Friday, November 9, 2012

Mayo Clinic Journal: Part One

Mayo Clinic journal part one. November 5-8, 2012.

It has taken my family awhile to urge me toward Mayo Clinic. I've been trying to trick myself into thinking that I didn't need this and the path I was taking was going to pan out somehow; this turned out not to be the case. Since August I have been trying not to be over-stimulated, as to not agitate my emotions and seizures. I've been off Facebook, blogging, even watching the news in fear of these outlets causing me to overflow.

Last week I laid next to Sara with my face in a pillow and agreed to seek treatment at Mayo. She worked to get me in and was resoundingly successful.


At Mayo, it's interesting because the hospital in connected to shopping malls and hotels via underground tunnels and skyways. I kept mentioning to nurses and doctors that I missed being outside to breathe fresh air; they would smile and reassure me that the weather was much better inside. We were there four nights and we got out only a couple times; we went to Target to buy new clothes for the next day (and the next) we didn't expect on being there.


I had two MRI's done while at Mayo. If you've never had an MRI, it's best for me to say "they're not so bad," even though they do take a bit of strength to get through. I'm slid into a tunnel while wearing a floppy hospital gown and paper socks with ear plugs installed. They tried to make me as comfortable as possible with foam wedges to support my back and head, (these also reduced movement on my part).

I closed my eyes loosely and tried to envision myself somewhere peaceful while the machine pulsed and whined for close to an hour. At first I saw myself walking along a hilly, wooded path that would open up to meadows of sheep or cows, but once the thought of my body being held down in the MRI, I began to feel anxious and afraid. This meant I should instead imagine myself somewhere without movement, watching a play or looking out a window on a train ride. That's exactly what I did; I saw myself sitting in a leather bench seat looking out a train window while crossing a huge bridge over a river. I saw the sheep on a hill and I noticed the grass looking bright green in comparison to the brown trees that were ready for winter. There were little towns in the distance and just before I could ask myself where the train was taking me, the technician was sliding me out of the machine. All I could do was smile.


(More soon)

Friday, August 3, 2012


I killed a sparrow yesterday. I noticed, through my windshield, up ahead was a small bird in the road flapping it's wings while another bird was hovering nearby. I slowed down as to give it time to fly from the street, not thinking it could be injured. As I approached, I lost sight of it in front of me, but as I continued I looked in my rear view to be sure it got away. Instead I saw it still lying in the road only now it's wings had stopped flapping.

You see many animals along the road presumably hit by passing cars, but I cannot remember in all my time behind the wheel having this happen to me.

Later that day, while I was at the office of my new freelance job I had a particularly long seizure. I didn't lose consciousness; I thank my VNS for doing it's job. I left early amongst the piles of work that needed to be done.

In the last three weeks I've had over twelve seizures ranging from small (5-10 seconds) to rather lengthy (10-30 seconds). They all are followed by a postictal period (seizure hangover); depending on the intensity of the seizure, some are painful and some are more tolerable, but they all are incapacitating in one way or another. My concentration, speech and memory are all effected.

I started a new business for my freelance work; the business name is basically a no-brainer for me... Smith J. Ryan Creative. See, all my life I've had to fight for my name. I've been pulled into the principle's office and scolded until a secretary barged in to tell him that he's got the wrong Jeremy Smith; I got a free pencil out of that ordeal. I had the "bad" Jeremy Smith's grades sent to my house and shared a locker with him because the school's office still couldn't figure out that there were two students with the same name in the school.


Next Monday I have another EEG scheduled due to the amount of activity I've been experiencing. When I had my interview for the new freelance position I thought I could schedule my first day after the tests so I could get some information and maybe have time to "even out." The company is very busy and needed me right away but I've only been able to help them a minimal amount; frustrating for them I'm sure.

I go back to this subject a lot, but I can't help but have extreme empathy for those with mental disorders, especially those that seem healthy on the outside, to strangers, co-workers, friends, but need special accommodations to live their daily lives. See, it's easy to spot a physical disability (by no means am I saying it's easier to live) but when you tell someone that you have Epilepsy they're nervous around you at first but if they don't see a seizure and they see what looks like a healthy individual, it's hard to tell someone that when you're having a problem you won't be at work, or you can make it to an event... the list goes on.

It's like every year gets harder. We have no money and it's straining our household. I'm trying to apply for disability next week; my phone interview is an hour before I am to be admitted to the hospital which is kind of odd. I'm just very nervous and alone; I get advice but it's all very generic at this point.

My hands are tied and I feel like the sparrow who's flapping his wings but unable to fly away to safety.

Thursday, May 31, 2012

The Art of Celebration

It seems that in our household we celebrate small victories and huge losses. I was tapped out of the running for a job that I was very much interested in; so, as a tradition (I guess) we watched a couple of great movies and drank some wine.

Our goal is to move back to Milwaukee to be closer to family, but it may take longer than we expect given today's news. I'm not upset, I'm actually in a penitent stage where I can look back and as a result get a glimpse of my future.


I've been visiting the south side of Chicago a couple days a week and I've never noticed life in such a way as this. Imagine driving on a four lane road and witnessing an argument between a pregnant woman and her boyfriend and then a mile down the road seeing a woman covering her head with a cloth while grieving a loved one in a cemetery. All of this is happening while 1,000 semi trucks race for position on the road on the way to the highway. Up above, commercial jets aim to land at Midway Airport, roaring their engines louder than the fleet of semi's below.

As I'm witnessing these things, I also realize that this is what I've taken for granted during the entirety my recent life....... LIFE!

Tuesday, May 22, 2012

Wednesday, May 16, 2012


I've always said to myself that I never knew what addition felt like. I didn't understand how people couldn't stop smoking or drinking or shopping, etc. I'm making a sort of "life style change," and when I look back at how I lived (keep in mind it's only been a couple weeks), I realized that I have a sudo-addictive personality. 

Of course, I'm on medication that would take some weening off if I didn't need it anymore, but now I'm looking at other aspects of my life and I've seen a lot of other trivial things that I am or would have a hard time quitting. 

I use food, alcohol, sometimes pain medication and shopping to ease anxiety and depression. It's very hard for me to admit this, but I think it's time to explore this aspect of my personality.

By no means am I weighted down by addition but I definitely justify my actions. "I need a drink because I had a hard day," "Let's go out to eat tonight to celebrate," "I can't sleep, I'll just take a Vicodin."

Once I started to ween myself off of the excuses I've been making, I realized that it's so easy to say yes rather than no to my comforts. I'm just starting this process so I'll update this blog over time, but I am willing to admit that it's harder than I thought to find new, more healthy ways to keep my mind from thinking.

Monday, April 30, 2012


I've been surrounded by the word "Routine." While in Milwaukee for several weeks I learned that those around me were able to stick very closely to a schedule, sometimes very strict. After a week or so, my own routine was formed and I was able to abide by times, places, food, stress and relaxation. I made sure to wake up and get to bed alone without Sara's guidance (big step, actually).

After my "temp" stay in Milwaukee ended last week, it was a shock to my system or "routine." I've come to understand that, with Epilepsy, I have to ease into and out of things slowly as to not upset my body's equilibrium. When I returned home to await my temp-to-hire status, I again applied for unemployment and was, again, at home during the days. Basically, giving my body a shock from a very regimented schedule to a loose set of tasks that were set throughout the week.

I did visit friends and helped one of them move to a new place, but the stress level was low and I was doing far more physical activity than I would normally do in a week's time. This shocked my system and I've had three Aura's (a warning sign that I'm about to have a seizure) since I've been home. They were ALL controlled perfectly by my VNS implant, but I did have to take an emergency medication called Ativan, and lay down for an hour or so while the postictal (seizure hangover) subsided.

This is a small blow, but one I can handle. I started thinking about how others deal with a disrupted routine.

Imagine a man who walks his dog every night so he can have a cigarette to relax from the stress of the day, or a young woman who loves to wake up to jog while the morning air is still cool. If either of these routines are disrupted it could very well effect their mood, work performance, or overall sense of how they choose to use their time.

Even a routine of stress can cause a person to feel displaced if, all of the sudden, the stress is relieved for a period of time. There's a certain anxiety that comes with not knowing what kind of new stress is going to surface.

I guess that's where I am now; trying to bide my time while waiting for the next step to become clear.

Monday, April 9, 2012

The Short of It

I started a new job on a temp basis in Milwaukee about six weeks ago; it's a job with the potencial of a full-time position. I'm really loving it to say the least; I seem to fit right in.

Before today, the only problem I've had regarding the new job and my Epilepsy came a couple weeks ago where I had an episode and because my supervisor was "in the dark," she thought maybe I wasn't a team player when I left a little early (early being 5:30pm these days). I talked to HR and decided that she should know about my condition. I guess it gives me a little peace of mind to know that she's in the loop.

Today is the Monday after Easter weekend. Sara and I were able to stay in her Uncle's vacant condo while he and his wife were in Arizona. We both thought it would take some stress off our long, long weekend. Obviously, we were wrong.

Last night we both got back to the condo and wanted to go to bed around 8:45pm. That was fine, I knew I would need the rest for Monday. I seemed to sleep fine until around 5am because my CPAP was making my throat too dry. Knowing I would wake Sara up without it, I moved to the couch with a big headache.

After my alarm rang, I could barely move, but I thought it was because I was over-tired. I thought that drinking some cold water or tea at work would perk me up. Once I was ready and I started driving I became very emotional and started tearing up; I started talking to myself, as to say "Everything's fine, what's wrong with you?"

Once I arrived, I walked into our studio space feeling drained and on edge. It wasn't until then that I noticed that I had bit my tongue (a sign that I had a small seizure in the night), this realization sent me over the edge. I couldn't afford to have a seizure where I lost consciousness and lose my license and I couldn't afford to drug myself silly; what good was I then? The emotions rushed back and I asked my supervisor if I could leave. She asked what was the matter and I briefly explained what had happened. She said "go."

As soon as I left the building I burst out in tears and called Sara, who was still at the condo. I was near hysterical. She assured me that everything was fine, to calm down and to come back "home." I did.

I have a tendency to apologize after I have a seizure. I feel incredibly guilty. I felt as though I was abandoning my co-workers in the heat of a huge project. It was especially hurtful that they're still "in the dark," and could possibly make the same as assumptions my supervisor did weeks back.

There's no real lesson that I've learned from this one experience (yet), it's one of a million lessons I've had to learn in the last six or seven weeks. The answers won't become clear for months or even years from now.

 I have just enough energy now to finish this sentence and that's good enough for me.

Monday, March 5, 2012


Last fall I met a little friend. We adopted a small gray kitten with a raccoon-striped tail. We named her Fiona. She had a small head with big bright eyes; I often compared her to an owl. I always wanted to stare into those eyes and wonder what was going on behind them.

Fiona could be compared to a peaceful island in the middle of our otherwise struggling lives. As soon as we saw her little face, the doubt, anger, and depth of our daily lives took a backseat to her need for our personal attention.

In late January, we began to notice small changes in her; we knew she was struggling. Without going into detail, I'll say that she seemed to age years with every day that passed. Every doctor and every medication couldn't help her life from slowly slipping away.

Last weekend we held her, kissed her and looked into those big bright eyes for the last time. By just looking at her you could tell that she was ready to go. Ready to go far too soon.

Sara and I hugged each other while gently holding our hands on Fiona's small head as the doctor allowed her to take her final breath. She didn't budge except for a twitch where the IV was inserted. I held Sara tighter while the doctor listened to her heart and reassured us that, "She's gone now."

In all of my life, I've never witnessed a loved one's passing. The concept of Fiona being with us one moment and gone the next keeps haunting me. She had a neurological virus, which still cuts me very deep. I lived through a brain virus and I'm still getting a handle on the following years of seizures and set-backs. No one gave up on me during this rigorous journey but I feel so much guilt for theoretically giving up when her brain was going through a similar struggle.

The last two times I fell in love was with my wife, Sara, and this little kitten who didn't get a chance to see her first birthday.

Thursday, February 16, 2012

Selflessness vs. Negligence

I'm gathering myself a bit for this post; the tone could waiver while I'm writing.

After having Epilepsy for almost four years, I can moderately judge what will bring on a seizure. The biggest cause is sleep deprivation; during my EEGs that was the only method we could use to cause me to seizure for testing purposes. Another cause is Caffeine; more than two regular sized cups of coffee and the percentage goes up that I'll at least feel small "tremors," which I've come to understand as a warning sign.

The most interesting cause of my seizures is change in routine. I sleep a lot more the average man and if I sleep too much or too little, basically any fluctuation in my day-to-day life is a risk. I do drink Caffeine in small doses because I think it pulls me up while all of my seizure meds and anti-depressants fade my concentration and cause my eyes to close.

After losing my job in December, my cycle has had it's ups and downs but I've weathered fairly well, plus my driver's license was reinstated, so that has been a huge key to my mental state.

The topic of this post is selflessness vs. negligence. Our kitten has been a huge support for us; we can just feel the warmth she provides to our small space. She's not even a year old and she's fallen very ill. We've been talking to the Vet and numerous other cat owners and they've all been very supportive. We're force feeding her and giving her water through a syringe every hour. To say the very least Sara and I are struggling.

Two nights ago I stayed up until 8am, watering her every hour. This is just insane; why would I risk having a massive seizure? I just can't look at her and see her little eyes begging for help. She hates being watered and fed with a syringe but it necessary – she just can't understand this.

What else can I say? Xanax is being taken like M&Ms lately.

Wednesday, February 8, 2012


Last week I officially drove; it was just the truck, the road, Milwaukee and me. While I was in Milwaukee, I visited a good friend at MIAD. I walked around the school, so many memories flooded... more like overflowed.

Once I was back home I took several deeps breaths started going through old pictures from MIAD and my early times in Milwaukee. I came across a picture of my Senior Thesis design project; I designed sample posters and merchandise for a rock band close to me when I was in high school. This project is still the one for which I'm most proud. I designed it all using a super slow beige Mac G3; I would press the save button for a photoshop document and go to sleep late at night while the computer completed the "save." It was a great ol' machine.

For the project's posters, I used old images that my Mom had taken while the family was on vacation throughout the years; amazing photos of Seattle, JFK Space Center, South Carolina. Needless to say I put a lot of myself into the project, something I'm still guilty of today.

Along with posters, stickers, logos and cd covers, I designed sewn patches with the band logo; these were for applying to hats, backpacks, clothing and anything else the consumer saw fit. I needed to find a sewing shop in Milwaukee that could provide a dozen white iron-on patches with a sewn black border. I didn't have the money for them to sew the band logo on the patch so I did a inkjet printed iron-on transfer of the logo using paper I bought from a craft store; after all this was a sample.

I found a sewing store in Milwaukee and hitched a ride with a friend to their shop. While I was trying to sketch out the type of threading I wanted on my patch, the manager came to the counter with a handful of sample patches for me to look at – one of them being a Nazi SS patch. Did he not know what the symbol stood for? Was he trying to send me a message? I stayed while his people sewed the patches I ordered, I paid and left in shock.

Why didn't I ditch the store, asap? I certainly wasn't afraid of a symbol on a patch presented to me by a dirty old sewing shop owner. I've seen a lot of things more disgusting in my life but not as "up close and personal" as the this SS patch.

When I was looking through my thesis photos and old design files I kept coming back to this one experience. Up until last week I hadn't been in Milwaukee by myself in nearly a decade, and the lonely walk through the school and Third Ward must've put me in a penitent mood.

I'm so regretful that I purchased a piece of the most important and personal project in my life from an ignorant bigot. This'll be the last time I speak of this experience unsolicited, it's time to let it go. I just want to look at my thesis and see me, my friends and family – everything and everyone that got through those tough years.

Monday, January 30, 2012

"Alone in the Wilderness"

I'm sitting at my kitchen table, next to a DVD that I watched titled, Alone in the Wilderness. It's a 1960's era documentary about a man named Dick Proenneke who builds a cabin by hand, with simple tools at Twin Lakes, Alaska (where he lived for 30 years afterwards). He shot the footage himself using a small camera and narrated, post-production.

I've watched it several times and it has this certain "feel" to it. For a man, a human in modern society to pull ranks and literally build himself a life only among nature is inspiring and heart warming. What if he would've had a heart attack, suffered a broken bone, or... developed Epilepsy. He knew he'd face death everyday, but pushed forward. He was a strong man, but as you can see in his footage, a gentle man. He only hunts for survival and has a moment to reflect on his kill... as if he's thanking the animal for offering him it's life.

Mr. Proenneke is a man who could be considered a cowardly man, who jumped as far away from the lower 48 in the thick of the cold war. A man who left is family to live a life of solitude. It's quit the opposite; Mr. Proenneke had rheumatic fever when he was young and after his fight, he decided to change and live a strong, healthy life. This is the point I'd like to make.

After fighting off the virus that caused my Epilepsy, I told myself that I'd never endanger my health again; that if I was to get sick it wasn't a reflection of my lifestyle. That promise lasted just over a year; 2010. I started eating more and I had a beer during special occasions. Soon, I realized that two or three beers didn't effect my condition. With that came the same old food that I was eating before; not exactly bad, just in portions that exceeded my metabolism. I'm not close to my original weight but I'm on a familiar path.

If I am so inspired by the man alone in the wilderness, able to recover from an illness and successfully sustain his new lifestyle and live the life he knew he could live, then why can't I?

Longevity. Sara always says that she just wants me to be healthy, for me to have as long of a life with her as possible. It'd be selfish of me to leave her too soon by my own doing.

Thursday, January 26, 2012


I decided to take this week away from Illinois and spend it with my parents in Beloit, WI; my hometown. I've hung out with both of my sisters and did just a little drinking (enough to forget that I'm at a bar in Beloit!). I've talked with both my parents about where they're at, beyond what I usually hear over our telephone conversions.

After a lot of red tape, my driver's license was finally "reinstated!" That meant I could drive home from the DMV; that's about all the driving I've done back home (I'm not really cleared for the highway).

A couple days ago, my Dad let me use his car to grab some lunch and I did a little re-exploring of Beloit. Granted, it's not much, but this little city has scratched many permanent marks in my brain. As I drive by a park or a building or remember the way a specific road winds and bumps. I've been known to be sentimental, and a lot of memories were good but not all. The negative events that have happened here taught me lessons that I've used for good but they've hurt just as much as they've taught.

I've had two small seizures here, so far. Probably just getting used to the new territory. We have a kitten and she is kind of the same way (I know this sounds crazy). She'll know things are different and not eat, drink or try to avoid making real contact with us. Communication doesn't always have to be verbal, in fact it might damn well be better to use mental and physical language than words.

A lot of people feel this way, but you never quite feel rested or completely relaxed when taken out of the little hole you've dug for yourself. I'm not sleeping well or really thinking about the problems at home in Illinois. Sure, I check my email and send out resumes but there isn't that same sense of urgency or fear; I'm just really lonely. Even though my parents have been home 30% of the week, I just feel drained of human contact. I'm out of my element in Beloit; life isn't exactly slower, just less condensed. Hell, there are unmarked road crossings in my parent's neighborhood; a driver is just supposed to know to slow down and yield... a death trap in Chicago.

We're trying to move back to Milwaukee; my second home and Sara's first. There, it seems to be a good balance of here (Beloit) and Chicago. Sure, I'll be further away from my doctors, so I'll have to find a closer emergency type hospital with ties to Northwestern, but now that things are looking better for us medically, it's a no-brainer.

Today, I just felt like writing. I'd write everyday if I could but then I wouldn't have time to really reflect on what and who is around me. Like I've said before, once a word is spoken you can't take it back but when a word is written, there's always delete.