Journal Entry?

Warning: This post is like a journal entry and it mostly deals with pain (gonna turn the comments off on this one, hehe, I feel like it's a begging for sympathy post! but thanks for reading of course, I really appreciate all the visits and comments!). It does me a world of good getting stuff like this off my chest.

My head feels like it's been in a vise the past two days.

The back of my head has felt particularly painful, but even the rest of my head is hurting, like someone jacked up the pressure in there by hundreds of psi.

Fortunately, in the midst of this crazy headache, I have the luck of already having a doctor's appointment scheduled.

But man, the other night was really horrendous. The pain was so bad, the pain made sleep impossible for a while, but I finally got to bed around 3 in the morning. Unfortunately the pain ratcheted up a couple notches at 6am, enough to force me awake. I got an icepack out of the freezer and I lay my head down on the ice (a measure I've had to take all too often through the course of this past year). The pain was really smothering. The seeming infiniteness of this illness, the seeming eternity of it, somehow the pain took on those characteristics, and made me feel like I was choking, struggling to breath, struggling to keep my head and mind from getting crushed.

Obviously my spirit felt like shit at that moment. One of the most frightening kinds of pain is the pain that keeps you awake. Pain located in your leg or back is already bad enough, but for your head to be the source of the pain is the worst, at least for me it is. It is a pain that infuriates beyond belief, scares your soul and twists all your thoughts into thoughts of despair and death. It’s like a hell within your mind.

Lying in my bed, trying to outwait the ceaseless pain. I felt like I was reliving all those sleepless nights I’d experienced months ago, when similar bouts of pain had kept me awake, forced to contemplate the night’s darkness, night after night, against my will. I just want a respite from the pain I've already experienced all day, just for a moment. But sleep eludes. And the blank darkness is awful, it's an empty canvas where visions of my fears materialize, fears of sickness and death, fears of never recovering.

Pain during the day is sufferable. Pain in my head, at night, in the darkness? It’s probably the thing I fear the most. The sheer terror of it. Your mind is free, but the pain, and the darkness, both give monsterous qualities to all your thoughts. I'm too tired and experiencing too much pain to distract myself, unable to focus on the computer, unable to focus on the weird infomercials on tv, unable to read, unable to talk to someone. It’s very intense. The darkness. The solitude of the night. And the pain. But sometimes it isn’t even really about the pain. Sometimes the pain in itself doesn’t matter, The pain is just bullshit. But the pain, not the pain itself but what it means. Right? I dunno. The fact that there is such pain, that I can't escape it, it just seems to chop away all the progress my body has achieved. It effortlessly wipes away all my hopes and aspirations, and makes me feel like I will never be myself again. That is the worst part of the pain, the ease with which it erases my progress, my strength, and it doesn't even have to try, it just does it.

And I never see the pain coming. It must be stalking me, waiting for me to ease up and forget about the previous attack it plastered me with, waiting for me to start thinking it might not come back. That's when it strikes again. Right when I think I've rid myself of that beast.

Yeah. I’m looking back at that sleepless night, it was just the other day, but it feels like an eternity ago. I’ve recovered my confidence. I know I talked about fear and my fears, but to tell you the truth, I'm a much stronger person now. At this point of my life. I am not fearful, only in those unlucky moments of terrible pain, where I've had a burning headache for days on end, very few hours of sleep, yes, that is when I get broken down and my fears gain a tighter grip around my throat. But I make it through those moments. I always make it through. The pain always fizzles out.

Sometimes I think I should just ask for pain medecine. But that stuff is a can of worms.

Right now my head isn't hurting very much, still aching, but not painfully so. That other night was really horrible, just brought back a flood of hated memories, I sort of thought I was safe from the pain. A night like that, with ceaseless pain, like so many of those other painful nights, it shakes my confidence to the core, but only for a moment.

I hate how in those nights of pain all my dreams just vanish, my dreams of health, of working, of exercising again, they all disappear. It's hard to handle that feeling of loss, feeling that health is just a cruel illusion that I'm ceaselessly chasing, always coming up short. For no explainable reason. Makes me think of Tantalus.

To be honest, I could live with disabilities, I know I could. But if I were going to be disabled, I’d like to have clear knowledge of what I could be able to do and what I couldn’t. Parameters. Like, if I was injured in a car accident and could never walk again, I could deal with that, so long as I was told I’d probably never be able to walk again. My mind wouldn’t waste its time on dreams that were impossible, I’d focus on reality and accomplishing whatever I could with whatever abilities I had left. Well, you don't get to choose these things in life, but life is life, I fucking love it, in sickness or in health, but it's a weird thing, it can lead you down paths you'd never have imagined, that's for damn sure. And I guess my path is just filled with a hell of a lot of jumping cholla at the moment. Maybe Vegas is coming up soon.

But seriously, my prospects are good. And I know it. And that’s what makes these setbacks more difficult. It's frustrating because I feel so close, I feel like I'm on the cusp of regaining my abilities... but it’s when I have those killer headaches that last for days and days and days, it’s during those times that I feel as far away as I ever have from regaining my former abilities.

I know this all sounds depressing, but I’m just describing how I felt as I experienced the pain. In reality, I've really been upbeat lately, I've focused on my improvement, I sort of feel like things are trending upwards.

I mentioned a doctor's appointment earlier. Saw the doctor yesterday. Although I was still in the throes of this pain, I wanted to let my doctor know that I felt I was making progress with my condition. I'm still very limited, considering the fact that leaving the house is still difficult for me, that living any semblance of a real life is still daunting due to the fatigue, but those things being acknowledged, I’d be a fool to deny the big time improvement I’ve had in my condition.

The main improvement is that my mind feels a lot sharper, more alive, I'm getting lots of ideas and just feeling more creative, more like my real self, I can talk with people and not feel like I'm going to pass out. And as you have probably noticed, I talk a lot more about reading, my thoughts, I tend to write more in my posts, I tend to be a little more descriptive or what have you. I think these are all good signs.

Anyways, this time, even though the headaches somewhat traumatized my psyche, I couldn't help but feel that they were an aberration. Things are trending upward, I tried to keep telling myself. And I told the doctor how I felt these headaches I was currently experiencing seemed like an aberration, the symptoms inexplicably different from the burning headaches I was living through several months ago.

This part is what I consider the good news. The doc checked me out and it turns out I'm congested, so he said I probably had caught a cold or virus or something. Something on top of my initial illness. This is actually a big time relief. My initial illness is not setting off these terrible headaches and symptoms, they were triggered by this other thing I just caught. I didn't realize I had anything else, my symptoms are so similar to the ones I've experienced throughout this past year that I wouldn't have guessed something else was helping to cause the pain.

Thankfully he prescribed me this antihistamine thingy which has really kicked the pressure down a couple notches and really helped with the head pain. And I appreciated the conversation I had with him, he told me he was optimistic, he was very optimistic I would recover. He mentioned how he had read about several viruses, viruses he’d never heard of, but he thought they might be what was affecting me. He said my EBV levels were up, but I ventured a guess that those could be up because of those other viruses. Yup. It's a possibility. Anyways, there’s nothing to do about those other viruses either. Except to wait. Be patient, not be stressed, and focus on getting sleep so my body can recover.

Here's what I say to myself: I will never concede to this illness. I might have more pain coming my way, but I love life too much to not outlast and beat this thing.

Props to you if you read this whole thing!

Firefox Should Die (Not the Animal! I Love the Animal!), and a Recommendation of How Not to Get on My Bad Side

Pictured above is a firefox, never would I mean for this kind and cute and cuddly little creature to be harmed (I love this creature, I have posted about it before because it is so awesome). Firefox the browser, on the other hand, should be severely beaten. For some reason Firefox automatically uploaded the latest version of Firefox and totally wiped out all my bookmarks. Normally I wouldn't care, hell, I've never cared about bookmarks or anything computer related before in my life, except now that I've started reading blogs. The only way I keep track of blogs is by bookmarking them. Plus all the cool art and art sites I've found, I had all those bookmarked too. Oh well, I think I have the fortitude of spirit to overcome this tragedy... but probably just barely.

Quick and Easy Way to Get on My Bad Side: Tell Me I'm Faking My Illness

There aren't too many things that anger me. Really, I'm actually a pretty laid back kinda person. There is one thing that really angers me though, and it happened the other day, multiple times. This incident usually angers me so much I sink into silence and the only sound I can muster is a short, lackadaisical, uneasy sort of laugh. This of course, is my standard response to anyone who makes a joke of me looking good, haha, I look so good I'm probably faking my illness, haha... Shit, you think that's funny? My mouth might be smiling because it's all I can do to restrain the logical reaction, which the crazy look in my eye probably hints at...

Seriously, I can't understand how making a joke of me faking my illness would be funny. That joke really hurts me, my illness is for real, I have the bloodwork to prove it, doctors to prove it... I guess it's just so demeaning, and really disrespectful, even if it is a joke... I mean, it feels like it negates all the bullshit I've gone through, all the pain and fatigue, sort of like calling me a bullshitter and a lazy bastard all in one. I wish I wasn't so sensitive about it, but I'm already frustrated by my circumstances, and people making jokes like that is like grabbing the knife that was already in me and twisting it just so. I really can't wait to be completely better, so that I don't have to hear jokes like that. People can be such assholes to people who are sick, and I try not to let it bother me too much, but it's easy to say that, hell, it does bother me, any way you slice it.

Yet this story isn't about unrequited wrongs, the story ends in a nice way. Hooray!

In a way, it's fortunate, this last person that made the joke is a pretty good friend, and I didn't want to hold this against him. So I ended up emailing him after a couple days letting him know how his joking about my faking my illness had hurt me. He was really sorry, in a very sincere sort of way, and I know he meant no disrespect, he's very supportive of me as a person and of my work as an artist, he knows firsthand that I'm not a lazy person... He's also a person I have a lot of admiration and respect for. That is why I thought it was important that I let him know how I felt, I had a feeling he'd understand and would make sure not to drop that joke on me again.

Moral is: Never, ever make a joke to a sick person about how they are faking their illness. Sure, life ain't all black and white, some unscrupulous people lie about being sick, I realize that possibility, but your safest bet is to not make that joke. I bet that more likely than not a sick person really is sick, so you're probably gambling on losing percentages when you make a joke like that. Plus most people aren't as kind as I am and would probably have ripped your throat out for that kind of joke... just sayin'.

Deja Vu? I Talk About Boring Stuff Like How I Feel... Again

Quick note: I turned off comments on this post, sometimes I think I'll do this, on these sort of journal entry posts (not that I don't love all your wonderful comments, I just thought it might be good to nix it on this, you guys have already given me so many encouraging comments on my situation, and these sorts of posts are a little repetitive, and it's not like I leave you with much to say except things like good luck or damn that sucks or you should go smoke some crack you'll feel like God).

I wrote this earlier today. I was feeling frustrated... This is sort of like a journal entry, but I spiced it up in my editing phase, where I added a couple psychotic visions. I thought you'd appreciate that, or, maybe the terrible, murderous, psychotic visions I included in this post will just scare you and you will cry because you can't handle their intensity. Well, read on if you dare...

So... this post delves deeply into Sebastien's psychology (always refer to yourself in the 3rd person, adds a scary that guy must be crazy factor to your personality!). Anyways, I am optimistic most of the time, but I do have moments and times where I feel sooooo trapped in by my body, ahhhhhh, maybe I just need chocolate! I'm like, so incoherent today, you'd think I got so high I forgot 2+2. uh, =4. Shit, what??

Eh, sorry, I haven't slept well these past couple days, sometimes I go through these periods where it's very difficult being positive about my situation, I kinda get claustraphobic of being in a body that's always sick, it's so frustrating, I sort of feel like my body is choking me from the inside out. I was telling my sister that when I feel like this, it reminds me of this play I read where these people are stuck in a room for eternity! Although my existential crisis isn't quite that bad, the room in that story is equivalent to my body... Awww, pity me, just kidding, I'll make it through this BS, but man, my body does feel like it's own prison, I'm locked in with balls and chains. Well, at least my torturers are on strike or something, you know, because those headaches have really calmed down. I just hope the government doesn't start paying the torturers again, I don't want them to get back to work inside the back of my head to whip up those nasty headaches, those bitches!

My situation kind of makes me think of the myth of Sisyphus, anytime I think I'm making progress I get kicked back down a couple notches. That's why I keep my opium pipe nearby, sweet sweet comfort, I love drifting off into a land where the skies are full of floating elephants who are diligently working on their novels on their laptops which are plugged into clouds for energy while down below on dry land the void is filled with the voices of opera singing tigers, who get carrot bullets thrown into them by demonic rabies crazed rabbits (those bastard bunnies hate music!)... yet there is one true good guy to fight all this evil, the one who will deliver everyone from these evil bunnies, this, of course, would be Rocky the Raccoon. And yes, I will be drawing this scenario one of these days. And yes, my imagination (or is that insanity, fine line I suppose) has grown leaps and bounds, you can thank my illness for that. Or maybe the craziness was always there, and only now have I been able to tap into that. Chicken or the egg, who knows...

Here's one of the most difficult things, and I think all of you who are battling health conditions or illnesses will understand this: I've always had faith in my body, I could always trust it to be there, to allow me to work hard, to get better from colds and viruses, I could always count on feeling well enough to do fun things, be active, ride my bike, see friends. Now that my body has been nailed so badly and hasn't yet recovered, I feel that all the trust I had, in a body I thought so dependable and strong, well, it's vanished, or at least been shattered into lots of tiny pieces.

Now, my faith and trust aren't completely destroyed, and although the faith I used to have in my body has taken a hard hit, the faith I have in my mind is very strong. Yes, there are times where my confidence is shaky, but my mind is surfing on this wave of badness, although I still get hit with bouts of worry and fear, my mind can usually overcome those periods of worry.

But one thing that has to happen, especially for me to regain confidence in my physical self, is that my body needs to prove to me that I can trust it again, it needs to prove to me that it won't hurt me every day with headaches, it needs to let me do things before I can establish any sort of trust and confidence again. In a sense, my body's failure and collapse makes me feel like I've been cheated on, by my own body! sort of like when you realize someone you have great admiration for is actually just a complete mirage, a mixture of illusions and fancy stories, just a big fat fake you can't even count on. Yeah, I'm being dramatic, and I know the only way to get out of this whole illness thingy is to believe so strongly and deeply that my mind will lead my body out of the gutter, and I truly do believe it... I feel like it's my destiny to beat this thing, sort of like those people who believe in the endless progress of humanity, well, I believe in my endless progress against this illness, but you know, you get down sometimes, you get into existential crisis mode (damnit, that's probably the French in me, stupid existential writers making me realize the absurdity of life and everything like that, illogical craziness, but there's faith in family, friends, and the spiritual to get you out of the postmodern bullshit of things). Anyways, I'm still in the trenches with this thing, and like any good fight, there's ups and downs, good moments and bad... this illness, which is so sneaky and devious, this illness which can't even show itself to fight mano a mano, well it floats like a butterfly and stings like a bee, but this illness isn't as cool or as strong as Ali, and it does not have the qualities of being eternal and insurmountable, it just feels that way at times.

Don't worry, I really am ok. I'm sorry to write some of this stuff, it makes me feel stupid, but at the same time I think it's good for me to not only show my optimistic side, but also my frustration. It's not all roses, I'm not skipping through this period of my life with carefree glee you could say...

All that being said, I'm happy, I'm lucky, things can always be worse (thanks to the friend who pointed out to me things can always be better, haha, that didn't help!). But you know, bad things build character I suppose, isn't that what Calvin's dad (from Calvin and Hobbes) always said? I hope I have lots of character after this, hehe...

Health Update and a Little Bit of Looking Back

Sorry, this is kinda long...

So, my main idea I had when I started this blog was I didn't want to talk about my illness (epstein-barr virus). I wanted to focus on other things, mostly because this illness racked me with constant worries (for the longest time the doctors couldn't figure out what I had, I was scared I had some disease that was going to kill me!) and also crazy ass pain (the pain in my head was sickeningly bad, it felt like little monsters were slowly eating away at my brain!)... well, this illness was all I could think about, mostly because the pain made it so hard to forget how sick and ill I was. I just remember googling this illness, or googling my symptoms, just praying I could find a magic cure or something. Haha, boy was I wrong, I ended up dying of stress with the shit I read: I'd think to myself, holy shit, I have that crazy ass illness, or I'd start thinking I had cancer, or a brain tumor, or a hundred other illnesses... I'd start sweating, and I mean really panicking, holy shit, holy shit, and I'd start pacing back and forth, I became convinced I was going to die (relatively soon that is), or I'd start worrying that my illness would morph into another illness or trigger something else (yes, it can actually, I just don't think about that anymore, I have no control over that), plain and simple I just thought I'd never be healthy again, or productive or anything. The stress certainly didn't help my symptoms, but I guess that's where acceptance comes in, and I just came to understand that things are the way they are, I came to the daunting realization that my death is a certainty, nothing is promised in life (hell, I just learned to be thankful to be alive, even if I was in pain and couldn't do anything, lots of people have died young, or suffered tragedies, I was lucky, I was still alive!), but I realized the only way I could get through this was to do my best, try and stay as mentally strong as I could, no matter the pain or whatever the damn circumstances. I think that's why I also watched a lot of sports, there was an element of never quitting, of really fighting, tooth and nail, that was something I really respected in great athletes that I tried to adopt in my own mentality. I hope I'm not coming off as dramatic or whatever, I'm just trying to explain how I felt, how I tried to make it through the most difficult days... The only person who could help me at the most terrible moments (not to discount all the support I've gotten from family or friends), well of course it was only myself. Only through faith and hope could I keep strong, and not fall apart and want to kill myself (trust me, this was never an option!) or just bash my head in the wall, or just fall into the deepest darkest depression over my physical pain and circumstances.

Blogging, even when in pain, really has helped me focus my mind on other things, even through some terrible I feel like crying this pain is so bad moments. Well, I won't lie, when the headaches were so bad and constant, and didn't let me sleep for days on end, I did cry!!! That was the only relief I could get!

I know it's not the best thing to be on the computer so much, but the vastness of the internet has really given me a new kind of liberty, which has been so refreshing because my illness has smothered my physical liberties so drastically.

I have talked about this illness from time to time, but lately it's been on a more positive note. Things really are getting better for me, my symptoms, ie headaches, painful lymph nodes, fatigue, are all diminishing, my mind feels so much more alive, I feel like a person again. I still have ups and downs, and I'm still tired a lot, but the best part is the headaches are so much less, so so so much less, I feel so thankful. Finally being spared of constant pain in my freakin' head, sometimes I don't know how I made it through... I thought I'd never make it through this nightmare, the lowest point was when I had to go to the ER because I just couldn't sleep, the headaches were like fire in the back of my head, they were constant and at such a high pain level, my body couldn't relax, these severe headaches could last for weeks, at the ER they gave me caffeine and morphine... I hate the thought of taking drugs. The mere thought of having to constantly take pain pills to survive through this thing, that scared the hell out of me. I tried to suffer through the most wicked pain, I never asked the doctor for pain pills, I just didn't want to cross that line (maybe that wasn't the right decision, I really don't know). I probably could have saved myself a lot of pain and stress, but I knew it was a risk, I didn't want to start taking things I'd become dependent on. That whole period, where I seriously thought I needed pain pills just to get through the days because of wicked headaches, that was the lowest low, the worst time in my life, everything felt so out of control, the pain in my head was out of control, I couldn't work a job (well, I still can't but I know I'm getting there), I couldn't even begin to imagine doing a little drawing, I just felt so damn screwed, like... It's hard not being able to work, not being able to validate yourself through daily activities, I was stuck, and I didn't even feel well enough to think, or imagine, or do anything. I'd spent my whole life working, learning, doing things, validating myself through activities... I guess not having that for a year forces you to learn about yourself, who you are, what you truly believe in...

Not sure I have much of a point with this post, I just feel that for myself it's a good time to express my thoughts, since my symptoms are so much less, I have a little bit more perspective on this whole thing... and I feel like it's important to give you guys a bit more information on who I am, what I'm going through...

But know this, I'm thankful for everything. I really am. I am lucky, I'm surrounded by wonderful people, somehow I haven't been overtaken by pessimism, anger, bitterness, on the contrary, I feel more happy, more joyous than I ever have in my whole life. Wait a sec, sorry, that's a little too glossed over... I'm still scared (less so though), and do still harbor some anger towards the people who doubted me, implied I was lazy, discounted my pain... Let's just say there was a reason I wanted to name our dog Rambo! But I'm not that angry, I try not to waste too much of my time on that emotion, it's worse than a cancer if you let it consume you.

This is a bit similar to a previous post I did, I know I repeat myself sometimes...

Anyways, I hope this post doesn't come across as condescending, or look at how great I am, or give me your pity, or whatever... I just feel it's good to open up sometimes... I've had a lot of moments where I was weak and scared, and I guess I'm just happy I'm making it through this thing, I guess I'm sort of incredulous that things are getting better.

I'm Going to Be Candid With You, This Is About Memories and Illness (yawn, booorrriiinnnggg)

I've never been a nostalgic person, but being ill has certainly changed that a bit. There are times where my mind just wanders, where it haphazardly zeroes in on some past memories. These memories play out in my mind (uh, like where else are they gonna play out!), sometimes the memories are slightly edited (like that memory where I walk into a restaurant and get revenge on 15 mafioso types and crooked cops who tried to screw me...15 minutes later I walk out of the restaurant with a wry smile on my face, a couple bloodspots on my fancy shirt indicate a fight has taken place, a pool of blood flows out from under the door. Ahhh, those were the happy, halcyon days of yore!!!).

Sorry, I lost my line of thought, I just really get into that kickass Dirty Harryish memory I was telling you about. I really gave it to those bad guys.

Yes, our memories tend to fuzz up the details, but that's the nature of memories I guess, they shift and transform themselves depending on your mood and circumstances. Sometimes the memories are tough for me, it's a tough pill to swallow, remembering being healthy, remembering good times, sometimes even remembering the bad times can make me wistful for the bygone days where life wasn't limited by illness. At times when I feel really sick and I'm in pain, any and all memories are like acid, they eat up my insides in the most terrible gut wrenching ways...

It's been easier lately because I know I'm going to get better, before I felt so sick, the illness felt so endless, so insurmountable, the pain was excruciating... The memories just felt like distant mirages, cruel little vignettes that reminded me of what I once was, something I might never have again... And believe me, I'm still incredibly scared, I won't breathe easy until the day I'm back to my old self.

I truly believe whenever my illness is over I'll look back on this whole godforsaken period as a gift, a transformative period, an experience that broke me down and melted me all the way down to my core, only to transform me into a stronger and better element (don't you love corny metaphors!). Uhh, these are the things I tell myself at least, haha, how else can you get through such a difficult experience! But seriously, I feel like I've discovered strength within myself, strength I never imagined I had... and for that I am extremely thankful, this strength keeps my mind stable (yes, it really is in spite of what you might think!!!), keeps me optimistic, keeps me happy...

Anyways, although many of my friends/ family think this whole illness is a terrible trick played upon me, a sad unlucky experience for me to go through, I know in my heart that I am very lucky. I'm not the only one suffering, I don't have a monopoly on that, all I can do is do my best, find inspiration in any nook and cranny I can... And I never ever forget how blessed I am, with family and friends, with people that love me and that I love...

Moreover, my love of life has only increased because of this experience. My love of people, my family, friends, the world, I find myself with a deeper appreciation of lots of things (like violent movies especially). I'm thankful every day, I'm still alive, I'm going to get better, I've got a wonderful family, I might have a wonderful dog soon!, I think of the crazy amount of painting I'm going to do when I'm better, I think of visiting my grandparents in France, I think of riding my bike, I think of laughing with friends, I think of executing Rambo style revenge on all those people that dissed me while I was down (yes, some have taken cheap shots, those bastards! Actually I could care less what they think, I just have fun thinking of vendettas, they make me laugh), I think of freedom baby!