Embracing the Challenge of Life with Epilepsy
by
Marie Hartwell-Walker,
Ed.D.
|
This article is not about epilepsy per se. It is instead about the challenges that people with epilepsy and their families successfully manage each and every day. For the record, epilepsy is not a mental illness. It is not a sign of low intelligence. It is
not "catching. It is a disorder of the brain in which brain cells
create abnormal electrical impulses that cause seizures. During a
seizure, a person might have muscle spasms, a temporary loss of
consciousness, a period of confusion, a staring spell, or a sudden need
to sleep. Unless they take medication to control them (and,
unfortunately, even sometimes when they do), people with epilepsy are
prone to experiencing seizures on a frequent basis. Because seizure activity can be
unpredictable and dramatic, people with epilepsy can become quite
fearful of being out in public. Even if a person has had only a few
seizures, he or she may live in fear that it will happen again. To avoid
the possible embarrassment of having a seizure in a social situation,
many people avoid social situations all together. They become
increasingly isolated, lonely, and even depressed. Their lives become
organized around their fear that they will have a seizure and their
efforts to avoid this possibility. But living with epilepsy does not
inevitably lead to depression, dependency, and isolation. Not
Adversity, But Advocacy Like all of life's challenges, epilepsy
can be handled as a tragedy – or as a problem to be solved. Epilepsy
doesn't have to mean the end of "normal" life. People with
epilepsy can find love, friendship, employment, hobbies and meaning just
like everybody else. But to do so requires a "can-do" spirit
and a willingness to work with
the problem instead of running away from it. Consider Joan, age 52. Joan has frequent,
intense seizures, sometimes as many as a dozen a day. During a seizure,
she loses awareness of her surroundings and might collapse to the floor.
More often, she simply looks for a place to rest and goes into what
looks like a deep sleep for a few minutes. She is then able to resume
what she is doing. Many people would limit their lives
considerably in the face of such obstacles. Not Joan. Her family taught
her early to expect the most from herself and not to let her seizures
prevent her from doing things she wants to do. By nature an optimistic
and stubborn person, she decided at a young age that her parents were
right. She married her college sweetheart and the two of them have
adapted their living situation to accommodate her condition. Since she
doesn't drive, they chose to live in the center of a town where bus
service is reliable and where most of the stores and services she needs
are within walking distance. When she found that she couldn't manage the
demands of a fulltime job, she went to school to learn the bookkeeping
skills needed to join her husband's business. As her husband's partner,
she can work around her seizures. He credits a large part of their
success to her financial wizardry. Joan is also active in several local
civic organizations and has used her own situation to educate people
about epilepsy and what to do if someone has a seizure. She is such a
successful advocate for herself that when she recently had a significant
seizure during an awards ceremony at one of these organizations, the
president simply announced, "Joan is having a seizure now but
she'll be back with us soon." A group of people made a circle
around her to give her some privacy while she came around and the
ceremony went forward without incident. Kids
and Seizures Children can have an even tougher time.
Other children aren't kind to a child who is different and whose
seizures can be scary. Consider eight-year-old Suzie. She has been
having seizures since she was three. Although medicines are keeping the
seizures under some control, she often does "blank out" during
school and misses important pieces of information. Sometimes she doesn't
know quite what is going on. Exceptionally bright and outgoing, Suzie is
a resilient child. She asked her teacher this year to let her explain
epilepsy to the other kids in her class and showed them what to do to
help her. She has developed a loyal group of buddies who simply won't
let other children give her a hard time. Nonetheless, the seizures, and
the intense concentration it takes to follow what is happening in class,
frequently exhaust her. A supportive family is providing Suzie
with the nurturing and the encouragement she needs. Her mom says that
Suzie often collapses in tears of frustration when she gets home from
school. But after a nap and a snack, Suzie is "rarin' to go"
once more. She refuses to be left out of after-school activities and
goes to dance classes, trumpet lessons, and a martial arts class every
week. When asked how they can let Suzie be so active when the risks of
injury or people's unkindness can sometimes loom large, Suzie's parents
are clear. From their point of view, the risks are worth it. They won't
always be around to protect Suzie. But they can help her learn the
skills she needs to take care of herself. November
is Epilepsy Awareness Month Between seizures, people with epilepsy
are no different from anyone else. And just like any of us, they need
the support and encouragement of others when their particular problem
poses a challenge to carrying out everyday activities. Clearly, we would
all benefit from learning more about epilepsy and, in particular,
how to lend a hand when someone is having a seizure. In marking Epilepsy Awareness Month, the
Epilepsy Foundation of America continues to urge a national commitment
to: ·
Making the cure of seizures a
research priority; ·
Ensuring access to professional
care for those who need it; ·
Educating the general public to
eliminate seizure-related stigma and discrimination; ·
Fully integrating people with
epilepsy into society through employment, education, and other targeted
programs; and ·
Developing new approaches to
prevent epilepsy. ·
For
more information on epilepsy, go to the Epilepsy
Foundation of America Web site. |
This
article was originally published on HelpHorizons.com.
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