It really was just another day. The sun was shining; the front door was wide open catching the wonderfully cool February breezes. My son was being his typical to his own drummer self and my daughter was sitting on the second step from the bottom watching out the front door with the dog curled happily by her side. Me, I was in the living room rounding stuff up so we could go yell at the appliance store people because the delivery guys chipped the enamel on the washer they just set up.
In a heartbeat, our world changed.
Mommy, I don’t know if Amandya is just messing around or not, but I think you probably ought to come here. Quick. I got to the bottom of the steps, and I am forever grateful that she was on the second step from the bottom, to find my baby girl (who was actually 15 at the time, so not really a baby) in the middle of what I would learn very soon was the Tonic Clonic (more popularly known as Grand Mal) part of her second seizure.
Her first, the hospital was quick to point out, was possibly just a fluke and might not mean anything... they gave her the one Get Out Of Jail Free pass that you get when you have one seizure and you have never had any indications before of seizure activity of any kind. We loaded her up into the car and made it to the hospital in record time. They contacted the neurologist on call and by the end of the day we were admitted to Dell Childrens Hospital and well on our way to the diagnosis of Tonic Clonic seizures with secondary Complex Partials.
The ordinary day turned into a day like no other and changed the definition of our lives. Now, 16 months later, she is 11 months seizure free and starting to realize that living with epilepsy can mean actually living with the condition but it was a pretty bumpy and emotional journey to get here.
The most emotional for her are the myths that still exist in the minds of many people, the myths that change the way people look at her and deal with her when they find out that she has epilepsy, or the more politically correct but far less real term, seizure condition.
What are the myths?
Epilepsy is Contagious: Epilepsy is not contagious. You can’t catch it from someone by being near them, kissing them, or protecting them from getting hurt when they are seizing.
You can swallow your tongue during a seizure: It is impossible to swallow your tongue. You don’t have to protect anyone from doing it and trying to prevent tongue swallowing can cause more harm than it could ever do good.
People with epilepsy are disabled and cannot work: One in one hundred people, average, have epilepsy. This means that you probably work with several, or worship with them, or shop with them. There are some people whose epilepsy prevents them from working, but this is the exception rather than the rule.
People with epilepsy are mentally ill: Epilepsy is a physical condition, a temporary electrical short circuit. They are not crazy or mad or any other euphemism you want to apply as being mentally ill or impaired.
People with epilepsy look different: One in a hundred people have epilepsy. Anyone you pass walking down the street, at the pool, at the store, at the amusement park may have epilepsy. Unless you see them actively in a seizure, you will not be able to tell.
Because we have medication that can control seizure activity, epilepsy is a largely solved problem: For some people, my Amandya is one of them currently, medication can prevent seizure activity and control the epilepsy. Many people this is not the case. It can cut down on the number of them in many cases, but in just as many cases medication can’t help. For this reason, we need to continue research into causes and treatments for the condition.
Epilepsy is a rare condition: It can happen to anyone. Epilepsy doesn’t discriminate on race, color, gender, age, sexual orientation or socio-economic status. It can happen to anyone in any family. No one is guaranteed immunity. If you see someone having a seizure, what can you do the help? Although there are many kinds of seizures, many of which don’t even look like seizures if you aren’t aware of them, many times people having seizures are obviously seizing.
What can you do if you see someone having a seizure?
Stay calm: Panicking won’t help you or them.
Prevent injury (this is really the most important): Move anything that may cause injury away from him. If you can’t move something (like a wall or a sidewalk) away from the person, put something padded, like a jacket or purse, between the person seizing and what might cause them injury.
Time the seizure: If the seizure lasts more than 5 minutes, and really only if the seizure lasts at least that long, call 911. Shorter seizures, the hospital cannot do much more than allow the seizure to play itself out.
Make the person as comfortable as possible: No, they aren’t going to be incredibly comfortable, but make them as comfortable as possible.
Don’t restrain the person: If they are thrashing about, don’t restrain them. You could hurt yourself as much as you hurt them. Try to prevent them from hurting themselves on nearby things, but don’t hold them down.
Don’t put anything in their mouth: It is an old wives tale that she can swallow her tongue. Don’t put anything, ESPECIALLY fingers, into their mouths. You can cause the more harm than the good you intend and they may bite things through, causing choking hazards, or break their teeth.
Don’t give them anything to eat or drink, not even pills, until they are fully alert and logically responsive.
Keep onlookers away: The person seizing is probably going to be embarrassed enough simply because of the seizure without waking up to a gawking crowd as well.
Be sensitive and supportive: When he wakes up, he will likely be tired, may have bitten his tongue or the inside of his mouth, will probably be groggy and could have a headache or be cold. Being there for him, supporting him, and just talking to him while he comes back to himself will mean a lot even if you are a complete stranger. After the seizure, turn the person onto their left side, there may be post seizure vomiting even before the person is alert and you want to make sure they don’t choke on their own vomit. And stay with the person until she has recovered, or make sure they have someone there with them to make sure they are okay.
Life can change in a heartbeat. A perfectly ordinary day can become a day like no other, whether it happens in your family and in your home, or while you are walking down the street and see someone having a seizure. Understanding that epilepsy is nothing more than a temporary short circuit in the brain can help you to be less intimidated and more prepared to lend a helping hand, no matter who it is.
Epilepsy can happen to anyone, fear doesn’t have to.
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