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.