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