Wants and Needs

'Tis the holiday season, and that means that it's the time to think about things that I want, things that I need, and what the difference is. Truth is, I don't really need anything. I could get through the future days the same way I've gotten through past days. People could argue that I need my meds so that I don't flop over seizing, hit my head and die. People could argue that I need money to pay bills and buy groceries and school supplies. People could argue that because of money, I therefore need my job. All of these would be correct, but in reality, what can a person live off of? Very little is actually a necessity. Food, shelter, and water... all of which I have. So in that sense, I don't need anything.

Wants are a completely different story. I want my computer to work smoothly. I want a new phone, or for mine to work the way it's supposed to. I want a new backpack. I want peace on earth. I want tolerance and understanding. I want certain people to be part of my life. I want friends. I want certain circumstances to change. I want a lot of things. But the thing about wants is that they are much more difficult to satisfy than needs, and one must learn to be content with wanting. Wants don't carry the expectation of being fulfilled; they only exist as desires. And I'm ok with that. Yes, I want things, but I can accept that I won't get most of them.

Then there are wants that become needs. There are moments when I truly feel like if I don't do something or get something or change something that I will go completely insane. Today is one of those days, and luckily for me, it is an easy fix. I need to exercise. I need to do karate. I need the peace that comes with it. I need the automatic responses. I need the sweat. I would like bruises. I need to do what I do best, for the sake of my own sanity.

So that's what I'm going to do today. I am going to go to school and work out. I will find peace, calm, and harmony. I will be centered. I will work hard. I will be in my happy place. And then, when I'm there, the rest of the world will fall away as it always does, and I will forget the rest of the wants. I will forget the struggles I have been dealing with for the last year. The thing I love most about karate is that it has the capacity to change absolutely everything without actually changing anything at all. And sometimes, that's all I need. That's all anyone needs: simple moments of quiet in a storm.

The Last Three Days....

have been a little rough.

I spent Tuesday and Wednesday at the Mayo, again. This time I met with an epilepsy specialist named Dr. Cascino. He was really super nice, and seemed way more concerned and interested in my well-being than Kantarci ever did. However, he talked at a million miles a minute and sometimes it was kinda hard to keep up. On the plus side, he has three goals for me: be seizure free, be on meds that I am side-effect free, and be able to safely and legally do anything anyone else my age can do (like drive). YAY FOR AWESOME GOALS! On the minus side, he's really concerned about the lightheaded spells or simple-partial seizures I've been having, and is deeply worried about the fact that I have them every day, several times a day. This worries me, because I have grown used to them and had almost brushed them off as a minor inconvenience, but if they really are seizures... it just gets a little scary again. On the neutral side, because it's helpful but inconvenient, I get to spend another 3 days in the hospital. December 14th I check into Saint Mary's, get my head all wired up, sit in a bed, eat hospital food, and be video-monitored 24/7 for 2-3 days. Greattttt. So I have that to worry about, and mostly, trying to get all my school stuff for the semester done before all that happens. Yay for stresss! (note the sarcasm).

So that was Tuesday and Wednesday. Wednesday night Shawn and I drove out to Paynesville to spend time with my family for thanksgiving. 'Twas uneventful. We ate and spent the afternoon yesterday with his family, and that was entertaining. Shawn thought it would be funny to slam the cool-whip lid into my face, so I smeared his with snicker-salad. It was enjoyable. Shawn's Grandma prayed for me and got all teary-eyed, which was sweeet but very awkward. Shawn made Kelsey cry by insulting her boyfriend. We watched Up, and I took a nap. Shawn and Josh wrestled and got in some brotherly bonding time. It was a good thanksgiving. We went back to my parents' house and watched Shawn's Star Trek movie on the big screen TV. Then we drove home...

When we got home it was almost 10, and knowing that Turbo's light switches off a little after 9, I went to go check on him and give him some food. His light was off, his temperature was stable, everything appeared as it should have, but his little body was unresponsive. We hope that he died in his sleep- he was curled up in his bag like he always does when he's sleeping. And of course, we hope he died painlessly. RIP Turbo, we'll miss you.

So that royally sucked. Today is black friday and I have to work, of course, as does Shawn. The thing is, Shawn is working this morning, and I don't work until night. We're hoping there will be enough time in between that we cann take Turbo's body to the vet and have him properly taken care of. I'm still crying.

In short- my health problems aren't getting better. Thanksgiving was decent. Turbo died :( and I'm super-stressed with work and school before I have to go back into the hospital. It's been a rough 3-4 days.

Stress

Ugh, so it's getting to that time of year when the stress is piling up. I have 3 major papers, and presentations to accompany them, none of which have adequate theses, and all of which need massive revisions.

I am tired, I am working a lot, and after thanksgiving our hours at work will be extended to midnight.

I have 2 days of Mayo appointments next week, and I'm worried about those. What if something is seriously wrong with me? Oh, and I found out that Paula, my advisor and prof of 2 of my classes this semester, has also had seizures and is on meds. It would have been nice to know this sooner, have someone who understands. Ugh. Whatever.

Although logically speaking, I have lots of time to do my work, I feel like I don't, and just thinking about it stresses me out more, which doesn't help, because when I'm stressed I get even less actually accomplished. In fact, I have a tendency to sleep a lot more.

Shawn told me to relax today, try to get some thought in about stuff without actually working, and it's helping. I'm actually talking to Dugan about my atheism paper and it's going really well and helping a lot. I just need to learn to relax.

I am going to be able to relax, right? I'm not going to go insane? Right?!

Miscellaneous Updates

1) I had another seizure. November 3rd. I can't be 100% sure, because Shawn was already gone to class for the day. I woke up and had a terrible headache and nausea, got up to pee, was super tired, and went back to bed for another hour. When I got up the second time, I showered and brushed my teeth like I normally do, and while brushing my teeth I realized that my bottom lip was swollen and puffy and looked like I had bitten it. I had been wearing my retainer so it wasn't nearly as bad as the damage my tongue took last time, in fact, most of the puffiness was gone by the end of the day.

Anyway, I called Kantarci and he set up an appointment with one of his colleagues that deals specifically with epilepsy, so for the two days before Thanksgiving I have another MRI, EEG and doctor's appointment in Rochester. Wish me luck.

2) I turned 21!!!! Yay!!! Got a bunch of gift cards, Mom and Knoll came to town and took me shopping and out for lunch, and I hung out with Nina and my new friend Laura and Laura's boyfriend Bob. It was fun. I got drunk, but not exceptionally so, and I was fine the next morning (both hangover-wise and seizure-wise). So yah, I have officially surpassed one of the last major legal hurdles. 16 was driving, 18 was voting and a bunch of other stuff, 21 was drinking. I'M A BIG KID NOW! :)

3) I'm pluggin away at school. Slowly but surely getting through the semester. It's tough, and I'm quickly running out of steam. I have 2 of my major papers mostly done, I plan on working on one this weekend, and I will have a major presentation based on those papers for each of my classes. Slowly but surely... can't give up... damn some days motivation is hard to come by.

Memory Issues Revisited

I realize today that I have a lot of issues. I have anxiety issues, I have memory issues, I have anxiety issues because of memory issues. I have lots of stress. I'm not the most social person in the world. I have some issues I need to work on.

I've been having more lightheaded spells lately. I refuse to call them seizures, even though I'm fairly confident that's what they are. They're not just on the left side of my body anymore, they now alternate between right and left. I still have some measure of control over them, but stress definitely aggravates it. Shawn thinks I need to go to the doctor again, just to check on things. Personally, I'm sick of doctors.

Today in my Buddhism class we were meditating, and the prof asked us all what we were feeling. A lot of people replied with "calm" "clear" "focused" etc... but in almost 20 minutes of meditation, I spent at least the first half feeling scared or anxious. Why does being alone with my thoughts terrify me? Why am I so afraid of everything?

We got to talking, in class, about what a person is. Philosophically speaking, of course. Some people thought that the self was contained within a soul, others in personality, some in thoughts, some thought the self was represented through actions... I think the self is made of memory, but no one who hasn't been there could understand what it's like to lose that. It really got me thinking, who am I? Who was I? Am I different now than I was a year ago?

I've decided I want to write a book. I think I'll title it "Out of the Void" with some sort of catchy subtitle (maybe "a year gained after a year lost") about my experiences with amnesia, epilepsy, and a lot of the things I've put into this blog in the last year. My biggest hurdle will be not turning it into a diary, not exposing my entire life, because, as we can see here, I have issues with overexposure. I'm glad no one reads this, because I don't need the world knowing that in the last year I've lost my memory, had major relationship issues with my fiance, had a falling out with my best friend, lost my driver's licence, etc etc etc. I mean, some of those things are public knowledge, but if I decide to follow through with this book idea, a lot will have to be edited out.

Long story short, I thought I was getting over this whole memory thing. I thought I was getting better, but I still have a lot of stuff to work on, and I think it's going to take me a lot longer than I expected to fully accept things and move on.

Buddhist Temple Visit

Saturday morning we went to the Buddhist Temple about 45 minutes away and fed the hungry ghosts. It was incredible, and knowing I'd been there before but not remembering is so surreal. I got up at 3:30, we left school at 4, and got there by 5. The monks did about an hour of chanting, both to the Buddha and then as part of the ceremony for ancestral spirits, and to call to any spirits that may have been reborn as hungry ghosts. Hungry Ghosts are these ghosts who are ugly and putrid and disgusting and they have huge bellies but tiny tiny mouths so they are always hungry, and they can only see things that are gross and dirty, so in order to feed them we had to throw sticky rice and fruit onto the ground. The whole purpose of the ceremony is to make merit for yourself and your family in terms of karma, as well as to honor your ancestors just in case they did something bad and were reborn as hungry ghosts. The temple was beautiful, and I had a really good time going.

Made Me Think

Have you ever been to the website makesmethink.com ? I love that site. It's all about different stories (most of them sad, sweet, or bittersweet) that affect a person and make them think. I had one of these moments yesterday, but it was a bit too long to submit to the website, so I'll post it here instead.

Yesterday, I went to school at the University of Minnesota with Shawn. He wanted me to, and we killed almost 3 hours between his classes. But when he went to class, I wandered around looking for something to do.
There was a preacher on campus. A man who wore a big sandwichboard saying that everyone is going to hell and with a big list of people who qualify as sinners on the front (fornicators, drunkards, pot smokers, gangster rappers, feminists, socialists, dirty dancers, homosexuals... the list goes on). He was dressed nicely in a shirt and tie, a cute little vest and khaki pants, and he was just standing in the middle of the courtyard, shouting for all to hear, stories and moral lessons. Naturally, considering we're on a college campus of over 50,000 students, a crowd formed, and many people shouted back. People would antagonize him, and ask him questions, and try to disprove him when he cited some scripture as evidence for his beliefs, but he did quite well under all the pressure.

There's another crazy preacher guy, who is apparently a regular on campus, but who might genuinely be crazy. He was wearing a big purple hat and usually just stands around reading the bible out loud, but today he decided that since other preacher was getting more attention, he would join in. Mostly he just wandered around throwing a football at kids and playing his guitar, but occasionally he would sarcastically mock the other preacher. Again, the first preacher dealt with this remarkably well.

Eventually these two were joined by a student (who I had seen earlier representing the atheist club on campus) wearing a sandwichboard that said "Smile, there is no hell" and just standing there quietly smiling. The entire time I was there watching, for over an hour, he just stood there quietly smiling. I respect that action more than anyone on the sidelines who was shouting, because he never said a word.

Then came the part that made me think, and made me very, very angry. Three students came running out from a building behind me, each with a can of silly string. They sprayed silly string all over the preacher, and ran off the other direction. He pulled up his board over his head to cover his face, and for a split second, I could see fear in his eyes. I mean really, how was he to know that what they were spraying all over him was silly string, and not pepper spray, or mace, or spraypaint, or who knows what else. It just made me wonder, how many times has he been attacked for his public preaching? How many times before has he pulled his board over his head in self-defense?

Yet he continued preaching. He and the crazy guy picked off as much of the silly string as possible, and he just kept going, as if nothing had even happened. It made me think, why is he doing this? Why would anyone put themselves in a position not only of ridicule, but possibly even danger, to preach the bible to a bunch of college kids? What motivates him? What does he think he's accomplishing? What gratification does he get from it? And the biggest question of all... how far would this man go to spread the word of God before enough is enough? How many times would he be willing to be ridiculed, humiliated, and even attacked? How serious would things have to get for him to stop doing it?

And maybe it's just because I'm taking a martyrdom class, but I had a couple more questions. Would he stop? Or would this man, and many others, be willing to give up their lives should the situation come down to it? And separately, the definition of martyrdom involves dying for a cause, but can a person be a martyr before death? What if death is not a requirement, but instead, a certain amount of suffering? Can a living person, willingly suffering for a cause, be considered a martyr?

These are questions I don't have the answer to, and may go much deeper than a situation of a preacher on a college campus, but the whole point is that it made me think, and I hope it makes other people think too.

And a note to anyone who thinks it's funny to attack another person, even with silly string... It's not funny. It's rude and just plain stupid. Have a little respect. I disagree with the guy as much as anyone else: I'm pretty much an atheist, I'm a feminist, I support gay rights, I drink, and I have premarital sex; but that doesn't mean I'm going to insult or attack someone who has the courage to get up in front of a crowd and talk about his beliefs. By publicly humiliating another human being, you're not being funny, you're making yourself look like an ass, probably because you are one.

Through the Maze

I'm not really sure what I'm going to write about today. In the past, many of my blog entries have had a specific topic or theme, whereas today, I am merely feeling conversational or informative. So in no particular fashion, I shall let you, my reader, follow my train of thoughts through the maze. Sometimes we shall hit dead ends, or end up back where we began. Whether we will ever emerge, I have no idea.

I think I might be in over my head with schoolwork. I signed up for a full load of classes, but I think I have to drop my history class. I don't need it to graduate, and without it, I think I'd be much saner. Even without it I'm writing 3 papers a week, doing a ton of reading, working on several larger projects (it seems all of my professors decided to space out the final project over the entire semester, which is both good and bad), and trying to keep up with my job, my fiance, and my friends. Oh, and Martial Arts Club will be starting soon.

Part of me still has major anxiety issues. Because I feel overwhelmed with school, I get anxious or depressed. I start losing my optimism and only seeing the negative. I sometimes give myself mild panic-attacks and have to remember to breathe. I cry for no reason. Needless to say, I need to learn how to cope. All of this after only 2 days of classes is not a good start to the semester, but I'm hoping that as my options are limited (learn to deal with it or go insane) that I will be able to get a better grasp on the situation as time progresses.

Nina is probably leaving after this semester. She's going back to Wisconsin. She wants to get into a music program at the University in Madison. She misses her friends from high school and her family. I can't really blame her for wanting to go, but the selfish part of me wants to know what's going to happen to me when she's gone. She's pretty much my only friend. Who I am going to hang out with? My other friends are limited friends- I only hang out with them on certain occasions or under certain circumstances. Nina... nina I can call anytime for no reason whatsoever. I will miss her if she goes.

I saw a play today. It was called 'My Name is Rachel Corrie', and it's about a young woman who died in the middle east while working as a peace activist. The play itself was a series of monologs- excerpts from her diary entries, etc- but parts of it really got to me. She kept asking how the world could be so awful, and how people who are privileged can really be so blind to the suffering of others. One of the quotes was "I was embarrassed at just how long it took me to understand, deep in my gut, that people LIVE like this" (in reference to poverty and war-zone activity). Other parts of it spoke to me in different ways, and I definitely could identify with the main character. She went to small liberal arts college, always felt like a bit of an outsider from her middle-class suburban family, fell in love with the world around her, and never quite felt satisfied. She was always looking for something worthwhile, and didn't find it until she journeyed to Israel. Once she found it, she died for it.

It might be selfish of me to think of this martyrdom story and somehow figure out a way to tie it into my issues pertaining to epilepsy, but that's where my thoughts went, and as I mentioned previously, I'm not holding anything back; into the maze we go. She said she didn't understand how people could live their lives and not understand another person's perspective. She didn't understand how the world could go on as it did, blind to the trials and suffering of so many. She felt isolated from her family and friends, not being able to explain her feelings about the sights and experiences that surrounded her every day.
I don't understand how people with epilepsy can have multiple seizures a day. I can't imagine it. It's so foreign to me, trying to think that I've had 2 in the last 2 months, and that's a big deal. I can't even fathom dealing with it every day. And I know, the world is not blind to the suffering of people with illnesses, but if there is anything I have learned, it is that when the rest of the world moves on and confronts the next big thing, those who are directly affected will never be the same, and can never look at anything the same way again. I am ok with most of the world being blind to epilepsy and my issues- it's really not that huge of a deal, and I understand that- but it has become such a huge part of my life and my thoughts, that I can't imagine trying to go back to a world where I don't have to wear my retainer to bed as protection against biting my tongue off.

The part of the play that struck closest to home though was the isolation aspect. The fact that no matter how hard she tried, no matter what anyone said, no matter what her counter-arguments were, she could not make people understand. She tried to tell her mother about her experiences living with Palestinians and how horrible their living conditions were, and her views of the political atmosphere. The truth is, there is no way her mother could understand without being there too. I try to tell my family what it is like to have no memory of 2008. I try to tell them how scary it is to get lightheaded, or to wake up having bitten my tongue. I try to tell them that there is absolutely no logical reason for the irrational fear that sometimes grips me so hard that I can barely breathe. They nod and hug me and pretend to get it, but at the end of the day, they still ask me what's wrong, and what's scary. They don't get it. It's like being split in half every time it happens. I have a logical part of me that says "it's ok, this happens all the time, there is NOTHING to be afraid of" but when most people can let logic overrule their fear, I can't. Something is electro-chemically altered in my head that even though I recognize the logical argument, I am not capable of not be terrified.

Sometimes, I hear voices. I don't think I've ever told anyone that part. Sometimes, when I'm talking, the world slows down, and I can't finish my sentence. I don't recognize the words coming out of my mouth. I can hear the things people are saying, but the information doesn't sink in. I can repeat what they say, but cannot comprehend it if an answer is needed. Subtle sounds in the background suddenly fill my head. I feel like I'm underwater, and everything is muffled. And sometimes, just sometimes, I hear voices. Not crazy voices; usually very random voices, like excerpts from a television show or movie, or a part of a conversation I heard earlier that day. I'm afraid to tell people I hear voices, because then people might think I've truly gone insane. Who knows, maybe I have.

But my whole point is, how is it possible to make anyone understand what it's like to be me? I've given up hope on actually getting anywhere. Instead, I just sit here and blog away. No one reads this anyway, but it helps to get everything out in the open. I would write in my diary, but typing is faster, and even though I know no one reads this, I secretly hope that someone will. Maybe, if I keep trying long enough, maybe if I keep talking to everyone and no one, just maybe, someone will hear, and just maybe, someone out there can begin to understand.

A Day of Remembrance

Today is September 11, 2009. 8 years ago, planes crashed into the World Trade Towers and the Pentagon. Almost 9,000 people died. Today, plenty of people are taking time out of their day to remember the tragedy that impacted America. I am one of those people.

But, I am also a person who thinks that everyone needs to be remembered. If you have ever known someone who has died, or if you have ever lost someone, or if you know of anyone who's suffered a personal tragedy... they deserve to be remembered too. Maybe today is a day that should be dedicated to the attacks eight years ago, just as there are days to commemorate other major events in history. Maybe some people would argue that today is a day to focus on those who lost their lives for their country, and not for remembering the grandmother you lost to cancer. Some would argue that taking time out of today to reflect on changes and mistakes in your own life is selfish, and that mourning the loss of close friendships is an insult to the people who have actually died. Some would argue that today is not the time to focus on the negative things that have happened in your own life, and how much your world has changed in the last year. As I have already stated, I am not one of those people. I have already taken part of my day and dedicated it to the memory of those who fell in the terrorist attacks 8 years ago. But, I am also letting my thoughts go out to my own loved ones who have died or are ill. I am also letting my thoughts reach out to friends I miss terribly. I am, selfishly, letting my thoughts dwell for awhile on what has happened in my life in the last 10 months.

Today is a day of remembrance. What you choose to remember is entirely up to you, so long as you don't let time slip by unnoticed.

The Good, The Bad, and The Expensive.

The Good:
Shawn and I are moved in! Today is Thursday, and we successfully moved in Tuesday. It only took an hour or two to move all of our stuff, especially since after the whole bedbug fiasco our furniture selection is limited. We spent Tuesday unpacking and organizing, and so far we are very pleased with our new residence. We have a cracked window or two that the management needs to fix, but other than some minor cleaning, everything else is great. :)

We spent yesterday shopping, and furnished our apartment. We now have 2 chairs in the living room, a rug, a coffee table and tv stand, and a couple end-tables. I learned that IKEA is a giant maze, and that the cafeteria/restaurant whatever you want to call it has surprisingly delicious swedish meatballs. Yum.

We also learned how to navigate the bus lines. We each bought a bus pass and practiced taking it to Roseville so I know how to get to work. Then we went to the State Fair. The Great Minnesota Get-Together was, as always, immensely satisfying, especially in regards to food. I learned that a Root Beer Float made with Dippin' Dots ice cream is very yummy indeed.

Last but not least, Nina is coming back tomorrow! I probably won't get to see her much, because I am working and my mom is coming down on Saturday, but I'm excited, and I miss her. It'll be nice to have a friend in the neighborhood. :)

The Bad:
Today I called home to check in on things, and Mom said that I have officially received notice that my driver's license is being cancelled. I'm not sure if it is still a valid form of ID, and I'm wondering what to do when November rolls around and I need to prove that I'm 21. I guess I will have to deal with that later. Regardless, the time has finally come when my freedom has been officially rescinded.

The Expensive:
As you could probably piece together... we've spent a lot of money in the last few days. Between furniture, bus passes, textbooks, rent, cable, and various other necessities... I'm broke. Or, I should be. That's the scary part- according to my checkbook, I'm not. And that's wrong, because there is no freaking way that I am not flat broke. So that means that either something hasn't come through yet, or else my balancing skills are seriously effed up. Either way, I need to sit down and try to figure out where things went wrong. Ugh. I hate money.

Overall, life is falling together as life always does, with both positive and negative aspects.

Puzzle Pieces

The pieces of the puzzle of my life are falling together and finally forming a coherent picture :)

- I successfully signed up for classes months ago, and Shawn has orientation at the U two days from now.

- I have a job, and I really like it so far.

- Shawn has a job, and although he hasn't started yet, he's excited for all the new possibilities.

- Yesterday we looked at an apartment and put in an application, today we got the phone call saying that our application has been approved and that on September 1st we will have a place to live.

Everything is coming together wonderfully. The big pieces have finally fallen into place, and the little ones will soon follow. I'm still investigating epilepsy and thinking about my seizures. I'm trying to figure out which vaccinations I need for school, because there has been some confusion regarding that. Shawn needs to start his job and sign up for classes, but both of those things will happen very soon. Unfortunately, Dr. Kantarci has not deemed me fit for driving, so I will have to learn to take a bus, but since that is hardly unexpected, I don't deem that bad news. Life is looking a little bit brighter :)

The Never-Ending Struggle

So I think I might be epileptic. Officially, I'm not exactly sure what the difference is between "non-epileptic seizures" and the seizure disorder of epilepsy, but considering I had another seizure 2 days ago, I'm afraid the chances of me being epileptic are pretty good. I've been doing my research, and it seems to me that most of the symptoms I have are indicative of seizure activity- including my lightheaded spells (as I've been calling them).

A lot of people have what are called auras... symptoms that may signal the onset of a seizure. From what I can tell in my research, most people's auras are incredibly similar to my lightheaded spells, and these auras are actually seizures in themselves. They are called Simple Partial seizures, and may or may not lead into larger seizures. In my case, they don't. I have also learned that having seizures when sleeping is not unusual, and considering that 2 of my 3 major seizures have been as I'm waking up in the morning, I would say that that rings true for me too.

This particular incident was particularly frightening because I was alone. I was sleeping at my grandparents' house because I had to work Sunday evening. Sunday morning I woke up, thinking I heard a strange noise. I listened for it and it didn't come back. Groggy, I looked at my phone and realized it was probably time for me to get up, so I did. I showered, and thought to myself "wow, I really need to brush my teeth, my breath stinks", so I did. I then went to have breakfast, and my cheek and tongue hurt. I thought maybe I had a canker sore or a swollen tastebud or something, and just chewed on the other side of my mouth. When I went to make my bed though, I started to get really suspicious. The sheets were everywhere, I mean, I toss and turn a lot, but they were totally in disarray, and even worse... there was blood on my pillow, damp and mixed with saliva. At this point, I put the pieces together. Messed up sheets, bloody pillow, nasty taste in my mouth, sore tongue and cheek... and no memory of the event. I called Shawn. I explained the situation to him, and as I was in the midst of explaining, I realized something that solidified the evidence in my mind... I remembered and recognized the noise that had originally woken me up. It was me, screaming, during my seizure.

Shawn came and got me. I'm not driving anywhere. I called the Mayo and Kantarci upped my meds. Now I'm just trying to figure out what to do. Shawn and I are hoping to get an apartment within walking distance to Mac, and then I can take a bus to work. I am finally in agreement with everyone else in thinking that I shouldn't be driving, especially after researching and finding out that my lightheaded spells are actually small seizures. If one of those were to progress and become larger... I should not be driving. For now, various family members and friends are volunteering to drive me to and from the cities for work. Shawn and I are hoping to be in an apartment as of the 1st, and if not, we'll camp out with my relatives or in Grandma and Grandpa's house.

Now, I am working on acceptance. That part could definitely take me awhile, but I'm doing my best, and that's all I can hope for.

Damn the Seizures!!!!!

All right everyone, here's the latest update. As pretty much everyone knows, I was hospitalized in December for seizures caused by my brain swelling. I was put on meds and the problem resolved, with the worst aspect being about a year's worth of memory loss and restrictions on driving.

Well, I was on 2 different anti-seizure meds, and in June the docs decided to taper me off one of them. I took the last one on July 4th. 2 days ago, I woke Shawn up by having a seizure (12 days after coming off my medicine). He called 911 and I went in to the Paynesville hospital where our friendly neighbor and doctor Larry called the Mayo and talked to my doc there. They upped my dose of the medicine I'm still on, but are NOT putting me back on the other medicine.

Yesterday my family and I drove to Rochester and met with my doctor there, and there are a few things that he said:
- He is not surprised that this happened, and that considering I had recently come off meds, it was almost to be expected.
- He said that a regular sleep schedule and predictable lifestyle will help prevent future flare-ups.
- Also, the light-headed spells I've been having recently are actually minor panic-attacks and are basically psychological. His advice- breathe into a paper bag.
- He also said that it is again mandatory that I stop driving, but I take this with a grain of salt. He said that last time, and everyone I talked to at the DMV had differing opinions. We'll see how that goes. I am reluctant, to say the least, to give up my license again after only a month of having it back.
- Lastly, as every doctor is likely to say, he mentioned that "a healthy lifestyle will help improve overall wellness" and suggested dieting and getting lots of fruits and veggies.

So anyway, that was that. Basically, there's nothing we can do about it except increase my meds a little and call if it happens again. I bit my tongue while seizing and it is still bruised and hurts like hell. Luckily, I didn't lose any more long-term memory, the only missing memory this time is for the duration of the seizure. Overall, medically, I'm fine. I'm on the lookout in case it happens again, but generally fine. Emotionally, I'm ok. I'm sick of dealing with this over and over again, and having the doctor tell me I need to have a bedtime, go on a diet, and stop driving again does nothing to calm me down, in fact, it's extraordinarily irritating. Grrrrrrrrrrrrrrrrrr.

What a Way to Start My Day...

I woke up this morning to my mom peering over me, "Erica, can you hear me? Honey, you had a seizure." Again. The ambulance guys came to get me and brought me in to Paynesville. Larry was the doctor, which was fun, because since he's my neighbor, he's easy to talk to. We called down to the Mayo, and they are increasing my dosage of Keppra but continuing to keep me off Dilantin. Nothing more to do today, but I'm headed to Rochester tomorrow.

According to Shawn, I woke him up this morning with my seizing, including the stiff-limbed, jaw clenched, and funny screaming like I did with my very first seizure last December. Not a good sign. I bit my tongue and now it hurts. Ugh. Oh well, not a lot I can do about it right now.

However, this does squash the possibility of me driving around for awhile, and Mom's also not sure if she wants to go to Canada next week. The last thing we'd want is to be hours away from a hospital in the middle of Canada and for me to be having a Grand Mal seizure. So... that sucks. I'm hopeful that Mom can take me to karate tonight though- it would be nice to be able to keep working on my new kata.

A Smattering of Thoughts

A few unrelated things have been cluttering my mind recently, and rather than try and post them separately, I'll just put them here:

First of all, I saw the Harry Potter movie last night (#6, Half Blood Prince). It was amazing, as all HP movies are. I really felt like the characters have grown into their roles, and I've grown especially fond of Dumbledore (of course, just in time for his death). As with all HP movies, there were parts of the book that were left out or rearranged, and there was one scene in the movie that wasn't in the book at all. That part kinda confused me, but for the most part, it was spectacular, and I can't wait to see it again. We sat in the front row, so it was difficult being that close to the screen, and I look forward to sitting further back and appreciating more of the film next time. Overall, I was very pleased.

My second, and entirely unrelated, note is that next week I will be going to Canada with Mom and Knoll. I didn't go last summer, and even if I did, I wouldn't remember it. It should be interesting, both because I've never gone with Knoll before and also because this will be the first time in years that I am not bringing Krista with me. Mom asked me if I wanted to, and I said no, of course, but Mom doesn't know that whole story, and doesn't know that we're no longer friends, and I'm not sure I really feel like disclosing the details, so we're just going to leave it at "no, I dont want to bring a friend." This change will be significant though, and I can't help but wonder what sort of emotions I will face once I get there. I love Canada, and I love staying at our cabin, but part of the thing I have always loved was the silence and the capacity to spend long periods of time alone with my thoughts. In the last several months, I'm not sure I want to be alone with my thoughts. I'm not sure I want to dwell on the things I have said and done recently. I'm not sure I want to dwell on the things I do and do not remember from last year. I'm not sure I want to wonder about the future. Those things being said, how am I going to cope with the silence that used to be so soothing but that now has become frightening?

Lastly, and on a third completely unrelated note, I miss being social and getting out and about. I really would like to have more fun in my life and stop feeling like an old person. Ugh. Is it too much to ask to want to feel like a normal college student?

Womanhood

Some days, I hate being female.

Seriously. I spend approximately one week out of every four being totally bitchy, emotional, and eating all the junk food in sight. I then spend the following week with the feeling of nausea, cramps, and misery that accompanies the feeling of my uterus falling out and rotting. Seriously? It's miserable, and I hate it.

Is this some sort of Darwinian punishment for not using my reproductive organs for reproduction? "here, instead of being pregnant, let's just give you monthly misery until you beg for mercy" NOT FUNNY! And I mean really, I'm sure it could be worse. The baby scene, the menopause scene, etc etc etc are all much worse than a little PMS and blood, but, those things in mind, if that's what I have to look forward to, I'm really starting to wish I had been born a boy.

Grrrrrrr.

A Word of Thanks

On this date, July 4th, 233 years ago, the United States Declaration of Independence was signed by the founding fathers of this country. Now, that being as it is, I would like to express my gratitude to the memory of those men, and the ways in which they helped form the country I live in today.

Many people would not classify me as the 'patriotic' type. Personally, I think a lot of people have a skewed idea of patriotism. A lot of right-wing conservative republicans would consider a lot of my beliefs unpatriotic. For example, I am against our military action in the Middle East, especially in Iraq. I am in favor of gay marriage and abortion rights. I am a pretty liberal person, and to top it all off, I'm pretty much an atheist. As I've said, to many people, this is very un-american of me. And again I say, if those are the factors that are used in defining patriotism, I think that's a pretty skewed definition of the word.

Be that as it may, I consider myself a pretty patriotic person. I don't always agree with the things our government does, but there are a great many things that I am grateful for, and those things are unique to the Western World ideology, if not exclusively unique to the US itself.

The most important thing I can think of that the US has over many other countries in the world is the right to choose. Our Bill of Rights, established over 200 years ago, gives us choices. With some limitations, we have been enabled to speak freely, defend ourselves, choose a manner of worship (or lack thereof), choose some of our legal rights (such as not incriminating oneself in court, and the right to choose one's own laywer). These articles also protect us from injustice, such as cruel and unusual punishment, and the abolition of human slavery.

All in all, I am incredibly thankful for those people in United States' History who have helped form the country as it is today, and I am thankful to those people are are attempting to reform aspects of it today. One of the greatest things about America is it's ability to grow and change, and I will be forever grateful that I live in a country where the freedoms I take for granted are truly free.

The Last 4 Years...

4 1/2 Years ago, he was obnoxious.
4 1/2 years ago, I couldn't decide whether I liked him or hated him.
4 years ago, I was inexplicably drawn in by something about him.
4 years ago, I decided that even though he was obnoxious, I liked him.
4 years ago, he decided to randomly call me one night, and the night after.
4 years ago, we officially became a couple.
3 3/4 years ago, I fell in love.
3 1/2 years ago, pretty much everyone thought we were glued together- some thought it was cute, others, juvenile.
3 years ago, he graduated from high school and started college.
2 years ago, I graduated from high school and started college.
22 months ago, he asked me to marry him. I happily accepted.
13 months ago, we got our first apartment and started living together.
7 months ago, I got really sick. I got so sick I lost a big part of my memory, I was scared all the time, and I felt like I was going crazy. He was still there.
6 months ago, I started to feel better, but we had to move in with my parents. He was still there.
3 months ago, I screwed up majorly and significantly hurt our relationship. He stayed anyway.

3 days ago, we celebrated our 4 year anniversary. We're happy, honestly and truly happy. No lies, no deception, no false pretenses, no fine print. We're a happy couple. We have friends, we have family, we have each other. We're getting back on track to having a life again.
3 days ago, I realized, for the millionth time, just how amazingly lucky I am to have this man in my life.
3 days ago, I tried on a wedding dress for the very first time, with my best friend standing by my side, and I felt every bit as beautiful as he tells me I am.
3 days ago, I realized that nothing can ever measure up to love. Of all the possible emotions, nothing can ever envelop a person like love. Anger and hate burn and consume, sadness overwhelms, happiness explodes, but love... love pervades everything. Love manages to fill every crack and crevice. Love can replace other emotions, but nothing can ever replace love.

Tonight, I lay in bed, unable to sleep. I lay next to this wonderful man, snoring lightly beside me, too exhausted from a day's worth of work to care that I'm typing 2 feet from his face, and I write these things, to try, even for an instant, to capture the essence of what I feel in this moment.
Tonight, I look at the man I love, and I do not care whether I wear the dress I tried on 3 days ago. I do not care that we have had our trials and rough spots to work through. I do not care that I lost a part of my life. I do not care that we live with my parents. I do not care that some of my friends don't understand. I do not care about what people said about us in high school. I do not care that I once thought he was obnoxious. I do not care about anything other than this moment, and in this moment, I love the man lying next to me. I love him with every part of me, and there is nothing that can take away from that feeling.

4 years ago, I never thought I would find the right guy. 4 years ago, I thought high-school romances were doomed for failure. 4 years ago, I never would have thought that I'd be one of those people to settle down and get married before turning 25. 4 years ago, I didn't believe in true love.
4 years ago, I never thought that things would turn out the way they have.

But Tonight, I am completely happy to be here, in this moment, with my life as-is... so long as he is beside me, and I know now that he always will be.

What is it about anger?

What is it about anger that feels so good? What is it that provides anger with than inherent quality to grow and feed upon itself? To harbor negativity and somehow enjoy being consumed by it? Anger is one of the strongest emotions, and so hard to control, and yet being angry feels so good!

Why is it that I just ended one of the strongest friendships of my life, and yet I feel no remorse? I am a happy person. I never yell at people. I may complain behind their backs, but I am never bitchy to someone's face. Never. Yet here I am, having royally and sarcastically bitched out my best friend, wait, former best friend, and damn, I feel amazing. How is that possible? How can it feel good for me, a genuinely nice person, to be so mean?

I used to think that anger comes first and sadness follows. I've spent the last 2 or 3 days waiting for the sadness to catch up with me. Waiting for the realization that I ended my closest friendship to hit me, and for regret or remorse or guilt... but none of that came. Last night it occurred to me that maybe, just maybe, I'm wrong. Maybe instead of anger and then sadness, maybe it's the opposite. I have spent the last several months being sad. I have spent a significant amount of time mourning the slow decline of a friendship I valued greatly. I have convinced myself that by continuing to try, that I was doing the right thing, and that I didn't really want to lose that relationship. I finally gave up hope of salvaging that relationship, and I let the anger get to me. I let the irritation and resentment catch up, and I spent some time trying to talk myself out of it. I tried to tell myself that anger wasn't real, and that I had nothing to be angry about. It didn't work. It finally got to the point where I didn't care about what I might be losing, because by letting out my anger, I was freeing myself, and that's exactly what I did. I did what I've always secretly wanted to, but never had the courage to do. I let out exactly what I was thinking, in the smart-ass, bitchy, sarcastic manner that I had in my head. I let go of the resentment, and the anger, and I would have kept going had I had the chance. As it is, a part of me still harbors more resentment that I couldn't get out of my system, but the majority of me feels freer and happier than I have been in months. So yes, the sadness of my loss might catch up to me eventually, but I don't think so. I think the time for grief has passed, and now that the anger has passed as well, I think I can finally let go and move on.

Anger is a curious thing. It grows and consumes a part of the soul, and left to its own devices, it can take over. Taming anger is an honorable goal, and should be practiced by all. However, I strongly believe that at some point, anger will express itself, with little regard for consequences. At some point, it takes over the mind and the intellect, and brings apathy instead of worry. It calms inhibitions, and unleashes itself. It can be controlled, but at what cost? Isn't it sometimes better to free oneself of its hold?

My Not-So-F*ed Up Brain: Part 2

I just got back from the newest appointment at the Mayo. I had another EEG this morning, and everything came back normal again, yay! At this point, we discussed with my doctor what's going to go on next. I'm going to decrease and taper off of one of my meds over the next 3 weeks to a month, and, assuming that there are no recurring symptoms, I won't need to return to the Mayo until this time next year. In that time, I will continue to be on my other medication, as a precaution. So, all is good on the medical front, yay!!!!

Back On My Feet Again

The world loves me again. I feel great. I have had a great week, and I am loving it!

I got my sandan... my third degree black belt. I was surrounded by my karate family, surrounded by people who understand me and what I do, and I did my best to prove myself, and I earned my sandan. It still hasn't entirely sunk in, but wow, I feel incredible. I always thought this was what I was going for, but I know now that even this isn't enough. Sensei said last night that at every stage of the game, a person has to evaluate and create goals, and I know now that although I have reached a level I never dreamed of, I'm not done yet. I've come this far, and I'm going to continue doing karate until I am unable to do it anymore, because it is my life's passion, and it's the one thing that makes me truly happy.

I'm driving again. I tried calling the DMV and they told me they would not inform me if I am allowed to drive, only if I'm not. So, that being said, and considering I have a note from my doctor clearing me to drive, damnit, I'm going to drive. I love it. I have my freedom back. I have my music back. I can crank up my rock-out-tunage until it doesn't go any louder, and I frickin love it. I have my life back!!!

I spent several hours yesterday with Hailey, who I haven't spent any time with in a year at least. We gossiped and talked and caught up, and it was great.

My parents are on vacation. I cleaned the house. I took Turbo outside. Shawn has the weekend off. I might be baking with Michelle tomorrow. I get to finally have some time to myself, and feel independent again. I can finally feel like me again!

On the down side, I miss my friends more than ever. It was great to hang out with Hailey again, but catching up and talking always reminds me of the people who have run screaming from my life, or those who have slowly faded away. All she had to say was "he misses you" and I just about lose it. Of the 6 or 7 people in my life that I have been closest to and trusted the most, only 2 or 3 remain. I love them, and I can't complain, but what about the others? What happened to my great circle of support? As much as I love my life and finally feel like the pieces are falling together again, I can't help but miss the aspects that are gone.

But, yet again, I'm complaining when I have only things to be thankful for. I am happy again. My life is good again. I am moving forward, and embracing life as it comes at me. Let's just hope it stays that way!

Karate Camp!

Hello all!
As I write this, I am sitting in my hotel room in Texas after 2 days of karate camp. My feet are killing me, I have bruises all over, I haven't slept well, and tomorrow I will be testing for Sandan in front of at least 100 people [most notably, of course, Master Kise and Kaicho]. But I love every minute of it!

I love the feel of blood pounding in my veins. I hate sweat, but I love the fact that I am working to my full potential. I know exercise releases endorphins, which is why I love these things, but that doesn't change the fact that I love them. I love doing a kata on autopilot, and knowing I do it well. I love watching the people around me. I love asking and answering questions, and learning new and better things from people I haven't seen often. And most importantly, I love those people. I love how everyone understands our system, and the things we stand for. I love how I don't have to explain myself or what I do to people who think that ours is not a "true" martial art. No, I don't break boards. I've never been attacked by a board. I love the instructors, because they are there to help, and even the strict and highly disciplined instructors are willing to listen to and answer questions that arrive. I love meeting new people at every camp, and making new friendships, and I love reconnecting and continuing friendships I have formed in prior years. I love it all.

Tomorrow I will be testing for my Sandan. This will be the greatest achievement of my life (assuming I don't screw it up). As I said 3 years ago when I got my Nidan- I found karate, I love karate, and I'm going to do karate. Karate has shaped me as a person, and I feel incredible when I do it. I have truly found my life's passion, and I will never give that up. Thank you to everyone who has helped me get to where I am today.

Dear God

Dear God,

I don't believe in your existence, BUT I believe in the beauty of the world around me.

I don't believe that you perform miracles, BUT I believe in the good works that humanity is capable of.

I don't believe that you sent Jesus to atone for the sins of mankind, BUT I believe that he was and is an inspiration to his followers.

I don't believe that you answer prayers or help people, BUT I believe that having faith is help enough.

I don't believe that only religious people are rewarded after life. In fact, I don't think there is an afterlife. I think the best reward is being a good person in this life, and that's reward enough for me.

In short... I don't believe that belief is necessary to live a good life. I think that doing good works and trying to help others, being kind and compassionate, and pursuing happiness should be good enough for you. If people happen to have faith and religion helps them, that's good for them, but it doesn't work that way for me.

Thanks for listening,

-Charlotte

My Not-So-F*ed-Up Brain

So I just got back from spending two more days at the Mayo. As I said in previous posts, I've been having lightheaded spells that were a little concerning, so I spent Wednesday afternoon and Thursday at the Mayo Clinic to get things checked out and make sure that none of this is a sign of further seizure activity or complications from my encephalitis from December.

I had an MRI Wednesday afternoon, which came back the same as it did in February... NORMAL!!!

I had blood drawn Thursday morning. The waiting room was packed full, and of course, the median age was probably somewhere around 6o. I sat next to a really nice lady named Barbara who was doing word-search puzzles. She asked if I wanted to help her, but I declined, knowing full well that I would dominate and take over her word-search book if I agreed to 'help'. Anyway, results of the blood tests were normal too, although for some reason the amount of one of my meds was pretty low. The doc said not to worry though.

I had an EEG done later Thursday morning. Apparently the guy doing my EEG did one of my earlier ones when I was in the hospital in December. Obviously, I don't remember him, but it was nice to be able to have something to talk about. Despite only getting 6 hours of sleep, I had difficulty falling asleep during the test. I think it's just because it's notoriously difficult to fall asleep in a situation where you know you are being watched. Seriously weird. Anyway, even without sleep, the EEG went well. Everything came back as normal!!!
--- On a side note, the EEG is just a bizarre test. I mean really, they stick electrodes all over you, make you wear a stupid hat, squeeze gel into the hat and poke you with a little stick, then ask you a bunch of questions, expect you to go to sleep while you're being watched, then wake you up and flash a strobe light in your face for 5 minutes. Seriously, WTF?

Anyway, we met with Dr. Schmalsteig (forgive the spelling) on Thursday afternoon; he's such a nice guy. After describing the episodes I've been having and discussing the test results (again, all came back normal!) his opinion was that it is NOT related to seizure activity or any sort of brain abnormality. He said that the lightheadedness is simply an instance of not getting enough blood to my brain. When my body tries to compensate and tells my heart to beat harder, I begin to feel the blood in my hands and feet as well, thus the throbbing sensations. He said that it will probably resolve itself in time, but that I should make a note of when it happens and see if there are any consistent circumstances that trigger these episodes. He said the best thing I can do is just drink lots of water, and sit down or put my head down when this happens to get the blood flowing again.
--- Funny side note: Dr. Schmalsteig is a nice guy, and apparently pretty smart. About half an hour after we left the clinic and were on our way home, he called my cell phone. Apparently he "forgot" to remind me (again) that my meds may interfere with the effectiveness of the birth control pill that I'm on, and to encourage me to use a backup method of contraception to avoid pregnancy. LOL. Forgot? I Don't think so. I think he's a smart guy who decided it would probably not be a good idea to give me a sex talk in front of my parents. I mean, it doesn't matter, they know anyway, but nonetheless- it's funny. LOL... I mean really, I'm still giggling about it. 'forgot'..... lol....

In Short:
On the one hand, it's a little annoying to have driven 4 hours and spent 2 days doing tests only to be told that nothing is wrong and that I need to drink more water. On the other hand, NOTHING IS WRONG!!!! So I'm happy, and my family is super-relieved too. Yay for being not-so-screwed-up anymore!!!!!!!!!!!

Finally, a post NOT related to my brain...

Ok, so I figured I've babbled on and on and on about my health issues until anyone who reads this (who is actually no one) would be totally bored. Instead, today I'm going to talk about something much more fun and lighthearted...

I got into 3 of the 4 classes I wanted for fall semester!!! Yay!!! I'm taking Theory and Method in the study of religion, Martyrdom Then and Now, Buddhism and the Supernatural (YAY!!!), and the Andes. The Andes wasn't my first choice, it was a backup, but whatever, I can deal with it. I like the Andes, I mean really, I went to Peru, I've been to Macchu Picchu. It's fuckin awesome. I think I can deal with it. But yah, I'm super stoked for my schedule, and the most awesome part is that it's a 3 day a week schedule. I have class all day Tuesday, a wednesday night class, and all day Thursday. That gives me 4 consecutive days with which to work and get shit done. Who knows, maybe I can even get a job. How awesome would that be?! I'm sooooo excited!!!!

My only concern is that the lady who registered for me didn't specify which professor I have for my Martyrdom class. I like both profs who are teaching it, but I already have Cooey for Theory and Method, so I'm hoping that I'm registered for Martyrdom with Drake, because having two classes with Cooey would be killer; advisor or not, she's a tough prof, especially with the amount of writing she assigned for Love and Death last semester. Anyway, regardless, I'm excited. Especially since I got into the Buddhism class... *sigh* yay.... Ok, tell me to snap out of it, seriously.

So that's the update on my class schedule for next year! Yay! Now Shawn and I just need to get a house. Shawn says he called the realtor and told her to put it on "the back burner" because my "health concerns are more important than a house right now". Well, be that as it may, I'm sick of living in my parent's basement, and now that I am registered for classes in the fall, I want a place to live, damnit! Oh well, I guess we need to slow down and take it one step at a time.

Anyway, if anyone reads this, thanks for reading, and putting up with my rollercoaster personality. One minute I'll be bitching and moaning about my brain, relationship, and friendship issues, and the next I'll be screaming and jumping up and down over a couple classes. Thanks for listening, and I'm sure I'll post again later today, I have a few more things I want to talk about, I just need to find the words.

My F*ed Up Brain: Part 5

Part 5 of the Saga: Last Night's Incident.

So yesterday, I had a few minor episodes of lightheadedness, the mild headache, but nothing to be worried about. Then yesterday evening, Shawn and I were headed home from the grocery store and the more severe kind occurred, with the need to stabilize myself and I could feel my pulse in my fingertips. I started to cry, because I cry a lot, especially when this sort of thing happens because I still haven't figured out why or what's causing it. It's freaking me out. But, we get home, and I'm fine. We have dinner and continue on our merry way.

Later, at about 8:30, I'm in my room, and it happens again. I'm really freaked out, so I go upstairs where Shawn and my Mom are in the living room. I sit with them and cry a little, wait for it to go away, and return to my room. It's odd that it happened more than once in a day, especially after it had been so good for a few weeks.

Finally, about 9:30 or 10, I'm watching a movie (the Italian Job, I highly recommend it), and I feel lightheaded again, but this was the worst it had been in a long time. I was just about to go find Shawn when he came downstairs. I told him about it, and I'm crying by now of course, because I'm scared and freaked out and I don't know why this keeps happening. 3 times in one day is not normal, even for me. This episode was the worst of them all- it was more severe, I felt like I was going to be sick to my stomach (although that may have been from the crying), and I felt throbby and lightheaded for several minutes. Shawn ran upstairs and woke up my parents, who came down to see what was wrong. From what they tell me, everything that happened last night was the same as when I was having seizures in the hospital, except that I remember it clearly, and there was no obvious twitching involved. My eyes were wide open, pupils dilated, I was scared and confused, crying, "I don't feel good" "my head feels funny" "I can't explain it" and so on and so forth. After half an hour of discussion, we determined it was not necessary to rush me to the nearest ER, (thank God, I'm sick of doctors), but instead wait until morning and then call the Mayo.

Shawn and my Dad got up early and called, but my main doctor is out all week, so we left several messages and have been waiting for someone to return our calls. My dad is hoping to get me an appointment in the next few days, if at all possible. Hopefully, we'll be able to get this all figured out, and I will be well and healthy again.

- Update- I have several appointments at the Mayo later this week. I have an MRI scheduled for Wednesday afternoon, an EEG Thursday morning, and a check up and follow up with a doctor Thursday afternoon. Turns out the one week that I have issues is the week that almost the whole neurology department is gone at some conference, just my luck eh? Anyway, it should be an interesting experience. Wish me luck!

My F*ed Up Brain: Part 4

Ugh. I hate this. It's never ending. Let me do my best to keep you informed.

Part 4 of the Saga: St. Cloud Doctor Visit.

Ok, so for a couple months, I've been feeling much much better, but at the same time, I've been getting really lightheaded. I feel lightheaded and feel like I need to sit down or stabilize myself. Sometimes I feel throbbing sensations in my hands and legs, as though I can feel my pulse through my fingers. This situation usually passes within a few minutes, and I have noticed a correlation between external stimuli and this reaction. For example, if I am in a place with a lot of conflicting noises, lots of visual stimuli such as lights or shiny things, or if I'm highly emotional or stressed, this is more likely to happen to me. So, after dealing with this for quite awhile, Shawn and I made a doctor's appointment with my family doctor in St. Cloud.

Of course, as soon as we make the appointment, my symptoms lessen, and the throbbing lightheadedness happens much less frequently. Most of the time it is reduced to nothing more than a mild headache and bit of lightheadedness that passes within a minute. So anyway, I go to the doctor and explain everything, pretty much exactly as I have explained it here. Shawn and I thought that maybe it was a side effect of my meds, but the doctor didn't think that was likely, considering I had already been on my meds for at least a month or two before any of this started happening. His theory was that it was simply a psychological reaction to stress. He said there was a tiny possibility of my electrolyte levels being screwed up, because that happens occasionally to people with severe head trauma or people who have been in comas, but that was highly unlikely. Nonetheless, he ran a blood test just in case. Well, it turns out my electrolyte levels were normal, except that my blood sugar was low. Normally, this would not be a problem, but considering I had eaten a good breakfast (eggs, toast, and juice) 2 hours prior to my appointment, it was a little confusing. The doctor told me to eat more frequently and make sure I'm getting enough complex carbohydrates in my system.

Now, my assumption is that the doctor assumes that the lightheadedness is caused by the low blood sugar, which I deem highly unlikely. I have had blood sugar issues my whole life. I know what it feels like when I have low blood sugar, my brain automatically kicks in and says "you need to eat, now" and I do. And I can tell you, the lightheadedness associated with low blood sugar is a very different kind of lightheadedness than I have been experiencing lately. So, that in mind, the visit to St. Cloud did little or nothing to help.

Torn

The loneliness,
The desperation,
is overwhelming.
I can't do it anymore.
I can't take it.
I can't suppress the tears.

I am alone.
It's tearing me apart.
I know not who I am,
at least not all of me.

There are moments
throughout every day
when I see that other person
and I feel torn in two,
and I don't know or understand
what's happening to me.

What is happening to me?
Why does my head feel so strange?
Why do I feel so emotional?
Who is this other person,
this other part of myself
that I know
and understand
but cannot grasp
and cannot recognize?

She is there
barely beyond my reach.
I am scared
because I do not know her,
and I do not trust her,
but I know that I must
discover her
in order to feel complete,
in order to feel whole again.

I am scared,
but I cannot change my course
I must know what this is.
And every time it happens
I try and discover the truth
but it always slips away,
and I am left with only myself,
frustrated and confused,
and lonely again.

My F*ed Up Brain: Part 3

April 3rd, 2009: Frustrations with Forgetting.

In the last 3 months, I've realized that the memory loss I sustained during my illness is more extensive than I had previously imagined. I woke up in the hospital around Christmas and realized I had forgotten at least a month's worth of time- completely erased, blank slate, no idea what happened. In the time since then, I've realized and learned that my memory loss goes way further back than that, in fact, I dont really know how far back it goes, because by the time I start remembering things again, I don't know whether I've forgotten them because of my illness, or whether I've forgotten them simply because it was a long time ago (my memory has never been great to start with).

My favorite way of explaining the situation is this: Videos are made up of millions of still photographs moving in quick succession. Of the video of my life from 2008, I have a few handfuls of photos as well as several small video clips, audio not included. The memory I have is entirely visual and emotional. The entire soundtrack to my life in 2008 is gone. As far as emotional memory, I know things, and I know how I feel about things without remembering the specific things themselves. For example: I have a book. I know that I read the book. I even know which class I read the book for, but I can't remember what the book is about. I can't remember reading, writing about, or discussing the book. If I re-read the book, it is still as surprising as the first time, but throughout it all, I still know that I liked the book.

In short, I know things without knowing how I know them. I don't know things that I know I should know. I'm constantly trying to remember things, and in doing so, I look for similarities or familiarity where there is none. I go through an area where I know things should be familiar and they're not. It's intensely frustrating.

I don't REMEMBER much of the last year of my life. That doesn't mean I can't tell you about it, but it does mean that I can only tell you what I myself have been told. I have re-learned a lot of things. My fiance tells me things, tells me how my life was. My parents tell me things, and my friends tell me things. I have pictures and diary entries and facebook posts of things that I did, but just because I have re-learned them enough to pass on the information, it doesn't mean that I actually remember. For all I know, my friends and family could have completely falsified all the information I've been told over the last 3 months, and I wouldn't know any better, but I trust, because they love me, that that's not the case.

Now for the frustrating part. I try and explain things to people, as I have just done. I have frequent conversations about the experience of losing one's memory. The truth is though, that it is impossible to understand unless you've experienced it. Amnesia isn't the same sort of memory loss as just forgetting something because it was a long time ago. If you forgot an event because it was 5 years ago, and someone tells you about it, you're likely going to recall it after some prompting, or have a vague memory of it, or even just remember that it was true without having memory of the event itself. Amnesia is different. If my fiance tells me I did something, I have to trust him. Most of the time, there is no partial recall, no prompting, no vague memory, no underlying truth. It's just plain gone. Sometimes, on a rare occasion, there will be a little bit of memory, a detail, or a still picture that pops into mind. For example: he told me that we bought new furniture in September, right before the bedbug stuff happened. With that bit of prompting, I knew it was brown, and I could almost picture it in my head. That tiny bit of memory was still there, but I never would have discovered it on my own. Scenarios like that used to happen quite a bit actually, and then I got used to it. I started assuming that things would all be like that, and if I asked enough questions, I could remember stuff eventually. I was wrong. A lot of things are just plain gone, and no amount of prompting will bring them back.

Sometimes people ask me if I would want to remember. From the sounds of it, my life wasn't in the greatest shape anyway, and I was pretty unhappy. Between the bedbug and apartment fiasco, and schoolwork kicking my ass, as well as trying to maintain a long-distance-relationship under all that stress, people ask if I want to remember. That's one of the most frustrating things. YES, I want to remember. Just because something was hard doesn't mean that erasing it is going to be any easier. In fact, knowing all that I dealt with and knowing now that I "get off easy" by not having to deal with it, doesn't make things better, it makes it worse. It even makes me feel guilty that I'm "lucky" enough to not remember.

But what these same people don't understand is that amnesia is not some sort of happy oblivion. You don't wake up and go about your life believing that it's the same day over and over and over again (think of the movie 50 First Dates). You don't wake up and have people treat you the same way as they did when you fell asleep. It's not like starting over. It's not like going backwards and getting to redo things. It's not like that at all.

I had one friend, who's own life has been notoriously difficult, once tell me that I had the "luxury of forgetting". Let me tell you something, forgetting is not a luxury. It is not getting to start over. It's not getting to pick up where you left off. It's not getting a second chance. It's not getting a blank slate. Everyone around you, everything around you, has moved on. Everything has changed. People have changed. People's opinions have changed. Things have changed. The world has changed. You have changed. Amnesia isn't going back in time and getting to relive things and relearn things and redo things that you messed up- it's waking up and being completely and totally terrified. It's having no idea where you are, when you are, what things are going on around you. It's having zero knowledge of what you've done, or where you've been, or how long you've been out of it. It's waking up surrounded by a fog; you're completely encased in uncertainty and fear.

Luckily for me, I have re-learned most of my life. Between my family and friends telling me things, the still pictures I have in my head, and the underlying instinctual and emotional knowledge I have of some facts, I have pieced together my life in the year 2008. Some days, things still catch me off guard, but for the most part, I'm fine. The hardest part is trying to explain to people what it's like to not remember. Trying to explain to people that it's not a "clean slate" a "do-over" or a "luxury". It's just plain gone.

My F*ed Up Brain: Part 2

Written by me January 16th, after my first follow-up appointment at the Mayo:

All right, well, pretty much everyone knows the story, but here's the latest news.

Medically: I am doing very well. As was mentioned in my previous note(s), I spent a week in the local hospital, a week in the Mayo, and did 5 days of outpatient IV treatments at home. I am still doing those once a week, and yesterday I had a follow-up appointment at the Mayo, where I was informed that my bloodwork came back totally normal, my EEG (brainwave stuff) seemed normal, but we're still waiting for results. Basically, I have not had any more seizures and my memory has been improving daily since the 30th when I was discharged from the Mayo. So, on that note, I'm doing very well, and very little permanent damage done.I say very little because the more I talk to people and the more I learn, the more I realize how much of my life has been erased. When I said before that I remember nothing between thanksgiving and christmas, I'm beginning to realize that I forgot most of last fall, not just from thanksgiving onward. I don't remember my birthday, or voting, or halloween. I knew and was not surprised that my fiance and I live in a different apartment then we did this summer, but I have no recollection of actually moving stuff in october. I have looked at my school stuff- books and papers- and don't remember any of it, except that I can point out which books I read for which classes and I remember the very first book I read all semester, but I can't tell you what it's about. I recently re-read a book that I remember that I liked, but I continued to be surprised at the end as much as I was the first time I read it. At the very least, october, november, and december are gone. All spring and summer are sketchy. I'm still really emotional, overwhelmed, and stressed.

Bedbug Bullshit:

This summer we had bedbugs in our lovely (note the sarcasm) apartment. I had red itchy welts all summer that we thought were some sort of allergic reaction, but after I left for school, my fiance discovered that we had an infestation of bedbugs in our apartment. We quarantined everything for 6 weeks while it was "treated" only to find more LIVING bugs at the end of that time. We re-quarantined everything for another 6 weeks for another treatment, in the meantime moving into another apartment in the same complex. When I got out of the hospital at the end of December, the 6 weeks were up, and we moved all our stuff from the old apartment to the new one. Then, this past Wednesday, I told my fiance I was feeling itchy, and it was probably just from the freezing winter weather and dry skin, but nonetheless we examined our bedroom.... only to find another bedbug, alive. The whole situation is ridiculous. Clearly, whatever they did, twice before, to "treat" and rid the apartment(s) of bedbugs didn't work. So we approached management, informed them of the problem, and they let us out of our lease. For the past three days and for an unknown period of time to come, we are living with my parents. We are throwing out most of our furniture because it's not worth the risk of bringing bugs with us anywhere else we go, and our clothes and belongings can be treated with heat/cold/and chemicals, depending on the item. Current and Future Plans: Like I said, we're temporarily living with my parents. My fiance and I are both taking this semester off of school in order to re-group and get our lives back in order. He is still working every day, hopefully full-time now that he's not in school. I have officially taken a leave of absence from school, due to medical stuff, and fully intend on heading back in September. He also intends on returning to school in the fall. Various plans for school and living situations are being discussed and considered, both locally and the Cities, but nothing is certain, and for now we're just worried about getting all our stuff out of the buggy apartment by Monday and getting paperwork done.

In short: Life has been pretty rough, but things are looking up *knock on wood* and we appreciate all the support we've gotten from friends and family. Thanks!

My F*ed up Brain

Today is January 4th, and I’m sure you all have read about my situation or have heard through family and friends what has been going on with me for almost a month now. I figured now that I am up and capable, I should share what it’s been like for me, and it hasn’t been easy.

For starters, I don’t remember anything from around Thanksgiving until Christmas Eve, and from then until now my memory has improved steadily until I feel almost completely normal. However, it is unlikely that I will ever regain memory of this 3 week time-frame; it has simply been erased from my brain.

As you probably know, the medical story is this: I finished finals at school and moved home, living in my apartment with my fiance. At the time, I had the flu, or at least some generic flu-like virus. After about a week, I started losing bits of my memory, and having anxiety attacks, confusion, and hallucinations. One day, I had a seizure in our apartment, my fiance called 911, and I was rushed to the ER. I spent a week in the local hospital, and then transferred to St. Mary’s in Rochester, aka, the Mayo. I was diagnosed with “Limbic Encephalitis” which means that my brain was inflamed, causing the seizures and memory loss. The most common cause of this is cancer, but thankfully, all cancer screenings came back negative. The best theory the doctors have as to what caused my condition is that the flu that I had shared some antibodies with my brain, and when my immune system fought the flu, it also began to attack my brain because of these shared antibodies. There is no proof that this is true, but it is the most likely theory, and from what has been explained to me, it makes sense. Anyway, they put me on lots of meds, steroids to control the inflammation of my brain and anti-seizure meds, and began to flush the antibodies from my system using IV treatments. I was discharged from the Mayo on the 30th, did five days of IV treatments at home, and from now on will have various follow-up appointments and treatments for several months. I remain on anti-seizure meds for several months and am not allowed to drive. Close supervision is recommended for the first week or two to make sure I am capable of caring for myself and not burning the house down.

So that’s the medical story. The truth is that a month of my life is gone- wiped from my memory completely and unlikely to return. All memories from this summer and fall are sketchy, and may or may not return with prompting. I know that I finished my classes and finals at school, but do not recollect anything I read, learned, or wrote during that time period. I have tried reading papers or books that I know I read during my classes, but the information I learned from them is gone. Geographical information is also slightly off- I occasionally don’t remember where something is or can’t picture how something looks in my head- although this gets better every day. My job that I had over the summer closed, and I have no recollection of either asking to return (of which I did, and then I was informed that they were closing) or of the business closing. Luckily, long term memories don’t seem to be affected; I still know people’s names, birthdays, and things that have been in my life for more than a year. I’m still hopeful that some memories from this fall will return with time.

It has been a strange and surreal experience to wake up in a hospital after 3 weeks and not have any memory of that time, or of the medical conditions such as seizures. What I do know is that I have an immense support system of friends and family who have demonstrated every day how much I am loved and cared for, and that means more to me than anyone can ever know. My parents and fiance never left my side during my hospital stay, my relatives and friends all came to visit (whether I remember them or not, I know they were there), and I received cards, well-wishes, and prayers from friends and strangers. I may not remember the last month of my life, but I do know that I was well cared for and very much loved.

What I know now is that I have more medical things to follow through with, I’m not allowed to drive myself anywhere for six months, and I will almost certainly not be returning this coming semester for school- it’s just too soon and too much to handle. I still have headaches, dizzy spells, and parts of my memory may be gone forever. I will continue living with my fiance, hopefully find a job, and work on getting my life (both medical and emotional) back on track for the next several months.

Although I don’t remember what has happened, and I don’t know what will happen, I do know that I have never felt more loved than I do now. I thank everyone for their thoughts and support, and I hope to keep in touch with all of you in the future. Thank you for everything, and I wish all of you a happy new year.