Monday, January 26, 2015

Olive Drab Bag

Yesterday, I wasn't feeling good. I had a bit of a stomach ache. I laid down around noon. While I was asleep, Sara took down the Christmas tree and packed up the ornaments. When I woke up, I rolled over to her side of the bed and noticed a green messenger bag that I used to carry in college. The bag means a lot to me because it holds so many memories, and if you know me, I have a hard time letting things from my past go.

I must've stared at the bag for ten minutes, each one of those minutes I thought of all the times I walked to and from class and the items I carried in it.

There was a girl in college who liked the bag very much and offered to buy it from me. She offered nearly every time she saw me carry it. At the end, the price she offered was $50. A lot of money for a kid in art school. I always declined because the bag meant so much to me.

While staring at the bag while I was in bed, a strong wave a depression came over me. I've been having these sorts of episodes quite often but this one was different because it involved my past and the mindset I had in college.

I had such big dreams then. The world was so big and my future as a professional designer was endless. I never thought in a million years that it would come to an end the way it did.

So here I am, staring at a green bag, clinically depressed and there was nothing I could do about it except to communicate this to Sara. We had a long conversation about it, and she talked to me about what it meant to be a person in my (our) situation.

Life in college was so simple. I studied, I worked hard for grades, I made friends, I met my future wife. All good things. We talked about what I have now and that my future isn't written yet. This was the kind of conversation I needed to help me though these feelings of regret and remorse.

I still see the bag in our room, and I see it in my mind. I can't say as though I am completely over the depression, but I can see that my life is different than I expected for a reason. I am a man with Epilepsy. A strong man, even though sometimes I feel so weak and defeated.

I'm trying hard to live up to this. I'm trying to use the tools set before me to combat these feelings. They're working just enough to get me out of depression and on to reconstruction of the life I'm destined to lead.

Thank you, Sara.

Wednesday, December 17, 2014

For You, Sara

Over 7,500 views. Thank you all.

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.

Friday, December 12, 2014

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.





Tuesday, December 9, 2014

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.

Monday, December 1, 2014

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.

Monday, November 24, 2014

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.

Tuesday, November 18, 2014

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.