Why Epilepsy Makes Us Feel Like We're Not "Normal"
Last updated: March 2023
There are plenty of people like me, who if they don't make a determined effort to laugh and mix with others, can easily feel themselves swapped into a cold, dark, and lifeless ocean. They find themselves adrift in a life jacket, circled by sharks, becoming nauseous bobbing in waves, trying only to dream.
Dreaming of the lives they left behind and wanting it all back again – wanting things to be "normal" like before they got epilepsy. What starts as a desire to be normal again can become a maddening obsession, until people drop from their life jackets and sink into the murky, frigid depths.
I just want a normal life...
I won't deny there have been times when I've missed going somewhere because I couldn't drive myself, lost my awareness because of a seizure, or even worse, lost a job opportunity because of epilepsy, and have sulked and wanted to scream at the top of my lungs, "I just want to be normal! Is that too much to ask?"
I've stared at the medications in my hand and wanted to hurl them onto the floor and then grind them into dust with my shoe!
Uhm, let me share a secret with you. If you're reading this because you have epilepsy, uh, you already are normal. "What are you talkin’ about, Tim? It’s not normal!" you’re protesting? I hate that word, "normal." I loath it.
Epilepsy doesn't make me abnormal
I'll get angry at someone who asks, "Don’t you want a normal life, Tim?" Their question implies to me that something about me is abnormal, like they're thinking I'm incapable of doing something important for others and need people to continually pamper me. I feel that they're being snooty to me and thinking they're better than me for some reason.
Many people live with health conditions
The joke is on those people! Truth is that if they have nothing wrong with them, the other 19 people who are surrounding them in a restaurant, a classroom, or an office do have something wrong with them. Yup, 95% of all people have some kind of ailment. Doesn't end there – 6 of those 20 have 5 things wrong with them. That's one-third!1
And what about those medications you're required to take for your epilepsy and their cursed side effects? Two-thirds of all people take a prescription medication for something.1
So just who is "normal"? My Random House Dictionary has this definition: "Normal adjective, 1. Conforming to the standard or common type; 2. Serving to fix a standard; 3. Psychol. a. approximately average in every psychological state." It seems to me that the sole person in that room who doesn’t have a thing wrong is the one who should be squeamish about not being "normal"!
It's OK to talk about our epilepsy
From the time we're children, parents and teachers drill in us that it's not polite to talk about ourselves, and this is frequently a good attitude to have in many cases if we are someplace other than a support group, for example. BUT, that doesn't mean to NOT talk about your condition.
Once people have gotten familiar with you, and you have politely reciprocated getting familiar with them, then tell them about your epilepsy and what they should do to help you if it's ever necessary. But when I've continued talking about it beyond what's necessary, I have turned people off and lost the opportunity to gain a friend.
I wish I could drive, I wish I had better memory...
For most of my life, I've wanted to be able to drive like most people. For the majority of my life, I've wanted a better memory, like most of the people around me. However, I know for a fact that a neighbor who drives would like to be more like me and be capable of walking about 3 miles a day, but unfortunately, she can’t even mow her yard because of rheumatoid arthritis.
I know that my sister, who I envy because she's been steadily employed, is envious of me missing either the cancer she had or the diabetes that limits her diet. I know that my best friend who oftentimes drives me is aggravated by the stomach and heart problem that makes him monitor the gluten in his diet.
Whether a person has epilepsy or another disability, my suggestion for them is to re-evaluate just what the real obstacles are to having a happier life. Painstakingly, make a thorough list of things in their way. And then make another list of all the craziest things you can do to get around epilepsy and do those things.
I won't fool you: It took me years! I had to first master patience.
Nominal vs. normal
In the process, I adopted a new adjective to think of the progression of my lifestyle. When you're watching a rocket launch, mission controllers don't say, "Flight Director, all systems are looking normal." Rather, they say, "All systems are looking NOMINAL."
The definition? "Nominal: adjective, 2. (of price, consideration, etc.) named as a mere matter of form, being trifling in comparison with the actual value."
They are just reporting that things are proceeding as they are expected to proceed. Hey, look at NASA's trouble launching the Artemis rocket. If controllers said, "All systems look normal," that would mean that something's broken and the launch attempt must be scrubbed.
Overcoming epilepsy's roadblocks
Figure out what things you want in life, brainstorm on how to get them. Keep in mind: If you want to go from point A to point B, a disability might mean you have to take a detour, like going from point A to point R, to point M, and back to point B.
I've discovered the harder something has been for me to achieve, the more I relish it when I've accomplished it! And once you have a plan on how to accomplish what you want, say, "Flight Director, all systems are looking nominal."
Since being diagnosed with epilepsy, has your memory been impacted?