Since my first seizure, I've been looking for something that I can attach myself to. A hobby.
I know I have an addictive personality. Before my first seizure I was completely enthralled with photography. I would buy old 35mm cameras, fix the up, and I could wait to get outside to shoot photos. I bought a film scanner so I could share my work online (flickr.com/photos/smithjryan). Eventually I turned that healthy addiction into a career of sorts. I started shooting for the local newspaper. I would get assignments everyday after my job as a graphic design (for which I was also addicted!), and drive around the area shooting youth baseball, social events, etc. I loved it. The problem was as soon as I had my first seizure, my love for photography completely disappeared. The doctors said that pieces of my personality would change and they were right about that... for the good and the bad.
Today, I've been trying to find something to attach myself to. Recently, I started to collect records and I love listening to them, but I find myself just sitting in a chair, staring at the floor while listening. There has to be something I can do that intrigues me while I listen to records. Like right now, I'm writing and there's a record spinning in the background.
Photography was something that could get me out of bed and out of the house. Records can only do that to a point. I can't drive, so it's not like I can drive around looking for records, or work in a record shop. That would be pretty cool now that I think about it!
This blog is a healthy addiction. I write and I feel a lot of the stress of the day kind of wisp away. I also have a pen-pal in the UK that I trade emails with on a semi-daily basis. We talk about our lives and what bothering us. We seem to have pretty similar lives when it comes to Epilepsy. I wish I could communicate that to other Epilepsy sufferers because it's a huge help.
That's all I can really say on the subject of addiction. I know that the word addiction is a heavy word, but it's the only word that I can really think of that describes my situation.
I would appreciate any comments on the subject. Is there anything out there, for those who know me, that would inspire me? I need to find something to do while my records are spinning.
Also, I'm approaching 8,000 views on this blog. Thanks to you all.
Friday, February 20, 2015
Sunday, February 1, 2015
Blizzard on an Early Sunday Morning
It's snowing outside. Snowing a lot actually. We're supposed to get nearly a foot of snow when it's all over.
Right now I'm sitting in our kitchen typing and listening to some asshole butcher a Beatles song in the bar downstairs. It's karaoke night. Obviously, I can't sleep through this so I thought I'd write instead of sit on the couch, pissed.
I had another seizure since my last post. I've been only having three or so seizures a MONTH instead of three a week on this new medication called Felbatol. There are the depression and aggression side effects that I've mentioned before, but so far I've been able to combat them with other medications and some life tools set before me by my doctors and family.
One tool was to use Twitter to meet new friends who also have Epilepsy. It's been rather interesting talking with some of these people. One person in particular is from London, England, or very close to there... a suburb I would guess. We've been trading emails for months now, and that's why I haven't been writing blog posts as often.
She and I have a similar type of Epilepsy... intractable. Basically, what that means is our condition doesn't respond, or isn't responding well to medications. Even our seizures are similar, so we can trade stories, and otherwise bitch about how much it sucks having to deal with life AND Epilepsy at the same time. The difference is, she works and I'm on disability and am not currently unemployed. All of the hardships she seems to have at work, I've also experienced. She also has the same sort of support system at her job as I did when I was still working.
I think a lot about my time as a designer, and what my life is like now. Yes, I do get very depressed when I think about it, but like I said before, there are tools that I can use to combat these feelings. They don't always work 100%, but at least they're there for me when I need them.
One tool I use a lot is music as a hobby. I find myself spending hours in front of my turntable listening to my favorite bands. I have new music (new music to me), and music from my past, like what I would listen to in college and in high school. I find that these albums always bring back good memories, never bad ones. There's something magical about that. I can't quite understand why looking through old photographs can make me so depressed, but playing the soundtrack of my past can evoke so many good feelings.
I just have to know that while the music is playing, I have to remind myself that I'm a person with a past, but with also a future.
It's still snowing.
Right now I'm sitting in our kitchen typing and listening to some asshole butcher a Beatles song in the bar downstairs. It's karaoke night. Obviously, I can't sleep through this so I thought I'd write instead of sit on the couch, pissed.
I had another seizure since my last post. I've been only having three or so seizures a MONTH instead of three a week on this new medication called Felbatol. There are the depression and aggression side effects that I've mentioned before, but so far I've been able to combat them with other medications and some life tools set before me by my doctors and family.
One tool was to use Twitter to meet new friends who also have Epilepsy. It's been rather interesting talking with some of these people. One person in particular is from London, England, or very close to there... a suburb I would guess. We've been trading emails for months now, and that's why I haven't been writing blog posts as often.
She and I have a similar type of Epilepsy... intractable. Basically, what that means is our condition doesn't respond, or isn't responding well to medications. Even our seizures are similar, so we can trade stories, and otherwise bitch about how much it sucks having to deal with life AND Epilepsy at the same time. The difference is, she works and I'm on disability and am not currently unemployed. All of the hardships she seems to have at work, I've also experienced. She also has the same sort of support system at her job as I did when I was still working.
I think a lot about my time as a designer, and what my life is like now. Yes, I do get very depressed when I think about it, but like I said before, there are tools that I can use to combat these feelings. They don't always work 100%, but at least they're there for me when I need them.
One tool I use a lot is music as a hobby. I find myself spending hours in front of my turntable listening to my favorite bands. I have new music (new music to me), and music from my past, like what I would listen to in college and in high school. I find that these albums always bring back good memories, never bad ones. There's something magical about that. I can't quite understand why looking through old photographs can make me so depressed, but playing the soundtrack of my past can evoke so many good feelings.
I just have to know that while the music is playing, I have to remind myself that I'm a person with a past, but with also a future.
It's still snowing.
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.
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.
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.
***
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.
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.
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