How do you describe the feeling when you know you can do something but the opportunity is just out of reach?

It starts with the desire. It’s like trying to fly. Running, taking the steps to build the momentum and getting ready to take off, knowing that you’re able to fly and can reach the highest stars… and being held down. Being held back. Told that it’s not a good idea or to make a different decision that’s safer. Don’t take the risk.

It’s not just by the medical condition itself either. It’s also by the people who love you. They want to keep you safe and protect you and prevent you from being hurt. They don’t want to see you wounded or broken, even if they have no idea that those restrictions are just as hurtful.

All you want is to fly. Stretch your arms and soar. You can do it, you know you can do it. Even if you have never done it, you know you at least want the opportunity to try. The possibility of failure is there but that risk is better than never trying.

There are races, athletic events, careers, relationships, that I have been told I cannot be successful at so I am not given the opportunity to try. I’ve been pulled out of races. I was turned down for a sponsored fundraising event that would have meant hiking Mount Kilimanjaro. There are a lot of jobs that won’t consider me as a candidate at all because I don’t have a driver’s license right now (even if I could have obtained one for the last few years). There are people who won’t date me or be friends with me because they don’t understand epilepsy.

This is the reality of our lives. I can see a mountain in front of me and know I can get to the top (or at least try just like everyone else). I just might not be able to get beyond the terms and conditions. It’s amazing how appealing the idea of being just like everyone else is. At the same time, would there still be the drive to be successful and take on new challenges? That need to fly? I’ll take the motivation over being “like everyone else” but it would be really nice not to have the additional limitations that come from restrictions.

I was disappointed when I didn’t get to go to Mount Kilimanjaro. I was invited to go by an organization that represents people with epilepsy. It was meant to be for awareness and fundraising. Instead, I was rejected because I was “too epileptic”. One day I will hike up Mount Kilimanjaro. The sponsored opportunity may never be given to me again but I will make it happen. I know I can.

Two days ago I climbed up a hill. It involved climbing two islands to get to the top. There was no path to guide me, no easy route, so I simply had to face it and go straight up. I know if I told people that I was doing that (no matter the height) that I have epilepsy, someone would have advised me against it, citing that it was too dangerous and asking “what if I fall?”. The answer? “Then I don’t fall”.

We have a reality. Whether we are born with epilepsy, develop it or have it thrust upon us, it becomes the reality of our lives and part of who we are. What makes us all of who we are, in our entirety, is what we do with that part. Do we let it be the dominant factor? Do we let it hold us back from the things we love (or might want to challenge?). Do we wait and search for an easier path rather than one where we would have to climb and risk the fall?

I would prefer to say, and prove, “Then I don’t fall”.