“But it’s no use now,” thought poor Alice, “to pretend to be two people! Why, there’s hardly enough of me left to make one respectable person!” —Chapter 1, Down the Rabbit-Hole, Alice in Wonderland by Lewis Carroll
The whole purpose, I once thought, in writing these blog entries was to provide a small amount of direction toward “surviving” this condition we all live with in one way or another. We are either individuals with Temporal Lobe Epilepsy or caretakers, family members, or friends of those with the condition. I can’t imagine anyone else reading, much less caring about, what is written here otherwise. Sometimes I get messages with questions or directions–I had an experience and someone else wants to know how it was handled.
Lately though, it’s not so much the help as it is identification of an issue. I see this theme run through other blogs and social media posts. A person is not so much telling you what could be done about an issue as simply identifying it. And there is a comfort in that. We are all reaching for information and a measure of understanding.
Here I would like to point out that to be honest in this space, sometimes you move into uncomfortable territory. That applies to the subject today. Uncomfortable all the way to potentially heartbreaking.
Social media seem full of this issue and those surrounding it, issues of being who you are regardless of the illness. At least that is what it boils down to for me. And here is where I explain my experience, with the understanding that I cannot speak for others.
I believe I slowly became two people with the onset of the illness. There is the person that I allow others to see and the one I live with inside myself. People without TLE may get away with this, but it can get very unhealthy for those of us with it.
My outside person lies about her condition when asked, frequently accepting situations where she is expected to be quiet about her condition so she doesn’t embarrass others with the word epilepsy, so that she doesn’t make a big issue about an issue that is a big deal to her. In other words, my outside person feels pressured, rightly or wrongly, by family members and friends to act as if she is completely healthy.
In my mind, they seem to think that just the knowledge that I have this condition is enough and should end all communication about the issue. Talking about it, referring to it, even cautioning about it seems to make some people uncomfortable and, in my opinion, puts me in a bad light with others. So I don’t talk about it around others. I am not proud of that. And that silence also is a trigger.
My inner person is frequently angry, hurt, and distrustful. She experiences a lot of physical pain on a daily basis, but she is afraid to “burden” others with this fact. She cannot express her concern over potential triggers without feeling shame. She cannot let go of the idea that if she keeps it in, it will go away, maybe. Everything is a balancing act. Everything is a tradeoff. When that information, or let’s put it another way, her truth, escapes, crushing guilt and fear follow. And frequently accompanied by her worst expectations.
Why do many of us do this? Why can’t we be completely open about our condition and comfortable with the way we have to navigate life? The only reason here, on this page, is mine. Here’s why I started down an unhealthy road despite a therapist and a saint of a husband.
First, when my epilepsy came forward, exploded, or was triggered (it doesn’t matter how you put it, it was still like dropping an atomic bomb on my life), I lost most of the things that defined me at that time.
I lost my job. Actually, I quit my job when I started going out of control and saying all the things out loud that everyone else keeps in their head. I was smart enough to know I could not continue in that state, that my condition had me spiraling. Recently, I saw an amazing interview with Linda Ronstadt. She spoke of knowing about her vocal limitations and then finally ceasing to perform as a result of the way Parkinson’s had affected her voice. That interview was heartrending for me because I associated so strongly with her words. I was never a Linda Ronstadt at work, but I had my achievements, my creativity, my hard work. And then I didn’t. So I lost the work.
I lost money when I lost the work. I lost freedom to travel and make an array of decisions when I lost the money. I lost my identity of self-worth with the loss of money and work. Not very noble, but there it is.
And then I lost people. I had all kinds of friends that I enjoyed, connected with work. These people left my life when I stopped working because I made them uncomfortable with this newly emerging and weird condition, or because my limitations were too hard to deal with, or all of the above. I experienced co-workers who stepped back, physically recoiling at the word epilepsy. And they never came near me again.
And then there were the complicated family issues. My condition had raged out of control and damaged close relationships. When people are hurt, they often ignore the causes, even if those causes might be medical. Some of these people will never forgive me. No matter how hard I work, that time will always be a millstone around my neck.
Finally, my experiences with neurologists were complicated and sometimes harmful. After working around them for years, I discovered that being a patient was a nightmare. In my experience with at least six neurologists, no doctor, no matter how brilliant, can give you good and humane treatment in 5 to 7 minutes twice a year. Each time I saw a new neurologist, I had to to start all over again, because each doctor wanted his or her own CT scans. Each new doctor refusing to look at my medical information from previous treatment courses. Refuse. Refuse. Refuse. Order new tests. Repeat the same ones clearly listed in my medical records. Treat me as less than a person. Add in autoimmune conditions and the inability to take medication and you have a recipe for disaster. I got mad and frustrated and continued to change doctors until one almost killed me. That stopped the whole unhealthy cycle. In the interest of honestly here, I was probably their worst patient.
When I finally got some balance back into my life, I looked at all the devastation that my illness brought on and decided, subconsciously apparently, to minimize the damage by pretending everything was the same as before with a few restrictions such as fluorescent lights. That’s how I split myself in two. I got so used to lying that I lied to my husband, the one person in all this mess that knew what was happening, that knew all the back stories, all the frustrations and humiliations, that knew me. He set up a rule forcing me to be honest with him about how I felt whenever he asked, which was many times throughout the day.
And I am ashamed to say this, but being honest is hard. It brings on guilt and shame, as ridiculous as that sounds.
So, why am I telling you all this about what I have lost. After all, everyone who reads this blog, who struggles with this condition, has lost so much more than can be stated here. I am trying to point out that all of us are prone to this unhealthy behavior. This condition boasts a high percentage of individuals with autoimmune conditions, with depression, with complicating illnesses, more loss than can be measured in a simple paragraph. We all lie to protect ourselves, but we need to stop and accept ourselves for who we are and what we struggle with day after day.
And we must love ourselves and respect ourselves because others won’t. They may never understand, and I say that in the most compassionate way possible. They may never understand because they can’t experience it.
Years ago, a family member I loved very much told me that she was developing fibromyalgia. It took her job, her energy and her freedom. And I didn’t understand it then. I tried, but I just couldn’t wrap my head around what was happening to her. I wondered if she was overreacting, which a common reaction from others. She was extremely successful at work and very active and then she wasn’t. I didn’t get it then. I do now. But probably only because I have a similar condition, Sjogren’s Syndrome along with my seizures. I now get the brain fog, depression, severe muscle aches and so forth. I get the devastation.
We can’t expect others to live in our world, to understand and sympathize. But what we expect is respect. We should be who we are and not a split person out of fear. And we should understand that as sad as it is, sometimes things can’t be put back together.
Now, more than any other time, we can know that there are others who have made the same mistakes, who have had their lives blown up, who have broken things and lost people. And who have come back from it to see their lives in a new light. We can all have this.
Love yourself for what you have been through. Love yourself for who you are.