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.

A Better Man

Both Sara's and my own family is fairly close in proximity, only about an hour drive from any one member, but at times (as with a lot of families) proximity and closeness are two different things.

When I first was released from the hospital in 2008 with the diagnosis of Epilepsy, I felt this uncontrollable need to apologize to Sara for any absence she'd experienced from me. I looked at the years prior and saw a man who was always looking into the future, with my desire to become a successful photojournalist while keeping my graphic design talent in my back pocket. I thought I could do great work and see great things beyond what I saw every day, and I think that included my home life. I always loved Sara and our families but I don't think I had may list of priorities in the right order.

I'd like to think that I would've had this realization without getting sick, but the reality is it coincided exactly to the minute with my first seizure. My trouble in the following years was my inability to properly mourn the man I could've been and embrace the man I've become... by all means, a better man.

My Dad always says there's adventure in everything and I think I've come to understand that concept. This illness has been an extremely difficult ride but an adventure none the less; and with this adventure I gained a renewed relationship with my family, a girlfriend has become a wife, and an empty home is now full. 

Let the adventure continue...

Akathisia, Twitter

Akathisia is severe restlessness; it's a side effect of Abilify, which is for the depression caused by my seizure medication. For Akathisia, one of my doctors prescribed Propranolol. Notice a pattern? I'm supposed to take it "when needed" but it's been hard trying to notice when I need it or really need it. 

I took it just before sitting down to write because I found myself pacing throughout my apartment, I just can't sit and concentrate on a book or movie. I'm feeling it kick in now because I'm able to focus on the keyboard as I type and not on the thousand different sounds going on around me... a truck passing, a man talking on his phone, a dog barking far off in the distance.

I feel like I should've had this kind of medication at my disposal even before I was on Abilify; when I worked as a designer and had to sit at a desk and concentrate on my craft. I know this is a short term fix but right now, I'm able to think clearly and about what I want.

This past week I re-entered Twitter to see if I could find any other Epilepsy patients that I could get support from. It turns out (not unexpectedly) that there are many of us with the same intentions. I found myself "following" many different people, from different countries, backgrounds, and beliefs, but with one stark similarity... Epilepsy has changed their life as it has mine.

Another amazing discovery... a healthy portion of them use blogs and podcasts to bring their message to the world. Now, I find myself reading their stories as they read mine. I mentioned in a tweet that it's been a long time, possibly the first time, since I've spoken to anyone about my life with seizures that hasn't been a doctor, close friend or family member. 

My doctors have been pushing me to join some sort of support group, but it's not as easy for me to speak these words as it is to write them and get a response. I'm simply not ready to use my voice.