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."