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Each of us has an intense longing for others to accept us for who we are, regardless of our health, appearance, talent, education, race, or religion. That longing, or need, drives much of the daily lives of everyone we know. The need for acceptance for those of us with temporal lobe epilepsy is a real and almost tangible goal, no less in authenticity or intensity than the goals of others.
And yet, it is not like theirs. Some people look at us and see only the face of the condition. It defines us, and our true identities fade behind that label. On the opposite end of these people are those who either openly doubt the existence of our TLE, or skillfully discount its effect on our daily lives, which requires us to take a defensive position on a regular basis.
The first group robs us of our individuality, while the second turns us into needy liars.
The worst thing about these people is that they move about within our personal boundaries. They are our friends and family, our co-workers, or fellow church attendees. They could be our parents, our children, our friends.
My TLE diagnosis came in 2005 when there was very little information about the condition on the Internet or in readily available medical books. My health information degree required extensive classes in all sorts of conditions, including neurological ones such as Parkinson’s disease, but I had never heard of temporal lobe epilepsy until the day of my diagnosis.
Several of my neurologists were not familiar with its symptoms and were not prepared for the way the condition presented. They tried to treat me as if I had Bipolar Disorder or Schizophrenia, despite the fact that the drugs used to treat those conditions just made my condition worse.
My co-workers did not know what to think. My friends were just about as confused.
So, why should I complain of not being understood if the condition only recently has been brought into the spotlight and is still relatively unknown? Here’s why. This blog seems to be the only outlet I have, other than complaining to my husband, who, by the way, works hard to get TLE information into the public awareness. In the past, I have tried to write something uplifting or informational on this site, but after months of being sick and seeing what comes from online sites that seem only to push drugs instead of awareness and information, I am now just pissed.
So, in exercising my freedom to express myself in my blog, I will say here and now that I struggle daily not to let the epilepsy rob me of my identity. I manage my condition through my lifestyle and the avoidance of triggers, because I am unable to take the medication that is supposed to control seizures and reduce pain.
Oh, they work for a few days, maybe even a few months, then they go bad without warning, causing suicidal impulses or intense pain, advanced muscular weakness, or skin discoloration. The horrible thing about being drug intolerant is that I have experienced relief from my seizures and my pain just before the drugs go bad, reminding me of what it’s like to be “normal.”
Each day, I management my condition by myself, which is something akin to walking a tightrope. It seems hard not take the wrong step and fall off. And it becomes so much a part of my life that it also is difficult to have to hide it from others as a price for social interaction.
Here is what I am hiding, and I am willing to bet there are many others out there hiding the same things. I have Dante-like visions that give me horrible headaches and make me sick to my stomach. I have no doubt that these visions are related directly to TLE. I say they are visions because I am awake when they come, and there is nothing “dream like” about them. It is “the other”, whatever that is. Many times they are frightening and leave me with a sense of foreboding or downright fear.
I have problems with electronics, all kinds of lights from natural sunlight to fluorescent, loud noises, and crowds of people. I have frequent migraines, horrible stomach aches, confusion, depression, and irritation at others. And, finally, I have unrelenting, daily nerve pain throughout my body, making activities often difficult.
Those of you who have pain or live with someone in constant pain, know that it can take over your life to the point that everything you do or even think about is centered on your level of pain at that moment.
With all of these issues, I may be unreasonable in my expectations that others accept me for who I am and not for my condition. But, I still have hope that one day it will happen. In my perfect world, I would like to deal openly with my condition and not hide its effects or let them consume me. There is the thought that if I could simply be what I am to those I know, I could handle everything else better. Perhaps this is a naïve belief or hope, but someday, whether it is through public awareness or personal triumph, I hope that level of openness and acceptance becomes available to me.
If you are reading this blog, you probably have TLE or are living with someone who has it. I hope that you are able to gain acceptance in your life.