Finally Digital

For years now, I've been shooting digital photographs professionally, but for my personal work I've always leaned toward 35mm film. I just love the way a film camera feels in my hand and how the grain of the film looks either printed or viewed on-screen. Although I've been shooting film, I always use a film scanner so I could share them digitally or print them for framing purposes.

While working as a designer, I was also the in-house studio photographer for product and application shots. I absolutely loved the days where I knew I was walking into work for a day of photography over design. Don't get me wrong, I love design, but photography flows through my blood more than any other vocation.

I soon became a photojournalist with the help of a friend to get me into the freelance photography business. I would design and shoot digital studio photography on weekdays and shoot for the Sun Times News Group in Chicago on nights and weekends with the inclination that my career would allow me to shoot for the paper full-time.

After contracting Epilepsy, I continued my design and digital studio photography career, but personal photos became non-existant. I just couldn't get my mind to be creative in photography anymore. I'm not sure if it was not being able to drive or the cost of film products, I just couldn't bare to load the camera with film and get out to shoot.

Recently, I received a new digital camera as a gift. It's very nice, and rivals the photo quality that I would get out of a scanned 35mm photograph. It's a rangefinder-style camera (the lens and viewfinder are separated), and when I look through the lens, I feel the same feeling as I did when I looked through a film camera. I look at my new camera I think about all of the memories I'm going to capture, and all of the art I'm going to make.

Bailey

Earlier today, my sister called me with news that the family dog, Bailey, may have had a stroke. She's apparently not seeing very well, her head is cocked to one side and she's not responding when my parents try to call her.

My sister was a wreck on the phone; she recently moved to Chcicago from Beloit, WI, and she felt very helpless. I can't blame her, having a sick animal that we all considered close family is tough for anyone.

Sara and I recently had to put down our first cat named Fiona. I wrote a post about this time. She had a brain disorder, so, in the end, she was a shell of herself. I wrote about how we had this in common. Basically, if I were the family pet, having uncontrollable seizures, I'd be put down, too. This sounds kind of dramatic, but this was a very tough time for me emotionally, being on a bad mix of medications, so seeing her this way just brought all of these thoughts to life.

Bailey is a good dog; my parents have had for over a decade, a long time in dog years. When I think about her life, I think about how she has been around for every event in my adult life; college, meeting Sara, being diagnosed with Epilepsy. I can remember her being there for me when I was visiting my parents, and her just knowing when I was "down," and offering her love to me by crawling into my bed and laying next to me. She just knew I was hurting somehow, and she wasn't happy when I wasn't healthy.

My Mom didn't want to tell me that she was sick tonight, but my sister called me with the news anyway. My Mom was trying to protect me so I wouldn't fall into a depression over her. I held it together pretty well, as I knew this day would come very soon given her age. Sara called both my Dad and my sister Jenni to talk to them and offer an ear. I think that helped. She's always good like that; I appreciate her love for my family, and how much they mean to me.

I can feel pain, but because I'm currently on two antidepressants, the news of Bailey being sick didn't cause me to cry. I will though. When it come to the point when Dad has to put her down, I will think about the good times and the bad times I had with her, and lose control of my emotions in a healthy way.

***

I'm up late again. I'm actually enjoying the time I have alone in our dark apartment. I'm enjoying it because I know Sara is safe at home, and I've been seizure-free all day, with no indications that an episode could be coming.

I met a new friend on Twitter a few days ago; she's also living in Chicago, which is nice because a lot of my followers are a distance away. She can relate to the city, and we can talk about the hospitals, although different hospitals, where we are receiving treatment for Epilepsy. She has posted similar photos as me when I was admitted (several times) for an EEG and other various reasons. That was helpful somehow.

She works at a news organization based here, so now when I'm writing, I pay special attention to my grammar which, I will admit, I'm pretty self-conscious about! Not that I'm crazy about my skills as a writer, but because I'm not a trained writer, and I write as if I'm having a verbal conversation. I wish I could have a better understanding of the written word.

She wrote about "coming out" as a person with Epilepsy to her co-workers in one of her pieces, which takes a lot of strength in my mind. I've had negative reactions when telling people I once worked with about having Epilepsy. No one quite understands what exactly comes with the territory. People hear the word Epilepsy, and the think of weakness as an employee, or being fragile in some way. This can be true, I admit, but we are still human beings.

The firm I worked for when I had my first seizure couldn't have been more tolerant of my disability. My boss, at the time, was instrumental in me receiving treatment. He knew what to do when I had a seizure at work, knew who to call in case of an emergency, and knew that I bad days, I couldn't be myself as an employee. I long for those times.

***

I'm a bit worried about the next couple of days because the weather here has been so cold. I usually have problems in extreme, and changing weather patterns. All I can do is think good thoughts, believe that those around me love me, and will do anything to see me be the man that I am, instead of a man trapped in a world of Epileptic uncertainty.

Geodon

Sara and I went to see my psychiatrist this week, and I'm now weening myself off of Abilify. The doctor prescribed Geodon, which is supposed to have less "weight" issues, and since Thursday, I've noticed that a lot of my psychological side effects of my seizure medication has subsided. Thankfully.

I had four seizures this week, the most recent being on Saturday afternoon. Sara was in Milwaukee visiting a friend, and when I called her, the first sentence out of her mouth was, "Are you the good Jeremy, still?"

Since last Sunday's very strong seizure, I was waiting for the other seizures to come so they would knock me back into my "good" state. They came... three times! I've never been so excited to have a seizure since I knew I'd have less of the anger and anxiety issues that I was having while in the interictal state.

After some research, I've found that Geodon causes severe sleepiness, or somnolence, as they call it. I've been taking it in the mornings and have noticed that I start to feel light and a bit euphoric, then I want to sleep. And when this sleep comes, it comes with a vengeance! I slept nearly all day on Saturday, and now I'm writing this in the wee hours of Sunday morning.

I'm going to slowly switch the intake time to the late evenings, so I just took the Geodon and half of Abilify. Right now, I can feel my hands getting light and it's getting easier for me to type, as I have less and less "noise" running around in my head.

Right now everything is clear, and I feel a sort of stoned clarity.

Me, Not Him

This afternoon, Sara and I are going to see my psychiatrist, (not to be confused with my therapist.) We're going to talk a little about my mix of seizure medication with the Abilify that he prescribed me.

I mentioned in my last post that I can feel the negative psychological side effects of my seizure medication starting to make their way back into my life, and I don't think that the Abilify (or even a stronger dose) is helping very much.

At the beginning of February, my Mom, Sara and I are making our way back to Mayo Clinic to talk about our options, which most likely will be a new medication mix. It may be putting the cart before the horse to talk to the psychiatrist first, but this is an issue that just can't wait. Plus, I know that at Mayo, they can look at ALL of my medications and make a proper judgement.

I had a seizure on Sunday afternoon, and I had another one last night. The Sunday seizure was very strong, while the one last night was a bit milder. The funny thing about last night's seizure is that I was praying for it since Sunday.

The time in between seizures is called the "interictal" period. During this time, I will notice a sharp difference in my normal personality, like increased depression, anxiety, etc. Basically, I can tell that I'm a different person. On Monday through yesterday night, I kept telling Sara that I wished the next seizure would come to knock me out of my funk. I was feeling very angry and irritable for no reason.

I can still tell that another seizure is coming, because my mood is a little "off." Writing is tough because I keep typing sentences that I then delete because I know that they're being written by another set of hands. This could be the medication problem that I mentioned above or (most likely) the interictal state.

***

In 2014, I don't really have any resolutions, just fears that I hope don't come into fruition. 2013 was a transition year, a year where we tried two different and extreme treatments that both failed. I learned that I have Diabetes, beyond the high blood sugar that the Steroid treatments cause. This was something I wasn't expecting, and a huge blow to my hopes of becoming healthier, even if the steroid or IVIG treatments worked in helping my seizures.

The fears that I have for this year are my body's ability to adjust to the new mix of medications that Mayo is most likely to prescribe. At first, we'll notice either an extreme drop in symptoms, or devastating rise. I'll see all the side effects of these new medications, because that has been my luck as of late, and I just pray that I can adjust swiftly.

I've been using Twitter to talk to other Epilepsy patients, and that has helped quite a bit. We talk about medications, and what kinds of seizures we all have. A lot of them are perscribed medications that I have already tried and have had problems with; most of them are on Keppra. Keppra is the medication where I basically lost my ability to think clearly; I was having severe psychological problems.

All I can do for 2014 is hope and pray that this year will be different than years past. That it is a year that I'll remember as a year of extreme change for the better. Whether that is finally seeing a dim light at the end of the tunnel, or being able to be the man that I truly am, instead of the strange person that makes his way to the surface and controls my personality in a negative way.

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!