Learning to smile through the pain of having a disability like epilepsy is both a curse and a talent, neither of which I ever wanted. I suppose that’s why I often find so much comfort in isolation. Well, to be honest, it’s not total isolation. I do have a beast of a dog named Lucy. I could shave my head and where a muumuu, and she still wouldn’t think anything was wrong with me! Gotta love that dog! You see… when I’m alone, I have no real expectations of myself. The make up is off, my guard is down, my hair is a mess, and my clothes definitely do NOT match! Sometimes I even smell…HA! I won’t lie, it’s kind of nice to not have that stress of living up to what other people need of you…what they want…what they expect…even if it is only for a brief moment or so.
Those expectations that people have are often unrealistic and selfish, even if it is placed with the best of intentions. People want you to smile even when you don’t feel like smiling because you have “such a pretty smile.” They want you to come to parties or events when you don’t feel well. Canceling is always awkward to say the least. Some people get it, and some don’t. After a while, you just stop explaining altogether and some people stop inviting you to anything and everything. The question “How are you” becomes a silence filler for uncomfortable times. This is pretty much life wrapped in a pink bow to make the world feel better. Sometimes I wish things where different…
But for as long as I can remember now, I have always been climbing a virtual mountain. One filled with trials, tribulations, and a whole butt load of expectations. A mountain that at times seems to be so breath taking. A mountain that shows me what life is really all about. It makes those moments of isolation so freeing…so calming. Have you ever felt that way? Have you ever been outside when no one is around? When the sun is coming up and the birds are chirping to the rise of a new day? Or maybe you’ve taken a walk in the woods and for a moment you hear nothing at all? No cars, no music, no people? Then maybe, slowly but surely, you hear something else…the wind as it brushes by your face, a woodpecker off in the distance as it pecks away repeatedly at a tree for food, or perhaps…perhaps you are even lucky enough to catch a glimpse of a doe and her fawn off in the distance in a nearby field. Then you catch yourself standing still. Taking it all in…every moment…every smell…every sight. And as the sun hits your face and you feel the cool air brush by again, the last thing to enter your mind is: “If only…”
But at other times, this same mountain brings me to my knees. I am all of a sudden startled by this knowledge that I will never reach the top…that there will be mountains after mountains waiting for me over the next rocky hill. Sometimes I wish I could just stay in that one spot where I hear the woodpecker and stop moving altogether. It’s not a perfect place, but it’s better than climbing day after day after day. The sun feels so warm and peaceful at that spot, and I’m just so tired. I’m tired of climbing. I’m tired of explaining. I’m tired of having tremors. I’m tired of being upset. I’m tired of pretending not to be upset. I’m tired of always having to be strong because I don’t have the time to have the breakdown that I justifiably deserve to have! FUCK! I really HATE this mountain! And I know if I keep climbing, I won’t feel the sun anymore…and that scares me.
Yet, I know me…and as scared and mad as I am…I will always keep climbing. You’re probably wondering why. Why I wouldn’t just stay in that one spot? Have you ever gotten lost in the woods? Had those moments when you felt like you would never get out of that situation? Surrounded by a never-ending trail of trees and shadows? Always hoping that over the next hill you would find your way out and see the sun cast down upon the exit? It’s been a long time since I’ve gotten lost in the woods, but I have wandered deep into the forest, so deep that the sun was non-existent…so deep that I lost track of how far I wandered and got nervous about making my way back. The strange thing is, for as nervous as I was, I never doubted my ability to make my way back to see the sun again (and I’m not just saying that because I had my beast with me). Like I said, I will always keep climbing. My hope is that someday I will reach the top of at least one of these mountains and feel the sun like I’ve never felt it before. It’s not about the challenge for me or even the journey. It’s about that moment. The moment when I can close my eyes and know that I made it over that hill, up the mountain, despite expectations, despite doubts…that I can feel that warmth of achievement, feel a sense of calm, and know that no matter how much I cry, smell, or shake in that moment, it doesn’t matter…I accomplished my goal!