For You, Sara

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I want to dedicate this post to my wife Sara. She has been through a lot with me, not just with my Epilepsy, but my growing to the man I am today.

In my wedding vows, I wrote that I fell in love with her twice. Once while we were in college, and the other time was when I lost my memory just after my first couple of seizures. I didn't know her during this time but she was constantly by my side. It wasn't long, just a couple of days of her next to my hospital bed. I remember not knowing her; she was so beautiful. I was even embarrassed a few times in the hospital because I was naked under my gown and I didn't want her to see!

Since my first seizure, she has seen the best and the absolute worst of me, but she's confidently been by my side fighting for me. I needed this because my brain has slowed down quite a bit since having seizures. My memory is shit, and I'm afraid to go out in public without her in case I have a seizure. I feel like she is the only voice that can really interpret my language.

The truth is, Sara, I didn't just fall in love with you twice. I fall in love with you everyday. When you walk in the door, when I get a text from you, or when you call to check up on me. You'll never understand how much my heart beats for you.

I don't know why today, of all days, I decided to write this, but I've been doing a lot of thinking while at home alone. I look around and all I see are memories that we have made. This makes me think of all the memories we'll make in the future.

We're going to beat this, and I'm so grateful that when the dust finally settles, you'll be there for me to embrace. I haven't made your life easy, but I can assure you that I will make your life meaningful. Our story will be remembered, but before that all happens, I want you to know that you've made my life worth living.

When I see you tonight, I'll fall in love with you again. I promise.

Conquering Fear

I'm here to tell you that I'm afraid. I'll admit it. I have been all my life. I over-think things until they start to eat away at me. I've done this for jobs, relationships, moving away from home, and now... of course, Epilepsy.

I've been given a lot of medication to help stop my fear of my current life, but you really can't prescribe medications to curb a primal urge to fear. I've also been given different techniques, like meditation and breathing to help the tension. None of these will work 100%. And they haven't.

There have been other times in my life where I should've been afraid, but wasn't. Seizures don't scare me, but I know that they scare those around me. Spinal taps, shots, infusions, surgeries... none of them have scared me. If anything I was a nervous-like excitement. An excitement that maybe this next trick will be the one to really stop my seizures and end the period of my life where I had Epilepsy.

Pain doesn't scare me. Death doesn't scare me. I feel as though I've come so close already, and to see my friends and family gather around me like they did makes me confident that I'll never die alone.

Maybe that's what I'm afraid of... being alone through all of this. But I'm not, and I just have to keep of telling myself that while I feel these poisonous medications make their way into my blood. I have to keep telling myself that when I'm in a hospital bed, I can look over and see Sara or a member of my family there to support me, to care for me.

I never thought that this was going to be the direction my life was going to take. But it happened and now I have to use every bit of strength inside of me to keep my head up straight and my tear ducts dry.

I suffer from a condition called Epilepsy, but I struggle most with fear. There's very little I can do about the seizures, but a lot I can do to be sure fear doesn't completely destroy me. And while I'm conquering fear everyday I can look beside me and know that I'm not doing it alone.

Smile Wider

I sit here with my dated iPod and iHome playing while I write. I usually listen to what I call "thinking" music; the same music I would listen to while I was working as a graphic designer. I would sit at my desk with a huge pair of headphones and churn out composition after composition. It was tedious but fun. I miss it.

This past week was pure hell. Not only did I have the same psychological issues that I've been describing for weeks, but seizures as well. I'm going to dig deep and try to explain how the seizures felt. I wish those close to me could feel them just once in a controlled environment because my words will never be enough.

I had a medication mix-up at the pharmacy on Monday of last week... it happens to the best of us. This started a chain reaction. Not only did I feel very aggressive, but I was also having auras. Eventually, the auras led to seizures; the kind of seizures I've tried to explain to everyone. I remember the one I had at a restaurant vividly, but the one I had at home stuck with me the most.

I remember laying in bed while Sara was out in the living room watching TV, as I called out her name. After that I just remember fighting the seizure, almost wrestling with it. Sara kept telling me to relax, but I couldn't understand her. My head started to raise and lower as I fought with no luck.

***

This is a two day post. I guess I just needed more time to process what is actually happening. I had another one of these seizures earlier today, but this time I was alone. When I first felt the aura, I quickly tried to remember what Sara would do if she were here. I sat down on the couch and I could feel my head turning to the right. I had no control of this. The right side of my body went numb as I was swiping the VNS magnet over the device in my left chest area. It ended several minutes later, and I thought it was safe to get up from the couch, but I still felt as though I was still feeling the effects of the seizure. I wanted to find a way to pause the show I was watching... I was watching the news. There's no way to pause it.

Once I regained full consciousness, I made my way to the kitchen and looked through all of my medication, not sure which one was Ativan. I got frustrated, but I knew I had a dose in a little pill box that I carry around with me everywhere. I knew for sure that was Ativan. I took it and fell asleep almost instantly. That's how I know that the seizure was bad. I can take Ativan any time during the day and just feel loopy, but after a seizure it's like a knockout punch.

I do a little test when I'm at home after a seizure if I'm alone. I look into the mirror and try to smile wide because some seizures paralyze parts of my face. I did it before taking the Ativan, and I smiled successfully as far as I could see.

I looked at my face, and I looked so tired. I think about this all the time. If you see pictures of me several years ago, even after I started having seizures, I looked normal. Inside I was tired, but it never really was reflected on my face. I look older and weaker. I'm not sure if there's anything I can do to reverse this, but hopefully someday I'll be able to look in the mirror and see myself happy and vibrant. Right now, I can only see a man who thinks too much about things too little. I work myself up to the point that I'm no longer the Jeremy everyone used to know. I'm just a tired man. A man who is constantly trying to find something to make him really smile wide.

The Dark Side

No, the title is not in reference to Star Wars, but I may have gotten your attention!

I'm talking about psychology and epilepsy. Apparently, it's fairly common to experience a darker side of your personality with epilepsy and epilepsy medications. Not just epilepsy medications, either. Just watch any ad for a medication on TV, they'll all warn the viewer of possible side effects, one always being mood swings or depression. They're rare, but someone like me has to have had one or more of these side effects for them to have to say those things in their advertisement.

Right now I'm experienced the "grinding gears" feeling in my chest, I've written about it before, look below. The same feelings, and just about as strong as they were when I was admitted to the hospital about a month ago. I don't want to go through that again, plus I know that there's nothing the hospital can really do. I just have to take an emergency Ativan and ride this pain out. Easier said than done.

I'm having a hard time typing because my hands are shaking, and just thinking of a few minor failures in my life can send me down a spiral. This is partly why I'm writing... to distract my brain, to make me think of language and grammar instead of some of the horrors of my past.

That was the problem when I went to the ER. I couldn't distract myself. I just kept pouring over the events in my life that, let's just say, weren't very pretty. I don't know why I go to these places, I wish that the medications I'm taking made me shoot rainbows out of my ass, but no... they only show the dark side.

Here I Am, Awake.

I'm supposed to be asleep, but Felbatol isn't letting me. I have a huge doctor"s appointment tomorrow that I've been thinking about while laying in bed. The thoughts started out harmless, just wispily getting my thoughts together before I nod off to sleep. Then, I started to really dwell on exactly what I want to say to him. In detail. Angrily. Mostly about my last experience in the hospital, and what Felbatol is doing to my psyche.

I just took some Ativan so I can sleep, so I'm writing this while I wait for it's effects to take hold. There's not a whole lot I want to say because I'm trying to relax. Have a good day everyone. Please don't take tomorrow for granted.

Goodnight.

Why I'm Not a Dancer

I can remember a time when I could dance. Not well, but just have the confidence to stand in front of people and move around in a way that it looked something like dancing!

I'm not talking about slow-dancing, that's relatively easy. I'm talking about really standing up to a good song and letting my freak flag fly. I can remember as an RA in college we would put on Daft Punk and dance around the office during late nights. Just being young and silly.

I enjoy music a lot... I mean A LOT! Hell, I played drums in two church bands growing up. Now I just enjoy it to myself. Sara and I talk about music quite a bit and she knows this fact. I grew up with my Dad blasting oldies rock in the garage for all the neighbors to hear as he worked on cars, and my Mom singing to the latest records on the car radio... full volume!

I remember when I was 16 or 17, I went to a No Doubt/Weezer concert in Milwaukee with friends from high school. I danced up and down the steps and in my seat. But we went to a No Doubt concert recently, and all I did was stand and try to take the whole experience in. I probably looked like I wasn't having a good time, but in actuality it was one of the great musical memories of my life.

So why this change? Why do I sit and scowl as I hear good music and watch everyone else have fun and dance?

Some would say that it has to do with the fact that alcohol isn't involved as much anymore, and I'd agree to a certain degree. But if I really think deep I can remember having confidence that soared through the roof when it came to music, I just didn't give a shit during my late high school and college years. Who really does?

I think back to when I started to really listen to MY music. It was in my formative years; a time where I just started to figure out that I was an individual. This scared the hell out of me. When I first started to listen to my own bands, and started to form my own opinions about the world, I became very depressed. There were times that I would listen to the same CD on repeat while I sat on the floor in my closet, sometimes falling asleep.

Music is therapy to me. Now, I'm not on the floor of my closet, but rather sitting in a hospital room listening to my iPod until I fall asleep. There's a connection there if you can see it. History repeating itself.

If this is true then there will be a time where I'm dancing at a concert rather than just standing and listening. There'll be a time where music effects my muscles and not just my emotions.

Someday please come soon.

Like Gears in my Chest

Below is a post that I started writing on October 15th just before I agreed to go to the emergency room to seek help for the negative reaction to Felbatol (a seizure med I'm trying out).

"Like gears turning and grinding inside my chest.

That's how I've been describing what this new mix of medicine feels like at the current dose. The gears turn and I see in great detail the past violence in my life and I try to talk myself out of any future violence to my body. I just can't describe it beyond that. 

The gears are currently turning as I type and I'm now waiting for the Ativan to reach my blood and put me to sleep."

After that I went to our local ER, they shot me with a double-dose of Ativan, but it wasn't working. The doctors there decided that it would be best if I went to the Northwestern Memorial ER downtown because that's where both my Neurology doctors and Psychiatrist are located.

I was immediately whisked away to the "Crisis" area of the ER. Basically the part of the ER where  they put people who hear voices, or are otherwise completely crazy. Sorry to be so harsh, but it was my experience. We had a woman pacing while on her cellphone, talking about how the German mafia was after her, a man who apparently tried to jump off the Michigan Ave. bridge in Chicago, and a nice little asian girl that didn't want to take off her Ray-Ban sunglasses. God only knows what she was there for.

I was there because of a bad reaction to a seizure medication. Everyone knew that but I still had to be locked in with these types of scary people. I was there for 20 hours before my Neurologist swooped in at the last minute and the found a bed for me in the Epilepsy Monitoring Unit instead of the Psych Ward. 

Once in my room, I had to have a "sitter" because the original reason I was there was because of psychological reasons. By the time I was upstairs, the effects of the medicine had subsided, and I just felt tired.

The first night in the Epilepsy Monitoring Unit I had a seizure, but I wasn't scheduled to be hooked up to any machines until the next day. Of course, I didn't have any seizures while being monitored... seems to happen every time I'm there. There's just not a lot to stress about in the hospital room, so that usually equals no seizures.

Anyway, I was released on a lower dose of the medication that was making me feel "agitated," (to put it lightly). That night, on the way from home I had a seizure, and I've had four more since. It sounds bad, but I said it in the ER, I'd rather have a seizure than feel what I was feeling those days on the higher dose of Felbatol.

Two days after being released, I saw my psychiatrist and talk with him and made a plan. Then....... I tried to get in the car, I tripped and broke my ankle! 

One would think that I would be in bad spirits, but honestly being on a lower dose of Felbatol has increased my ability to stay positive.

Now I'm just hobbling around my apartment, but the most important part of my hobbling is that I'm doing it with a smile.