Saturday, March 26, 2016

Open Letter to My Seizures

I'm taking part in an epilepsy writing study and one of the assignments was to write an open letter to my seizures, and I thought I'd share it with you.


Dear seizures,

You've completely destroyed my life. Everything that was once looking up is now dead and buried. That's all I can say without getting too upset and risk having a seizure.

There is a good thing that has come out of this hell. I became more close to my family, especially my wife. My wife and I loved each other before my first seizure, but neither of us really knew how deep love can actually be.

After I had my first seizure, I no longer feared death. If fact, I thought that death was just around the corner. Years later my fear of death has returned.... Slowly. This is good news to me because it's a sign that I value life and want to get better, no matter how little the chances are.

There's no advice I could give myself after my first seizure because the medicine side effects make my emotions uncontrollable. I would forget the advice during one of my psychotic episodes caused by the meds. I only recently have been able to recognize when such an event is inevitable and put myself in a safe place. It's very similar to a seizure aura. 

I know I'm going to live with you for the rest of my life, but I know I can't let you control my life. This seems nearly impossible because you have such a tight grip on my psyche.

Basically, fuck you... and thank you.

Monday, March 21, 2016

Difficulty Saying Yes

If you know me well, you'd know that plans in my world are always tentative. No matter how important the occasion, I have to have an exit strategy, because I can feel great one moment, and the next, feel horrible. 

And I'm not just talking seizures. Yes, seizures definitely cancel plans, but I'm mostly talking about my mood. These medicines I take create severe ups and downs. Sara will attest that the switch from yes to no can happen within seconds. 

I can best describe the "switch" as a wave of emotion enveloping every part of my body. It starts out as a simple tickle in my chest that quickly turns to the grinding gears feeling that I've wrote about in previous posts. 

I find myself pacing the apartment, and I have the insatiable feeling that I want to hit something with my hand, thinking that it'll stop the extreme anxiety. I've done this several times, not clear minded, and have broke bones and bloodied my hands.

This feeling scares me so much that I often cancel plans preemptively. I think Sara has come to expect that every plan we make, no matter how important, like a wedding, all the way down to weekly errands like grocery shopping, etc.

What I'd like to do is stand up to this "no" feeling and start filling my life with a more optimistic outlook on my everyday life. I tried this years ago, and I was pretty successful at it, but since that summer I've all but given up. 

The thing about saying yes to events happening in my life is it is extremely rewarding in a lot of cases. Yesterday was an example. I said yes most of the day and felt very proud that I was able to get out of the house and walk around the mall, followed by a sit-down lunch, then stayed awake to watch a movie with Sara, then go on a quick grocery shopping trip way later than I've been out in weeks.

But yesterday I did know my limits. After shopping for a couple hours at the mall and lunch, I had Sara drop me off at home for a nap so she could finish the shopping that she wanted to do. After the nap, I still felt great, but as I said before, my state of mind could change in seconds. I pushed through the fear and ended up having a great day, (although I was constantly asking Sara to tell me that I was doing a good job fighting the feeling to say no to our plans, no matter how simple they were). 

My point is that I'm going to try to say "yes" more in my life. I feel like if I do this enough, maybe the fear of something going horribly wrong will subside. 

Don't get me wrong, I could feel great all day and say "yes" to everything all day, and still have plans struck down. This happened two weeks ago. I came up with the idea of taking a walk in the nice weather and ended up having a pretty bad seizure while on the walk. I can't stop myself from thinking what would've happened if I was on that walk alone. 

So, starting with this post, I'm going to make a conscious effort to say "yes" to the events flouting around me.

Wish me luck.


An example of the emotional switch I'm talking about happened while writing this post. I'm listening to music on my headphones and a song that really means a lot to me started playing and I had to say "yes," and push through and finish writing.