Seized Again

By Richard F. Davis

noneAs I was working on the cover, looking at the photos of what our brain neurons look like, I began to think it looked like one of my favorite games, Asteroids, when your goal was to destroy the asteroids before they destroyed your spaceship. That was 30 years ago. I thought how funny it would be to paint into the cover picture a space ship like that to see if anyone would notice it, but the more I thought about it, the more it made me laugh. So I designed my own game in my imagination station and drew them out here for you to enjoy, Ill call it Seizuroids with the goal to destroy all the meteorites called, fear, stress, anxiety, worry, depression, loneliness, and anger before it hits the brain, causing a seizure and destroying all the electrical neutrons. Laughter truly is the best medicine.

• Language: English
• Publisher: Xlibris US
• Release date: Jul 19, 2011
• ISBN: 9781462892570

Richard F. Davis

An auto accident in 1974 ended Richard Davis’s dream of a military career. Since then, Davis has devoted his energies and talents through his artwork. His painting of the U.S. Capital is hung in Washington D.C. and reproductions of Davis’s work have been created for Texas Instruments, the Air National Guard, and the Pentagon. Recently he won the national art contest in 2009 titled “Expressions of Courage” and in 2010 in an art contest titled “Seize the day” with the Epilepsy Therapy Project. He now he resides in Florida.

Book preview

Seized Again

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Richard F. Davis

Copyright © 2011 by Richard F. Davis.

Library of Congress Control Number:   2011910335

ISBN: Hardcover    978-1-4628-9256-3

ISBN: Softcover      978-1-4628-9255-6

ISBN: Ebook           978-1-4628-9257-0

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This book was printed in the United States of America.

To order additional copies of this book, contact:

Xlibris Corporation

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96753

CONTENTS

-My Introduction to Epilepsy-

In the closing of what I would call The early years

College: a moment in life I will never forget

Well-known People with Seizures

The Walk for Epilepsy

From the eyes and thoughts of another epileptic’s life

Seizures at work, a great hurdle in an epileptic life

Stop and Smell the Roses

A Different Perspective

What’s on Your Mind?

What is a True Masterpiece?

Five Years with Trial under Fire

Preparing for This Chapter

The Last Four Years

The Final Chapter

Dedication

If a doctor or people could visualize a seizure within the brain

Taking by Force

Life truly is a puzzle

With Thanks

This book is written with many priceless thanks to the two who never gave up on me. My mother who saw me through the last forty-seven years of seizures and epilepsy. From the days of infancy to the old age that I am, she carried me through the times when being alone and just gave the love and care, the ear to hear was there going through the many times of questions with no answers. She always listened and never gave up. She gave more than all for a son who brought much pain and fear. I can’t say it any better than what Washington Irving said, so I will share it as though it is from me . . .

A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.

Thanks, Mom, for all you have given.

The second great person to give thanks to, of course, is Debbie. A wife who like the country song says, Stand by your man, gave her all to live up to these words. In almost fifteen years, from the time we first met and through the fourteen years of marriage, she has had to be the one to carry the burdens and load of a wife that many wouldn’t do today. Seizures and epilepsy are a heavy load to bear for anyone, but mostly to one who has to live with it daily and never knowing when the next time will come. She was an answer to prayer, and with years of waiting and praying, God brought us together when the time was right. Something that says it all for me was from an unknown author stating . . .

"Woman was taken out of man; not out of his head

to top him, nor out of his feet to be trampled underfoot,

but out of his side to be equal to him,

under his arm to be protected,

and near his heart to be loved."

Thank you, Debbie, for giving more of yourself to be second place. Through sickness and in health . . . and hospitals and home.

No man succeeds without a good woman behind him. Wife or mother, if it is both, he is twice blessed indeed.

—Harold Macmillan

One father is more than a hundred schoolmasters.

—English Proverb

Epilepsy is what took away one of my greatest desires—to make my dad proud. Throughout life, I carried the memories in a little digital program in my brain that epilepsy couldn’t destroy. These memories were based on what I saw through the eyes of a child and proved to me how very important it is that a foundation, the outlook of a father, is built from the very beginning of childhood. I feel a void in my life because I was not able to fulfill that to my own children, so I build my memories on the most important times of my life with my own father.

All I ever wanted to have my father see before he passed away was that he could say how proud he was that I accomplished and succeeded in life a stability, an accomplishment, and a success. Yet I hate to say that because of the instability of seizures and epilepsy, my father saw everything but a stability or success. He saw seizures that were from one end of the line that just a petite mal or an aura to the other where he had to see one of the worst grand mal seizures I ever had. No matter how bad the seizures became, nor how many times accidents occurred, I continued to try to become something with my talent to fulfill what could be a father’s pride. He never saw that. He felt the pain as he watched his son continue to struggle with one failure of a job in art to another. He had to see the college reject me because of being incapable of handling someone with this disease, as they stated. He watched so much pain come when jobs failed with seizures always somewhere in the midst of it. He was always proud of my work, but I could see the frustration in his eyes when there became the periods that were feast or famine. The problem was he saw more struggling. His only way of seeing me to do this without hurting was to set the art aside as a hobby and not a life’s stability.

Except it was the only thing I had to hold on to that I could feel had some value, part of me, and something that I longed for him to say, That’s my son, I’m so proud of his accomplishments and success. He was not ever able to see that. My life lived with precious memories of him, and I wish every other man out there could feel the same way. Yes, we had our moments like every father and son does, but I found through the years that those certain times of good memories far outweighs the bad.

When he was gone away to another country serving in our military, I never looked down on that, but instead felt such pride. My mom taught me an important lesson when she made me sit down beside her to write letters to Dad when he was away. I still hold on to a few cards that he sent me when he was overseas for a year at a time. It was only twice when I was a child, and I always looked forward to the day of his return. His cards were always signed, Love, Dad, with his Xs and Os. (Of course as a child, I had to ask Mom what that meant.)

I tried so hard to fill those shoes through doing my art work to focus on the military history, yet there has been a hollow spot. I wish he could have been alive when I did the painting for the Air National Guard in Maine, and they took me up for flight, I would have felt a little closer taste of being part of it, but it was not God’s plan. It was the only time in my life I could almost taste the memory of being with my father when he was working at the Museum in Ft. Eustis, Virginia. He took me with him on Sunday afternoons to sit in the office with him or just walk around and see the history of our nation’s military. I sat with the feeling of importance at his desk chair. Even as a little child then, I was already setting goals for my future to be just like him. My dream of the future was to be able to fly and be a part of our helicopter aviation, but instead the closest I got was not my dream. It was a one-way flight to the hospital in a helicopter four years ago. Being in a seizure, I couldn’t even remember anything.

I cherished the moments of sitting with him fishing. Even though they were a moment in life, they made an everlasting imprint in my memory bank. The times when he was walking in the parades with the other soldiers and seeing him walk by. I have found that all of us men and boys, or should I say overgrown boys, need to find even just one good thing about our fathers and hold on to that for dear life, to water and nourish that one moment of time until it outgrows over the sad and disappointing ones. I realized that if I thought of the negative points or times with my dad and dwelled on them, my outlook and opinion of him only made the painting in my mind of him to be dark, dreary, and disappointing. Too many of us go there and meditate too long on the bad past. We choose to stay there. I had to leave those places alone because it brought me to a point where I was forgetting the good in him. He showed me the importance of being the provider, the husband, and a father. Often I felt like the black sheep of the bunch, yet he always was like the father of the Prodigal Son who when I came back home, he was there willing to help.

There was a handout paper on a table of Pip printing company in Texas that I have always kept because it made me think of Dad and me. It was good to go back on and compare it to my life because I found it was so true. See if any of you can relate to this.

FATHER

4 years old: My daddy can do anything.

7 years old: My dad knows a lot, a whole lot.

8 years old: My father doesn’t quite know everything.

12 years old:Oh well, naturally father doesn’t know everything.

14 years old:Father? Hopelessly old-fashioned

20 years old:Oh that man is out of date. What did you expect?

25 years old:He knows a little bit about it, but not much.

30 years old:I must find out what dad thinks about it.

35 years old:A little patience, let’s get dad’s meaning first.

40 years old:What would dad have thought about it?

50 years old:My dad knew literally everything.

55 years old:I wish I could talk it over with dad once more.

The words that a father speaks to his children in the privacy of home are not heard by the world, but, as in whispering-galleries, they are clearly heard at the end and by posterity.

—Jean Paul Richter

November Epilepsy Awareness Month

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The meaning of purple: Royalty. Associated with both nobility and spirituality.

"In the past history, epilepsy is not understood, but has been considered

as a spiritual power, enlightening the mind and leaving the body to

places unreachable. It takes the thoughts to royal places where others

cannot reach, many famous people experience this enlightenment to

which physicians cannot understand."

—Unknown

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Writing a book is a very lonely business. You are totally cut off from the rest of the world, submerged in your obsessions and memories.

Purpose

"Every man is occasionally visited by the suspicion that the planet on which he is riding is not really going anywhere; that the Force which controls it’s measured eccentricities hasn’t got anything special in mind.

If he broods on this somber theme long enough he gets the doleful idea that the laughing children on a merry-go-round or the thin, fine hands of a lady’s watch are revolving more purposely than he is.

-James Thurber- 1894-1961

PURPOSE

The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.

—Mitch Albom

When the Lord laid it on my heart to write this book, I would go back and forth to decide whether this would have the spark to ignite the flame and make this a book that would rather light a fire in someone’s heart or a pail of water to put the spark out before it hit the fluid. It is one thing to talk with people one-on-one or in a small group and have your words touch hearts, to hear your words and see your expressions, but to put it on paper has nothing to compare with like being able to put words on a paintbrush and then stroking it onto canvas. When writing on a pad, it all looks black-and-white, just letters on paper. Today it’s letters on a computer screen. No color, no beauty, nothing to catch your eyes and make you long to stare at it and be filled with beauty and elegance. Just words. Yet you know a certain person who at some point in your life said something that made a very powerful impression on you. With that you found that it is the only time we can say, "It’s not just words." In our watching today, we see lawyers love using other people’s words, especially when, Anything you say can and will be used against you.

I was not meant to be a writer, give me a paintbrush or pencil, canvas and paper, and I will paint you a story, something you can look at and think about, but my gift from the Lord was never to be a writer. I see in many ways it was not to be an artist either, yet I accepted it as the gift he gave me. With that I know that this book was placed upon my heart to write about this disability of epilepsy and the fear of losing complete control of memory due to seizures, combined with a talent that God gave me and the battles I had throughout life dealing with many periods of loneliness and fears. I thought of Joni Eareckson Tada who also wrote books about her life’s experiences with her disability and even sharing and making a living out of painting and selling her talent of art. God used her to reach hundreds of thousands of people by sharing her testimony, God blessed it, and she is still being used today.

Through the years, my experiences with a different kind of disability combined with the talent of art, I have been given a heart that longs to share with people about the life I have had to live, fighting with a disability that still has no acceptance or understanding, ignored and oblivious to a greater portion of the world. A perfect example of this is something I read recently from the Internet concerning one who is suffering from epilepsy, I believe due to the spelling of his name, he lives somewhere in Africa. His words were this:

In my country, there are so many unattended cases (seizures), and it stems from the belief that the illness is caused by curses and witchcraft making sufferers really suffer. I hope that something could be done to change this attitude and of course the marginalization of the sufferers. My son is a sufferer, and I have tried to do everything possible to help him, although it might not be enough as this involves finance, which is hard to come by. He gets these seizures . . . he shakes and sort of jerks, and if he is walking, he loses control and falls, injuring himself sometimes very badly, but he never loses consciousness . . . he will end up asking me . . . Dad, when will this end? And I always tell that it will end one day.

I would give anything to wrap my arms around this man and his son, share about my life with the testimony of my seizures and my son also that suffered with seizures, others that I will share with you, and share this man’s tears. I thought, How unique that God allowed me to read this one writing from a father on the other side of the world while writing this one opening chapter sharing the purpose of this book. This is the exact reason I want this to be opened to people of all kinds and all ages. Us living with epilepsy or have loved ones with it suffer with fears of seizures and the aftermath of what happens once the seizures are over. It can’t stop there though. It has to do with how the rest of your life goes on with this disability. The average people see nothing wrong with us, until the seizures occur unless our brain has been so damaged from seizures throughout our life that we cannot function normally without another person’s help. This is what has been my dark shadow throughout life. My Darth Vader.

I feel it is very important to me to defend ones with epilepsy who have suffered with bad experiences from doctors because our lives are literally in their hands. I fortunately was recently chosen to experience doctors who showed no feelings for their patients, yet as I share with you about several other times in my life, God also allowed me to have a several doctors who were a great encouragement at a time when I truly needed it. They made the time to listen and be honest outwardly. I sense and feel such a great difference in the medical field with doctors and at times the overall medical field in just the last seventeen years from the first brain surgery I experienced up to the most recent one. The people in the doctor’s offices and hospitals also seem very different, not personal at all. They gave me the feeling it was just a job and not something they are doing to care about patients. I’ve experienced many years of living in and out of the hospitals and doctor’s offices.

I know a similar experience with doctors goes with any disability or sickness, but I am focusing on what I have had to personally hands-on experience and know about. After watching a movie recently, an older one in the store but new to Debbie and me, titled The Note, it laid a whole new vision and thought of myself with this book. I am not a writer like she was, given the gift to do, but she reached out to get involved with other people and start a conversation in the newspaper looking for one person, the individual that the note was written to from another who was killed in the plane crash. The purpose of her writing was to encourage and bring some hope and peace to this one individual who was left behind. It was opening up to others that were readers as well as opening her own heart personally, by just being herself and sharing her personal feelings and experiences. It sounded just like how I was feeling during the writing of this book.

A friend had said to me while writing of this book, Just don’t change yourself, write like you talk and pray, share your life just as you do with the common people, and don’t try to be a writer who changes his personality just to please the book companies and publishers making it their way. With that I settled down to share my heart and thoughts because I see such a great need out there now. From reading what others experience with their seizures and suffer from their own experiences with doctors on the Facebook under epilepsy, I found the drive and urge to write this even greater. More like pouring a little more lighter fluid on the flames. At first, I thought my main focus was just on epilepsy, but as I carried on, it was living with a disability that is still in the dark ages, a life of disappointments and discouragements with my talent due to seizures, and many times my heart and soul were broken due to hard times that came from the causes of seizures with epilepsy. To share how I lived an average life with this disability between times when I saw hope of them under control, to the times when I didn’t want to wake up the next morning because of having one. Living a life with many dreams and hopes with a talent, but a handicap seemed to be the stake in the ground to keep the tent from moving and talent from growing.

I know that this desire and passion of writing this book did not come from my own ideas and thoughts. Just like many songwriters from some of our favorite old songs have witnessed, and other authors of various books have testified, it was a longing and feeling of urgency from God. A thought and idea that was placed on their hearts from God and to write it all in song or words to share about a certain time of their life when things were suddenly turned upside down, and they had to walk through the fires, while others had gone through the fires, and then wanted to write down a song, poem, or book in sharing how God carried them through the fire. Examples were from John Newton who wrote the famous song Amazing Grace and also Keith W. Ward who wrote The Solid Rock. I wish I could express to you my life’s experiences of both sorrows and joys on canvas, to me it would be like taking a large piece of stretched canvas, laying the paints all to the side of the drawing table, the brushes within reach as if they were part of my hand, and the airbrush resting on it’s side mount, ready to write a story with a brush and wide range of colors to share joy and pain with everyone on canvas. The dark colors to be when the times were so hard and pain was so great, and other times of joy would be filled with only bright brilliant colors. Streams of red paint to represent blood would be going down from top to bottom of the canvas in different places, while clear varnish was making runs in various places to show the sign of tears coming from both joy and sorrow over the painting. I couldn’t go to bed at night after writing this book without the thoughts and ideas of a drawing or painting that would go with what was just written.

I want to gather your attention to the key intention to writing this book. What led me into writing this section titled Purpose as the opening of this book is because of the most recent seizure I had that lasted three days, leaving still tiredness in the thoughts and physical condition as I write at this moment. Probably the worst seizure I have experienced in the last thirty-seven years. So much is on my thoughts to put this into a perspective for you to try to understand what is in the heart of, I believe, the feeling of many other people suffering with epilepsy or loved ones who have to live watching this helplessly, like how my wife and mother had to do for me.

The average American tries to hide the disease of epilepsy. It is like a plague they do not understand nor have any answers to. Thus it is avoided, as though it doesn’t exist. I know from meeting with others who live with this that it puts it into perspective exactly how others with this disability feel both emotionally and physically.

Points that bring this together are what we see on a daily basis.

Commercials on television that constantly talk about cancer. Walks for cancer, mainly breast cancer, advertised here in Florida on television daily. Heart disease and walks for life that pertain to the heart. Lawyers that advertise daily about suing for all different kinds of sicknesses or accidents also try to convince people that they can help a disability by going after the doctors or physicians. Even now there are commercials that pertain to animals that need to be adopted or helped. Yet one thing you never hear about is epilepsy. It does not fit into any other category. I was sick when I looked onto the computer for SSDI in concern for my epilepsy. Our government. I was frustrated when I read these things under their list of disabilities . . .

Asthma, Migraines, Arthritis, Back Problem, Cancer, Cerebral Palsy, COPD, Diabetes, Mental, Anxiety, Bipolar Disorder, Depression, PTSD, Mental Retardation, and Schizophrenia.

Where is epilepsy? Where is seizure disorder? I have laughed with others in a joking yet serious manner, knowing that seizures bring on depression, headaches, arthritis, after all the grand mal seizures with beating my body on the ground, definitely anxiety, and with my own experience from the grand mal seizures, back problems. So I would ask, where is the square box beside that says all the above? Of course I’m sharing my expression of frustration, only because epilepsy is not noticed nor recognized at any listings of disabilities. I could not understand why doctors and lawyers have not tried to get this into action and recognize this disability, making it open to the public so we can be acknowledged and not ignored and still hidden in the closet. I tried talking with eight different lawyers, three that deal with only epilepsy itself, but they could not help at all unless I have not worked at all, which lead me to realize why America is the way it is today. We want to work, but when seizures come, they put a complete stop from our brain working normally and that leads into our whole body not working correctly. So we need to be seen that many of us with epilepsy can work a normal life between the seizures.

Another perfect example of this came from meeting a young man on the city bus during Christmas season on my way to work. My normal self, like most other Americans today came with the attitude of just plugging my iTunes in my ear and avoiding the rest of the world, I was already disgusted of the way the Christmas season had destroyed my love and joy of the season because of the attitude of people at the store every day, so I just wanted to do like the old song from Dobie Gray titled Drift Away did. Except this young man needed someone to talk to, I looked at him sitting across from me in the entranceway of the grocery store, and before I was able to turn my music on, he started talking and telling me that he was on his way to work. I noticed his inability to use his right hand and arm normally, but that is not what was on his mind. He told me he had just started having seizures.

I want to try to put you in my place and see how you would respond. I will try to quote it to the best of my ability. He said, I’m twenty and just started having seizures. The doctors put me on medication called Tegretol to try to control it, but it’s not doing a complete job. I have two younger brothers, I’m the oldest, you know, and they have to watch me when I have a seizure. My mom is real scared when I have one, and I feel like I’m not much help to my mom and brothers when I have a seizure, and I’m who they have to look up to. I’m not much good with anyone when I have one. Now my mom has left the man she has been married to, and so we are all alone in a new apartment. Mom wants me to leave and get an apartment of my own because I’m old enough now.

I don’t know how you are with people, but my heart sank. Since I knew all about living with seizures and knowing what children go through with broken homes, I felt an aching and longing of love for this young man. Suddenly realizing that God didn’t want me to plug in the iTunes now and instead just listen. I asked him how he was dealing with his mother splitting with the other man, and he responded, It’s hard for me to talk about, I mean . . . I liked him, and he’s all I’ve known . . . I really don’t know how to deal with it. My real dad left when I was two and had never had any contact since then. I continued on about his job and asking him what he did, seeing his inability to use his arm and dealing with his seizures. He shared that he worked in the back folding boxes at a printing shop. He worked every day. He was scared about the days when he would have a seizure at work. I just listened and tried to encourage him, listening was the most important thing then. I met him four other times, and we talked about his condition.

It brought me the exact reason of writing this book. He too was living with fear, insecurity, feeling helpless and hopeless, trying to do all he can to work. He wants to work but fears losing his job from seizures. He’s carrying the pain of being the oldest but having a burden of being more a problem than a helper. He was feeling anxiety and fears and since the epilepsy was fairly new to him, he was more fearful. He also explained how the doctor didn’t explain too much about epilepsy. My hope and point of this struggling life with seizures and a world that is ignorant of this fearful disability.

I have met many others with seizures that came from childhood and were unable to ever reach the level of a person with normal brain activity. Others who have had seizures throughout life and, like me, memory tends to go and the ability to work or do normal things like driving and doing jobs we would rather be doing that our disability holds us back from. So why isn’t epilepsy listed in these topics? Is it because people don’t want to understand or recognize epilepsy, and since it is not completely able to be understood it is avoided? They do not understand that many of us, like myself and individuals I have spoken with, can be able to do the average things, even at a job, to a certain degree, they feel you are not qualified to receive assistance because you can work . . . but with many limitations.

They do not see us when we experience a seizure and the aftereffects that last for days that make us unable to do anything. Thinking, working, sometimes physical damage, and headaches that can last for days. Some of my physical effects have lasted for weeks. People look at the fact that I am able to walk . . . ignoring the fact that I can’t drive due to seizures, which brings a great limitation to things, that I am able to work . . . until I have a seizure at the job or at home that effects the ability, that my physical appearance seems normal . . . except they have never truly experienced a seizure to equal to it. Epilepsy is definitely a disability all by itself. One thing I wish doctors, physicians, and all people in general could understand is that just because you cannot see seizures in all of us with epilepsy daily, we still have a disability. Many times people have asked me what my disability is . . . until they see the seizure and experience it firsthand. Then there is no question. I have experienced auras, but I just don’t tell the doctor or anyone with me because I am the only one who feels it and knows it’s happening. If my own wife knew how many times an aura came, she would just feel like I’m driving her crazy. No one else who is with me during the time an aura is happening can see anything wrong, yet the warnings go through me at times constantly. I just act normal and hope one of them does not lead into a petite mal seizure.

"There is no greater sorrow than to recall in misery

the time when we were happy."

—Dante

A major enemy of this disease is loneliness.

I have lived a life of it and see it daily with many other Americans who don’t even have epilepsy. Sometimes loneliness even comes when we have another in the same room. As I told Debbie after finally being able to gather my thoughts and mind back together and having my voice returned after having a Todd’s paralysis seizure, I honestly don’t feel there is any other disability or sickness greater than epilepsy.

Most will disagree, including doctors, but let me try to bring this into a picture that you may understand from my drawing table to your living room. Even though many people’s minds are set in their own disability or kind of sickness being the worst, as the saying goes, "First goes the mind, and the mind is a terrible thing to waste."

If the brain is gone, the functions of the body are gone. Just ask Debbie or any other witness of another person who suffers with seizure disorder or epilepsy. You lose total control of every part of your body, and some are disabled for their entire life, leaving them with inability to function because of epilepsy or seizures. Everything your body does, all that you do emotionally, physically, mentally, spiritually comes from your brain—your intelligence comes from the brain, every action and emotion you have comes from that one source. A great portion of my life has been with loneliness because seizures kept me from being active with other people of my own age, and later in life, it kept me from being able to drive and holding me back from being active with other people.

Giving me that, trapped feeling, being unable to get beyond the four walls of a room or a house. It closes in that feeling of loneliness—living with something that I myself cannot completely explain what I felt or what exactly happened, what was going through the brain then and how it really felt both emotionally and physically. The physicians are making their big money because they are supposed to have the answers to our sicknesses, diseases, and disabilities. Yet the neurologist I last had said that, the brain is the one thing no one will ever be able to completely understand. This gave me my assurance to trust my life in God and not a human physician.

An example of this loneliness and feeling of trapped

is like a chess game.

The little pawn is only able to take two steps at first, and after that, he can only move one at a time. Handicapped. If he wants any contact, he is only able if it takes one step at a left or right angle with intentions to kill the opponent, and it has to be forward only. The only thing that could save him is another one of his own army to kill the other before he is. A perfect example of the trapped feeling with seizure disorder. Handicapped. Trapped.

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The castle is limited to only going straight lines forward, backwards, or left and right. Disabled with limited ability. He can make longer and quicker moves to reach his destination or contact with another, yet he is limited. One wrong move and no one to save him, and it’s the end of his life.

The knight has his own issues too. He has one advantage that he can go over another one’s head and move to another space, except it’s always only one movement, three steps and one to the left or right. He can go forward, back, or left and right, but only a few steps at a time, and it never changes. His disability is permanent. Many times his purpose seems worthless, meaningless, unless he can reach that goal position to get his job done and save the king . . . but with limitations.

The bishop, like the castle is able to go only one way, his is at an angle. He too can go as many as he wants, forward and back, left and right, except it always has to be at an angle. It may be the cost of his life to save the king, but if he did it, it has to be with only with one direction. Frustration. Limitations.

Then we have the great queen, who is able to move any direction. As far as she wants. Her only limitation is being unable to do the same movement as the knight, yet she has a greater chance in life on the board with the purpose to keep the king safe and alive. Only one disability of the movement of the knight, which is not much of a limitation at all. When playing, it’s like this woman has it made. "Save the king." A purpose with no limitations.

Now we come to the king. He has a great disability of being only able to move one at a time. He can go any direction, but has limitation to one step. As Bob said on the movie What About Bob, he has to take baby steps. He is totally dependent upon everyone else to save him. He has to trust and depend upon everyone else, and they are doing all they can to help him and keep him alive. He is totally taken care of. Accepted and protected.

To me, life has been a game of chess. Many people will say to themselves, That’s no different from any other person with a disability or even life in general. Loneliness is such a common word among people today of all ages. Except I have experienced every kind of move in the life of chess. At one time I had brain surgery that was successful, receiving my license back, no signs or feelings of seizures, able to concur anything, freedom, independence, the only time of my life I ever felt such hope, other times I was able to do some things that had limitations, and like now, I am like a pawn that cannot move very far. It seems if I can move, there is almost always someone else standing in front of me blocking my move.

The hardest thing is to truly have known what it is like to be free with nothing holding me back, to feel for the first time like all my friends from high school and family able to have nothing keeping me from dreams, tasting the thought of being off of medication totally was near, knowing I didn’t have to call for a ride or live in the cold days, rainstorms, or hot sun to walk in, to feel that independence and freedom. Then it came back and worsening through the years. As I laid in the hospital last time and not knowing the future, I thought how I would rather have not known what it was like to be free from seizures and that ability to do just as any other average person, than to experience that freedom and suddenly feel imprisoned again. Feeling . . . Checkmate.

There have been many times in my life that seizures limited me to only going one direction. Throughout life, the directions changed at various times but still leaving me with one or more limitations. In hospitals throughout life, I felt like a pawn, only being able to move one step, and until something happened to the one in front of me, either I had a chance to destroy the one on the left or right and move forward or nearly being killed myself. Similar to this moment in life with seizures and no doctors with any answers and no direction.

Times came with some hopes and answers, but they were pushed back due to a seizure that put a hurdle in the way, causing the leap to be too high and many times caused the damage, which lasted for life. Caused by running into the hurdle instead of stopping for it due to fear of embarrassment and shame. One time in my life I did experience what it was like to be like the queen and go anywhere, anyway, anytime, and with anybody. It was a period of thirteen months with only seven months allowed to drive. The one feeling I know I will not experience again in this earthly life.

It was a momentary feeling of what it will be like to not have a disability, to not have to be dependent upon other people nor to have a complete need for others. It wasn’t long enough to enjoy life to the fullest. When I thought the last chapter was written and a new book was being started in my life with fresh new exciting abilities, the chapter did end with a torn page and the ink spilled all over the writing, never to be finished with the words, And he lived happily ever after. The pictures and pages of beauty for the next chapter waiting ahead suddenly became put away in a folder, not knowing if they would ever see a complete ending.

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Instead the next chapter became like the old Hulk program that was on television from 1977 to 1982 with Bill Bixby and Lou Ferrigno. I was having the physical problems, the emotional problems, the uncontrollable seizures, and the feelings of loneliness like he did. Continuing like him, always leaving on the road with no direction and no final destination, seeking for an answer to the illness, meeting many people with hope, but always ending with a dead end but continuing on with hope for answers.

It was at these times and places that I found that God was the only one that cared. I had no one, even in family, during that time where my tears could pour out on. I found no doctor or person who could help to carry my load of physical pain and emotional heart aches. I found people could not be dependent. I only had one alternative to stay alive without ending my own life and that was opening up to God. People with hope became to look at my situation with seizures as hopeless. Friends became ones who didn’t understand and suddenly became ones to judge that I must have brought this on myself. I couldn’t carry the weight. Like many I see in this day and time, we all need someone to help carry our physical and emotional stress and pains, and I found that there was not a human person who could completely help or understand epilepsy and seizures, leaving emptiness and loneliness as the center trap. Yet God was always there to catch me when I fell.

"When we truly realize that we are all alone is when

we need others the most."

—Ronald Anthony

Others try to avoid understanding what the disability is. Why I couldn’t just play games or go to places with activities like they do. Even to go out and having a job with my profession that would take transportation, depending on someone else, not understanding that it is possible that I may never be able to drive again. This is the game of chess with always wanting to be able to move like the queen, but in reality I have to look at making moves like the bishop or the castle in hopes to make it to the end of the board and remove the other pieces in the way of my hopes and dreams as an artist and illustrator. To teach again and to help other people with similar circumstances, not allowing epilepsy to put a dead end to life.

When Debbie and I went to the walk-a-thon for epilepsy last year, very few showed up. Yet on television and the newspaper, you see thousands walking for cancer or heart disease. Why are we so avoided? It’s because people don’t understand, do not want to understand, and most of all don’t care to understand. We are a secondary compared to their opinion of what they consider as a primary disability. Like a physician said, Epilepsy is still in the dark ages.

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And I look again toward the sky as the raindrops mix with the tears I cry.

—unknown

I have let this quote replay in my mind many times. It’s not just for my sake, but for the sake of all others who live with this thorn of epilepsy. A verse from the Bible that always meant so much to me was You have kept count of my tossings; put my tears in your bottle. Are they not in your book? (Psalms 56:8) I have held on