Holidays

The holidays are very important to me and my family. We've definitely become closer since 2008 and even closer since last year's Mayo Clinic trip(s); you can see me there on Thanksgiving night during my EEG. I remember going in for the EEG a week before, thinking that there was no way I was going to miss the holiday with my family. I was wrong, but my family is strong and so they made the trip up to Minnesota to be with me. When this EEG photo was taken, my Mom and Sara were busy across the street ordering Topper's pizza; they snuck me some slices just before midnight. We sat there in the hospital room, laughing and telling stories about our day.

I made our yearly reservation for Christmas at the County Clare bed and breakfast in Milwaukee this morning. This made me think about how I had to cancel last year's reservation because we were making another one of our trips to Mayo Clinic. That trip would include my infamous PET scan and lumbar puncture. For Christmas last year we were stuck in a hotel room watching a marathon of "A Christmas Story," and ironically playing the "Game of Life" on my Mom's iPad.

Sitting in a hospital room hundreds of miles away from home with my head hooked up to wires, and my family bringing me pizza at midnight. Then, a month later in a hotel room playing games and watching movies after getting scanned, poked and prodded... those were the best holiday's I have ever had. It has everything to say about what someone should be thankful for. 

Independent Study

In college, I used one of my elective courses to explore an independent study with my instructor Dale Shidler. It was really my first attempt as a writer and as a photographer. Basically, I shot photos from around the Third Ward in Milwaukee on a snowy day and graphically designed my words onto the photograph. One of the photos is shown here; I have all of my finished work on a disk somewhere and I'll share those once they're located.

I think Dale might've been a little confused as to what exactly I was writing about because they were a little abstract, and I have to admit they were a little abstract in my mind, as well. I couldn't quite articulate what I was trying to say into words. I did come away with something though. The independent study never left me, I have thought about it for the last ten years and have obviously used it in many forms since then.

**Seizure** Apparently, this subject has gotten my brain all worked up!

As I was saying, I started writing this blog in 2010 but I've kept handwritten journals since college. It wasn't until I had my first seizure that my words had actually made sense in my mind. I was saying something, I was communicating, I had an audience.

Dale was my first audience member. The independent study is where I was first challenged as a writer and every piece I've written since then I've gained more and more confidence. Hopefully, in the days, weeks, and years to come my understanding of my thoughts will grow along with those of you who wish to read my words.

Homesick

Last week I had seven seizures in seven days. We may not be out of the woods yet seeing as though the heat seems to be the culprit. It's tough because I've been staying indoors and haven't been able to ride my bike on the prairie path or walk or the store. I can tell that there's a bit of depression lingering because my sleep during the day isn't fueled by being tired but rather a way to move the day along faster until I see Sara again at night.

I've been looking at old photos and found this one of Sara and I just when we moved in together in 2004. I was unpacking and she was preparing for her trip to Ireland where she would study for a month.

I look at this photo and remember all the good things from this time and seem to forget how hard it was to be without her while she was in Ireland, and I was alone in a new city. I'd done it before when I moved away to college in Milwaukee, and I do remember being very homesick, in fact that's the subject of my written senior thesis.

In Milwaukee I missed my house, my family, my dog, my room... but in Chicago all I missed was Sara. She was "home" to me. I think that's also true today. During the day, I'm just a man sitting in a room full of stuff, but when she walks through the door it becomes our home and I become a husband.

Enjoy the View

I've been searching for a way to relax that doesn't involve prescription drugs. Seriously. I have so many drugs pumped into me to help relax my brain and my body, but not my mind. It races and dwells on the deepest subjects we have as people. There are distractions but none of them are very healthy... television, etc.

When I first graduated college I had a similar amount of time to "think," as the job market was a lot like it is today. After sending out all of my resumes, I would walk up and down the lakeshore of Milwaukee for the rest of the day. I wasn't really into photography yet, but I did have my little 3 megapixel camera with me to document any interesting events. I wish I would've documented more.

I remember carrying my point-and-shoot and huge phone, waiting for a possible employer to call. When we visit Milwaukee these days, we pass a bench where I used to sit in the morning making my phone calls. I was a wreck during this time, I know, but for some reason all I remember are the good times I had walking and sitting on that bench overlooking the lake.

New Forms of Media

This week, with the help of my family, I bought a tablet. Don't worry sister's, I'm doing my best to pay it back!

I've found it to be very helpful in accessing new forms of media like magazines and newspapers, anywhere from local to national. This is good for me because I often spend hours at home, looking for something to fill my time. I know a lot of you out there would kill to have the time I currently have, but trust me, after a month, you'll be praying for a chance to get out of the house and rejoin the world.

I've already downloaded a couple magazines from Milwaukee, so I can keep up with what's going on north of the border, plus I've had the opportunity to see the tablet-formatted version of many newspapers from around the country. It's so interesting to read columns from writers in Seattle and Washington D.C., Maine and Minneapolis. I even subscribed (trial basis!) to an outdoors magazine so I can learn a little bit about what it's like living away from the city.

I'm having fun today, that's all I can really say. I know it's something small and not really exciting to most of you, but for me, it's a small victory to have a day where I can explore and discover.

Fired a Shot in Anger

I'll always consider myself a photographer even if I haven't shot professionally in years. I like to use the term "fired a shot in anger" because I felt so much passion for photography before I started having seizures. Any of the work I've done since has been forced; there is no passion when I pick up a camera.

All day I've been pacing around my apartment holding one of my 35mm cameras trying to get a sense of what it felt like to put the lens to my eye and snap the shutter. It felt right to write about this because all the while I was shooting I knew there was no film in the camera. That's the essence of how I feel about photography.

While pacing, I was thinking about writing and how I could put this into words and really pushing myself to focus, sit down and take a moment to jot down what I've been feeling. I've been moving from chair to chair, looking out every window, trying to think of something other to do than write. Basically, a depressed sort of procrastination.

Below is a link to my flickr page where I keep some of my best work. I like to look at the photos and think about what was going through my head. Composition, color, light... that all comes pretty easy to me, but passion is something that I just can't seem to grasp.

http://www.flickr.com/photos/smithjryan

MRI & VNS

I've been noticing an increase in twitter/facebook posts about the Vagus Nerve Stimulator and what side effects it may cause so I thought I would share a little bit about my experience with the device.

I had the VNS implanted in 2010 and since then I've noticed a reduction in the length of my seizures and the recovery time (posticle) but not necessarily in the frequency. I have noticed that I've been conscious for most of my seizures when I could certainly tell you that the strength of the seizure should've caused me to black out... call it an "epileptic instinct".

It's very hard to explain, but when I feel the aura quickly manifest into seizure activity, I can tell you without question whether or not the seizure was strong enough to generalize had I not activated the VNS. Those seizures last a bit longer and are actually painful, like my head is in a vice. Most doctors will tell you that a seizure victim is feeling no pain, but with the VNS keeping me just on the edge of generalization, they do emit pressure and pain. I am a patient and not a doctor so I can only back up these claims with first person experience and this might be different to each individual, but these could be some questions to ask before considering a VNS.

Now to the MRI issue. During my first seizure in 2008, I broke my left scapula and severely injured my right shoulder. Because the left was broken and my seizures were still not under control (whatever that means), I had surgery to repair my left shoulder and the VNS implanted. But, now that my right shoulder injury is in the spotlight, we've hit a bit of a snag... VNS and MRI. There are apparently some more sophisticated MRI machines that can accept a VNS patient but because the VNS is still relatively new, these hospitals aren't willing to take the risk.

My "team" has been working with a couple different hospitals and Cyberonics (VNS manufacturer) to jump some of these hurdles but it has been slow going and mostly on the back burner because my seizures still aren't under control.

The VNS is like a security blanket. With it, I feel like I have a bit of control of my seizures that is more on the physical side and not just on the chemical. Mediation has hurt me almost as much as it has helped; the VNS has its side effects but nothing – nothing like what I've had to go through with the chemistry experiment in my body.

There's my spiel, thanks.