This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!
At 42, I had my life completely together, working in technology, making a good deal of money, 1 kid in college, another about to go and a third just starting high school. My wife works at the high school all three kids were at, lots of colleagues, friends and several hobbies, all in all a good life. Earlier this year, I had a grand mal that put me in the hospital, there had been warning signs, but because we did not know what to look for, it came as a huge surprise.
The epilepsy diagnosis came as a shock, my being drug resistant was an even bigger shock. The neuro telling me I had probably had epilepsy since infancy was a huge shock. The biggest shock came from the VNS (inside epilepsy joke). I have a cardio problem that compounds the epilepsy problem as well.
I have not reached the 18 month mark post VNS insertion yet, however, the neuro and the cardio docs are already concerned, my seizure activity has gone up 300% for several months now. The neuro discussed SUDEP for the first time this month, I had to sit the family down and explain what that meant which was a difficult conversation for my 15 year old. All of this is the downside.
A new frame of reference
On the upside is a bunch of stuff I never would have expected. My friends rallied around me in a way I NEVER would have expected. They also made jokes like getting me to stir their drinks when I had a seizure (goofballs). I received support from people I haven’t talked to in over a decade. I have had people who don’t know me express concern, tell me they are praying for me, and bring us food, as simple expressions of kindness.
At first, I was embarrassed, especially after that first grand mal in the middle of church. I was mad at myself and humiliated. But also humbled at how concerned people I don’t even know were and how my friends made sure to cover everything and keep most of them at bay. I assumed at first it was just pity, but the more people I have shared my story with, the more I learn that most people are genuinely interested in the problem and don’t pity me but do feel some amount of concern or empathy.
In addition, I have had conversations with so many males with chronic illnesses. I would have never had these discussions if not for the epilepsy. I have found out that we are not doing a great job with chronic illnesses in this country period but males especially seem to just try to ignore it or suffer in silence. I at first thought I was just pathetic or weak for having seizures or being in pain. I realize that there are so many people who are either a similar or the exact same boat. I am starting an initiative in my community to get people talking about their struggle and know they aren’t alone.
I don’t know where this is going to take me, I don’t even know how much better or worse the epilepsy will get and that’s okay. There are days where I am so tired I can barely get out of bed or days where my brain is on fire. But I am not depressed about it anymore because I accepted what is happening to me, my new frame of reference, and now, each day is an opportunity to see if I can make it count.
NEXT UP: Be sure to check out the next post tomorrow by Greg Grunberg of Star Wars, Star Trek and Heroes fame at https://livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.
DON’T MISS IT: Don’t miss your chance to connect with other bloggers LIVE on the #LivingWellChat on November 30 at 7PM ET.