A Change is Coming

I don't know if all Epilepsy patients have the same problem, but I can feel a change coming on the medication front.

Seizures are pretty steady, about three a week on average. This can be good, because Sara and I can somewhat predict that if I have one, then a couple more will come fairly soon after.

When I talk about a change coming, I mean that I'm starting to feel the physiological side-effects making their way back into my system. When I'm around a large group of people, I think at any moment I could stand up and scream, or have any number of other "fits." I don't think about hurting myself, just that I could, if I wanted to, lose control.

When you're on medication, there's a difference between "real" feelings and feelings brought on by these medications. I can't quite describe it, but you can feel inside that it's not really my personality, just a side-effect of the meds. It's like being drunk... you can't blame a man for some of his actions while he's been drinking, but you can blame the alcohol. This difference, of course, is he chose to drink too much, and I'm forced to take these medications to control seizures.

I've become pretty good at noticing these feelings, knowing that they're not really "me." I made Sara aware of how I feel, and we're in the process of finding a new psychiatrist. The one I have now is pretty heavy-handed when it comes to medication, and he really doesn't understand the interactions between psychological meds and seizure meds.

Right now, I'm on Abilify to counteract any psychological feelings I might be having, like depression and mood swings, but one of the big side-effects has been weight-gain. This, in itself, could be a major depression trigger. I guess too much weight-loss could also be depressing.

Ideally, what I'd like is to be able to understand my body a little better, and have a mix of medication that, not only helps with my seizures, but also helps with my ability to live a more productive life. Lately, I just don't care very much about the consequences of my actions. I eat something bad for me without thinking it will effect my health, I go to bed too early without understanding that I will wake up at 3am, and I ignore chores without thinking that I could be frustrating Sara when she gets home and sees that nothing has been done. These are some of the side-effects that I can't "feel;" side effects that are unlike the anger and depression that the medications cause. Moments of clarity, like right now, are few and far between.

I'll meet with the new psychiatrist, and see what he has to say, but I want to make it very clear to him that I need help with the chemicals in my body, and the pain they may be causing me, and the people who support me.

It IS Always Sunny

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.

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!

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.

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.

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.

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.

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.

Sisters

For the last couple of weeks I've been dealing with a middle and inner ear infection. The doctor says is could be a side
effect of the IVIG, which I wouldn't be surprised since I seem to have gotten every other side effect of the treatment thus far.

It's been especially tough since I had the infection over the Thanksgiving holiday. I haven't really been able to chew or really close my mouth all the way. Tough.

As far as seizures go, I've had just a couple since my last post, one being just minutes ago. It seems as though I get the urge to write just after I have a seizure. Seems appropriate.

The Thanksgiving holiday was great, despite being sick, my family always finds a way to have a good time. Here in the US (to all of my foreign friends), we have a huge shopping day just after Thanksgiving called Black Friday. This year Black Friday started early, on Thursday, Thanksgiving night. It was awesome just to see all the crazy people in the stores searching for "deals."

On the Wednesday before Thanksgiving my sisters and I stayed up until midnight because we knew that most of the online deals would start the minute of Thanksgiving on Thursday. Both sisters ran to get their computers at 11:45pm that night in anticipation of midnight, but we soon realized that it was already midnight on the east coast and the sales had already started!!! Target didn't have their sale start until 6am, so I set my alarm! Hey, I have people to shop for, too!

It's so much fun hanging out with my sisters because we don't get to see each other very often as the live a distance away. So, when we do see each other we joke and talk about old times and gossip like a bunch of school girls... hilarious. The best part of all of it is we never get on the subject of my health. We stick to the good news... always. Even when the visited me in the hospital a month back, we just laughed and tried to lighten the mood.

I posted a picture of them above when I was in the ICU, all smiles even after hours of stress. They know how to make me laugh even in the most trying of times. For that, they're more than just family members, they're my best of friends.

Post-Seizure Post

I had a pretty strong seizure about 30 minutes ago and I'd like to see if I can describe these last few minutes.

Right now, I'm searching for every letter on the keyboard; taking about 5-10 seconds to type each word. I'd like to mention that I'm relying heavily on spellcheck and a lot of the words I'd like to use to explain what's going on might as well be French because I'm having a hard time recognizing them.

I took a couple Ativan, which is an emergency medication. I'm feeling it absorb into my blood stream and I have to say that it's a pretty nice little high. It's a very sleepy high, but I feel warm all over and I can't really feel my feet.

I would consider the seizure strong because the whole right side of my body went numb and I'm pretty sure I lost consciousness. By that, I mean I could've been technically awake, but I'm missing a good chunk of time in my memory of the last hour or so. 

***

I've spent about an hour writing this post, so far, and I'm feeling a little better. I'm starting to recognize words as I type them. Note: I'm going through the first half of my post and fixing grammar errors, because I get self-conscious about that sort of thing. Vain, I know!

***

I called Sara just after I realized what a phone was (no joke), and I'm pretty sure I was still having the seizure because I don't remember quite what I said to her. I remember apologizing a bunch, which I tend to do after a seizure. My face feels puffy, so I know I had a good cry. I know that may sound weird to not remember whether or not I had such an emotional moment but that's sometimes what happens for me after or just at the end of a seizure. Especially as bad as the one I'm recovering from.

I know I'm going to look back on this post later today and not remember writing this so I want to document as much as I can while I'm still in the posticle phase (seizure hangover).

I want to thank everyone who reads this blog and I want everyone to know that I appreciate their support. Without being able to write this for all of you to read would be devastating to me.

Crying again, dammit.

Signs of Weakness

I've long considered Epilepsy as a sign of weakness. Who wouldn't? I've had a lot of my freedoms taken away from me, freedoms that most would consider commonplace for a man my age.

Through all of this I've had a strong support system of family and friends. Just last week, a friend from college commented on a blog post that I'm "way stronger than I even know." It's comments like these that keep my pen to paper. I appreciate my readership. I look everyday to see if my blog has gotten any "hits," and everyday they're in the double-digits. So, overwhelmingly, thank you.

Epilepsy as a sign of weakness is an easy post to write because I'm so familiar with this feeling, but if I thought of my strength I probably couldn't get past the first sentence. I can only say that I've come a long way with little results, my body is in shambles, but there is still air in my lungs. My Dad would say something like that.

I remember last year after being taken to the ER in Beloit, I was coming out of the Ketamine coma and all that came out of my mouth to the Police Officer was accolades of my Dad and how I knew I would never have his courage or strength. My sisters and I think of him as a super hero. He fought in a war, was a cop, and survived a terrible car accident all before he hit 40. I mean, he has the scars to show for it, but his positive attitude is what makes him our hero.

Maybe I do have a little of his courage and strength in me and that's what makes me his son. I know that there's a long, winding, muddy path in front of me but if I look back at these past five years, I'd see no path at all, just a pit from which I have just climbed out.

Holiday Air

Last night, Sara and I went to one of our favorite places to go during the holidays, the LaGrange Antique Mall. During this time of year all the dealers bring out their vintage Christmas decor and trinkets and it's fun to walk around and visit the memories of our childhood. A lot of the items are from the 1940s-1960s, but because a lot of these types of items are handed down, we had them in our homes. I grew up in a family where Christmas was celebrated immensely. We had all the holiday lights, toy trains, tinsel, the works.

Last year during this time, Sara, me and my family were traveling back and forth to Mayo Clinic where we celebrated both Thanksgiving and Christmas in hospital rooms and hotels, so we didn't really get a chance to really decorate or put up a tree. Plus, we were moving to our new apartment which made the whole season sort of a wash.

I can't say for certain how this year will go because things still seems to be pretty stressful, but it was just nice to go somewhere quiet, like the antique mall, and stroll around laughing and sharing memories as we found them.

While I was there, I found an old Leica point-and-shoot camera in great condition and I just had to have it. It was cheap and I knew just what I could do with it. If you know me, you know that I'm a "collector" of these types of simple cameras. I just love the look and feel of an old 35mm camera, and the shots I hope to get out of them. I have a bunch of film just waiting for the time when I can bring the camera to my eye.

Every time I find one of these cameras or rifle through my collection, I think about what new event will spark the photographer inside me to finally come back to the surface. I loved shooting, and still today I love the concept of photography, but I just can seems to get myself out there and take photos.

Already, I've cleaned the camera I bought last night, found a battery and downloaded the manual off the internet. I've been taking practice shots with no film all morning, so I know every feature once I decide to slip the camera into my pocket and step outside the door. Right now, I'm writing in my journal to plan special events in which I will bring the camera. Maybe this will help me get over the writer's block-type hump I seems to be having for photography.

Maybe breathing some of holiday air from last night will remind me of when I was a kid and Mom would have her camera ready to document every present, every smile and every silly moment we had during the holidays. Maybe this is the year Santa will finally bring me some inspiration.

Cold Sweat

On Saturday, I had a seizure just before laying down to rest. I usually put my phone and VNS magnet on my nightstand, and just before the seizure started, during the aura phase, I was aware enough to grab the magnet and swipe it over my chest to activate the device.

The seizure was on the strong side so I laid in bed until I felt ok enough to move around. I knew that I had to call Sara to let her know what happened but, as I was in the postictal phase of the seizure, I was confused and couldn't find the phone that I set on the nightstand.

The concept of a phone and what it looked like was fuzzy and even though the phone was still on the nightstand, I looked at it and told myself that it wasn't there; I had to search the house. I, quit literally, floated around the apartment searching for the lost phone, in random places like in the fridge and under the chairs until I found myself back at the bed, staring at the phone.

I looked at it for a good couple of minutes before picking it up and asking myself, "is this what I'm looking for?" I fiddled with the phone until it turned on and tried to figure out why I was holding it until the memory of making a call came back to me. It was then that I started to have a fever sweat and dry-heaved from the nausea that sometimes follows a seizure.

I finally made the call to Sara and laid back down. I took an Ativan, a seizure rescue medication, and drifted into a stoned, staring-like state. Sara was home by the time I fell asleep and when I woke up it was already dark. I didn't remember the seizure or why I was laying down at first. I had to search my memory and wanted to ask her what happened but before the words came out of my mouth, I remembered.

I mentioned this in my last post. My seizures come in waves. Once the "seal is broken" for one seizure, I know to expect several more. This might turn out to be a week where I'm either here at my desk writing or searching the house for an item that was never lost.

Galena's Seizure

Yesterday, I rode along with Sara to Galena, IL to return some items from her museum's folk art exhibit that ended last month. It was a fun trip; we met some pretty interesting people, ate a great lunch and had some funny "would you rather" conversations while driving. We had to travel in the Wheaton Park District van, which was fun because it's huge and loud!

After a long day, I decided to go to sleep early... earlier than I already do. I took my medicine and fell right asleep. I woke up in the middle of the night with a headache and it took me a minute to realize that I had a seizure while sleeping.

The difference with this seizure is that I was incontinent during sleep. I'm not really sure how to use that word because a.) it has never happened during a seizure and b.) it's so embarrassing that I debated on whether to write about it. I decided that because it was eating me inside so badly that the only was to really get past it was to write.

This isn't really that big of news because when I was first having seizures and my doctors were mixing medications, I had this problem but not because I had a seizure, but because there was so much medication inside of me, I was sleeping too deep. Blacked out, basically.

You hear about this when people are drunk or on hard drugs, but apparently it's very common with Epilepsy patients. Even with this knowledge, I can't seem to get over the thought of a grown man having to deal with these issues. I mean, isn't having a seizure enough?

Sara handles these types of situations systematically, at this point. Whether it's watching me while having a seizure, driving to the ER in the city at 2am, or stripping the sheets after a night like last night. I couldn't imagine where I'd be without her. You could say that this is a pretty bad attempt at writing a love letter.

I know I should feel like I have to constantly apologize to her because of a seizure and all that goes along with it, but I do... almost annoyingly. To be honest, for me, it's a sign of a seizure. I have a helpless feeling inside me and I know there's nothing I can do to better our situation, so I just keep saying "I'm sorry, I'm sorry."

This morning I noticed that I did, in fact, bite the tip of my tongue which is another sign of a seizure, so that made me feel, oddly, better. To have a little closer on the issue was nice. We ate breakfast and talked about it a little. It was my first seizure in weeks, but we both knew that a seizure was coming. They tend to lie dormant for a period of time and reemerge with a vengeance.

The treatments seem to be going well, and besides a little headache post-treatment, I feel just fine. That's the problem with Epilepsy. I look ok, I sound just fine, but beneath the surface is a dim flame that can spark at any time.

Smith vs. Sedaris

Last weekend Sara and I went to see "An Evening with David Sedaris" at the Pabst theater in Milwaukee. If you're not familiar with his work, he's a author that writes mostly about his experiences in life interacting with people, primarily his family. He uses comedy to express himself, unlike what I've been trying to do with this blog, but he does it in such a way that comes across very endearing and intellectual.

It was a rainy and cold night, but we were trying to enjoy ourselves as much as we could given the present circumstances with not only me but what has been going on in our family; it's been a very trying time to say the least. So much so that I've even been having texting sessions with my therapist.

We stayed at the County Clare Bed & Breakfast and had just enjoyed a friday fish fry. I was worried about my stomach, because eating large meals with my medication can cause me to feel ill, if you know what I mean. We drove through the quiet streets of Milwaukee, and when we arrived we found our seats and took in the beauty of the theater.

Once David Sedaris took the stage I tried to really absorb the way he read and how he presented himself on stage. It was interesting because he was constantly making notes without a pause in his reading. I feel like it takes a lot of skill to do this. I mean, he's always working, even when preforming.

I've been talking to Sara about writing and what kinds of benefits that it has brought me. It's fun talking about the blog to her because it's something that I've really come to love. Sedaris said during the Q&A portion of the evening that a writer has to write every day, even if it's just keeping a journal. I'm getting there, I think, but have a long way to go.

Although this blog is mostly about Epilepsy and how I manage my life around my illness, I feel like I could grow, but first I need to expand my willingness to really engage life. I haven't been able to do that in a while.

When I was a photographer, my job was to engage people and get the story, not only visually, but editorially, as well. I mean, it wasn't actually writing articles, but I had to provide the "gist" to my editors. It didn't allow me to be very creative, I left that to my photos, but I had to put myself out there and engage my subjects after the photo had been taken... getting names, dates, quotes, etc.

While sitting here in the apartment, I'm not engaging life. I'm only really getting to know myself. While that sounds positive, you can only look into yourself for so long before you start to nitpick and critique every aspect of your personality.

What Sedaris did after his talk was, not only sign books, but talk to his fans and answer their often quirky questions. Questions I'm sure they hope are unique enough to end up in one of his writings. There were a lot of egos there that night; people who thought they understood him perfectly, when in actuality he could see right through them.

After the talk, Sara and I retired to the Inn and had breakfast the next morning. I felt very tired, like I always do when I sleep outside my own bed, but I didn't forget the feeling I had while watching David Sedaris work, because that's what he was really doing. His writing is fluid, and that's what I took away from that experience and that's the kind of writing I wish to attain in the future.

Friends and Fear

I've reached 4,000 views on my blog and I want to thank all of you for your support...

I want to talk about friends. I mentioned in my last post that friends are not something I take for granted and I wanted to reiterate that fact. The reason being, I ran into an old friend at the Milwaukee Public Market this past week and I didn't quite know how to react. I think because she's an old college friend and I'm so removed from that time.

So much has happened since then, for me and for her, I'm sure. It was a quick encounter, but I keep running through it in my head because there was a time when our lives ran parallel and now they couldn't be more different. I'm sure that's true for most people after not seeing someone for an extended period of time, but this is one of the rare times this has happened to me, and it inspired me to write.

As I've mentioned before, I spend a lot of time at home in our apartment. I'm fairly disengaged from a lot of the things people find themselves doing in their normal lives. The awkward feeling I had when I ran into my old classmate is really a self-conscious feeling.

I've become far more aware of my faults and any confidence that I had in any area has been greatly deminished. I've lost then gained 50 pounds, I've held then lost three jobs as a designer and one as a photographer... I think anyone would feel this sense of "loss" if this had happened to them, but the thing that ties it all together for me is, obviously, Epilepsy.

The notion that I could have a seizure in public at any time really dampens my willingness to really get out there and take risks. By, risks, I mean socialize, attend events, meet with old friends, and not get all clammy when I run into an old acquaintance. I've had seizures in public before, I know I can't live my life in fear, but I also have to respect the fact that seizures are never convenient. 

I have an old fortune cookie message posted on my fridge that reads, "It is during difficult time that true friends become apparent." My readers are not just acquaintances to me. I'm opening up to you the way a lot of people wouldn't even open up to a loved one. I know that by writing, I'm taking a risk. This is us having coffee in a crowded restaurant. This is us at a gallery opening, or concert. This is us running into each other at a public market. 

I'm in my pajamas, in front of my computer in a quiet apartment. You could be anywhere you'd like. But, by reading this, we're together. By reading this, you know me.

Track Marks

I've been getting regular IVIG infusions for weeks now, and I'm starting to notice track marks on my arms. I won't show any photos because I'm pretty embarrassed of them, but I know they're there. I try to wear long sleeves to avoid any attention the same way I did to hide the scar on my wrist from last year.

I know that this my sound a little vain, and I know it's all a part of the process, but I feel as though I'm living at the hospital. My urine smells like the "hospital" for days after the treatments and my arms are all marked up... it reminds me every moment that I'm still sick.

I've had seizures nearly everyday for over a week, the strongest coming last night. There was no aura to warn me that a seizure was coming. I immediately entered a dream state and getting out my magnet to activate the VNS was instinctual. During the seizure I (according to Sara) said that there was no "orgy," but what I meant to say was "aura." Kind of funny, maybe I shouldn't watch Louis CK stand up comedy all day anymore!

I've found myself a little depressed; not the kind of things that can be spoken about to my therapist because speaking to the therapist is mostly hat I'm depressed about. It's complicated, but after I hold in my feelings about something I feel like they're safely in my past, but talking about them openly unzips these thoughts and literally haunt me.

Just about when I'm trying to sleep or when I'm in the shower, time when I'm not preoccupied, I'll clench my teeth and remember a moment from sometime or something I want desperately to forget.

I think a lot about my last job in Milwaukee and how much I loved it and how naive I was about where I was and the risks I was taking. My life was too delicate to take on such a large task. I'd wake up everyday with a smile and end everyday with a quiet confidence, all along forgetting that at some point the dark side of my life would make an appearance.

For someone with a pretty bad memory, I remember every single moment in Milwaukee and try to think of what I would do different if it were today. I lost my confidence as a designer, I lost every good memory I could've had there by somehow connecting it to a negative event or something I should've done differently, but most of all I lost good friends. Friends are not something I take for granted because I don't have very many of them. I'm not looking for pity here, I'm simply stating facts and trying to work them out through the written word.

In Milwaukee, I dealt with the same issues that I'm dealing with now, but I didn't respect my disability. Today, I sleep though out the day to avoid getting overtired which can lead to seizures. In Milwaukee, I would take a lunch hour nap in my car to hopefully do the same. I would eat throughout the day because at the time I was taking medicine four times during the workday.

Although, I was very happy, I was very nervous about my job and my future with the company. Depression and anxiety lingered, so bad habits were ignited. One of our clients was a beer company so everyday at five we would have a beer for staying late. Someone would often pass them out and it created somewhat of a camaraderie amongst us. Eventually, I was the one passing out beers, hoping to make friends in the process. We were encouraged to play our favorite music over the PA in the office and I found a couple albums that I really liked and shared them, as well.

By the end of the long day, those who were left in the office would sit and chat over a beer and music and talk about our lives. I thought this was great. I had a team behind me, helping me with projects and ideas, we all worked as a group.

It wasn't long before I had a couple seizures at work. I hadn't told the higher-ups that I had Epilepsy, so there were a couple times when I had to either leave early or sit out a couple of meetings. I know that this didn't look good for me, but like I said, I wasn't respecting my disablity. I ignored it and adamantly pretended that I was like everyone else in the office... young, strong, and competitive.

Eventually, the end had come. I told the friends that I was staying with that there was no way for them to understand what was going on in my head because even I couldn't understand it. We argued and cried, I wasn't ready to go. I still thought that I was a good enough designer to work, but the brass didn't see it that way. I now believe that they were right.

My eventual willingness to be let go was because I knew I needed help, and help wasn't going to come so far away from Sara. Months later I cut my wrist to "relieve the pressure" of the weight pressing down on me. I laid down on the floor while Sara wrapped a towel around my arm and I just kept repeating "I'm tired, I'm just so tired." I heard the muffled sounds of paramedics and police trying to speak to me, but their persistence just led to anger and I fought treatment all the way to the hospital.

I'm weeping as I write this. There's an urge to vomit because I know this post has been a long time coming. Not everyone will be happy with this post, but from my heart it's the god's truth.

"Everything is going to be ok."

Sazzle's Blog

A twitter friend named Sazzle wrote a post on her blog today about her Epilepsy and desire to start a family. She explained her nervousness while talking with her neurologist about her plans and how her seizures and medication could possible prohibit her from having a child. Sara and I have had the same conversation with our doctor with similar results. A simple, yet emotional "Okay."

Sara and I asked similar questions about my medication, though being a woman with Epilepsy, her conversation with her doctor held a little more weight. I urge you all to give it a read as to understand what it's like to have to ask these tough questions and deal with the issues that a lot of people in the world simply take for granted.

Below is a link to her blog. I haven't really shared to much about a possible family of my own because of the major hurdles that Sara and I have yet to overcome, but it is certainly very much a hope and dream. I'd like to wish her a congratulations and I hope that she and her husband are aware of the support all of us in the Epilepsy community share... worldwide.

Sazzle's Blog:
http://sazzle262.wordpress.com

Animals as Therapy

Without sounding like a "Cat Man," I'd like to share a little bit about my experience with my relatively new and unofficial therapy cats. I have two young ones, and it seems like they can tell when I'm having a "bad day," which is we call a day with seizures or other medical-like problems.

They'll know before I do, that there's something off about my mood and swarm me and treat me like I'm the young one and not the reverse. I'm grateful and I don't know what I'd do without them in this time alone at home.

They're a welcome distraction.

Awful Luck

Yesterday, My Mom and sister, Julie visited Sara and I in Illinois for lunch and shopping. The day was ok, I was feeling a little "off" but chalked it up to the heat and humidity.

After a little shopping and lunch, we saw a huge box store called The Dump; we've all seen these commercials in the Chicago area. Just funny. After a ton of laughs, we decided to make a short pitstop there.

Once inside, we were making our rounds and out of nowhere, I was punched in the back of the head by a teenage girl with Autism. It was nobody's fault but my head was pounding after the incident. Sara decided to take me home and then she met my family again at the mall.

Once home, I immediately had a very strong seizure. Then another, then another. Even this morning, on our way to breakfast I had a very strong seizure. Four in less that 24 hours.

I feel ok, (for now), and there's really no explanation besides the heat, stress, and a good pounding in the back of the head! We can laugh about it now but the last couple of hours have been hell.

We saw the family leaving the store after she hit me, so I'm sure they were embarrassed, and so was I. I apologized to Sara and my family for having to go home early, which they said I didn't have to do, but I'm glad I left. Having seizures in public is no go and for good reason.

Just another day as an epilepsy patient.

Hospital Hamburger

When I was in the hospital ICU a couple weeks ago for meningitis, this was what was left of my dinner. A tuna salad wrap with peaches and angel food cake. I took what I could get at that point so I couldn't complain, but once Sara and my sisters returned from Jenni's birthday dinner, (yes, she's a saint by spending her birthday with her bro in the hospital!), they asked if I wanted anything from the cafeteria. I said "HAMBURGER!" They chuckled and obliged.

The thing about me, is I love Northwestern's cafeteria, it's better than one would think. Hopefully, you're never there, but if you are, try it and you'll be forced to agree. Anyway, the kitchen was closing and so the cook had to re-heat a burger from earlier in the night so it was a little dry, but it was one of the best burgers I've ever had!

They brought me a banana and some baked chips as a side dish and I got all emotional. What an experience. I had two dinners that night, I deserved it after only eating a turkey sandwich the day before. They keep extra sandwiches in the fridge at the nurses stations, those are actually pretty good, too. Deli-style turkey, none of that slimy crap. I should be a food critic, I'm looking at you Todd!

***

Yesterday, I had my third treatment of IVIG. It was a horrible experience. Just working with the nurse who didn't understand that I was put in the ICU last time because she ran the IV too fast and, of course, she ran it too fast again. I didn't have the same side-effects this time, though. See, the thing with IVIG is that because it's a blood product from all of you kind donors, each dose is very different with different side effcts. Yesterday, I just had a mild, caffeine-like headache... NOTHING like two weeks ago. I drank my weight in energy drinks to hydrate and slept as much as I could, given the amount of pre-meds they administered to ward off any allergic reactions I may have.

Sara's been dealing with the hospital's administrative staff to deal with the nurse and her negligence, so she's obviously stressed, but I'm taking her out to sushi tonight to celebrate our third wedding anniversary, so hopefully that will calm us both down and get back to our normal routine. Routine being in our pajamas by 8pm and watching the news and laughing at our cats. I love life with her.

Bendy Straws

This was the view from my hospital bed last week for Meningitis. I woke up from a short sleep to find that the nurse had brought me some water with styrofoam cups and my white bendy straws.

Those in my family know that with all the stays I've had in the hospital I try to find the smallest things that make me happy, although sometimes very odd; one being the hospital straws. They're white, bendy and are wrapped in white paper.

I'll drink anything out of them while I'm there, there's just something comforting about them. Call me crazy. The thing is, I can't find them anywhere outside of the hospital, so before I left on Friday I took the remaining four straws to enjoy while recovering at home. I still have a couple left at home now, and I'm actually saving them for a "special occasion." I imagine myself waking up in the middle of the night, not being able to sleep and popping one of them into a glass of cool water to splash back while watching the early news, waiting for the sleep to come again.

Hopefully no one has to spend as much time in a hospital bed as I have these past five years, but a lesson to be learned could be to try to take a horrible situation and pick out the small, seemingly minuscule things to take advantage of and look forward to. When I was still working I looked forward to that first cup of tea or coffee in my favorite mug, preparing it then taking the first couple sips while having a friendly conversation with my friend before starting the day.

People always say that "there's someone out there worse off," and although that may be true, just know that person is finding little victories throughout the day. Whether it be writing a blog post, making a cup of tea, listening to that one song that lifts them up or even, yes, unwrapping a little white bendy straw.

There are more victories out there that defeats. Find them and take full advantage of them while you can.

Aseptic Meningitis

Last Monday I started my first of 14 IVIG treatments for epilepsy at Northwestern Memorial Hospital in Chicago. The first treatment on Monday, despite being a little nervous, went off without a hitch. I felt a little tired but overall good. We went back for my second treatment on Tuesday and just after the treatment I started having a mild headache. Because headache was common with these treatments, I thought that it would pass but it did not. I woke up early Wednesday morning with shooting pains running from my eyes all the way to the back of my neck. I woke up Sara to let her know that this was happening and we called the ER to ask for advice on the situation and they said to come to the hospital immediately.

Minute by minute the pain got worse and by the time we reached the ER, I could barely walk or talk. The attending Neurologist said that it could be one of three types of Meningitis, Bacterial, Viral or Aseptic (meaning neither Bacterial or Viral). They gave me pain medication with no relief while they prepared for a lumbar puncture.

The doctors administered the LP (as they called it) but it took three punctures in my spine before they could reach any spinal fluid. I actually didn't mind this pain because the only thing I could think about was the pain in my head and neck. Once they got the fluid they needed they moved Sara and I to a secluded room in the ER just in case in was Bacterial Meningitis, because it's contagious. My sisters drove down as well and everyone had to wear protective masks around me.

They decided to admit me to the Neurology wing of the hospital because I was an Epilepsy patient with Meningitis. There they could keep better tabs on my readings and possible seizures. After 14 hours sitting in the ER I finally had a room. It was all very frustrating for me and my family, but we needed to know what was happening inside me.

They tests ran for two days before they ruled it Aseptic Meningitis due to the IVIG treatment. They said it's a rare occurence but could happen again. The next time, though, we'll know what it is and I probably won't have to be admitted.

We're still on for the next IVIG treatment but this time they're going to pre-medicate me and run the IVIG fluids slower, as to avoid any adverse reactions.

Today, I still have a pretty bad headache, but managed well with medication. What a week.

Monday Countdown

On Monday I start the IVIg treatment for Epilepsy. I have to admit I'm a little excited, partially because I know that, in the hospital, I'll be safe from any side effects that could arise. I do like the hospital for some reason; it relaxes me to know that there are people there to help me. I don't have to be afraid that something is going to happen out of my control because these doctors and nurses have "seen it all before," as they say. I know that I can put my headphones on and think about my family and friends and how this will effect their lives for the better. Always having to worry about your son and husband takes a large toll, and it has show in the last five years. Five years this past Labor Day to be exact.

This summer has been, for a lack of a better word, horrible for me. I've had to sit at home and stew over the upcoming treatment; hoping it will help and worrying that it won't. I spoke to my therapist about what I've been doing to pass the time and my answer has been overwhelmingly... sleep. I find that once Sara leaves for work at 8am, I mull around the apartment for a couple hours, watch Netflix, then nap until it's time for her to come home; that's when I start my day, 5pm.

I'm very restless because of the Abilify the doctor has me on to counteract the seizure medication side effects, but a side effect of Abilify is something called akathisia, which is basically restlessness. I have another medication to counteract that but I feel like there is just too many chemicals in my body, you can just feel like there's too much; I don't know how else to describe it. I feel clammy and my eyes feel sunken and bloodshot. I have no energy, staring blankly at the TV might as well be a blank wall, the sounds around me are muffled and my thoughts seem to drift.

I've been indulging in my depression, drinking a bit when Sara gets home and eating junk food to feel like I'm having a bit of fun during the day. It doesn't help, but there's that half hour where I think good thoughts and feel like today is going to be a good day, different from the rest.

Holidays

The holidays are very important to me and my family. We've definitely become closer since 2008 and even closer since last year's Mayo Clinic trip(s); you can see me there on Thanksgiving night during my EEG. I remember going in for the EEG a week before, thinking that there was no way I was going to miss the holiday with my family. I was wrong, but my family is strong and so they made the trip up to Minnesota to be with me. When this EEG photo was taken, my Mom and Sara were busy across the street ordering Topper's pizza; they snuck me some slices just before midnight. We sat there in the hospital room, laughing and telling stories about our day.

I made our yearly reservation for Christmas at the County Clare bed and breakfast in Milwaukee this morning. This made me think about how I had to cancel last year's reservation because we were making another one of our trips to Mayo Clinic. That trip would include my infamous PET scan and lumbar puncture. For Christmas last year we were stuck in a hotel room watching a marathon of "A Christmas Story," and ironically playing the "Game of Life" on my Mom's iPad.

Sitting in a hospital room hundreds of miles away from home with my head hooked up to wires, and my family bringing me pizza at midnight. Then, a month later in a hotel room playing games and watching movies after getting scanned, poked and prodded... those were the best holiday's I have ever had. It has everything to say about what someone should be thankful for. 

Independent Study

In college, I used one of my elective courses to explore an independent study with my instructor Dale Shidler. It was really my first attempt as a writer and as a photographer. Basically, I shot photos from around the Third Ward in Milwaukee on a snowy day and graphically designed my words onto the photograph. One of the photos is shown here; I have all of my finished work on a disk somewhere and I'll share those once they're located.

I think Dale might've been a little confused as to what exactly I was writing about because they were a little abstract, and I have to admit they were a little abstract in my mind, as well. I couldn't quite articulate what I was trying to say into words. I did come away with something though. The independent study never left me, I have thought about it for the last ten years and have obviously used it in many forms since then.

**Seizure** Apparently, this subject has gotten my brain all worked up!

As I was saying, I started writing this blog in 2010 but I've kept handwritten journals since college. It wasn't until I had my first seizure that my words had actually made sense in my mind. I was saying something, I was communicating, I had an audience.

Dale was my first audience member. The independent study is where I was first challenged as a writer and every piece I've written since then I've gained more and more confidence. Hopefully, in the days, weeks, and years to come my understanding of my thoughts will grow along with those of you who wish to read my words.

Homesick

Last week I had seven seizures in seven days. We may not be out of the woods yet seeing as though the heat seems to be the culprit. It's tough because I've been staying indoors and haven't been able to ride my bike on the prairie path or walk or the store. I can tell that there's a bit of depression lingering because my sleep during the day isn't fueled by being tired but rather a way to move the day along faster until I see Sara again at night.

I've been looking at old photos and found this one of Sara and I just when we moved in together in 2004. I was unpacking and she was preparing for her trip to Ireland where she would study for a month.

I look at this photo and remember all the good things from this time and seem to forget how hard it was to be without her while she was in Ireland, and I was alone in a new city. I'd done it before when I moved away to college in Milwaukee, and I do remember being very homesick, in fact that's the subject of my written senior thesis.

In Milwaukee I missed my house, my family, my dog, my room... but in Chicago all I missed was Sara. She was "home" to me. I think that's also true today. During the day, I'm just a man sitting in a room full of stuff, but when she walks through the door it becomes our home and I become a husband.

Enjoy the View

I've been searching for a way to relax that doesn't involve prescription drugs. Seriously. I have so many drugs pumped into me to help relax my brain and my body, but not my mind. It races and dwells on the deepest subjects we have as people. There are distractions but none of them are very healthy... television, etc.

When I first graduated college I had a similar amount of time to "think," as the job market was a lot like it is today. After sending out all of my resumes, I would walk up and down the lakeshore of Milwaukee for the rest of the day. I wasn't really into photography yet, but I did have my little 3 megapixel camera with me to document any interesting events. I wish I would've documented more.

I remember carrying my point-and-shoot and huge phone, waiting for a possible employer to call. When we visit Milwaukee these days, we pass a bench where I used to sit in the morning making my phone calls. I was a wreck during this time, I know, but for some reason all I remember are the good times I had walking and sitting on that bench overlooking the lake.

New Forms of Media

This week, with the help of my family, I bought a tablet. Don't worry sister's, I'm doing my best to pay it back!

I've found it to be very helpful in accessing new forms of media like magazines and newspapers, anywhere from local to national. This is good for me because I often spend hours at home, looking for something to fill my time. I know a lot of you out there would kill to have the time I currently have, but trust me, after a month, you'll be praying for a chance to get out of the house and rejoin the world.

I've already downloaded a couple magazines from Milwaukee, so I can keep up with what's going on north of the border, plus I've had the opportunity to see the tablet-formatted version of many newspapers from around the country. It's so interesting to read columns from writers in Seattle and Washington D.C., Maine and Minneapolis. I even subscribed (trial basis!) to an outdoors magazine so I can learn a little bit about what it's like living away from the city.

I'm having fun today, that's all I can really say. I know it's something small and not really exciting to most of you, but for me, it's a small victory to have a day where I can explore and discover.

Fired a Shot in Anger

I'll always consider myself a photographer even if I haven't shot professionally in years. I like to use the term "fired a shot in anger" because I felt so much passion for photography before I started having seizures. Any of the work I've done since has been forced; there is no passion when I pick up a camera.

All day I've been pacing around my apartment holding one of my 35mm cameras trying to get a sense of what it felt like to put the lens to my eye and snap the shutter. It felt right to write about this because all the while I was shooting I knew there was no film in the camera. That's the essence of how I feel about photography.

While pacing, I was thinking about writing and how I could put this into words and really pushing myself to focus, sit down and take a moment to jot down what I've been feeling. I've been moving from chair to chair, looking out every window, trying to think of something other to do than write. Basically, a depressed sort of procrastination.

Below is a link to my flickr page where I keep some of my best work. I like to look at the photos and think about what was going through my head. Composition, color, light... that all comes pretty easy to me, but passion is something that I just can't seem to grasp.

http://www.flickr.com/photos/smithjryan

MRI & VNS

I've been noticing an increase in twitter/facebook posts about the Vagus Nerve Stimulator and what side effects it may cause so I thought I would share a little bit about my experience with the device.

I had the VNS implanted in 2010 and since then I've noticed a reduction in the length of my seizures and the recovery time (posticle) but not necessarily in the frequency. I have noticed that I've been conscious for most of my seizures when I could certainly tell you that the strength of the seizure should've caused me to black out... call it an "epileptic instinct".

It's very hard to explain, but when I feel the aura quickly manifest into seizure activity, I can tell you without question whether or not the seizure was strong enough to generalize had I not activated the VNS. Those seizures last a bit longer and are actually painful, like my head is in a vice. Most doctors will tell you that a seizure victim is feeling no pain, but with the VNS keeping me just on the edge of generalization, they do emit pressure and pain. I am a patient and not a doctor so I can only back up these claims with first person experience and this might be different to each individual, but these could be some questions to ask before considering a VNS.

Now to the MRI issue. During my first seizure in 2008, I broke my left scapula and severely injured my right shoulder. Because the left was broken and my seizures were still not under control (whatever that means), I had surgery to repair my left shoulder and the VNS implanted. But, now that my right shoulder injury is in the spotlight, we've hit a bit of a snag... VNS and MRI. There are apparently some more sophisticated MRI machines that can accept a VNS patient but because the VNS is still relatively new, these hospitals aren't willing to take the risk.

My "team" has been working with a couple different hospitals and Cyberonics (VNS manufacturer) to jump some of these hurdles but it has been slow going and mostly on the back burner because my seizures still aren't under control.

The VNS is like a security blanket. With it, I feel like I have a bit of control of my seizures that is more on the physical side and not just on the chemical. Mediation has hurt me almost as much as it has helped; the VNS has its side effects but nothing – nothing like what I've had to go through with the chemistry experiment in my body.

There's my spiel, thanks.

A Better Man

Both Sara's and my own family is fairly close in proximity, only about an hour drive from any one member, but at times (as with a lot of families) proximity and closeness are two different things.

When I first was released from the hospital in 2008 with the diagnosis of Epilepsy, I felt this uncontrollable need to apologize to Sara for any absence she'd experienced from me. I looked at the years prior and saw a man who was always looking into the future, with my desire to become a successful photojournalist while keeping my graphic design talent in my back pocket. I thought I could do great work and see great things beyond what I saw every day, and I think that included my home life. I always loved Sara and our families but I don't think I had may list of priorities in the right order.

I'd like to think that I would've had this realization without getting sick, but the reality is it coincided exactly to the minute with my first seizure. My trouble in the following years was my inability to properly mourn the man I could've been and embrace the man I've become... by all means, a better man.

My Dad always says there's adventure in everything and I think I've come to understand that concept. This illness has been an extremely difficult ride but an adventure none the less; and with this adventure I gained a renewed relationship with my family, a girlfriend has become a wife, and an empty home is now full. 

Let the adventure continue...

Akathisia, Twitter

Akathisia is severe restlessness; it's a side effect of Abilify, which is for the depression caused by my seizure medication. For Akathisia, one of my doctors prescribed Propranolol. Notice a pattern? I'm supposed to take it "when needed" but it's been hard trying to notice when I need it or really need it. 

I took it just before sitting down to write because I found myself pacing throughout my apartment, I just can't sit and concentrate on a book or movie. I'm feeling it kick in now because I'm able to focus on the keyboard as I type and not on the thousand different sounds going on around me... a truck passing, a man talking on his phone, a dog barking far off in the distance.

I feel like I should've had this kind of medication at my disposal even before I was on Abilify; when I worked as a designer and had to sit at a desk and concentrate on my craft. I know this is a short term fix but right now, I'm able to think clearly and about what I want.

This past week I re-entered Twitter to see if I could find any other Epilepsy patients that I could get support from. It turns out (not unexpectedly) that there are many of us with the same intentions. I found myself "following" many different people, from different countries, backgrounds, and beliefs, but with one stark similarity... Epilepsy has changed their life as it has mine.

Another amazing discovery... a healthy portion of them use blogs and podcasts to bring their message to the world. Now, I find myself reading their stories as they read mine. I mentioned in a tweet that it's been a long time, possibly the first time, since I've spoken to anyone about my life with seizures that hasn't been a doctor, close friend or family member. 

My doctors have been pushing me to join some sort of support group, but it's not as easy for me to speak these words as it is to write them and get a response. I'm simply not ready to use my voice.

A Voice to Share

It's been over two months since the last steroid treatments; we've been waiting for the new IVIg treatment to start. The IVIg treatment isn't "officially" designed to treat epilepsy, that's why all of the doctors surrounding me have been using words like "experimental," or "let's just give it a try." Not very helpful words for someone trapped in their house for months on end.

I had another seizure last night. This one was different, (like all of them), it lasted for 15-20 seconds but stayed at a steady intensity, instead of shooting to a point where I lose consciousness. The time after was spent in a nauseous, weepy state; it feels like (without exaggeration) that something horrible has happened around you and all you can do in hunch over and try not to vomit. Needless to say, I slept the rest of the afternoon and into the night.

...

I paused because I had a little "problem" while writing. I was listening to music and I had no comprehension that songs could be recorded and not sung live. It felt like I needed to look around for someone singing this song. Seizures sound pretty poetic when portrayed like this, I guess.

...

I'm trying to use Facebook (facebook.com/smithjryan) and Twitter (@smithjryan) to connect with others, not just friends, but hopefully others with Epilepsy. It helps to know that there are others who have Epilepsy and have a voice with which to share.

"God Bless Ameri...ca"

I was taking this picture while having a seizure yesterday in Beloit. I was visiting my Mom and Dad and we were on our way to Janesville to meet my sister for lunch. It must've been the heat that caused the seizure.

The picture was taken with my phone; the interesting part was after seizure ended, I didn't remember taking the photo, I just looked at my phone and the picture showed up.

I must've lost consciousness and stiffened my arm because later my shoulder was very sore. I've had problems with my right shoulder since the beginning, but because the left shoulder was broken and the seizures were not "under control," we decided to move forward with treating those instead.

Now, since I have the VNS device in my chest, I cannot get an MRI and that makes it difficult to pin-point what exactly is going wrong.

I'm adding this post mostly because I'm trying to find meaning in this photo. Why a seizure at that particular moment, and why can I not remember shooting this photo? I know what is says on the sign, but I think it's not patriotic or religious in any way, but I'm certain there's something I'm missing.

I could spend hours looking at this photo, or I could tuck it away and file it under miscellaneous.

Pendulum

For the last couple of days my mind has been completely empty. It's like a pendulum has swung from a point where I do nothing all day but dwell on the present, past, and future. Each end of the pendulum is equally devastating; for the last couple of days I've felt a tremendous need to write but nothing was coming to mind. There is so much going on around me, but there was very little connection from one thought to another; even right now I'm tip-toeing around the keyboard, typing and deleting, trying to find that one perfect voice with which to speak.

I've had a short spell of seizures since my last post and since then my mood has changed. With the help of my therapist, we've come to the determination that my mind-set can be a sometimes sever side effect of a seizure. We all know that medication has been a problem in the past and we've come to a okay balance between the VNS and medication but it'll never be perfect.

My therapy sessions have been up and down since the beginning, but she had never seen a small "problem," as I call them, until last week. While talking to her I always stare at a photo of the ocean she has hanging behind her chair. I noticed the ocean moving and the euphoria feeling (aura) surrounded me but it passed before I had time to pull out my magnet to activate the VNS device. Afterwards I felt embarrassed and, to tell you the truth, I'm still not ready to see her again tomorrow. Seizures feel like a sign of weakness to me for some reason.

The next 24 hours will be like a diver, taking heavy breaths before dipping his head below the water.

Street Light

I rode my bike this afternoon and I felt a rush of memories from my childhood. It was a foggy, muggy summer day and it looked just like a day when my friend Andy would visit. There was a medium-sized corn field behind my house with a dense forest just beyond it. Inside the forest were motorcycle trails and unlimited places for two 10 year olds to start a fort.

Our forts were like castles in our minds; to us there was an intricate and detailed layout complete with our own bathroom (for "number one" so we didn't have to come running home every ten minutes). We whittled sticks to make fencing and tried on numerous occasions to make a bow and arrow with sticks and a vine... unsuccessful, but we thought that if the stick flew five feet, then it was the real thing.

Thinking about all of this reminded me of how little we thought of time. We only thought about when we had to be back home for lunch and dreaded the street lights because that meant the end of our day exploring the woods.

If only being an adult had just a hint of a child's sense of time; we look days, weeks, and years ahead instead of what's going on in front of us. This is why time goes by so fast.

Today is not unlike when I was ten. Sara and I wake up everyday to build our fort and explore the very thick forest all around us; and when the street lights come on, we head home and end our day together.

Déjà vu

So far I've experienced five seizures in a day and a half. I'm still feeling the "aftershocks" and long aura's, which is a déjà vu feeling that warns me that a seizure in coming.

The aura's lately feel like being in love. I'll be listening to a song, for example, and it's sounds are beyond familiar, they sink inside me and warmth fills the pit of my stomach; they feel so good that I want to cry; I joked with Sara that people would pay good money to have an aura because it feels so good. Of course in my case, I know a seizure is coming so I don't have much time to embrace these feelings. I search my pocket for my VNS magnet and swipe it over my chest to activate the device. By this time, the seizure has started and the warmth turns to pain and agitation.

Lately, I haven't been losing consciousness; only once in the past month or so. Though I'm staying awake, I have to ask Sara if I did pass out because they're so intense that my memory is clouded.

After these seizures, a headache comes over me like no other I've experienced before contracting epilepsy. I'll walk around the house (if I can) and start to notice things in the house that are different than I remember from just hours before. An example could be the dishing being washed, although I don't remember doing them. Did I wash them? Did Sara wash them? I'm not sure.

This can also explain why I seem to reiterate a lot of the same subjects over and over in this blog. I don't read past posts for this reason; I just feel like each new post is unique and special.

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The new treatment I'm about to start (no new news there) will start soon. It is compiled of a blood plasma based product so I'd like to encourage all of you to give blood if you can. I've included information below. Thank you.

http://www.redcrossblood.org

I Have Seen Things You Will Never See

An open letter to Jeremy Smith circa 2008,

I have seen things you will never see. I've seen my neck cut open, my shoulder bleed profusely down my back to the floor from opened stitches, I've seen a Christmas gift used as a weapon against myself, I've seen psychedelic aura's warn me of a seizure, usually these types of seizures are strong, debilitating and emotional. I've seen a depression so deep that blank walls seemed like works of art that I could stare at for hours; and I used long hours of sleep as a remedy.

You took your twenties for granted; you thought you were invincible and time was going to be good to you. You were healthy, happy, strong and successful in your business. 

There's nothing saying that I will never be reunited with you, but just know that when we finally meet again, I expect you to be humble and respectful of the new life that has been set before you. 

I know you can learn as much from me as I can relearn from you.

Jeremy Smith, 2013.

Stimulation and Epilepsy

I've been thinking about this post for a while and I feel like I have a pretty good grasp on the subject of over vs. under stimulation in regards to my struggle with Epilepsy.

Over stimulation is exactly how it sounds; watching the news, too much TV, a very intense book, a crowded restaurant, meeting several new people all at one time... the list can go on. Under stimulation can be the exact opposite from the situations I just listed or they can be from the same list only repeated over and over to the point that they become somewhat of a routine and boring.

With me, over stimulation can lead to seizures, anxiety, and in the past, violent behavior could've made the list (although I have to admit that I still do have these feelings but I am much better at diffusing this sort of energy.)

Under stimulation on the other hand leads to depression, which in turn, can also lead to anxiety and, yes, seizures. I can stare at a wall for 20 minutes before realizing where I am and what I was doing. I'm lethargic, and passive.

My goal as a Epilepsy patient is to find a healthy balance, but with the constant storm of emotion lingering over me, different mixes of medications and treatments, it's very difficult not to sway in one direction or another.

I've been writing more, riding my bike on the trail next to our apartment, and helping Sara at her museum every once and a while, but that still leaves a big chunk of time where I'm sitting, just breathing and letting my mind wander aimlessly.

6/11/13

A couple weeks ago I was approved for disability benefits. I was (and still am) a bit hesitant to write about it because I'm not sure how to take the next step, or what the next step may be. Although, I'm very grateful and I'm in need of help, I can't get the skewed thought out of my head that I'm being paid to be sick. What I owe in medical bills far, far, far exceeds the amount I'm receiving, but it still doesn't erase the black eye on a proud man.

Right now we're working with Northwestern and Mayo Clinic to start a new round of treatments called IVIg (Intravenous immunoglobulin), which is a product extracted from donated blood plasma. Even after a thousand hours online and several days worth of explanation, I'm still a little bit hazy on how this will work for the treatment of my particular kind of Epilepsy. Although I'm a bit uneducated, this doesn't stop me from saying yes to even the slight possibility of seizure reduction.

I'll keep reiterating the fact that, although my seizures are still frequent and strong, what's most important to me is my state of mind. Everyday I have to look at the scar on my wrist and when I notice it, I try to put myself back to that moment and what was going through my mind the second that I decided that the only way for me to release the tension and quiet the voices in my head would be to open a vein. This is a dark subject, I know, but if I can't communicate these issues then they fester and then the scar may never go away.

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I've had two very brave people tell me that they've given blood in the last couple of weeks and I want to thank them and call on others to do the same. The treatments that I'm about to receive require blood from thousands of donors, so just imagine how many other people are going through similar treatments and, given the recent tragedies in our county, how many more people you can help. When I'm well again, I will make it a point to give blood, but for now I'm calling upon you. Thank you.

http://www.redcrossblood.org

Disability Approved

Yesterday I received confirmation that I was approved for Social Security Disability benefits. This means several things to my family and I, more than just money. Of course, we'll be able to live and pay some of my medical expenses, but it also means freedom. By freedom it means that I'm no longer just sick and unemployed; it means I'm a human being that has been recognized by the higher powers that needs help doing the everyday things that a lot of people take for granted.

After hearing the news, I had a very strong seizure... irony at it's best. This was the kind of seizure that lasts for hours; I'm comatose and generally slow to respond, staring at walls and such. I've noticed that it's not at the moment of stress where I have a problem, it's when I'm coming down from stress. Deep down I must've been very worried about the disability business because it happened almost immediately.

Now that I have this freedom, I have to make plans for what I'm going to do with my time. Of course I have a new IVIg (Intravenous Immunoglobulin) treatment coming up, but after that I'd like to insert myself into a small percentage of society. I see myself volunteering, using photography more to convey what my life is like, the list is short but growing. There's a lot to think about when it comes to this, so while I'm receiving the IVIg, I can hone the plan a bit.

Generally, I'm happy, despite the seizures. It's just nice to be accepted... in more ways than just a number.

I'll do some more research on this but I would like to, again, mention the donation blood or plasma.

http://www.redcrossblood.org

Thank you.

A Sprint

Last week Sara, my Mom and I made another trip to Mayo Clinic to see if the Methylprednisolone steroid treatments have improved the frequency of seizures (which we know it really hadn't), and if the abnormal antibody in my blood had been corrected in any way... again it hadn't. Our doctors used some very harsh words, like "failure" when describing the treatments which left us devastated.

At the very end of our meetings we reiterated that my mood and personality had greatly improved and if this was the case then it wasn't a failure at all. I explained to Sara that if I had to live the rest of my life with a seizure disorder, but as me, without the demons floating around in my head... then there would be some quality of life.

After we mentioned the personality change back to normal, the doctor ordered another neuo-pyschological test to see if that is the case. We couldn't get an appointment for that until June 3rd, but they said they'd call if anything opened... it did... this Thursday at 12:45pm. Now Sara and I are scrambling to pack and get up there tomorrow, so we both have time to settle before the test. These tests are very intense so I need to be in a good place mentally before they can begin and I can prove to them that there have been very noticeable changes.

After the test I will start a 12 week Intravenous Immunoglobulin (IVIg) trial. It's basically a blood plasma treatment from donor blood. Because this is from donor blood, I'd like to encourage those reading this to give blood or plasma in my behalf. Someday, I'll be able to give back, but for now I'm looking to people like you to get healthy. Thank you.

Right now it's so hot in our apartment and my mind is racing so I'm awake at 4:00am. I'm at the table in our dark kitchen writing and thinking, nervous and trying to find that peaceful place we all wish to find in our lives.

10 out of 12

So far I've received ten out of twelve methylprednisolone steroid treatments for, what the doctors at Mayo Clinic believe to be, autoimmune epilepsy.

On May 7th, the day after my last treatment, I'm scheduled to travel back to Mayo to see if there's been any improvement. There've been many set-backs, seizures and the like, but I'm feeling good about what we're going to hear. It could be because our trips to Mayo have been a nice break from our troubles at home in Illinois, and time spent with Sara and my Mom is precious. It may seem silly, but we've been calling our trips up there as our "Mayo vacation".

Both Sara and my Mom have been going through some tough times at work and I think they enjoy the opportunity to spend some quality time together. Now, because it's warmer maybe we'll actually be able to walk outside instead of always using the interconnected tunnels from the clinic to the hotel. Plus, we won't have to literally run from the car to our trips to Target! One thing that we all seem to unanimously despise about Rochester, Minn. is that they don't serve Diet Coke anywhere! I don't mind being poked and prodded, but no Diet Coke? No!

All joking aside, it will be nice to see what side-effects of the steroids will subside in the future. Insomnia has been a big one; it seems I'm always completely exhausted but unable to sleep and I've been pacing the apartment at 3 am. There have been some very scary moments, like last Saturday when I had three seizures in a row while visiting Milwaukee. We just wanted to take a couple days and relax but I guess that just wasn't in the cards. I'd like to say we learn a little more about what's going on with every new seizure but we've been left confused, disheartened and all around frustrated, even angry.

What I'm feeling right now, positive or negative, I'm not going to share because it's all the more frustrating when what I've been feeling turns out to be wrong.

About Last Saturday

Last Friday and Saturday I started a new medication with the hope that it would help my restlessness. Lately, I've had this inner feeling to always be moving, even though I'm totally exhausted.

I started the medication late last week; to be honest with you, I can't remember which day because as soon as I washed the pill down I started having seizures.

It's been almost five years since my first seizure. After the doctors got them under control I had lost a week; amnesia. On Friday and Saturday, the amnesia was back. I only remember things from last week in 30 second intervals, like waking up at 4:30pm, thinking it was 4:30am and asking why my family was here and why the sun was up so early. I don't remember eating, drinking, using the bathroom, showering, or any other normal routine. This is just a case of "over-medicating," but it's deeply disturbing that a little pill the size of my fingertip can color my world black.

Day Long Seizure

Last November, I had several very strong seizures while admitted to the Mayo Clinic video-monitoring unit. One of the seizures lasted 9 minutes; to put this in perspective, it takes 5 minutes to cause brain damage.

Today I had one, long, all-day partial seizure. With this one, my personality changed, I hallucinated, heard voices, I argued with my family about trivial things.

Based on today's seizure(s) and the one last Monday the 18th when I called Sara and stood by our window, explaining in gibberish what I was seeing, (I attached below is a link to the audio voice recording I sent Sara.) it's pretty obvious that there's something wrong; something different.

(I'm heavily into the postictal state, seizure hangover, right now).

I attached a link for you to hear the voice message I left for Sara while having a seizure (could be disturbing to some):

Click: Jeremy's Seizure Voice Message

The Wall

I took an inventory of the medications that I'm putting into my body and we're at nine; not including the steroid treatments on Mondays. With all of these chemicals floating around, I've obviously been experiencing a wide variety of side effects. On Monday I finally hit the "wall."

On Monday night, after I wrote my last post I had a very strong seizure. This one was especially unsetting because, while I was unconscious, I was walking around my bedroom, I approached our windows and called Sara who was in the next room with her aunt. I left a rambling message about the street and then my voice stuttered until I hung up.

I don't know what to say about this but I know I have to share because I'm genuinely afraid of where things seem to be going. Standing next to windows while having a seizure? How can this get any more disturbing?

Sleep and Mania

I've been trying to utilize this blog more and more because I believe it's a good outlet for me to document and organize my thoughts, but also to communicate to interested parties that I wouldn't normally have the strength to talk to on a one-on-one basis. I have a therapist and our sessions are very tough for me to get through, so I can't imagine talking to family in-person about these issues.

An update:

Today I had my fifth week of steroid treatments. Everything went completely as planned, which is a very odd feeling in my world. The interesting thing about these treatments is the paradox between sleep and mania. For about 17 hours a day I'm completely exhausted but my brain is moving a mile a minute and I cannot relax.

An example would be my renewed interest in music. I sit in front of my newly acquired collection of cassette tapes and I can't decide on what to listen to, and by the time I put in a cassette, I've already changed my mind. And if I do start listening to an album, I'm 75% asleep while it's playing. Then there's the perfect six hours a day where everything is perfect. Sara's home, we're cooking dinner or watching a movie. I'm awake, alert but totally relaxed. I mentioned this to Sara yesterday, "I wish I could feel how I'm feeling right now... all the time."

To be honest, the time I spend writing falls in this six hour window when everything is just perfect.