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.

Street Light

I rode my bike this afternoon and I felt a rush of memories from my childhood. It was a foggy, muggy summer day and it looked just like a day when my friend Andy would visit. There was a medium-sized corn field behind my house with a dense forest just beyond it. Inside the forest were motorcycle trails and unlimited places for two 10 year olds to start a fort.

Our forts were like castles in our minds; to us there was an intricate and detailed layout complete with our own bathroom (for "number one" so we didn't have to come running home every ten minutes). We whittled sticks to make fencing and tried on numerous occasions to make a bow and arrow with sticks and a vine... unsuccessful, but we thought that if the stick flew five feet, then it was the real thing.

Thinking about all of this reminded me of how little we thought of time. We only thought about when we had to be back home for lunch and dreaded the street lights because that meant the end of our day exploring the woods.

If only being an adult had just a hint of a child's sense of time; we look days, weeks, and years ahead instead of what's going on in front of us. This is why time goes by so fast.

Today is not unlike when I was ten. Sara and I wake up everyday to build our fort and explore the very thick forest all around us; and when the street lights come on, we head home and end our day together.

Déjà vu

So far I've experienced five seizures in a day and a half. I'm still feeling the "aftershocks" and long aura's, which is a déjà vu feeling that warns me that a seizure in coming.

The aura's lately feel like being in love. I'll be listening to a song, for example, and it's sounds are beyond familiar, they sink inside me and warmth fills the pit of my stomach; they feel so good that I want to cry; I joked with Sara that people would pay good money to have an aura because it feels so good. Of course in my case, I know a seizure is coming so I don't have much time to embrace these feelings. I search my pocket for my VNS magnet and swipe it over my chest to activate the device. By this time, the seizure has started and the warmth turns to pain and agitation.

Lately, I haven't been losing consciousness; only once in the past month or so. Though I'm staying awake, I have to ask Sara if I did pass out because they're so intense that my memory is clouded.

After these seizures, a headache comes over me like no other I've experienced before contracting epilepsy. I'll walk around the house (if I can) and start to notice things in the house that are different than I remember from just hours before. An example could be the dishing being washed, although I don't remember doing them. Did I wash them? Did Sara wash them? I'm not sure.

This can also explain why I seem to reiterate a lot of the same subjects over and over in this blog. I don't read past posts for this reason; I just feel like each new post is unique and special.

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The new treatment I'm about to start (no new news there) will start soon. It is compiled of a blood plasma based product so I'd like to encourage all of you to give blood if you can. I've included information below. Thank you.

http://www.redcrossblood.org