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.