Epilepsy Ontario :: Letter to the Orchids

Letter to the Orchids

By Sally Walker Hudecki

At age eleven, on the eve of adolescence, I was kidnapped. Life, or God, or whatever it is you believe in, took me outside for a talk. It said, "Sally, you can never be normal. You'll be scanned and tested and each of those moments, the swallow of a pill, the shame of an ignorant joke and the nakedness of a doctor's look will kill you slowly. They will drain something important out of you, bit by bit. They will make you hollow. You will live inside of a shadowy death for years. Everything brings everyone a second closer to death, but Sally, for you it will be closer and quicker."

This is a lie. I can only wish someone had told me. I wish I could point at a part of my body and say, there it is. There is the devil that haunts me. There is the man with the gun who waits until I am safe, or I am happy, to squeeze the trigger again, many times, until it doesn't hurt anymore. I wish that bright afternoon, when I was eleven, someone had said, "don't worry, one day you'll really deserve this." Instead, there is nothing. There is no explanation. It seems that my life is trying to kill me.

Nothing I have experienced is truly worth describing. I could portray how terrifying it is to suffer jamais vu—to know I am in the neighbourhood in which I have lived forever, and yet be completely lost. I could explain how embarrassing it is to become conscious, uncontrollably hyperventilating, surrounded by a crowd, at the pinnacle of adolescent normalcy—the school dance. I could express the pure horror I have felt, when impending doom implodes within me, and I believe suddenly a dark demon is coming down from the sky to kill us all. I could speak of the paralyzing, seeping fear that rules my lifestyle. I could show the blindness that it takes to swallow new pill after new pill, knowing that there is no perfect medication.
But all of this would be in vain. None of these words will mean anything, unless you, or someone very close to you, has epilepsy. Then you will feel the fragility of our humanity as I feel it. This vulnerability is shown to us, one by one, as we age. As we begin to lose what we care about most—people, our memories, our faces—we slowly see death, and how close we are to it. However, to people like me, there is no normalcy, no safety. These things, that others blithely take for granted, are our blessings. We are all so fragile, and it is so precious, but we do not appreciate it until it breaks.

People are like flowers growing in an untamed garden. With each day, we must find the sun in a new place. We must bend with the wind, and drink in the rain, otherwise wither away. Each day that we find the sun, it's just as soon rolled away into night, and the next day we begin again. Some people are tough like dandelions. They can withstand strife, thrive in challenge, and retain their own sunny beauty. But some people are delicate like orchids. These people require careful tending, and have a strange beauty, like creatures from another world.

I have a secret—I am an orchid. I am still learning to be a dandelion, and it is so hard. I cannot bill myself as some kind of heroine, because I have hidden from the truth day in and day out. The secret is that the more rain and wind and weariness I push myself through, the stronger and feistier I become. In my brokenness, I prove to myself that I am meant to be alive. I am what I am. I have what I have. Those facts cannot be disputed; despite the countless ragged breaths I have wasted trying.

The facts are that I have temporal lobe epilepsy. I believe I have had seizures since I was eleven, but I was not diagnosed until I was sixteen. I have absence, simple, and complex partial seizures. In my seizures, I experience staring, d�j� vu, jamais vu, confusion, trouble speaking, intense fear or panic, euphoria, feelings of heat and tingling in my face, anxiety, automatisms, and trouble distinguishing aural and visual stimuli. Any seizure may incorporate any of these symptoms.

Most days I don't like those facts. I feel weak when I think about those facts, because most days they are overwhelming. But the facts make me strong too, because they are true, and I'm still here. As much as I sometimes feel that I am drowning, I'm not gone yet. I have been so close. I have given up. I have cried until there are no tears and stopped speaking and lost all my friends. I have crawled under my blanket. I have crawled into the back of my closet for hours. I have intentionally overdosed on sedatives during the school year, lost one day, and gone back to school immediately.

There are no words for people when they are that low. Even if I am seizure-free for the rest of my life, nothing can take these memories back. The only way to beat it is to keep going, and prove myself wrong. If I can't do anything else, I just breathe. I breathed my way into this world, and I'm going to breathe myself out. I've learned it's okay to say, "I give up." It's okay to put your head under the covers, and crawl into the back of your closet. All of those things are okay, if it means you keep breathing. I am learning to breathe. It makes me feel as pure and as perfect as a little baby, because that's what we are. We are all just little babies. We've barely been born before we're gone. But this is what we have—we have ourselves, and we have each other. That is all.

We are all learning what it is to be alive as we are living. It is only that I, and those like me, are reminded of our mortality more often than others. This can be terrifying and overwhelming, but it allows us to have a heightened awareness of reality.

This view of life, with a deeper and more visceral colour, is valuable to me. I am in my own world, and it is incredibly lonely; to be unique is truly to be alone. But at the same time, the world I live in is more saturated, more beautiful, more melancholy, and more poetic than most people. My epilepsy has allowed me to fall in love with the heartbreaking world.
This bittersweet little world comes at a price—our safety, our heartiness, and our health. Just as the beauty of the world is delicate, so are we. It is a supreme, alchemic balance. I'm not sure anymore if I'd rather be normal—there are no bitters without sweets in this world. All we have is the living moment. We cannot forget this gracious miracle. We are alive. And I feel so lucky.