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 contagious. It is a brain disorder 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 also is 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 8-year-old Suzie. She has been having seizures since she was 3. 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 website.