Wednesday, April 20, 2016

Pre and Post Interview Thoughts

Entry before interview:

Tonight I had two very intense seizures, so I'm still a little shaken. Other than last night, today was one of the most optimistic days I've had in months. The warm fresh air was blowing through the window, I was listening to an ASMR video while coloring in the book Emily Ferko sent me. 

I was coloring because this morning because I felt like I had come to the end of the sketchbook from the hospital experience, and had little memories left from the seizures I've had in the past. I'm actually trying to visualize tonight's two seizures so I can draw them later. My memory is bad right now, and my blood sugar is low so I'm having a hard time concentrating. I ate some pizza and now I'm writing late at night, waiting for the food to hit my bloodstream.

So, as of right now I'm both excited and concerned. I shouldn't be either of them because if I'm too excited, I tend to get nervous, and when I'm too concerned, I get worried... two seizure triggers. I should just treat tomorrow like any other day. Just relax and enjoy the ride, because I know I'll do a good job, and I have little hope that I'll actually get the position. This sounds depressing, but it is actually helping me.

I get to try Uber for the first time which will be fun for when I need or want to go somewhere in the future. That's what I should be excited about. Plus, I get to have lunch with my friend and former boss, Joe, and talk about small things. I'm really more excited about that.


Entry after interview:

Today had some trials that I wasn't expecting. I had a seizure at home while getting dressed and ready for the interview, and after the interview they popped a surprise design project in my lap for me to complete within an hour.

Obviously, I was worried about the seizure and having another one during the interview, and a little flustered and shaky about the quick design project that I wasn't expecting. I even called my friend and former boss, Joe, to tell him that I was worried, and he assured me that everything was going to be ok, and to just go with it. Everything turned out just fine. In fact, I feel like I thrived; an experience that I haven't had in a long time.

The interview went well from my perspective. All of the typical questions were asked, (what's your greatest strength/weakness type of things). I was nervous, but no more nervous than I've been in other interviews.

After the interview I was pumped. I called Sara right away because I knew she was concerned that the interview was running too long and that maybe I had a seizure and was sent to the hospital or something. Then I walked down the street to a pub where I used to frequent to have lunch with Joe to talk about how things went. I was in a great mood, and we ate an early dinner while making small talk. It was nice to reconnect with him.

No matter if I'm offered the position or not, I had a hell of a day that I'll never forget. It was the first step in proving to myself that I might someday get my life back on track and put epilepsy in the back of my mind... where it should be. Thinking about it too much has been making me crazy... in some cases, quite literally.

Thank you ALL for your continued support. I couldn't have even walked out the door today without knowing that you're all there for Sara and I.

Saturday, April 16, 2016

Visual Seizure Diary

I recently re-discovered my fine art roots, which I haven't tapped into since my first year of art school. I've found it has been great therapy, and in that respect I've also been researching art therapy as a way to cope with some of the issues I deal with, epilepsy and otherwise.

I'm no great sketch artist, but I know these images are just for me, so there are no judgements or critique like there were in college. I've been watching some technique videos on YouTube, and watching a couple documentaries about Art Therapy. It's important to me to see and hear from others and how art has helped as coping strategy for them, whether it be visual art, writing, music, theater, etc.

So, while drawing I've been trying to come up with subjects, and I decided that I would like to draw something that meant a lot to me. Because my memory is so bad, and I usually don't remember my seizures, I often do have a still image in my brain of the last thing I saw before the lights went out and the seizure started. 

So... that's going to be my subject. A visual seizure diary. I'm going to draw the last image I remember from my seizures with a date of the drawing and a short description on the back of the image to reference in the future. I've completed two drawings already from major seizure memories from the last six months.

I probably won't draw every seizure because a lot of them I just don't remember, like there's no image in my head before the seizure began. But to have a visual record of a seizure could be, and had been so far, a great way to cope with some of the issues that have risen since being diagnosed with epilepsy.

I have a nice set of colored pencils, and I'll keep purchasing drawing pads as I fill them. Hopefully I won't need too many sketchbooks in the future, because that equals more seizures, but I know it's my reality, and if I can find a way to make something positive out of this horrible disorder, then I'm game.

Hell, maybe I'll become a better artist in the process.

Sunday, April 10, 2016

Van Gogh

After a very horrifying EEG experience two weeks ago, then a near equal withdrawal experience last week coming off a couple of my medications, (I will get into this another time), today was the kind of day I needed to help me forget about that hell and get my life back to normal.

Today, Sara and I visited the Van Gogh exhibit at the Art Institute of Chicago. It was a gray, cold, and misty day, but I wasn't too worried about that. Just seeing his work up close really helped me get back in touch with my creative roots.

The museum was packed with people clambering to see the exhibit. We were all like cattle being herded into, what seemed like, a small exhibit space, but once we got close enough to see his brush strokes, my eyes lit up.

All week I've been doing some art therapy with a sketch pad and colored pencils. My drawings aren't really much to write home about, but to me, they've meant the world. I even find myself dreaming about my drawings, and waking up in the middle of the night to finish drawings that I had started the night before. No drug in the world could make my emotions come to the forefront of my psyche like they have this past week. That's why going to see Van Gogh's work, my favorite artist, that much more meaningful.

I even forced myself to pick up a camera again. If you know me, then you know photography runs deep in my blood. Maybe my first time out shooting around downtown Chicago in awhile won't yield the best shots, (I shoot mostly film, so I've yet to develop and view my work), but just to aim my camera, and press the shutter was enough to make my blood warm.

So, this past week, with all the shit going on in my life right now, to be creative for the first time in a long time was a pure joy. Something I know I'll look back on, and be proud.

Pride in myself. A feeling not felt fully since my first seizure.

Thursday, March 31, 2016

Going Mad

It's hard to stay sane sitting in this hospital bed. No matter how many times I put on a smile and appear to speak the truth about how I feel, I'm really having a hard time. 

I've said this before, but it's clear. All my current life I try to avoid seizures, but there's nothing I can do to cox the beast out of it's cave.

The last time I had an EEG, I didn't have a seizure for days... no matter how many triggers that I tried. Then I had a seizure in the car on the way home from the hospital. I'm envisioning that for this stay as well.

One good thing that has come out of this hell is that the doctors got to see a psychotic event. It could be from the medication, stress, damage to my brain, or a million other things. Thankfully it wasn't violent like they have been in the past, but I could see a red dot in the distance. This red dot was quickly making its way to the forefront of my vision, but I was too drugged to give the red I was seeing any power.

While writing this early in the morning, I'm looking at a Van Gogh painting on my iPad to relax me. It's the same painting that I had hanging in my room as a teenager... "Cafe Terrace at Night". It was, what I thought, a peek into my future. Sitting abroad at a small restaurant, drinking a cool drink on a warm, clear night while people passed all around me. It's working ok, calming me.

I'm also listening to the Foo Fighters. An unlikely source that calms me. Ever since Sara and I went to their concert at Wrigley Field last summer, I hear one of their songs, and I'm whisked back to that misty night. Beautiful, just like Sara, who wrote that wonderful experience into my life.

I'm going to read a little about Van Gogh now that I have his work in front of me... even if it's digital. Maybe that'll help me pass the time this early, sleep deprived morning.

Sunday, March 27, 2016

Personal Purple Day

I first heard of Purple Day for epilepsy awareness last year (2015). Basically, you wear purple to spread epilepsy awareness. It's huge on Twitter. My feed yesterday was full of epilepsy friends all wishing each other a seizure-free Purple Day.

Unfortunately, yesterday morning I had a pretty strong seizure, so I wasn't on social media for awhile to see all the love that was being spread around by patients, friends and family. In fact, I completely forgot to wear any purple. 

Well, yesterday, the day before Easter, we went out for pizza with Sara's family. Sara and I got out of the car to see that all of her family members were wearing purple. At first, I thought it was just a coincidence because I didn't think anyone else knew what Purple Day was except Sara and I. But, no... they wore purple to show support for epilepsy, more specifically, Sara and I. 

I sat pretty quiet during the dinner because I was still a little woozy from the morning seizure, in fact I wasn't 100% that I'd make it to the dinner. Instead, I fought through the pain to see her family, eat some good food, and have a few good laughs.

We did just that, and I'll never forget this year's Purple Day. Sara and I have been having one of the most difficult times in our lives... health, money, you name it. To see her family show support like they did yesterday made me fight back tears the whole night, even now it's getting me a little choked up.

This is what Purple Day is all about. Patients, friends and family all showing support for one another. It really is a beautiful thing.

So, this post is dedicated to the Arnas family. Thank you all so much for your kind gesture and show of support. It's exactly what I needed after yesterday's seizure. It might be as simple as putting on a piece of purple clothing, but to me, it meant the world. 

Tomorrow (Monday), I start another EEG at Northwestern, and I'll have a little less fear going into it because of this year's Purple Day. 

Joe, Terri, Erin, Elise, Grandma, Bob, Debbie, and Jessica... Thank you!

Dave Grohl - Times Like These

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.