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Purple Pride

Hi, my name is Ike Nwankwo and I’ve had seizures…I have epilepsy.

Well, that was another tough admission for me. However, this one was a bit tougher than the prior blog post in which I had to blow my cover about launching Cardz for Kidz! because we’d missed some of our goals—see Secret’s Out. If you look at that post, and the next one, you’ll see that I have opened up before about my brain surgery. But when you read those two blog posts or if you happen to sense a common theme throughout anything where my personal story is the focus, I often refer to epilepsy strictly in the past tense.

I recall even after having my brain surgery, and being on a multitude of medications, that I would always tell myself that I didn’t have epilepsy. I’d always think I simply had “pre-seizures,” not the full grand mal seizures—so it’s different! With that in mind I could sympathize with—but not fully relate to—the children on the 19th floor at Ann & Robert H. Lurie Children’s Hospital of Chicago; the children Cardz for Kidz! partners with at the neurology units at Akron Children’s Hospital AND University Hospitals-Rainbow Babies & Children’s Hospital; and all the children I connect with on Instagram via hashtags such as #seizuressuck.

You might want to say, “Ike, stop lying. You’ve had a grand mal seizure AND you’ve even watched a recorded episode.” My response would simply be, “See, what had happened was…” But being 100% open and honest, here’s the story of that trip in the hospital. Due to my declining health and the fact that the meds weren’t working, my new doctors decided I needed to have an updated in-patient EEG. During that week, they took me off all my medications in order to trigger as many seizures as possible. When I’m in tough situations, my response is either to laugh or to cry. My tear glands were on strike that day, so all I could was laugh and tell jokes; thankfully, I quickly bonded with all the nurses and staff in charge of my care since we were all laughing. A bit later there was a big blank spot in my memory. Later my nurse (and “friend”) came in; she told me I “had a bad one” and then asked if I wanted to watch it. I agreed and watched myself have my first-ever grand mal seizure. On that tape I saw my mom, who was in the room, stand up and run over to me in fear. My response as I watched myself was: “See what had happened was, I wasn’t on any medications. So, I don’t have real epilepsy like the children I volunteer with.”

Honestly (and my sincerest apologies to our friends at @elijahs_fight on Instagram), I was being completely selfish and that’s why I didn’t share the picture below on the C