A Well Deserved Symbol of Hope

It has been a really long time since I have written a thing on this blog, and I truly apologize once more. I'm sure you all understand, so I probably don't need to say sorry. But I just insist on being polite since you are all practically family to me now!

I did want to address something that has recently come about. I've gotten some bad news from my Epileptologist that I wasn't expecting... As many of you most likely remember me saying, I felt as if my medication and/or VNS were both just not working anymore and I wasn't sure why. When I said this, of course, I was only meaning that I felt as if they weren't working. I never thought that it would actually be true.

Little by little, my seizures have started to increase. I am now back at the point in which I was at when I was first diagnosed and on no medication at all. I was told that my medication and my VNS are now "pointless treatments" and can no longer work. My Cortical Dysplasia along with quite a bit of scar tissue from the large amount of seizures I have had has created somewhat of a barrier. This barrier is basically preventing my medication from working because it can't even reach the area of the brain in which it needs to reach (due to the scar tissue). The VNS wont work either for that very same reason.

I asked if other medications were an option, and my doctor said "There are no other options. No medication can help you, not to mention that you have tried basically all of them." This broke my heart in two, but I managed to hold a smile and pretend as if everything was okay. I suppose he knew it was upsetting me because he kept repeating "I wish I didn't have to tell you this." and "I know it is very unfortunate news."

My next step is an in-depth brain mapping and language mapping. My brain has actually rearranged itself due to the trauma from the seizures. So my language and other important functions are located in places that they aren't usually found. IF (and please, pray this isn't the case) my language and reading is located in the are of the temporal lobe that must be removed, surgery wont even be an option. And inevitably, memory will be lost... We just don't know how much, considering that my memory is failing very badly as it is. So to put it in other words, my risks are far higher than most.

So I am left wondering, just what the hell are my options exactly? I am usually a positive person. I am still doing my best to stay positive through this situation. However, I can't help but worry what is going to happen to me. It's hard because there is no one to talk to that understands unless they have Epilepsy. And unfortunately, I have no friends down the street or in my state who have Epilepsy or who have been told this news. I can talk to my mother, but she just cries... and cries a lot. As a matter of fact, she was so upset that she came home from work early and took 4 days off just to spend time with me as if I would die that very week.

I can't talk to my sister, Jessica. She's too wrapped up in being 16 and purposefully rubbing the fact that she drives me around in my face. She straight up tries to make me feel bad that I can't drive and it's quite awful to know that she is okay with doing that. I ask her to take me to CVS to pick up my medicine and she says "I shouldn't have to drive you everywhere just because you're disabled. It's my car and I have more important places to go." But I wont ever forget the time when I was angry at her for something completey irrelevant and she said "You're just mad because I have a job and I have the car you wanted."

The twins are too young to understand, and do nothing but make fun of me because I have to take naps (or as they like to say "sleep all the time") and can't hold a job. It's quite cruel for 12 year olds, but what do you expect?

My dad? Well, he cries too but he does it in secret when I'm not around. But when I talk to him, he is so overly positive that he can't stand to hear exactly what I'm scared about. He uses the words "Everything will be okay" simply to make me stop talking so that he doesn't have to hear what he doesn't like.

Rafael... He's really all I have to talk to about this because he listens. But I know it annoys him so I've started to hold back as much as I can. No one wants to overwhelm their boyfriend. I'm starting to regret even telling him the bad news. The other night on the phone I was crying and he said "I wish you wouldn't be so negative all the time. All you do is complain." And when I realized that I came off that way, I haven't talked about it since. He realized what he said wasn't right and he apologized. Rafael explained that he was overwhelmed and said that he's here for me and here to talk to me when I need him. He wasn't trying to be mean, and he isn't a mean guy in any way. The fact is... no one really understands.

I'm not trying to complain when I tell someone I had a seizure that day. It's more of a warning so they know that more are coming. When I say I'm not feeling well, it really means that I feel a seizure coming on or I need to be left alone so I don't trigger one. And when I say I'm scared... I am simply just scared and I need someone to console me and just be there.

I wonder what it would be like sometimes if everyone had at least one seizure. Don't get me wrong - I'd never wish one on anyone. But it would be nice to know that people would understand and not see you as someone who is just constantly complaining or faking sick. It would be nice to be able to talk to your family or your boyfriend and know that they understand.

I feel like a burden on my family. All I hear from my mother lately is "Who pays for your medical bills? Who buys your medicine?" as if to make me feel bad or say that she's tired of doing it. I hear them talk about me at night and I see them cry. My boyfriend thinks I'm going to wake up from surgery and forget who he is. My siblings see me as some kid who should have moved out and should have a job but is still at home or sleeping all the time.

But I just can't let myself feel like a burden, or it becomes a burden on my own shoulders. That's the last thing that I need right now. I've got too much to worry about. And every time I get undressed for a shower and I see my tattoo in the mirror I remember that I am nobody's burden. I am beautiful just the way I am, and God made me to be myself. Job or no job, car or no car, bills or no bills. I am myself and this is who I was meant to be.

Wait... tattoo?! I never told any of you, did I? Well, I have had it a good while but I decided it was time to share. So here it is!

Anyhow, there it is. It isn't much, but it symbolizes all that I have gone through and the hope for my cure. Any person without Epilepsy just sees some mark that a foolish teen decided to permanently tattoo on her skin. But anyone who struggles the way I have and still do... Well you all know what it means. It is a well-deserved symbol of hope for a brighter future.

God bless,
Mandy Krzywonski
EpilepsyBlogger

P.S. - Stay tuned for Thursday's interview with Margo from Margo's Footprint!