Me, Myself, My Brain & I

I honestly didn’t expect this to happen so quickly.

I’ve been a patient with Minnesota Epilepsy Group since 2000. After talking with my current doctor about the lack of remaining medications and potential surgical options, he explained that they have a weekly surgical conference and present one patient’s case to the entire staff. After hearing all of the information, everyone gets their input and the collective decision is what’s presented to the patient. My previous understanding was there was basically a queue, multiple patients in line ahead of me and it could be a while before they would discuss my case.

Instead, I spent about an hour on the phone with the doctor on Monday afternoon clarifying as much information as possible, making sure everything was accurate for his PowerPoint presentation the next morning.

So yes, I became a case study yesterday. And my one big request to people at this point is that you continue to call me Shawn, not “48-year-old Caucasian male.”

This title seemed a bit unwieldy—it’s a lot of letters to type—so when choosing the web address, I shrank it down to the latter two items: “MyBrainandI.com”.

So after coming up with the title for this blog, the big question is “Why?”

And it’s because it felt like the right thing to do. Like something I was supposed to do.

I have epilepsy.

Most people have probably heard about cancer and COVID and beheadings before, but what’s epilepsy?

That’s where I come in. My first seizure was in 1991, but it’s possible to have a single seizure and that’s it. As a precautionary measure, a doctor had me start taking an anti-seizure medication right away.

If the medication continued to prevent seizures, you wouldn’t be reading this, but it didn’t. I started having seizures maybe five years later (I didn’t realize that’s what they were at the time) and I was officially diagnosed with epilepsy in 2000.

It’s been a long journey since then. Different kinds of seizures, different kinds of medications… and now I’m out of medications. Everything that’s available either doesn’t solve the problem or has side-effects that would make the solution worse than the problem.

Thus, the final way to prevent seizures (aside from beheadings) that will be happening sometime in my near future is brain surgery.

So I’m sharing my epilepsy journey with all of you. Seizures, medications, brain surgery… all of it. Providing a personal perspective to information that you might only read in a textbook from all four of us: my, myself, my brain & I.