A Psychosocial Assessment
by Camille Pierce
"People with epilepsy are challenged to improve emotional ups and downs. One's resiliency in the face of seizures increases self-confidence and nutures a positive social attitude." - Camille Pierce
Many people of both sexes and different cultures who live with various types of epilepsy or seizure disorders, don't know how or are afraid to take responsibility for their neurological health needs. The Mosby Medical Encyclopedia (Revised Edition) defines epilepsy as "a group of nervous system disorders, abnormal behavior, and blackouts." Emotional stress, pain and suffering, can be physical and psychological burdens on those who live with epilepsy and other neurological disabilities. The Clinical Psychology Handbook, 2nd Edition, 1991, Pergamon Press, Inc. says, "The study of how individuals manage stress has provided an additional opportunity for health scientists to examine the relationship between various coping responses and health... Such interventions have been designed to modify emotional, behavioral, cognitive, and physiological components of stress."
One's ability to cope with emotional stress in any type of mental health or social environment may depend on their level of optimism and general behavior. Advocacy for appropriate medical and psychological treatment for people with seizure disorders is most effective when supported by compassionate doctor/patient relationships. I've learned that a combination of traditional and complementary medical practices are important and helpful in the course of any neurological healing process. Inadequate sleep, prescribed anticonvulsant toxicity, poor nutritional habits, general fatigue, lack of prayer, meditation and exercise, alcohol abuse, ingestion of any illegal drugs and high fevers may be potent seizure triggers.
I've had many doctor/patient office visits at a respected medical/neurological research institute. An important finding was when I began perimenopause in my late 40's. Some doctors suggested that I not use synthetic hormones because they might counter balance the effect of my daily anti-convulsant medication (Primadone) and possibly trigger a seizure(s). A health practitioner, separate from the research center, suggested that I take natural and alternative remedies such as Borage Oil, Don Quai, St. John's Wort and Echinacea in tea or capsule form. Calcium and vitamin C found in certain foods and prepared tablets, helped to reduce medical and psychological problems such as emotional stress and light to moderate depression. Each doctor asked me for my honest opinion about using traditional and alternative methods simultaneously.
My appreciation of some doctor's neurological expertise and their acceptance of my medical knowledge from a layperson's point of view exemplifies the doctor/patient benefits within the context of "Complementary Medicine". Many traditionally educated doctors may fear the loss of what I call their "Doctor/Patient Command Posts". There's a
cartoon which is a reminder of the somewhat delicate balance in
doctor/patient neurological discussions. It shows a man striped to his
shorts, sitting on a stool in a medical examining room. The patient's
smiling and has a white light emitting from his body. Next to his is an
old fashioned medical doctor, wearing glasses, a hospital coat and taking
notes. The M.D.'s only comment to his patient is, "You've been fooling
around with alternative medicines, haven't you?"
In his book, Prayer Is Good Medicine, Larry Dossey, M.D., says that "when people choose alternative therapies they generally do not abandon
orthodox measures but use them in conjunction with alternatives. Neither
do most people believe an either-or choice must be made between prayer and
conventional medicine; when seriously ill, they generally use both." (p.39) I've used some form of alternative medicine such as acupuncture, prayer, yoga and meditation for years. But, I've never pretended that such therapy outweighed some conventional or traditional methods. As a researcher and consumer, I look for better ways to improve my seizure disorder and overall health. I imagine that in time, alternative medicines will have been given rigorous scientific tests and recognized as another way of controlling neurological disabilities.
Immediately following my left temporal lobectomy surgery, I was, to my knowledge, in an unconscious state for a short time during my hospital recuperation. Recently, I audited a class called "Philosophy of Mind" which looked at the potential of consciousness in human beings. The professor commented, "I think it is possible that even if one is unconscious the person may have some form of awareness present in what might be considered their sleep or dream state." After surgery, I was, to my knowledge, in an unconscious state. However, in order for me to retain some memory of the events prior, during and afterwards, I believe some kind of conscious or unconscious self-awareness was activated.
The Columbia University College of Physicians and Surgeons Complete Home
Guide to Mental Health says, "Temporal lobe epilepsy can lead to delusions, hallucinations, and schizophrenic-like symptoms..."(p. 216) Indeed, I'm among the people with TLE who've experienced such psychological problems. But, I believe that a positive feeling about myself and society, in general, may possibly originate from my conscious and/or unconscious thoughts. I have difficulty accepting the fact that I must deal with certain mental impairments. But denial may lead to even more serious health problems.
I rely on my computer to give me news about neurological/psychological disabilities. I also turn to off-line books and magazines such as Psychology Today, New Age and various things from the American Psychological Association. I was surprised to learn that Alexander the Great, Aristotle, Dostoevsky, Socrates, Vincent Van Gogh, Pythagoras and St. Paul The Apostle had some type of seizure disorder! This is reassuring information when I mention to people that those who, to this day, have some form of epilepsy might also have the greatest minds and creative potential.
In her book, A Passion For The Possible, author, Jean Houston comments,
"Was Helen Keller disabled? Technically, yes. Essentially, no. She had
re-woven the filaments of the senses that remained to her into a net that
could catch the world and its creatures...Can we, like Helen, go deeper
into that vast storehouse of alternative ways of knowing and bring back new ways of savoring the richness and glory of the physical world?"
Technically, anyone who has a seizure disorder of any magnitude may also be classified as having a medical/neurological disability. Essentially,
however, I have learned that one is as able or disabled as their mind or
attitude allows. As I write this article, I'm delving deeper into my
"storehouse of alternative ways of knowing", to present my personal view of what it's like to experience such things as discrimination and social
rejection. Indeed, it's a difficult task. Yet, like Helen Keller, I try
to see the good and positive aspects of self and society, rather than the
bleak and negative ones.
My article called, "The Challenge of Change", questioned readers, "Does a
fear of the unknown, different, or unusual prevent us from accepting people with disabilities?...Do we, in some way, prevent them from holding on to their dignity and pride?" Years ago, I created and presided over a
California county epilepsy support group. It recognized local, state and
national laws/legislation which may affect people with disabilities in
general and epilepsy, specifically. The Epilepsy Foundation of America
(EFA) believes in the importance of providing people with disabilities
information about the prevention and control of seizure disorders. Orrin
Devinsky, MD's book, A Guide to Understanding and Living with Epilepsy
says, "The EFA is a voice for people with epilepsy at national and local
levels to promote legal rights and...seeks to accomplish its mission
through support of research, education, advocacy and service."
I'm 50, divorced for 3 years, nor have any surviving immediate family
members. According to my medical records, I had febrile seizures at 6
months of age with intractable epilepsy much of my life. I had many
typical childhood diseases and was bedridden with mononucleosis for about
5 months. Several years ago, I was hospitalized due to life threatening
seizures at the onset of perimenopause. About the same time, I made my
first appearance at Stanford University's Comprehensive Epilepsy Center.
After voluntarily participating in many time consuming, yet necessary and
important preliminary neurological tests, I agreed without hesitation to
have Left Temporal Lobectomy surgery performed. Losing loved ones and
being divorced are difficult psychological problems. The addition of neurological surgery strongly impacted my emotional and physical
well-being. Was I scared? You betcha! Was I pleased with the results?
Unfortunately, there have been several occasions where I've been dismissed from different jobs due to uncontrolled seizures. I was a hotel convention coordinator but had to step down because I couldn't handle the daily time pressures. I was accepted into a flight attendant school with the hope of being a "paid" employee. However, following their physical exam, I was dismissed when a blood test proved that I took anticonvulsants to help control my seizure disorder. About 20 years ago, I wrote an unpublished work which says, "Concentration of my personal attitude towards epilepsy motivated me to research the probable causes and effects of the hidden disability. I evaluated medical information and procedures." It's challenging, yet, I believe very important that the public be adequately informed about social/emotional barriers people with epilepsy might encounter and how the American's With Disabilities Act (ADA) may affect them.
Recently, I wrote a magazine article for the Association of Humanistic Psychology's "Opening the Mail..." . Their Web site address is, http://ahpweb.org. I said, "...It's important, if not psychologically therapeutic, for me to write and talk about my various life-long medical problems. As an intelligent consumer, I often speak with licensed practitioners...Why do those of us who have the courage to openly talk about our medical situations in public get penalized or seriously questioned?" Maya Angelou's poem, "Still I Rise", helps me realize that one's emotional strength in the face of a neurological difficulty such as a seizure disorder might be a blessing in disguise:
"You may write me down in history with your bitter, twisted lies.
You may trod me in the very dirt but still, like dust, I rise...
Did you want to see me broken? Bowed head and lowered eyes?
Shoulders falling down like teardrops, weakened by my soulful cries...
You may shoot me with your words, you may cut me with your eyes,
You may kill me with your hatefulness, but still, like air, I'll rise...
Leaving behind nights of terror and fear......I Rise
Into a daybreak that's wondrously clear......I Rise
Bringing the gifts that my ancestors gave, I am the dream and hope of the
i rise........I Rise........I RISE!!
About the author
Camille Pierce, "Cam," did Master's work in Human Communication at Portland State University and is currently a Graduate Student Affiliate of the American Psychological Association. She does Internet research and is an occasional contributing writer for Web sites and print reading material. Her interests include Intra/Interpersonal Communication, Creativity, and Humanistic Psychology. Cam's written graduate level Intro/Intermediate course outlines and instructed speech and semantic classes. She's trained at the Julliard School of Music, Vocal Department, has competed in sports competitions and attends psychology/health conferences. Cam's constantly challenged by her 30+ years with a seizure disorder and dreams of the day she'll travel around the world.
Other Articles by Ms. Pierce
- Faith, Hope, & Love
- A Fork In The Road Called Life: Decisions, Decisions!
- Jean Houston: Possible Life Transformations
- A Peaceful Death
- Self-Esteem: Why Am I?
A "national, charitable organization, founded in 1968...dedicated to the welfare of people with epilepsy." EFA's advocacy page discusses information about driver's licenses, the American With Disabilities Act and various legal issues one may encounter.
American Epilepsy Society
Promotes biological, clinical and psychological research and education for professionals dedicated to the prevention, treatment and care of epilepsy. Discusses research, grants and training fellowships.
Epilepsia: Journal of the International League against Epilepsy
Clinical research updates, articles, diagnoses.
The Stanford Comprehensive Epilepsy Center
One of many Centers in the United States and, for me, a valuable medical
Hard-copy Text References
Ryer, J.C. (1997). HealthNet: Your Essential Resource for the Most Up-to-Date Medical Information Online. New York, N.Y., Jon Wiley & Sons, Inc.
Siebert, Al, Ph.D. (1993). The Survivor Personality: Why Some People Are
Stronger, Smarter. and More Skillful at Handling Life's Difficulties...New
York, N.Y. The Berkeley Publishing Group and Practical Psychology Press.
Devinsky, O. MD (1994). A Guide to Understanding and Living with Epilepsy.
Philadelphia, PA., F.A. Davis Company
Marshall, Fiona. (1998). Epilepsy: Your Guide To Complementary Therapies,
Alternative Techniques, Conventional Treatments. Boston MA., Element Books, Inc.
LaPlante, Eva. (1993) Seized: Temporal Lobe Epilepsy as a Medical,
Historical, and Artistic Phenomenon. New York, N.Y., Harper Collins
Page last modified or reviewed on June 25, 2006