Living With Epilepsy

Tingling. What is this strange tingling sensation that I feel in my hands and feet? I space out again, not able to speak but able to hear. This is now the fourth time in a week I have had these same feelings. I try to explain them to my parents, and they tell me that it is all in my head. I stare blankly into space at school, at home, at bowling. Finally, one day, it happens. I have a Grand Mal seizure in my kitchen right in front of my family.

I wake up in the back of an ambulance on the way to the hospital, not knowing what has happened or where I am. I am just 16. I am rushed to the children’s hospital where I am placed in the cancer ward—the doctors think I have a brain tumor. Scans come back abnormal. The words “brain surgery” are uttered. I swear and curse out the doctors. Come to find out it is not brain cancer, but a genetic abnormality. I am transferred to a children’s neurologist.

So it goes for years that I have to see the neurologist every three months and get blood drawn to check the levels of my medication. Medications are checked, changed, adjusted, etc. I develop migraines soon after the seizures start. A medication is added for the migraines. I develop memory loss, depression, sleep abnormalities, and behavioral problems. All of these symptoms are related to the epilepsy. It is hard to take in as a teen. I think my life is over, but my supportive parents reassure me that it is not.

I have not been the same since the beginning of my epilepsy. I am 33 now and I have the same issues that I had after I started having seizures. The issues, however, have increased. My memory grows weaker by the day. I have trouble remembering day-to-day. My depression and behavioral changes have grown in that I have developed what was diagnosed as bipolar disorder.

Some days are easier than others. Some days I just want to give up and let the disease win. If I give up, I know that there is no turning back so I keep on going. Epilepsy is a life long disorder and once diagnosed, it can be treated and managed to some degree. There are still times where I have breakthrough seizures, even while medicated. That’s not going to stop me from being who I am.

If ever you witness a person having a seizure, make sure that they are safe. If you can, get them to lay down and put a pillow under their head. NEVER put anything in their mouth! They cannot swallow their tongue, but they can choke on objects in their mouth. Do not hold them down. Let them seize and then call 911.

We can’t change who we are. We can only accept the hand we have been dealt and learn to appreciate it. I have taken this advice and applied it to my life whole-heartedly. I don’t pity myself for the fact that I am an epileptic. I find it to be a unique character trait of mine. Please, never be afraid to see the beauty in who you truly are no matter what. At times it may be hard, but there is always a positive side. As an epileptic, I belong to a phenomenal community of people on social media and we all support one another. I know other epileptics in my life and can relate to their symptoms as well as their fears.