Write. It’s been on the tip of my fingers, the tip of my tongue, the pen pressed figuratively to the paper for the last two weeks and finally, finally, I can sit down and do so. What has happened in the last two weeks that has prevented me from pouring out my heart and soul? Well, pain. That’s about it. Pain is such an amazingly evil thing. It’s empowering and dehumanizing at the same time. We embrace it and shun it. We’re taught that without pain, there is no real triumph. Then, on the other side of the coin, we’re told that with pain comes suffering, and we should pity those that suffer. How can you have it both ways? I’ve been really irritated and frustrated with society as a whole these last few weeks because of the huge price tag CRPS forces you to pay when there is a flare-up (by my crutches, I will try and use the newer name from now on!). The staring, the sleepless, pain-filled nights, the constant, unending grip it seems to have over every aspect of your life. And the other people. There is no way to explain to other people the depth and breadth of your own suffering. And I know, pain only becomes suffering when you indulge in it, when you let it, but I don’t know how to not indulge in this because it is so all-consuming. Every single aspect of my life is being affected by this flare and because of that, I’ve been really irritated. Like, PMS but x10,000. Urges to cut, urges to die, the list goes on and on. I have those normally, but they’re much weaker. They’re farther off in the distance, harder to see, and much easier to deal with than they are right now. Body image issues are a huge thing too. The staring is constant. In robotics, some Japanese dude (no lie, he really was Japanese) came up with this theory that people avoid/have an aversion to things that aren’t exactly human because it’s their basic instinct for self-preservation. When we were still shlopping through the mud, things that weren’t normal-looking were usually diseased so we learned to stay away from them for survival. It’s called the Uncanny Valley. Look it up. You’ll be amazed at how freaked out you get when you see some of those robots. Anyway, I think the Uncanny Valley still holds true for actual people, not just robots and scary CGI, like The Polar Express (although the movie is really sweet, the animation is pretty weird). People stare at veterans missing limbs, at little kids with cerebral palsy in wheelchairs, at people on crutches who broke their leg playing soccer. I mean, the list goes on and on. We’ve gotten a little better because we’re sometimes brave enough to ask what happened. But the curiosity, it seems, is never innocent. There’s always a deeper meaning. They always want to know if it’s contagious, if they can catch it, if they’re at risk. Logically, most people know that a broken leg isn’t, but instincts tell them otherwise. I was in a doctor’s office a few days ago and a woman came in wearing a shield (the kind that covers your mouth and nose). She was there for an appointment and when she went back to see the doctor, the woman next to her said loud enough for me to hear, “why is she wearing that mask?” with disgust. Well, lady, she might have cancer and has a higher risk of dying from infection than you do! Anyway, the point of all this was to say that people avoid those of us without limbs, or “normal” looking features. I’m whispered about, pointed and stared at, and all I’m wearing is a boot. It could be so much worse. Becoming a freak of nature (besides the fact that I already felt like one) has not helped my mood in any way possible. I don’t sleep because of the pain and that affects my mood to the point where I get cranky and moody over every simple thing. Hence, my confusion over the pain situation. Why are we told that? Pain leads to strength but at the same time pity those that are experiencing pain. If it leads to strength, why should we pity them? Because they didn’t ask for it? Well, they didn’t ask for your pity either. No one likes receiving that. At least, no one I’ve met. I do think pain makes people stronger, if they can muddle through it and survive. Some people don’t survive. Some people can’t handle it. Does that make them weaker people? No, I think maybe their burden was heavier than others. And that’s what I mean. It’s not right to try and quantify something like pain (even though I just did it -_-). People experience things in different ways. What I may think is traumatic and horrifying, someone else might find fun and entertaining. I mean, hello, have you ever heard of a psychopath before? And to judge someone based on the pain they’re experiencing is insane. They didn’t ask for this. Who would do such a thing? They didn’t want the scars, the staring, the boot, the turmoil, the sleepless nights, the doctors’ appointments, the complications. They didn’t want any of that. They wanted a “normal” life, just like the one you’ve got. Instead, they were dealt this really shitty hand and then someone went and slapped down a draw four card (didn’t know we were playing UNO, did you?). Maybe they don’t know the rules. None of us come out of the womb knowing how to play this shit. None of us wake up one day and just automatically know what the hell we’re doing. Some of us pick it up faster than others, some of us never pick it up at all. I’m not saying it’s fair because nothing is fair. The dice are always loaded, the deck stacked against you but you still have to play. I just wish all the other players knew what was going on. I wish they knew the house rules and didn’t have to be so suspicious and cheat all the time. Just let me play the game and leave me alone. Let me do my thing and be done. Strength is pain redefined but I can’t redefine it if you just keep reminding me of the pain.
Humans have this thing called self-preservation. As far as I know, most animals have it. It keeps you from harming yourself, right? Like a built in protective measure, a survival instinct, a last ditch effort by your body that says “hell no, we won’t go!” Thomas asks me about it all the time. He uses it in the form of masochism, and how he doesn’t understand the ability to override that self-preservation and enjoy pain. Well, I sort of do. I’m not really a masochist in the traditional sense of the word (ya know, because aristocrats in the 1800’s were throwing the word ‘masochist’ around at teatime like it was no big deal!) but I used to cut. (I had to pause and determine what tense to put that sentence in). I enjoyed the hurt because it was sort of a physical manifestation of what I was feeling inside. And then other times I didn’t feel it at all, but I still did it. There wasn’t anything that stopped me. I was simply able to override the command to self-preserve and harm myself. Now, the thing is, how do you undo the command? I do speak Java, or any form of code for that matter, and humans are not as complexly simple as computers are. Once someone begins to tamper that survival instinct, does it remain like that, a flattened, useless piece of abandonment that helps no one when it is really necessary? Because if that’s the case, self-sabotage is redundant. The moment you enjoyed picking that scab or pulling that pair of scissors across the board stretch of smooth skin of your arm, you popped every champagne bottle there was ever to be. It’s like Minority Report, or the episode of Law and Order: SVU I just watched. Do past actions and thoughts predict future behaviors? Because if that’s the case, with people who self-harm, wouldn’t you have to break the pleasure found in harming, not in the act? Alright, I feel like Allister, wherever he is and whatever he’s doing, just stopped and palm-smacked his forehead in the most duh-Lucy-that-was-the-slowest-lightbulb-moment-I’ve-ever-experienced-in-all-my-career-as-a-therapist way. Deep down, I knew that. I understand that that’s the root of all therap-evil. But what if there isn’t a way to stop it? What if, like Frankenstein’s monster, there is no way to undo the lightning strike that brought the monster to life? I was contacted by Tasha today about coming to a get-together to start celebrating her birthday. Obviously there’s a chance Mara will be there. I’m actually excited that Tasha contacted me. I want to be friends with her, I want her in my life, but I’m not sure I’m actually ready for contact (of any kind) with Mara yet. We had that phone call about Levi’s accident and I was a wreck for like a month. And that was just a phone call! I don’t know what would happen if I saw her face to face! The war council was approached, strategies were discussed and a battle plan was agreed upon. However, rather than stick with that and be satisfied about the whole thing, I’m back in my head, swirling around what once was, what could be and all the other whats in between. I started absentmindedly deleting followers on Twitter and came to Levi, whom I thought I already deleted. Nope, I didn’t. Well, as is Internet etiquette 101, I played the let’s-see-how-far-I-can-click game. I ended up on Mara’s Facebook page, scrolling through the public pictures, reading the updated posts, looking at the glossy, web life she’s portrayed to the world. Ultimately, I am happier without her. I am better off, stressed less, have more money and just in a better place. But, (and it’s a big one), I also have to (reluctantly) admit to myself that I had good times with her, that things weren’t always terrible, and that that was a major chapter in my life, filled with milestones that I won’t get back. So, that being said, am I destined to pull the scab on, to continually create pain the absence of physical harm so that I can satisfy that anti-primal urge to self-destruct? Even the messages from my body are confusing. My foot flared when we got off the plane last week (I think because of all the pressure changes and sitting for so long) and hasn’t calmed down since. In fact, it’s gotten much worse. It’s creeping up my leg, slowly but surely, sensitivity and all. I had a few dreams where I was missing my right leg from the knee down. CRPS was always likened to phantom-leg syndrome because that’s what it is described as but with your leg still attached. Well, I know exactly what they’re talking about. I’ve never felt it more than now. My leg has betrayed me. It’s gone rogue. It’s joined the enemy. But I can’t decommission it. I can’t get rid of it. I can’t make the pain stop, or even lessen, no matter what I do. A few days ago, it was pretty easy for me to just accept that another flare-up was in full effect, like the heat of summer, and that’s just the way the world worked. But now, with the pain increasing, me staying up night after night because I can’t sleep, my mobility slowly decreasing…something has to change. I absolutely refuse to go out like this. I read a blog a little bit ago about a girl who was questioning whether or not she was holding on to her dreams too tightly. Was CRPS making her grip harder to something that was impossible because she knew it was impossible? I’ve changed my future plans and goals a million times in an effort to adapt and stay in a lane that is at least moving, even if it’s at a snail’s pace. What do you do when that self-preservation is suddenly kicking in and your need to self-destruct, your need to crumble are at odds? Both are so strong, both so willful, resourceful and passionate in their plight that they will never give. I’m going to end up like the U.S. and Vietnam. Still at war. Always at war. Even if no one knows it.
Vacation. A break. Time off. It’s supposed to be a chance to relax, kick back, lighten the load and enjoy the view, right? Well, mine was…sort of. It was a time away from not having a job, or no education. It was a chance to get away from the suckish hellhole that my life usually is. Some of the time though, vacation was a constant reminder of all the problems I have. It was a reminder of the shit I have to deal with and have yet to deal with. I don’t even know where to begin on this long bus ride (because that’s what it was. A bus ride, a few layovers and a very scary flight to Chicago) of a vacation…
Seattle: We left Monday. Everything went fine. Excluding the fact that the shuttle to take us to the airport was 45 minutes late, which wound my mother up like a toy screw. She was so frazzled when we got there, everyone was frustrated within the first 10 minutes of being in the gate. We got on the plane, exhausted (it was like 4 in the morning), and flew, connected, and flew again (with some time zoning problems in there) to Seattle. The city was amazing. Modern, cool, edgy, everything about it just screamed young and upcoming. And apparently that’s what it was. Thomas and my mom ditched me and my dad to see the Space Needle (I don’t do heights. Let me repeat: no heights) so we sat and just sort of watched the city pulse. It was awesome. The air was cooler, no sirens, no horns honking, pedestrians crossed the streets with sense and reason and trucks and cars stopped and started with the lights like they were supposed to. It was fabulous. Even the policemen, the few I saw, were on bicycles, that’s how low-key this place was. Nice way to start us off.
Portland: On the way to Portland, we stopped at Mt. St. Helens and Mt. Hood. They were absolutely stunning. I’ve never seen snow-capped mountains before, not like that. And it was epic. Obviously we took a bunch of pictures, and then we were back on the bus. Now, the drive to Portland is way longer than I seemed to have calculated without any sort of map or knowledge of the area prior to this trip. I assumed all the cities on this journey were relatively close to one another, a few hours at the most, making the time on the bus minimal. Ha! We lived on that bus. And the trip, which we’d booked through AAA, was mostly older people. Like seriously, everyone on the trip had at least, 30 years on us. At least. I don’t have a problem with driving, really don’t. When I’m doing it. This was a jerky bus, that was not under my control, that forced me to be seated in a tight space for extended periods of time, with people that generally annoyed me. By the time we reached Portland, I was pretty sour on the whole thing. The city was nice, but lacked the personal charm of Seattle (I apologize if any of you live in Portland. Just wasn’t my cup of tea. Plus, like I said, I think my opinion was a little skewed). We went on a dinner cruise and toured the city a little bit, then it was back on the bus the next day.
Coos Bay and Eureka: Coos Bay is a small town in Oregon, that allows gambling. We stayed overnight in a “family-friendly” casino (please, can anyone explain to me the point of bringing little kids to a casino when they aren’t allowed on the floor?), where I found a relaxing outdoor hot tub, that I kinda wish I was sitting in right now because that would be absolutely wonderful. Well, now that I think about it, maybe not in this disgusting humidity. There, the weather was perfect for it. We didn’t tour the town, I didn’t even leave the hotel. Eureka was pretty much the same thing. There was a pretty house in town that belonged to some important guy that got rich off the Gold Rush in the 1800’s but other than that, the town wasn’t supposed to be a point of interest on the tour. It was a place to stop for the driver to rest until our final destination. The house was stunningly beautiful though. It took this guy like 14 years to build it and send for his ever-trusting fiance, who lived in Boston at the time, but she came, they got married and lived there until they died. It was rather sweet.
San Francisco: This city was made for me. There is nothing way to put it. We got there and Thomas, who had been telling me about the auras he sensed throughout this entire trip, explained that this city’s aura sort of matched mine. We were there for two days…not long enough. We toured the pier, Chinatown, Japantown, saw the sea lions, the Golden Gate Bridge, saw Alcatraz (didn’t actually see it, like go over to it but we viewed it from shore), it was incredible. There are no words to describe how much I would have been willing to stay in that city. Then, things started heading downhill.
I don’t know if it was the exhaustion from being on the trip. I don’t know if it was being forced to spend so much time with the same amount of people in such a confined manner. I don’t know what it was. The first night in San Francisco, my father drank, what I considered, an excessive amount of wine. I got upset, he got upset, we all got upset, but the problem remained unspoken. No one said anything about it. It hung, like the stench of alcohol on a sleeping man’s breath. Stale and disgusting. We made it through the exhausting ordeal with our transfers being cancelled and then home, where my dad drank steadily throughout the day until we actually lost him. Thomas came downstairs and asked where he was. I found him outside, asleep, on the deck, in the dark. He was totally asleep. It took a lot of convincing, but I got him back inside and arranged on the couch to the point where he wasn’t going to roll off or anything. I don’t know what to do. As I write that sentence, it’s like the hallway clearing in high school just as the bell rings. Lockers echo as they slam shut, doors latch and papers scatter to settle in the emptiness that you’re left in. You’re alone, completely alone, and yet there are hundreds of people surrounding you at the exact same time. My father could be an alcoholic. I don’t want to say he is, because he doesn’t believe he is. I am so quick to label things, to put judgment and names to everything. Sometimes, I want that. Sometimes, I think with names and labels, it’s a little easier to manage because then I at least have a thing to address. I have something to talk about, even if it’s just a concept. It’s a concept with some sort of identity. When I put on a label that weighs 50 lbs. and my dad can’t swim, then drop him into a 300-ft. deep swimming pool, well, then labels become a problem. And this problem isn’t my own. It’s a communal problem. Like hepatitis in the local watering hole. This doesn’t just affect me, my parents, Thomas…it affects all of us. My dad is at an age where part of me feels like it isn’t worth doing anything. He’s comfortable, he doesn’t believe anything is wrong so just let him be. But I want my dad around. I want him to walk me down the aisle, I want him to kiss his grandchild on the forehead after the nurses clean all the birth goo off. I want him to be here. I mean, wasn’t that my biggest fear as a child? Wasn’t letting go and losing someone one of the hardest challenges I have ever faced? Oh, wait, I’m speaking in past tense. It is the hardest challenge I have to face. There isn’t a past tense of this. I am still randomly overwhelmed by moments where I remember that the greatest (and sometimes the worst) people in my life are mortal. We aren’t demi-gods, with a chance at immortality if we perform heroic acts. We aren’t going to live forever because that’s what we promised our daughters so they would stop crying for the millionth time. It doesn’t happen. Nope. False. Denied. Those Greeks, man. They knew what the hell they were doing when they wrote all those myths. They nailed humanity right on the head. I feel like Icarus, flying too close to the sun. I always make wings of wax, flying on the belief that things are fine and that my dad, hell, my whole family, everyone I love, is going to be okay, and then something dramatic happens, and my wings melt. This time, it was his drinking. I was coasting while we had a good vacation and then his sobriety brought me down to Earth once again. I can’t keep letting him, or myself, lie. There’s no point. I’m not fooling anyone. In the end, the wax will melt, and I will fall. I might as well pack a parachute.