April 8, 2010

Tell Me About Yourself...(my 1st posting, reprinted)

It is not an easy thing to talk about one'’s family. Conflicts abound and committing fact to paper seems to fall short of the true experience of family life. Each member of my own family is more significant and more powerful than the basic relationship sketch. This is because I am a product of the contextual elements of my life among my family and from within my disorder.

I had two parents. My mother was the most beautiful woman on earth and my father the world'’s most handsome man, and I belonged to them.

Their first child, my older sister, was heroically disabled: the circumstances of her birth were remarkable enough to gain her press coverage for an entire year. Anyone and everyone could see that she was blind and her condition pulled on the heartstrings of them all. I was three when my disability surfaced. No one could tell, unless I was in the violent throes of a convulsion, that anything was amiss. My family overcame their distaste and fear of my epilepsy and cared for me, with the caveat that I would outgrow it one day, if I willed it strongly enough.

A remarkable feature of my life both as a child and as an adult is anger. Not the casual anger that gives expression to the mix of frustration and pain as when one strikes her thumb with a hammer, but a flickering, tentative wisp of emotion that ignites over time and across circumstance toward an explosion, which leads inexorably to oblivion. Owing to the nature of my condition, epilepsy, and the location of its focus in my brain, the anger I sense is often a warning for the onset of seizure activity.

As the sensation grows, I feel an impending doom, a kind of darkening on the spiritual horizon. It can be overwhelmingly intense, stimulating morbid thoughts so that even as a child I knew what it was to contemplate suicide; and I have been long terrified that I would one day relent in the throes of such thoughts. The nearer I come to the explosive event itself, the keener the inconsolable sorrow and sense of desolation become. And then, when the pressure has sufficiently built from within, an explosion of some kind occurs.

Commonly, it is the convulsive action of a tonic-clonic seizure. Sometimes it spends its built-up energy in a less harmful way, as an uncontrollable tremor, a momentary lapse of consciousness or a strong sense of deja vu.

Regardless how the energy spends itself, the end result is the distortion of my life's continuity.

I am certain now that I adapted to living within this distorted reality: I employed tricks of personality and intellect. I learned to read cues in conversation and fill in the empty spaces in the continuum for myself should I lose consciousness briefly; to ask clever questions that would provide me with answers if I didn'’t know how to respond or, to glean from the questioner and his question some nugget that would allow me to make an apparently insightful remark to someone else in the room---in other words, stall, distract, and delight. In so doing, I could only be accused of eccentricity, but never disability.

I transformed myself purposefully, at the age of twelve years, from an introverted child to an extroverted teen so that I could brush away any lingering mark of epilepsy. The urge to transform myself into a perfect being was motivated by a strong sense that I needed to vindicate my mother from the disaster of having two disabled children.

This was born in me one moment when I was about four years old. My sister'’s worth as a human being and my secret understanding of my own worth, as well, was delivered as a casual comment between two women walking opposite my mother, sister and I on a public sidewalk: "“Oh, look how sad...if I were her mother I would have prayed God she had been born dead."

My connection to my mother was primary and endowed with magic. Not fairy-princess magic, but the magic of mythic action: my mother was the one, I believed, brought me back from the terror and oblivion of each convulsion I suffered, and I further believed that without her there to bring me back, I would not return to consciousness. I would remain trapped inside an unconscious blackness until I died.

The two women'’s exchange began slowly to erode my confidence in my mother'’s love and loyalty toward me. If these women from the outside world felt that way, then did she? Did she pray that God would take my sister and I? Did she pray God to take me? Perhaps she did: there was a third child born to my mother and father, also disabled, but she did not live beyond six months of age. She died in our house and everyone said she was better off now and with God. Her death seemed to underscore for me the possibility I was treading on very thin ice as a disabled child.

It had been promised to me that if I willed it strongly enough, I would shed this condition myself. Even my mother, who truly knew better than did the rest that I would never be rid of my condition, suggested that I might try harder to “will away" the onset of convulsions. But, I never seemed to try hard enough and so, in the end, all I could feel about myself was that I had failed. Solace for me was to simply not talk about it any more with anyone, except to mention from time to time that I had once had epilepsy when I was a child.

I was 16 years old when a small town doctor told me I had been cured, because I had no convulsions for over two years. Even when the convulsions returned before I turned 17, like my family, I dismissed them as non-events and clung to the notion I was over the epilepsy for good.

If I could but make the world believe I was perfect and normal, all would be secure and safe. Certainly, the exchange between the women on the street was a powerful one and told me that if I was to feel safe in my own home, among my own family, then I must not be disabled. Since my sister had a value to my mother by virtue of the sympathy she garnered, she would be fine, as long as her existence was an anomalous one. But it was up to me to accommodate and adapt out of my epileptic state. If I had the will, certainly, I could do that.

The truth is, I cannot do it.

I am epileptic. I am not a person with epilepsy, nor am I someone who happens to have epilepsy. My memories are colored by it, just as many of my memories have been obscured by it. I cannot recall a time in my life when my epilepsy was not a part of me: when it did not add to or detract from each experience, decision or act, and it has influenced every step of my development as a human being.

There are still those who feel I am passing as disabled, because I appear whole. They see nothing at all wrong with me. Others believe with an equal conviction that I am malingering, nursing the claim of a disability to achieve some secondary gain from the status. Neither is true, and yet I have experienced this suspicion since I was a small child, whose only society was the family circle.

Even as I aged and moved into conventional society, the features of my childhood experience tagged me: that singular comment from a passing stranger on the street remains with me, as does the distinction between my sister'’s heroic blindness and my ignoble epilepsy. After all, there were no medications that would or could be offered my sister to remedy her blindness, but I had only to take my pills and I might be cured.


arthur.grant said...


Great blog! Thank you for letting me know about it.

Arthur Grant

Kris said...

Your blog reminded me that as a person suffering from the difficulties of trying to be "normal" in spite of my having epilepsy I am not alone.
So, thank you!

neebee said...

hey there paula...this could very well be how one of my friends felt, as she was growing up with epilespy--only she watched sisters that did not have anything "wrong". Her mom, I do believe was helping her, I hope, but there was a large communication barrier--I am very very, sure that she felt different--and yet, she never was able to say why, and I wished to understand her, but I never knew of her epilepsy until this year...

last note: after years of wondering why I had to "catch up" with other kids, as my learning was somewhat different--I can easily understand how it feels to appear "whole" to others, yet, in a sense, not be--in my case it is some kind of dyslexicness...it makes you grow up learning to have compassion...you learn to know that others have damaged nerves, or cells inside--yet, because it does NOT show, they are branded a liar by others...

keep on your quest to get epilepsy out into the light, and seeds of inner feelings brought to light with it--throwing shame, to the wind, never to be seen again...

Anonymous said...

The best blog I ever read and I understand how you felt about Alice in Wonderland and the other books.
I just never voiced it .

Your writing is beautiful

May you be blessed