Post-Seizure Post

I had a pretty strong seizure about 30 minutes ago and I'd like to see if I can describe these last few minutes.

Right now, I'm searching for every letter on the keyboard; taking about 5-10 seconds to type each word. I'd like to mention that I'm relying heavily on spellcheck and a lot of the words I'd like to use to explain what's going on might as well be French because I'm having a hard time recognizing them.

I took a couple Ativan, which is an emergency medication. I'm feeling it absorb into my blood stream and I have to say that it's a pretty nice little high. It's a very sleepy high, but I feel warm all over and I can't really feel my feet.

I would consider the seizure strong because the whole right side of my body went numb and I'm pretty sure I lost consciousness. By that, I mean I could've been technically awake, but I'm missing a good chunk of time in my memory of the last hour or so. 

***

I've spent about an hour writing this post, so far, and I'm feeling a little better. I'm starting to recognize words as I type them. Note: I'm going through the first half of my post and fixing grammar errors, because I get self-conscious about that sort of thing. Vain, I know!

***

I called Sara just after I realized what a phone was (no joke), and I'm pretty sure I was still having the seizure because I don't remember quite what I said to her. I remember apologizing a bunch, which I tend to do after a seizure. My face feels puffy, so I know I had a good cry. I know that may sound weird to not remember whether or not I had such an emotional moment but that's sometimes what happens for me after or just at the end of a seizure. Especially as bad as the one I'm recovering from.

I know I'm going to look back on this post later today and not remember writing this so I want to document as much as I can while I'm still in the posticle phase (seizure hangover).

I want to thank everyone who reads this blog and I want everyone to know that I appreciate their support. Without being able to write this for all of you to read would be devastating to me.

Crying again, dammit.

Signs of Weakness

I've long considered Epilepsy as a sign of weakness. Who wouldn't? I've had a lot of my freedoms taken away from me, freedoms that most would consider commonplace for a man my age.

Through all of this I've had a strong support system of family and friends. Just last week, a friend from college commented on a blog post that I'm "way stronger than I even know." It's comments like these that keep my pen to paper. I appreciate my readership. I look everyday to see if my blog has gotten any "hits," and everyday they're in the double-digits. So, overwhelmingly, thank you.

Epilepsy as a sign of weakness is an easy post to write because I'm so familiar with this feeling, but if I thought of my strength I probably couldn't get past the first sentence. I can only say that I've come a long way with little results, my body is in shambles, but there is still air in my lungs. My Dad would say something like that.

I remember last year after being taken to the ER in Beloit, I was coming out of the Ketamine coma and all that came out of my mouth to the Police Officer was accolades of my Dad and how I knew I would never have his courage or strength. My sisters and I think of him as a super hero. He fought in a war, was a cop, and survived a terrible car accident all before he hit 40. I mean, he has the scars to show for it, but his positive attitude is what makes him our hero.

Maybe I do have a little of his courage and strength in me and that's what makes me his son. I know that there's a long, winding, muddy path in front of me but if I look back at these past five years, I'd see no path at all, just a pit from which I have just climbed out.

Holiday Air

Last night, Sara and I went to one of our favorite places to go during the holidays, the LaGrange Antique Mall. During this time of year all the dealers bring out their vintage Christmas decor and trinkets and it's fun to walk around and visit the memories of our childhood. A lot of the items are from the 1940s-1960s, but because a lot of these types of items are handed down, we had them in our homes. I grew up in a family where Christmas was celebrated immensely. We had all the holiday lights, toy trains, tinsel, the works.

Last year during this time, Sara, me and my family were traveling back and forth to Mayo Clinic where we celebrated both Thanksgiving and Christmas in hospital rooms and hotels, so we didn't really get a chance to really decorate or put up a tree. Plus, we were moving to our new apartment which made the whole season sort of a wash.

I can't say for certain how this year will go because things still seems to be pretty stressful, but it was just nice to go somewhere quiet, like the antique mall, and stroll around laughing and sharing memories as we found them.

While I was there, I found an old Leica point-and-shoot camera in great condition and I just had to have it. It was cheap and I knew just what I could do with it. If you know me, you know that I'm a "collector" of these types of simple cameras. I just love the look and feel of an old 35mm camera, and the shots I hope to get out of them. I have a bunch of film just waiting for the time when I can bring the camera to my eye.

Every time I find one of these cameras or rifle through my collection, I think about what new event will spark the photographer inside me to finally come back to the surface. I loved shooting, and still today I love the concept of photography, but I just can seems to get myself out there and take photos.

Already, I've cleaned the camera I bought last night, found a battery and downloaded the manual off the internet. I've been taking practice shots with no film all morning, so I know every feature once I decide to slip the camera into my pocket and step outside the door. Right now, I'm writing in my journal to plan special events in which I will bring the camera. Maybe this will help me get over the writer's block-type hump I seems to be having for photography.

Maybe breathing some of holiday air from last night will remind me of when I was a kid and Mom would have her camera ready to document every present, every smile and every silly moment we had during the holidays. Maybe this is the year Santa will finally bring me some inspiration.

Cold Sweat

On Saturday, I had a seizure just before laying down to rest. I usually put my phone and VNS magnet on my nightstand, and just before the seizure started, during the aura phase, I was aware enough to grab the magnet and swipe it over my chest to activate the device.

The seizure was on the strong side so I laid in bed until I felt ok enough to move around. I knew that I had to call Sara to let her know what happened but, as I was in the postictal phase of the seizure, I was confused and couldn't find the phone that I set on the nightstand.

The concept of a phone and what it looked like was fuzzy and even though the phone was still on the nightstand, I looked at it and told myself that it wasn't there; I had to search the house. I, quit literally, floated around the apartment searching for the lost phone, in random places like in the fridge and under the chairs until I found myself back at the bed, staring at the phone.

I looked at it for a good couple of minutes before picking it up and asking myself, "is this what I'm looking for?" I fiddled with the phone until it turned on and tried to figure out why I was holding it until the memory of making a call came back to me. It was then that I started to have a fever sweat and dry-heaved from the nausea that sometimes follows a seizure.

I finally made the call to Sara and laid back down. I took an Ativan, a seizure rescue medication, and drifted into a stoned, staring-like state. Sara was home by the time I fell asleep and when I woke up it was already dark. I didn't remember the seizure or why I was laying down at first. I had to search my memory and wanted to ask her what happened but before the words came out of my mouth, I remembered.

I mentioned this in my last post. My seizures come in waves. Once the "seal is broken" for one seizure, I know to expect several more. This might turn out to be a week where I'm either here at my desk writing or searching the house for an item that was never lost.

Galena's Seizure

Yesterday, I rode along with Sara to Galena, IL to return some items from her museum's folk art exhibit that ended last month. It was a fun trip; we met some pretty interesting people, ate a great lunch and had some funny "would you rather" conversations while driving. We had to travel in the Wheaton Park District van, which was fun because it's huge and loud!

After a long day, I decided to go to sleep early... earlier than I already do. I took my medicine and fell right asleep. I woke up in the middle of the night with a headache and it took me a minute to realize that I had a seizure while sleeping.

The difference with this seizure is that I was incontinent during sleep. I'm not really sure how to use that word because a.) it has never happened during a seizure and b.) it's so embarrassing that I debated on whether to write about it. I decided that because it was eating me inside so badly that the only was to really get past it was to write.

This isn't really that big of news because when I was first having seizures and my doctors were mixing medications, I had this problem but not because I had a seizure, but because there was so much medication inside of me, I was sleeping too deep. Blacked out, basically.

You hear about this when people are drunk or on hard drugs, but apparently it's very common with Epilepsy patients. Even with this knowledge, I can't seem to get over the thought of a grown man having to deal with these issues. I mean, isn't having a seizure enough?

Sara handles these types of situations systematically, at this point. Whether it's watching me while having a seizure, driving to the ER in the city at 2am, or stripping the sheets after a night like last night. I couldn't imagine where I'd be without her. You could say that this is a pretty bad attempt at writing a love letter.

I know I should feel like I have to constantly apologize to her because of a seizure and all that goes along with it, but I do... almost annoyingly. To be honest, for me, it's a sign of a seizure. I have a helpless feeling inside me and I know there's nothing I can do to better our situation, so I just keep saying "I'm sorry, I'm sorry."

This morning I noticed that I did, in fact, bite the tip of my tongue which is another sign of a seizure, so that made me feel, oddly, better. To have a little closer on the issue was nice. We ate breakfast and talked about it a little. It was my first seizure in weeks, but we both knew that a seizure was coming. They tend to lie dormant for a period of time and reemerge with a vengeance.

The treatments seem to be going well, and besides a little headache post-treatment, I feel just fine. That's the problem with Epilepsy. I look ok, I sound just fine, but beneath the surface is a dim flame that can spark at any time.

Smith vs. Sedaris

Last weekend Sara and I went to see "An Evening with David Sedaris" at the Pabst theater in Milwaukee. If you're not familiar with his work, he's a author that writes mostly about his experiences in life interacting with people, primarily his family. He uses comedy to express himself, unlike what I've been trying to do with this blog, but he does it in such a way that comes across very endearing and intellectual.

It was a rainy and cold night, but we were trying to enjoy ourselves as much as we could given the present circumstances with not only me but what has been going on in our family; it's been a very trying time to say the least. So much so that I've even been having texting sessions with my therapist.

We stayed at the County Clare Bed & Breakfast and had just enjoyed a friday fish fry. I was worried about my stomach, because eating large meals with my medication can cause me to feel ill, if you know what I mean. We drove through the quiet streets of Milwaukee, and when we arrived we found our seats and took in the beauty of the theater.

Once David Sedaris took the stage I tried to really absorb the way he read and how he presented himself on stage. It was interesting because he was constantly making notes without a pause in his reading. I feel like it takes a lot of skill to do this. I mean, he's always working, even when preforming.

I've been talking to Sara about writing and what kinds of benefits that it has brought me. It's fun talking about the blog to her because it's something that I've really come to love. Sedaris said during the Q&A portion of the evening that a writer has to write every day, even if it's just keeping a journal. I'm getting there, I think, but have a long way to go.

Although this blog is mostly about Epilepsy and how I manage my life around my illness, I feel like I could grow, but first I need to expand my willingness to really engage life. I haven't been able to do that in a while.

When I was a photographer, my job was to engage people and get the story, not only visually, but editorially, as well. I mean, it wasn't actually writing articles, but I had to provide the "gist" to my editors. It didn't allow me to be very creative, I left that to my photos, but I had to put myself out there and engage my subjects after the photo had been taken... getting names, dates, quotes, etc.

While sitting here in the apartment, I'm not engaging life. I'm only really getting to know myself. While that sounds positive, you can only look into yourself for so long before you start to nitpick and critique every aspect of your personality.

What Sedaris did after his talk was, not only sign books, but talk to his fans and answer their often quirky questions. Questions I'm sure they hope are unique enough to end up in one of his writings. There were a lot of egos there that night; people who thought they understood him perfectly, when in actuality he could see right through them.

After the talk, Sara and I retired to the Inn and had breakfast the next morning. I felt very tired, like I always do when I sleep outside my own bed, but I didn't forget the feeling I had while watching David Sedaris work, because that's what he was really doing. His writing is fluid, and that's what I took away from that experience and that's the kind of writing I wish to attain in the future.

Friends and Fear

I've reached 4,000 views on my blog and I want to thank all of you for your support...

I want to talk about friends. I mentioned in my last post that friends are not something I take for granted and I wanted to reiterate that fact. The reason being, I ran into an old friend at the Milwaukee Public Market this past week and I didn't quite know how to react. I think because she's an old college friend and I'm so removed from that time.

So much has happened since then, for me and for her, I'm sure. It was a quick encounter, but I keep running through it in my head because there was a time when our lives ran parallel and now they couldn't be more different. I'm sure that's true for most people after not seeing someone for an extended period of time, but this is one of the rare times this has happened to me, and it inspired me to write.

As I've mentioned before, I spend a lot of time at home in our apartment. I'm fairly disengaged from a lot of the things people find themselves doing in their normal lives. The awkward feeling I had when I ran into my old classmate is really a self-conscious feeling.

I've become far more aware of my faults and any confidence that I had in any area has been greatly deminished. I've lost then gained 50 pounds, I've held then lost three jobs as a designer and one as a photographer... I think anyone would feel this sense of "loss" if this had happened to them, but the thing that ties it all together for me is, obviously, Epilepsy.

The notion that I could have a seizure in public at any time really dampens my willingness to really get out there and take risks. By, risks, I mean socialize, attend events, meet with old friends, and not get all clammy when I run into an old acquaintance. I've had seizures in public before, I know I can't live my life in fear, but I also have to respect the fact that seizures are never convenient. 

I have an old fortune cookie message posted on my fridge that reads, "It is during difficult time that true friends become apparent." My readers are not just acquaintances to me. I'm opening up to you the way a lot of people wouldn't even open up to a loved one. I know that by writing, I'm taking a risk. This is us having coffee in a crowded restaurant. This is us at a gallery opening, or concert. This is us running into each other at a public market. 

I'm in my pajamas, in front of my computer in a quiet apartment. You could be anywhere you'd like. But, by reading this, we're together. By reading this, you know me.