"Those who know, do not speak. Those who speak, do not know."
-Lao Tzu
I've come across this quote today and I'm trying to find a way to apply it. I've been neglecting this blog because the right time to write hasn't been presenting itself.
I've been speaking my mind to those close to me and I feel as though they're presenting advice (great advice) without knowing several important details that it's hard for me to divulge.
Simply, my goal is to continue to write and try my best to edit my voice.
Monday, November 7, 2011
Friday, May 6, 2011
Boots and Blood
I, as do many (or all) people in the world take their fair share of hits. Yesterday I officially had my driver's license taken away because of the ill-control of my seizures. I haven't driven in months; actually it's more like a year, but I always had the little card in my pocket that defined me as a normal citizen that had the same rights as an average "everyday" person in the community.
Instead I got an Illinois State ID. This is basically used for buying alcohol or returning an item to a store. I'm traveling next week, so I'll need it for the airport security, but vacations like this hardly ever happen for me. I know this sounds like a miniature thing to be upset about but it hit me in just the right spot.
I've been having small seizures every now and then but the VNS seems to be taking care of them pretty well. My mood is improving, but like I said in earlier posts; it could be my new job, money, a sense of security, etc.
Yesterday night, after the whole ID thing and I got back from work, Sara and I went on a walk (we've been doing this more and more lately). I strapped on my new Dr. Marten boots, thinking the walk would help break them in.
As most of you know, I only wear Dr. Marten shoes and boots... the English made versions. There's so much I love about them; they have a romantic-type vibe... after a couple months the shoe becomes a part of the wearer. I've said in the past... I find myself looking at a new pair and wondering; "Where are these shoes going to take me? What will happen to me? What will I see? How will I feel?" It's sounds cheesy but I just love the thought of a footstep. Sometimes I'll walk around my building or work or wherever and I'll see one of my old footprints in the dirt or snow. What an amazing thing.
Anyway, I was walking with these new boots and like a lot of new shoes, especially Dr Martens, they hurt like hell the first couple of "wears." After a couple blocks around the neighborhood I felt a pop on my heal and could feel the hard leather cut into my skin. I walked through the pain knowing full well that I was bleeding pretty bad.
While this was happening a large storm was creeping into the area and it was getting darker and darker. We started walking faster... further cutting the leather into my heal. I wanted to take a mental picture of this moment. The pain, the storm. I felt so alive!!
We made it home just as it started pouring rain. I opened all the windows to cool down the apartment and as the stormy breeze filled the room I slowly removed the boot from my foot. My sock was full of blood and Sara got me a wipe and a bandage. I felt great... about the whole day... it was like I had a new life in just a few hours.
After my heal was taken care of I looked into the boot an noticed that the whole inside section on the boot's leather was soaked in blood. It was dark and.......... just beautiful. Those shoes took me somewhere yesterday and now I have proof. Did I think when I bought those boots that they would make me bleed... turning my mind away from the horrible thoughts that would enter my brain that day?
All of this sounds obtuse but it makes so much sense to me. The storm, boots, blood and pain. It felt a lot like life all wrapped up into an hour-and-a-half.
Instead I got an Illinois State ID. This is basically used for buying alcohol or returning an item to a store. I'm traveling next week, so I'll need it for the airport security, but vacations like this hardly ever happen for me. I know this sounds like a miniature thing to be upset about but it hit me in just the right spot.
I've been having small seizures every now and then but the VNS seems to be taking care of them pretty well. My mood is improving, but like I said in earlier posts; it could be my new job, money, a sense of security, etc.
Yesterday night, after the whole ID thing and I got back from work, Sara and I went on a walk (we've been doing this more and more lately). I strapped on my new Dr. Marten boots, thinking the walk would help break them in.
As most of you know, I only wear Dr. Marten shoes and boots... the English made versions. There's so much I love about them; they have a romantic-type vibe... after a couple months the shoe becomes a part of the wearer. I've said in the past... I find myself looking at a new pair and wondering; "Where are these shoes going to take me? What will happen to me? What will I see? How will I feel?" It's sounds cheesy but I just love the thought of a footstep. Sometimes I'll walk around my building or work or wherever and I'll see one of my old footprints in the dirt or snow. What an amazing thing.
Anyway, I was walking with these new boots and like a lot of new shoes, especially Dr Martens, they hurt like hell the first couple of "wears." After a couple blocks around the neighborhood I felt a pop on my heal and could feel the hard leather cut into my skin. I walked through the pain knowing full well that I was bleeding pretty bad.
While this was happening a large storm was creeping into the area and it was getting darker and darker. We started walking faster... further cutting the leather into my heal. I wanted to take a mental picture of this moment. The pain, the storm. I felt so alive!!
We made it home just as it started pouring rain. I opened all the windows to cool down the apartment and as the stormy breeze filled the room I slowly removed the boot from my foot. My sock was full of blood and Sara got me a wipe and a bandage. I felt great... about the whole day... it was like I had a new life in just a few hours.
After my heal was taken care of I looked into the boot an noticed that the whole inside section on the boot's leather was soaked in blood. It was dark and.......... just beautiful. Those shoes took me somewhere yesterday and now I have proof. Did I think when I bought those boots that they would make me bleed... turning my mind away from the horrible thoughts that would enter my brain that day?
All of this sounds obtuse but it makes so much sense to me. The storm, boots, blood and pain. It felt a lot like life all wrapped up into an hour-and-a-half.
Monday, April 18, 2011
New Start
It's been over two months since my last entry. Since then I've gotten a new job, the VNS is working better and better each day and we're loosing up financially so Sara and I are able to think about the future a little more.
Let me just say that there were many dues that I had to pay for the positive wind that seems to be blowing in our direction. I will, without a doubt, dive into the details of the last couple months at some point but they're a little too fresh in my mind for me to really comprehend.
What I can say is that I'm feeling good about my new job although I'm adjusting to the added stress for which has caused an increase in seizures. What's nice is the VNS seems to be working... stopping or, at least, lightening the seizures. A "side effect" of the VNS is a lift in mood and overall quality of life; this seems to be the case so far. It could be just the changes outlined above but I'm guessing it's a little bit of both.
Let me just say that there were many dues that I had to pay for the positive wind that seems to be blowing in our direction. I will, without a doubt, dive into the details of the last couple months at some point but they're a little too fresh in my mind for me to really comprehend.
What I can say is that I'm feeling good about my new job although I'm adjusting to the added stress for which has caused an increase in seizures. What's nice is the VNS seems to be working... stopping or, at least, lightening the seizures. A "side effect" of the VNS is a lift in mood and overall quality of life; this seems to be the case so far. It could be just the changes outlined above but I'm guessing it's a little bit of both.
Monday, February 14, 2011
A New Kind of Post
Let me start by saying that I've had the best two weeks that I've had in a while – a long while, actually. By Friday night everything was just perfect; I was busy at work and feeling just great about how Sara's birthday turned out and remembering the snowstorm from the week before. Sadly, the bubble had to burst at some point. I won't detail any events but I will say (and I might've said this before) that there's always a lingering spot in my brain for awful, devastating thoughts and feelings. Every diagnosis from doctors, or anything that I'm beyond self-conscious about is thrown into this little box; add very strong neurological medications to the mix and they're compounded by massive percentages.
The "box" was opened temporarily... the bubble burst.
Over the last couple of years I've come to understand these feelings. When I think something abnormal I can tell that it's foreign and not really me. I've had an okay amount of strength; my temper has evened out and my emotions have been low, but not so low that I need professional help (in my opinion). A small amount of depression and inactivity comes with these meds and situation; I'm not making excuses but it is hard to drive myself and be productive. There's just not a lot of energy available.
The VNS was supposed to help dramatically. I think I might have been putting all my hope into this little machine. It does help with seizures, but they said it would improve mood and general quality of life. The last couple of weeks might've been it's powers creeping in, but so far I've been in the same slump that I've been in for months.
Interestingly, when I'm forced to open myself – or – the "box" up and all the horrible, negative, lonely, lost, devastating, feelings are released... there's this time, like now, where my mind is in neutral. I feel really positive, not guarded and I'm willing to be myself and have a deep conversation without fear of the "box" flying open, again.
I told Sara that we need to talk every week about ourselves and where we're at – not work related, just us on a personal level. We need to communicate. I keep 99% of my feelings away from her because I don't want her to think I'm sick or disturbed, but when she finally sees them it can be a shock. Frankly, she's probably offended that I'm not opening myself up to the strongest and closest person I have in my life.
The "box" was opened temporarily... the bubble burst.
Over the last couple of years I've come to understand these feelings. When I think something abnormal I can tell that it's foreign and not really me. I've had an okay amount of strength; my temper has evened out and my emotions have been low, but not so low that I need professional help (in my opinion). A small amount of depression and inactivity comes with these meds and situation; I'm not making excuses but it is hard to drive myself and be productive. There's just not a lot of energy available.
The VNS was supposed to help dramatically. I think I might have been putting all my hope into this little machine. It does help with seizures, but they said it would improve mood and general quality of life. The last couple of weeks might've been it's powers creeping in, but so far I've been in the same slump that I've been in for months.
Interestingly, when I'm forced to open myself – or – the "box" up and all the horrible, negative, lonely, lost, devastating, feelings are released... there's this time, like now, where my mind is in neutral. I feel really positive, not guarded and I'm willing to be myself and have a deep conversation without fear of the "box" flying open, again.
I told Sara that we need to talk every week about ourselves and where we're at – not work related, just us on a personal level. We need to communicate. I keep 99% of my feelings away from her because I don't want her to think I'm sick or disturbed, but when she finally sees them it can be a shock. Frankly, she's probably offended that I'm not opening myself up to the strongest and closest person I have in my life.
Monday, February 7, 2011
Snowed In
After my last post I could tell that I needed a change. That change came in the form of a massive snow storm that took Sara and I out of work for two days. I have to say that those days were the best of 2011, so far. There was a buzz in the air all day on Tuesday before the storm. For instance: the grocery store was completely bare of any items because worried shoppers bought up enough food and water and salt and, and, and, and... like they were planning for a nuclear holocaust; salt trucks were racing around like mad; the news was ALL about the storm. Every channel was warning people to stay home and "hunker down." I was so excited; a very welcome break from monotony.
When the storm hit I was driven home from work early by my boss; we could barely see in front of us by the time we neared my apartment. Amazing.
Sara and I planned, too. We bought things to eat and movies to watch. Every hour we were peeking our heads out the door and windows to see how much had fallen. We heard plows and snow blowers and the wind swirling while snow piled up outside our door and window ledges. After it was all over, we found the ONE shovel in our complex and started to dig out. We were so full of snow and sweat from digging and digging... it was so wonderful.
The day back to work was Friday, which was a breeze and then we were off to the weekend. It was an unplanned vacation that had to be brought down from god or something. I smiled the whole week.
Saturday night I had a very small seizure at the grocery store. It's kind of embarrassing when I have to throw all of my "goods" onto a shelf so I can retrieve the magnate from inside my pocket, then lean on a cooler while waiting for the seizure to end. After it was over I was tired and I had the same warm, calm feeling that one gets after a good cry; my body and brain were recovering.
Afterwards, Sara drove me home and made pigs in a blanket (hot dogs in croissants) and mac n' cheese while I leaned my head back on the couch. Even after the seizure, I had the same smile on my face that I did all week.
My Dad always talks about life as being an adventure. He'd say, "The trip to Cleveland for a routine check on a client was worth it because it was an adventure." "The snow was coming down fast and the snow-blower broke down." "Your sister and Sara needed a ride home at two in the morning." "I finally found a way to stop water from leaking into the basement!" For him those are new experiences, new challenges... new adventures.
What I needed was an adventure; last week I got one.
When the storm hit I was driven home from work early by my boss; we could barely see in front of us by the time we neared my apartment. Amazing.
Sara and I planned, too. We bought things to eat and movies to watch. Every hour we were peeking our heads out the door and windows to see how much had fallen. We heard plows and snow blowers and the wind swirling while snow piled up outside our door and window ledges. After it was all over, we found the ONE shovel in our complex and started to dig out. We were so full of snow and sweat from digging and digging... it was so wonderful.
The day back to work was Friday, which was a breeze and then we were off to the weekend. It was an unplanned vacation that had to be brought down from god or something. I smiled the whole week.
Saturday night I had a very small seizure at the grocery store. It's kind of embarrassing when I have to throw all of my "goods" onto a shelf so I can retrieve the magnate from inside my pocket, then lean on a cooler while waiting for the seizure to end. After it was over I was tired and I had the same warm, calm feeling that one gets after a good cry; my body and brain were recovering.
Afterwards, Sara drove me home and made pigs in a blanket (hot dogs in croissants) and mac n' cheese while I leaned my head back on the couch. Even after the seizure, I had the same smile on my face that I did all week.
My Dad always talks about life as being an adventure. He'd say, "The trip to Cleveland for a routine check on a client was worth it because it was an adventure." "The snow was coming down fast and the snow-blower broke down." "Your sister and Sara needed a ride home at two in the morning." "I finally found a way to stop water from leaking into the basement!" For him those are new experiences, new challenges... new adventures.
What I needed was an adventure; last week I got one.
Tuesday, February 1, 2011
February 1st
First, let's get business out of the way. Last Saturday, the 29th I was preparing to get on the train to Wheaton to photograph a train exhibit at Sara's museum. I had just gotten out of the shower, put on my boxers and started to taste something from the past and see images from far-off memories playing in the back of my head. I knew what was coming but my VNS magnet was in the living room. So, here I am running through the house half naked looking for the magnet; I found it next to the couch (of course) and swiped it across my chest. I sat on the couch with my back straight waiting for the seizure to end. I was looking at my numb right hand while moving my fingers; what an awful and amazing feeling.
After the seizure I took an Ativan, a strong drug to stop anymore seizures from coming; a sedative. Frankly, it made me feel really good; I guess I was stressed about the photo assignment and my brain just couldn't handle it. The train ride was very relaxing; I even made a friend. A pierced girl and I were both laughing at a lady singing show tunes and snapping her fingers while we were waiting at the station.
Despite the seizure, Saturday was a good day... fun.
It's hard to explain how the last few days have been. There are just too many details, so they really can't be put into words. I've only spoken in short sentences, not paragraphs; enough to interact so as not to seem like I'm blowing anyone off or anything like that.
Last night in bed the street light was reflecting off the snow and illuminating our bedroom. I laid on my back and looked at the pattern of light on the ceiling while working out what I was going to write today.
It's horrible, but there are streaks of days that wish to god that I would have a seizure; a seizure so serious that it numbs my brain. A seizure that serious makes it hard to communicate. I want to see words and not understand them; I want to see faces and not recognize them. Sometimes I just want to be deprived of feeling, you know.
I write this now but if that day ever comes it'll damn me. Even right now I'm so sorry for writing it.
After the seizure I took an Ativan, a strong drug to stop anymore seizures from coming; a sedative. Frankly, it made me feel really good; I guess I was stressed about the photo assignment and my brain just couldn't handle it. The train ride was very relaxing; I even made a friend. A pierced girl and I were both laughing at a lady singing show tunes and snapping her fingers while we were waiting at the station.
Despite the seizure, Saturday was a good day... fun.
It's hard to explain how the last few days have been. There are just too many details, so they really can't be put into words. I've only spoken in short sentences, not paragraphs; enough to interact so as not to seem like I'm blowing anyone off or anything like that.
Last night in bed the street light was reflecting off the snow and illuminating our bedroom. I laid on my back and looked at the pattern of light on the ceiling while working out what I was going to write today.
It's horrible, but there are streaks of days that wish to god that I would have a seizure; a seizure so serious that it numbs my brain. A seizure that serious makes it hard to communicate. I want to see words and not understand them; I want to see faces and not recognize them. Sometimes I just want to be deprived of feeling, you know.
I write this now but if that day ever comes it'll damn me. Even right now I'm so sorry for writing it.
Wednesday, January 26, 2011
A Day Ahead
All day yesterday I thought it was Wednesday. It wasn't until 9 o'clock last night that Sara broke the news. She had a late meeting so I had the house to myself; it was very quiet. After dinner I moved to the living room but didn't really have the energy to turn on the TV or watch a movie. I put some music (finally) on my iPhone; I found my earbuds so I could listen to something, anything.
It seemed appropriate to leave only a couple of small lights on so I could really get into a place where thought was actually possible. I'm a big fan of live, small, acoustic-style songs; I found a few good ones and leaned my head back as I listened. This is the time that I imagine having a talent where I could set-up and speak to a crowd through music. It seems like a concept so simple and insignificant can have weight when given the opportunity so be expressed through song; some concepts and feelings can only be expressed this way.
I've studied around and geared myself toward the "visual." I've probably said this before, but my eyes just don't see like they used to or at least the way I hoped they would. Close people have excelled in the visual arts; whether it be design, photography or another fine art. I can't say that I don't spend time thinking about these people... good or bad thoughts.
Even though my job is still on the visual side of the spectrum, my life has become more about language. I'm supposed to express, through words, how a seizure feels. "What is your aura like?" "Explain to me what you're thinking after a seizure." I still can only really put into words, maybe 20% of the sensation. Imagine that you're at your desk and suddenly you taste your birthday cake from when you were twelve. Then you see flashing pictures in the back of your mind of an old TV show your grandpa used to watch when you were young. By the time you figure out what you're tasting and what you're thinking, the seizure starts and when it's over, you've lost it all. (It's just amazing that the mind stores these little details; some people would give dearly to unlock these memories and some would wish to god that they would be lost forever.)
When I say that my life has been about language I'm referencing mostly the spoken language. When I speak it takes time for me to find words and pronounce them properly. I have to ask, at times, what terms and expressions mean... even some of the simplest and most well known. The last couple of job interviews have been a testament to this fact; not to mention my new voice. Awful.
The written language seems to be a way for me to slow down and take my time to express, well, everything. I can stop for the right word or right name; I can think and edit what topic I'm going to write about when I'm in the shower or laying back and listening to music in the dark. I read recently that "... as a writer, some of your best lines are the ones you delete." I've edited several choice lines already; if they were to be spoken, I wouldn't be able to go back and delete.
It seemed appropriate to leave only a couple of small lights on so I could really get into a place where thought was actually possible. I'm a big fan of live, small, acoustic-style songs; I found a few good ones and leaned my head back as I listened. This is the time that I imagine having a talent where I could set-up and speak to a crowd through music. It seems like a concept so simple and insignificant can have weight when given the opportunity so be expressed through song; some concepts and feelings can only be expressed this way.
I've studied around and geared myself toward the "visual." I've probably said this before, but my eyes just don't see like they used to or at least the way I hoped they would. Close people have excelled in the visual arts; whether it be design, photography or another fine art. I can't say that I don't spend time thinking about these people... good or bad thoughts.
Even though my job is still on the visual side of the spectrum, my life has become more about language. I'm supposed to express, through words, how a seizure feels. "What is your aura like?" "Explain to me what you're thinking after a seizure." I still can only really put into words, maybe 20% of the sensation. Imagine that you're at your desk and suddenly you taste your birthday cake from when you were twelve. Then you see flashing pictures in the back of your mind of an old TV show your grandpa used to watch when you were young. By the time you figure out what you're tasting and what you're thinking, the seizure starts and when it's over, you've lost it all. (It's just amazing that the mind stores these little details; some people would give dearly to unlock these memories and some would wish to god that they would be lost forever.)
When I say that my life has been about language I'm referencing mostly the spoken language. When I speak it takes time for me to find words and pronounce them properly. I have to ask, at times, what terms and expressions mean... even some of the simplest and most well known. The last couple of job interviews have been a testament to this fact; not to mention my new voice. Awful.
The written language seems to be a way for me to slow down and take my time to express, well, everything. I can stop for the right word or right name; I can think and edit what topic I'm going to write about when I'm in the shower or laying back and listening to music in the dark. I read recently that "... as a writer, some of your best lines are the ones you delete." I've edited several choice lines already; if they were to be spoken, I wouldn't be able to go back and delete.
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