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.

A Voice to Share

It's been over two months since the last steroid treatments; we've been waiting for the new IVIg treatment to start. The IVIg treatment isn't "officially" designed to treat epilepsy, that's why all of the doctors surrounding me have been using words like "experimental," or "let's just give it a try." Not very helpful words for someone trapped in their house for months on end.

I had another seizure last night. This one was different, (like all of them), it lasted for 15-20 seconds but stayed at a steady intensity, instead of shooting to a point where I lose consciousness. The time after was spent in a nauseous, weepy state; it feels like (without exaggeration) that something horrible has happened around you and all you can do in hunch over and try not to vomit. Needless to say, I slept the rest of the afternoon and into the night.

...

I paused because I had a little "problem" while writing. I was listening to music and I had no comprehension that songs could be recorded and not sung live. It felt like I needed to look around for someone singing this song. Seizures sound pretty poetic when portrayed like this, I guess.

...

I'm trying to use Facebook (facebook.com/smithjryan) and Twitter (@smithjryan) to connect with others, not just friends, but hopefully others with Epilepsy. It helps to know that there are others who have Epilepsy and have a voice with which to share.

"God Bless Ameri...ca"

I was taking this picture while having a seizure yesterday in Beloit. I was visiting my Mom and Dad and we were on our way to Janesville to meet my sister for lunch. It must've been the heat that caused the seizure.

The picture was taken with my phone; the interesting part was after seizure ended, I didn't remember taking the photo, I just looked at my phone and the picture showed up.

I must've lost consciousness and stiffened my arm because later my shoulder was very sore. I've had problems with my right shoulder since the beginning, but because the left shoulder was broken and the seizures were not "under control," we decided to move forward with treating those instead.

Now, since I have the VNS device in my chest, I cannot get an MRI and that makes it difficult to pin-point what exactly is going wrong.

I'm adding this post mostly because I'm trying to find meaning in this photo. Why a seizure at that particular moment, and why can I not remember shooting this photo? I know what is says on the sign, but I think it's not patriotic or religious in any way, but I'm certain there's something I'm missing.

I could spend hours looking at this photo, or I could tuck it away and file it under miscellaneous.

Pendulum

For the last couple of days my mind has been completely empty. It's like a pendulum has swung from a point where I do nothing all day but dwell on the present, past, and future. Each end of the pendulum is equally devastating; for the last couple of days I've felt a tremendous need to write but nothing was coming to mind. There is so much going on around me, but there was very little connection from one thought to another; even right now I'm tip-toeing around the keyboard, typing and deleting, trying to find that one perfect voice with which to speak.

I've had a short spell of seizures since my last post and since then my mood has changed. With the help of my therapist, we've come to the determination that my mind-set can be a sometimes sever side effect of a seizure. We all know that medication has been a problem in the past and we've come to a okay balance between the VNS and medication but it'll never be perfect.

My therapy sessions have been up and down since the beginning, but she had never seen a small "problem," as I call them, until last week. While talking to her I always stare at a photo of the ocean she has hanging behind her chair. I noticed the ocean moving and the euphoria feeling (aura) surrounded me but it passed before I had time to pull out my magnet to activate the VNS device. Afterwards I felt embarrassed and, to tell you the truth, I'm still not ready to see her again tomorrow. Seizures feel like a sign of weakness to me for some reason.

The next 24 hours will be like a diver, taking heavy breaths before dipping his head below the water.