When I first moved to Illinois from Milwaukee, I worked at Sara's Aunt's jewelry store. I started working during the holiday season, where I would wrap presents for one of their client's Christmas parties. Sara would come down from MIAD, as she was still in college, and she would teach me how to better wrap gifts, as I wasn't very good at it.
This time of year was great to be living in the Chicago area. There were so many lights, and I haven't felt the Christmas spirit as much since I lived at my parents house in Beloit, Wisconsin.
At first, I was sleeping on Sara's Aunt's couch and the holiday lights from the street and the surrounding houses would come in through the windows, further reminding me on the Christmas season. The memory of working there are great, and when I watch episodes of It's Always Sunny in Philadelphia it reminds me on these good times.
When an episode starts, I hear the music during the opening title sequence, and all I can think about is being in Chicago during this time. It was all before I had Epilepsy; maybe this is why I watch the episiodes over and over.
I worked in Milwaukee recently, where I was staying with friends during the work week, and while I was there I would pop in the DVD's to remind me of Chicago. After the job ended, I moved back to Chicago, and when I'm here during the holidays, all I can think about when I look at the lights is the first couple of months of living here.
There's something special about Chicago during the holidays. Maybe because it's such a populated area, or because I started living here in December. There are a lot of bad memories, but even those are special because it's what brought Sara and I closer together.
My Epilepsy is something that I have to really think about. While I wish my life was a little easier, as it would be without this illness, I can't help but think about how much my life has changed for the better.
I was a completely different person. I worked hard, and I felt like I had a good career ahead of me, but Epilepsy has brought me from a boy to a man. Sara and I would never have been so close, and I'd like to put a big period at the end of that statement. I'm at home taking care of two cats that I'd like to call "therapy animals" because without them I think my days alone would be far more strenuous. Some might say that it's practice for a child someday.
I love Chicago at this time of year. I get to think about all the things I'm thankful for, and in certain instances... yes, Epilepsy can be considered a part of my life where I will look back and really believe in my heart that I wouldn't be the same man without it.
Thursday, December 26, 2013
Monday, December 23, 2013
Early Mornings
For the last couple of weeks I've been going to bed early, and waking up very early in the morning. 2-3am, to be exact. What's nice about these early mornings is that the bar downstairs is closed, so there's no loud music or smoke billowing upstairs. It's illegal to smoke in bars in Illinois, but because it's a hole-in-the-wall bar, the police don't really care. It's not that we really mind it anymore, anyway.
What I do in the morning is turn of Netflix and watch a familiar movie or TV show, and either write in my notebook and sit alone with my thoughts. I know that I complain about this during the day, but for some reason, maybe because of the quiet or because I know Sara is home, I feel more relaxed and my mind isn't racing.
It seems as though during the day I feel like I should be somewhere else. Like, I'm jealous that others are able to drive to the grocery store, to work, or do anything else they desire. When I'm home during the day, I'm always trying to find my "purpose."
"Purpose" is one of the only words that comes up over and over in my therapy sessions. I believe that everyone should have a keen understanding as to why they were put on this earth and to not understand why is a bit heartbreaking.
Right now, I'm sitting, surrounded my gifted presents for Christmas. The tree is lit and the light from the tree are gleaming off the gift wrap. This sight brings back memories of me and my sisters being young and sneaking a peek at what Santa brought us at this time of night.
I remember one year in particular. Julie and I slept in the rooms closest to the tree and we both were wide awake. My parents and Jenni slept upstairs so we knew no one would hear us get up to get a glimpse at the gifts. I remember seeing a mound of gifts from the small light on the VCR that lit up the room. I was chosen to get a closer look by Julie while she stood watch by the stairs. I walked closer and closer and suddenly I felt myself slipping on one of the gifts. I fell and it made a huge CRASH, and Julie and I both RAN back to our beds, out of breath.
I got a Notre Dame Starter jacket that year. What a year it was. I probably still have that jacket somewhere! When I'm up this early during Christmas, all I can think about, and write about apparently, is how great it was to be a kid in our house. I imagine "Santa" swooping into our house and seeing the treats we left for him and how happy we made him with the little notes we wrote.
What a great writer I thought I was!
What I do in the morning is turn of Netflix and watch a familiar movie or TV show, and either write in my notebook and sit alone with my thoughts. I know that I complain about this during the day, but for some reason, maybe because of the quiet or because I know Sara is home, I feel more relaxed and my mind isn't racing.
It seems as though during the day I feel like I should be somewhere else. Like, I'm jealous that others are able to drive to the grocery store, to work, or do anything else they desire. When I'm home during the day, I'm always trying to find my "purpose."
"Purpose" is one of the only words that comes up over and over in my therapy sessions. I believe that everyone should have a keen understanding as to why they were put on this earth and to not understand why is a bit heartbreaking.
Right now, I'm sitting, surrounded my gifted presents for Christmas. The tree is lit and the light from the tree are gleaming off the gift wrap. This sight brings back memories of me and my sisters being young and sneaking a peek at what Santa brought us at this time of night.
I remember one year in particular. Julie and I slept in the rooms closest to the tree and we both were wide awake. My parents and Jenni slept upstairs so we knew no one would hear us get up to get a glimpse at the gifts. I remember seeing a mound of gifts from the small light on the VCR that lit up the room. I was chosen to get a closer look by Julie while she stood watch by the stairs. I walked closer and closer and suddenly I felt myself slipping on one of the gifts. I fell and it made a huge CRASH, and Julie and I both RAN back to our beds, out of breath.
I got a Notre Dame Starter jacket that year. What a year it was. I probably still have that jacket somewhere! When I'm up this early during Christmas, all I can think about, and write about apparently, is how great it was to be a kid in our house. I imagine "Santa" swooping into our house and seeing the treats we left for him and how happy we made him with the little notes we wrote.
What a great writer I thought I was!
Friday, December 20, 2013
Therapy at Home
A couple days ago I decided to take my therapist's offer to have a session over the phone. At first I was a little hesitant because I like to see her expressions when I'm talking about sensitive subjects, if you know what I mean. I think it's important to be able to look someone in the eye. What I realized is that, although is was only a ten minute conversation, it was far more useful in certain situations.
Sitting in my apartment, in my own element, and with no notes prepared, I could better translate my feelings to her. I've been having trouble communicating to her and to Sara about what is going on in my head. I feel as though the blog is the only thing I look forward to in my day. I mean, I look forward to Sara coming home, but during the day, there's a ten hour lull where I have nothing but my thoughts to consider.
What I've come to realize is sort of what my Mom says about her sleeping better when she knows that her kids are in the house; like when we come to visit in Beloit. I feel the same way when Sara comes home. She enters the door, we eat, I take my medication and, knowing she's safe at home, and I'm safe if I have a seizure. I immediately get very tired. I've been going to bed around 8-9pm lately and waking up in the middle of the night to watch a movie to put myself back to sleep.
I don't have much to say, because I haven't had a seizure in awhile and they usually are the inspiration for my writing. That's a good thing but therapy is only helpful if there's something to talk about.
Sitting in my apartment, in my own element, and with no notes prepared, I could better translate my feelings to her. I've been having trouble communicating to her and to Sara about what is going on in my head. I feel as though the blog is the only thing I look forward to in my day. I mean, I look forward to Sara coming home, but during the day, there's a ten hour lull where I have nothing but my thoughts to consider.
What I've come to realize is sort of what my Mom says about her sleeping better when she knows that her kids are in the house; like when we come to visit in Beloit. I feel the same way when Sara comes home. She enters the door, we eat, I take my medication and, knowing she's safe at home, and I'm safe if I have a seizure. I immediately get very tired. I've been going to bed around 8-9pm lately and waking up in the middle of the night to watch a movie to put myself back to sleep.
I don't have much to say, because I haven't had a seizure in awhile and they usually are the inspiration for my writing. That's a good thing but therapy is only helpful if there's something to talk about.
Wednesday, December 18, 2013
12/18/13
There's a slight confusion for someone who's in the hospital a lot. By that, I mean there's a part of me that misses the security of being in a safe place that, if I have a seizure, I know there's people to help me, and give them up-to-date information on how I'm feeling, and get information from them on how I can personally treat my symptoms.
I've written about this before, but there are days when I feel that a seizure is possible (my Epilepsy Twitter friends will understand this feeling). It's like a twitch in my brain; like a split second of my life is taken from me. Imagine someone taking to you and one of the words is missing from their sentence. Along with that is a dizzy sort of haze. It's not like what I describe as an aura, just a slight twitch.
A couple days ago, Sara and I were in a store. We split up to look at items in our respective departments and I was looking at watches (I'm on a watch kick again) and while I was looking at one watch, I had the twitch and all of the sudden I was looking at another, different watch. This happened several times.
I can't explain why I have these days, but I can guess that it was because it was hot in the store and it was very busy due to the Christmas season. Sara and I both know that temperature and stress are a couple of strong factors for me having a seizure, so it's no surprise that I was having these "seizure symptoms."
I didn't end up having a seizure, which is obviously good, but I know that in the next couple of days, I should be cautious.
***
I've been thinking about my style of writing lately, and I've come to understand that I write the way one would have a serious, spoken conversation. I have a friend who's a writer and after reading some of his work, I can tell the difference in the way we approach writing. I don't necessarily think my style is wrong, given the fact tat I'm not a trained writer, I just hope, and wish to learn a little more about proper writing style.
There are trained writers that write with a similar style, I know this, and I think a conversation-style is easier for most people to read, but I hope in the future, my style will become a little more polished.
***
I'd like to address my last post about our willingness to have a child. By no means are Sara and I trying to have a child at the moment or in I foreseeable future. I was simply stating that I think it's wrong for someone in our situation to be denied the opportunity.
I have a Twitter follower who was recently cleared to have a child by her doctors and it has got me thinking, and, to be honest, it has been weighing on me... us. I will become a father someday. I know I'll be a good Dad. It's simply a matter of health and priority. I want my child to come first, then my health. I would being doing my baby a disservice to bring him or her into this world and not be able to give it my full, undivided love and attention.
I've written about this before, but there are days when I feel that a seizure is possible (my Epilepsy Twitter friends will understand this feeling). It's like a twitch in my brain; like a split second of my life is taken from me. Imagine someone taking to you and one of the words is missing from their sentence. Along with that is a dizzy sort of haze. It's not like what I describe as an aura, just a slight twitch.
A couple days ago, Sara and I were in a store. We split up to look at items in our respective departments and I was looking at watches (I'm on a watch kick again) and while I was looking at one watch, I had the twitch and all of the sudden I was looking at another, different watch. This happened several times.
I can't explain why I have these days, but I can guess that it was because it was hot in the store and it was very busy due to the Christmas season. Sara and I both know that temperature and stress are a couple of strong factors for me having a seizure, so it's no surprise that I was having these "seizure symptoms."
I didn't end up having a seizure, which is obviously good, but I know that in the next couple of days, I should be cautious.
***
I've been thinking about my style of writing lately, and I've come to understand that I write the way one would have a serious, spoken conversation. I have a friend who's a writer and after reading some of his work, I can tell the difference in the way we approach writing. I don't necessarily think my style is wrong, given the fact tat I'm not a trained writer, I just hope, and wish to learn a little more about proper writing style.
There are trained writers that write with a similar style, I know this, and I think a conversation-style is easier for most people to read, but I hope in the future, my style will become a little more polished.
***
I'd like to address my last post about our willingness to have a child. By no means are Sara and I trying to have a child at the moment or in I foreseeable future. I was simply stating that I think it's wrong for someone in our situation to be denied the opportunity.
I have a Twitter follower who was recently cleared to have a child by her doctors and it has got me thinking, and, to be honest, it has been weighing on me... us. I will become a father someday. I know I'll be a good Dad. It's simply a matter of health and priority. I want my child to come first, then my health. I would being doing my baby a disservice to bring him or her into this world and not be able to give it my full, undivided love and attention.
Sunday, December 15, 2013
A Child
Since having Epilepsy, I think Sara and I have put our desire to have a family on hold. It's not like we were exactly ready to start a family in 2008, but the option was always on the table.
Now, it's a different story. My IVIG treatments are over and the doctors seem to want to work on my medication "mix" for now... something I've been gravely afraid of since I've had so many problems in the past. I have been to four different hospitals since 2008 and Mayo Clinic is the one that we both seem to trust the most, because they are willing to take the appropriate risks.
By that, I mean, they needed to see how my brain worked by having me off my medication in the EEG last November and they have at least tried to have me in various treatments before going ahead with new medications. Don't get me wrong, I trust NW, but the years we've been with them haven't exactly been the greatest, psychologically.
I wanted to officially state in this post that I want to start a family, but Sara and I are not exactly sure if we are "allowed" to have a baby, given our current situation. I don't believe that anyone should be unable to start a family, but I don't want to bring a child into a world where they are not number one on our list of priorities.
This is a post where I'd love to hear my reader's feedback. I believe Sara and I are good people who deserve the opportunity to start a family, and everyone around us would agree, but we can't get it out of our heads that there may be some people out there that would disagree.
I love my wife and I love my family. We have supporters, and I know the baby would be welcomed with open arms... literally. Our therapist said to us this past week that there will never to a perfect time to have a baby. I believe her, and I know I'd be a good Dad. I'd most likely be a stay-at-home Father, and I think... No... I know I'm up for the challenge.
Life... bring it on.
Now, it's a different story. My IVIG treatments are over and the doctors seem to want to work on my medication "mix" for now... something I've been gravely afraid of since I've had so many problems in the past. I have been to four different hospitals since 2008 and Mayo Clinic is the one that we both seem to trust the most, because they are willing to take the appropriate risks.
By that, I mean, they needed to see how my brain worked by having me off my medication in the EEG last November and they have at least tried to have me in various treatments before going ahead with new medications. Don't get me wrong, I trust NW, but the years we've been with them haven't exactly been the greatest, psychologically.
I wanted to officially state in this post that I want to start a family, but Sara and I are not exactly sure if we are "allowed" to have a baby, given our current situation. I don't believe that anyone should be unable to start a family, but I don't want to bring a child into a world where they are not number one on our list of priorities.
This is a post where I'd love to hear my reader's feedback. I believe Sara and I are good people who deserve the opportunity to start a family, and everyone around us would agree, but we can't get it out of our heads that there may be some people out there that would disagree.
I love my wife and I love my family. We have supporters, and I know the baby would be welcomed with open arms... literally. Our therapist said to us this past week that there will never to a perfect time to have a baby. I believe her, and I know I'd be a good Dad. I'd most likely be a stay-at-home Father, and I think... No... I know I'm up for the challenge.
Life... bring it on.
Thursday, December 12, 2013
Everyday Seizure
I've had a seizure everyday this past week, sometimes two. I'd like to say the streak is over but they've been coming at this time of night or just when I'm about to fall asleep.
We've had a lot of stress in our lives lately and that is probably the culprit. It's funny, a seizure. I tried to explain a seizure to Sara's Dad over the holiday and it seemed like an experience one would pay for.
I told him that it starts out like a dizzy sort of dream where objects around me seem to come to life. There are literally voices from my past in my head, memories from my childhood dance from one side of my brain to the other. I can hear my Grandpa talking to my Mom and I can picture watching a movie in front of the TV from when I was young. Modern-style memories can jump in there from time-to-time, but I mostly remember (what I can from when the seizure ends) scenes from being a child.
Then the strong side of the seizure starts. The part when I feel as though the memories are haunting me instead of fluttering around inside. All the faces from my past look directly at my face and I feel them staring inside me and it's quite painful. Once this ends, I shoot back to a psudo-reality where I see Sara with my magnet in-hand, swiping it across my chest every couple seconds and her asking me if I'm ok. I can usually respond with a nod yes or no, but my language is a mess.
No one enjoys a seizure but for a split second I wish that everyone around me could experience the aura side of a seizure so it wouldn't be so hard to interpret.
We've had a lot of stress in our lives lately and that is probably the culprit. It's funny, a seizure. I tried to explain a seizure to Sara's Dad over the holiday and it seemed like an experience one would pay for.
I told him that it starts out like a dizzy sort of dream where objects around me seem to come to life. There are literally voices from my past in my head, memories from my childhood dance from one side of my brain to the other. I can hear my Grandpa talking to my Mom and I can picture watching a movie in front of the TV from when I was young. Modern-style memories can jump in there from time-to-time, but I mostly remember (what I can from when the seizure ends) scenes from being a child.
Then the strong side of the seizure starts. The part when I feel as though the memories are haunting me instead of fluttering around inside. All the faces from my past look directly at my face and I feel them staring inside me and it's quite painful. Once this ends, I shoot back to a psudo-reality where I see Sara with my magnet in-hand, swiping it across my chest every couple seconds and her asking me if I'm ok. I can usually respond with a nod yes or no, but my language is a mess.
No one enjoys a seizure but for a split second I wish that everyone around me could experience the aura side of a seizure so it wouldn't be so hard to interpret.
Monday, December 9, 2013
Stress & Seizures
I've been dealing with a quite a bit of financial stress the last couple months and it has all culminated in the last week or so. I'm on disability for my Epilepsy so we're on an already tight budget and it's horrible that "people" would try to take advantage to someone suffering from an illness. That's all I'll say about that.
I know a thing or two about stress and seizures since that is a major trigger for me. The thing about a stress seizure is they open the door for stronger seizures in the days and even hours following.
I've been very depressed lately, and I feel like Sara and I need a break. By a break, I mean a bit of good luck; luck that most of you would just consider a good day.
This is a short entry, but I feel as though I needed to write, but I'm afraid of saying too much.
I know a thing or two about stress and seizures since that is a major trigger for me. The thing about a stress seizure is they open the door for stronger seizures in the days and even hours following.
I've been very depressed lately, and I feel like Sara and I need a break. By a break, I mean a bit of good luck; luck that most of you would just consider a good day.
This is a short entry, but I feel as though I needed to write, but I'm afraid of saying too much.
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