, rock climb, ride a bike, or even sit criss-cross applesauce. No matter how much willpower and positive mindset I give off, I will never be able to do these things, but that’s okay.
Accepting myself will always be a lifelong battle.
There are days when I’m feeling good about my progress and all parts of who I am, but there are definitely days when this is not the case. There are days when I just wish I could step out of my own body and life for a bit, take a breather, and be a bit more normal. At the end of the day, it helps me to take a step back and put in to perspective how many other things and people in my life I’m thankful for. This struggle is not something that’s just going to magically go away; it’s something that’s always going to follow behind me.
I can’t count myself out before I count myself in.
I will never know if I can do something unless I suck up my fear and try. There have been many times where I was pleasantly surprised at being able to do something that no one had faith in that I could accomplish. I mean, look how I’ve just finished my first year in college. Adaptation is a beautiful thing.
There are going to be days when I’m frustrated with my situation, but no one will truly get it.
Sometimes, I feel completely alone in my journey and misunderstood in my day-to-day life. There are a lot of situations in my life that even my closest friends and family will never be able to understand what I’m going through of how I’m feeling. This is not self-pity, but it’s hard sometimes to remain optimistic and turn this lonesome feeling around. It just happens. Let it.
All parts of surgery and physical therapy are nerve-wracking and are hard to overcome. Wheelchairs, walkers, crutches casts, and everything else in the medical equipment category just plain sucks. Stress and pain are inevitable, but eventually the hard times pass. End of story.
People will always stare, but it’s not the end of the world.
I used to be really torn up and conscious whenever I’d step (or wheel) a foot out of my house because I was afraid of the staring I knew was going to come from everyone I encountered. I have learned to accept the fact that some are just curious about my disability, while others truly are staring because they have nothing better to do. I have realized how much better life is when I take people’s stares and turn them into motivation to keep setting an example of moving past hurdles in life.
I need to be my own advocate and accept my life for how it is.
The cards have been dealt, and there is nothing I can do to go back in time and change them. Honestly, I don’t know if I would want to. It’s necessary for me to consistently speak up, voice my needs, spread awareness, and stand up for both myself and others with disabilities.
My happiness and quality of life is most important.
There are always going to be those people who have their opinions about my decisions in my life I make to keep moving forward. I still find it hard to think for myself and continuously make decisions that are best for me and my quality of life, but I’m getting better at it. No one but me knows what I’ve been through and why I make the decisions I’ve made, so I need to keep living for myself and no one else.
Being different is underrated.
I’m usually looked at with sad expressions and approached with pitiful remarks of how strong and inspirational I am for living my daily life. However, I do not always think of my disability as a negative thing. I like being different. There are some perks, such as front-line cutting at amusement parks and concerts. Also, free parking is always a plus, am I right?