I’ve Been Diagnosed with Epilepsy – Now What?
I opened my eyes and it was dark. Hmmph, this smell is different. Where am I? Why am I here? Heck, this isn’t my bed. What’s going on?
I was confused and lost.
All of a sudden, “click” & bright ceiling lights come on. I quickly place my hands over my eyes.
A grayed hair man in a white jacket approaches, speaking softly: “I see you’re awake young man (I was 10)…Here is your prescription. You must take this medicine every day. He then raises his voice, sternly stating; IF YOU DON’T YOU WILL HAVE ANOTHER SEIZURE AND DIE!”
Then turns and walks out, flicking off the lights as he goes.
My eyes got as big as silver dollars! What’s going on? What does he mean?
My first impulse was to learn about it, but nobody would ever talk to me about – nobody – not even Mom or Dad. I couldn’t find any information anywhere; libraries, bookstores… This was 1967. Epilepsy was deep in the dark.
Fantastically, fifty years later – 2017, if you were just diagnosed with epilepsy – information on Epilepsy is more than ABUNDANT! And more accessible for everyone throughout the world! And that is a great staring point: learn more about your diagnosis, and find out what supports are available.
Once you have found information and available supports, your first mission: stay strong – everyone! Yes, getting the news you, or your brother/sister/mother, has epilepsy will hurt each of us in one way (subtly) or another (harshly). And, the issues that come with it can be tough. It can being very costly; it can cause you to loose friends, make it difficult to find or keep a job, run up high medicinal cost, and make you dependent on family care… But that is why we need to lean on whatever supports are available.
It can lead to depressive, negative feelings of oneself. Other family members are heavily impacted themselves – for they can’t fight it off for you – and some (Mom in my case) get depressed themselves. So, again the support system, be it people that are close to you or an organization or group, is of great importance.
We can’t let the disorder of epilepsy control our demeanors or attitudes. Let us control It!
Yes, unfortunately, epilepsy is still mostly kept “hush, hush” by most of the public.
Here is a way you can bring it up so it can be talked about: don’t come out and state you have epilepsy. Instead tell them you haven’t ever seen someone have a seizure, (for how many times have any of us looked in a mirror while having one?), and ask if they’ve ever seen anybody have a seizure.
They comfortably and usually quickly reply with responses about having once seen someone have a seizure somewhere– in classrooms, cafeteria, hallway, church, shopping malls… Others may reply they know someone that gets them.
Then ask if they know what to do if they ever see someone having a seizure. When I asked that question in the 90’s was incorrectly informed to always call an ambulance and to not let them swallow their tongue by sticking something in their mouth to hold it down. But more recently, the responses are more informed: help them down, let them have the seizure and then turn them or at least their head to the side so can keep their tongues from collapsing and blocking the windpipe. There isn’t always a need to call an ambulance unless they’ve hurt themselves badly from the fall or keep having seizures, one after another.
Here are places that will tremendously help you “fight back” and deal with it:
- Epilepsy.com
- EFA- Epilepsy Foundation of America (which has branches in each state. Support groups are ever growing in cities & counties.)
- Facebook (with groups like Living with Epilepsy, Understanding seizures, Epilepsy Worldwide Support Group, and many more)
- TV reports
- Youtube
- Amazon (over 15 self-published books of others living with epilepsy)
- Over a dozen personal websites (just search on google and you’ll find a huge list)
And the awareness is spreading around the world. For instance, in India it is talked about in classrooms and on TV everywhere.
So again –Stay Strong! Which not only immensely empowers oneself but also empowers your fellow siblings, parents, and children- strengthening them through their own ordeals.
We can’t let the disorder of epilepsy control our demeanors or attitudes. Let us control It! No, that is not always easy, but don’t give up! For as shown above, we are not alone!
After the shock of being diagnosed with epilepsy wears off, think positively! There is so much information and community support available nowadays. Empower yourself by better reading, by watching videos and by conversing with others on the internet. In this modern day the information is ABOUNDING!!