“Where Did I Go Wrong?”

*cough* Hmm…dusty! It’s been quite a bit of time since I’ve visited this place, sank into its comforting caress and typed my troubles away. But I think tonight is a good night to do just that. Where do I even begin? School is as stressful…no, that’s a lie. It’s much more stressful than I thought it would be. I’m sticking with my pattern of “oh look at this mountain of textbooks in front of me that I should probably take care of before they crush a small child. Instead, I shall play with this rock over here.” I never do anything. I’ve opened all but one of my textbooks but have only read one or two chapters in each of them. None of my classes are exceptionally complicated (compelling, interesting, but not mind-boggling) and I’ve managed to skate through most of my life like this. The problem though, is that this isn’t who I am. I’m an achiever. I want to be the best at everything, all the time. I correct people, I state my opinion, I don’t care. I’ve completely shed this anxious…okay, totally not true, let me back track. I state my opinion and I correct people. I care about what people think though, and I worry about being lonely and having friends. When it comes to school work, tests, homework, studying and all of that, I just can’t do it. I have to be set up by someone else. I have to be told to do it before I can actually actively participate in the activity. What the hell is wrong with that picture? It makes weekends and studying very problematic. Like this past week was testing hell because I had a test in every single class. I didn’t study for any of them. Flunked my math and scraped by in all the rest. Lucky, right? Well, I think I rely too heavily on that. I rely too much on my intuition and my reasoning when it’s critical. I mean, that sounds weird but it’s like the all or nothing thinking. Before, I didn’t trust my intuition at all. I didn’t want to believe my gut feelings. I didn’t think it was possible for me to be right about anything, ever. And now, I’m the shit. I know everything. I’ve lived through the French Revolution, I saw MLK Jr. be assassinated. Where did all of this knowledge come from? This power, this authority (authori-tay!) doesn’t belong to me. It belongs in someone else’s hands. And until I can use it properly (insert appropriate Uncle Ben/Peter Parker reference here), I don’t want it. Everything with school feels surreal. I’m going through the motions. I’m not doing this because it matters; I’m doing this because there is no question about whether or not it is supposed to be done. “Attend or attend, there is no drop-out.” And then the pain…I can’t feel like a normal person. My body is constantly at war with itself. Something always hurts, itches or needs to be adjusted. It’s to the point that it prevents me from functioning most of the time. Because of this, I never want to stay on campus, I never want to stick around and hang out. I never want to sit together and study for our next test. I don’t want to do any of that because the only thing I can think to do is go home and go to bed. My book bag comes to school with me every day but is never emptied. The books stay in the zebra-striped pouch all day, alone. I can cope with pain, I can handle stress but not having support is getting very difficult. But then again, I did start talking to Vladimir again, if you can believe it. The conversations are…the best thing I’ve ever experienced. I love him. I think I always have, even when we broke up and I just ignored it after all this time. He ended it with his girlfriend and we text obsessively with each other. He told me he loved me too. I get butterflies just thinking about it. To think that someone could love me the way he does, to know that my affection can be returned so unhindered is utterly beautiful. When he told me, I nearly cried. It takes a lot for that to happen but he almost managed it. Even now, thinking of his face, hands, his smile. Writing this about him, texting him while I’m doing so and thinking about what he’s doing is just enough to make me so tranquil inside. I think if we hadn’t broken up when we did, we would be married by now. (I just cracked my wrist and it was awesome!) Okay, mushiness is over. Back to misery…I was approved by my doctor at Hopkins to have a spinal cord stimulator (SCS) implanted in my back to treat the pain caused by my CRPS. I’m excited and scared as hell at the same time. It’s hard to imagine that something foreign will be in my body but at the same time, if it’s going to treat the pain, I don’t care. I feel like a rat on some guided maze. They’re making me go through all these hallways and loops before they’ll treat me with the medications I want. I’m not faking it, I’m not making this up. Insurance collecting at it’s best. I’m sleepy, but will make a valiant effort to continue this conversation tomorrow.

“Be Still My Heart ‘Cause It’s Freaking Out…”

images (2)Wow. I haven’t blogged in so long they went and changed the format on me. How can I even begin to explain everything that’s happened since August? Well, I guess I’ll start from the beginning and recall as much as I can…but there may not be any chronological rhythm to this at all (or sense for that matter) because we all know that I lack any sense of time (or sense).

August 26th- School started. The week was uneventful, really. My teachers are all weird and a bit off. I’m taking Human Development, Cognitive Psychology, Math (all of which I have tomorrow), Cross-Cultural Psychology, and Intro to Family Studies. I don’t really have a favorite yet. I do know I don’t like Cross-Cultural at all. I thought that would be the most intriguing, the most engaging, and by far, my favorite, but boy was I wrong! I don’t know what it is about that class but that teacher really makes me grind my teeth. Like she’s got bad vibes or something. I don’t know. Her juju is off. And she’s already tried to kick me out. Since when is being in class not voluntary in college? I don’t know, I think the whole thing…lacks a challenge, I guess. But then again, I haven’t really been doing much schoolwork for there to be a challenge to be challenged by. Okay, that sentence got away from me. I mean, you would think that after all of this neglectful blogging, after all the awesome tweets and Instagram posts, that my life would have to be super miraculously busy for things to be cancelling out blog time, but they aren’t. It just hasn’t happened.

Boys Boys Boys- Besides being a song on Lady Gaga’s first (very underrated) album, I have had them on my brain a lot lately. It’s quite unusual for me actually because I’m not usually one to focus on the opposite sex. No, it’s not because I’m one of those weirdos that thinks about like, lawn trellises or gnomes or something, I just never had much success with them so I never gave it much thought after a while. They sort of take a back burner when you take a back burner to them. But…like the week before school started, while I was out with Allison on a spur of the moment trip to Target that I had actually suggested, a guy came around the corner and started talking to me. He was an employee and after a few minutes of polite conversation, we went on and did our thing, but then, he was persistent and kept talking. I tend to be a bit of a flirt (I know, weird right? Social IQ of a block of wood but when it comes to flirting, I’m all cool) so I was playing off of the conversation and it led to him giving me his number which led to us going out on a date like the very next day. We’ve been talking ever since. It’s awesome. I really like him, too. I don’t know if it’s because of things going on in his life and school starting but our communication has slowed down a lot these past few days which freaks me out a bit. I’m sure it’s absolutely nothing. Okay, no I’m not. That’s a total lie. I can go a really long time without hearing from him and that bothers me. A lot. But I don’t know what else to do except be patient, bite my tongue and keep it moving. I’m not super experienced in this area so I don’t have a lot to go on and not a lot of people to ask. I’m treading water with him right now. It’s okay but I hope nothing goes wrong, nothing gets too intense or he decides that he doesn’t want anything serious.

Demi Lovato World Tour- Speaking of Allison, we had purchased concert tickets to Demi Lovato’s concert back in like June, thinking it would be an awesome experience. Demi is a real person, as in she’s a cutter, she’s been through the system, that sort of thing, plus I really enjoy her music so it was bound to be a good time. Boy was that the biggest misinterpretation of my life! I had been texting her more and more throughout the week with lyrics and pictures of little cartoons I’d drawn in my planner of Saturday night, marked off with “Demi” written in block letters, stuff like that. She never really seemed excited for it but I thought that was probably just a lack of time for texting. No big deal. Okay, I can handle that. Well, Friday night rolls around and I’m hanging out with BBB (aforementioned member of the opposite sex- this shall be his moniker until I come up with a better one) when she texts me and says she can’t wait for Tuesday. Um…Tuesday? What happens Tuesday? Apparently, she had gotten the schedule wrong and thought the big event was on Tuesday night instead of Saturday. Alright, Lucy, breathe, you can handle this. After sorting that little mistake out, she informs me that she is going to the movies with her brother 2 hours before the concert so if I want to come, I’m welcome, but if not, she’ll just meet me at the arena. Okay, this (especially for the dudes) may not seem like such a big deal. First of all, the thing is, I wasn’t super mad at first. I was hurt more than anything else. Granted, it took me a while (as in a few days) to figure out what exactly this feeling was and put a name to it, but I have and that’s what it is. I’m hurt. She made these plans with me months ago, then made plans with her brother not even a week before, and blows me off (sort of) to be with him. Now, the part that might confuse those that produce more testosterone than estrogen is the fact that I got ready for this performance by myself. I was alone for the prep, the drive, the parking, the walking, the waiting and the light-dimming. She didn’t show up until the very last few minutes before the show, and she showed up in like sweatpants. This concert was supposed to be a pick-me-up for the both of us. Something to look forward to, no matter what was happening in our lives. And she ruined it. The concert was epic though. Demi, Christina Perri and MKTO were all absolutely amazing. Like, there are no words. For Allison, there are quite a few. And this sort of thing has happened more than once. Well, not the whole being hurt thing but definitely making me question what it is exactly that I’m getting out of this relationship? Sounds shallow right? Sounds harsh and fucked up and totally like ulterior motive but friendships are supposed to be mutual bonds. Both parties are supposed to benefit from them and with her, I don’t. I get absolutely nothing from her as a friend. And what I do get is almost like a weak attempt at substituting the lack of substance she is totally aware is missing. No. I can’t. Not again. I lost sleep over this. This concert was a week ago (it’s Friday, it was last Saturday!) and I’m still stressing over it. She is in my head and it can’t be like that.

WebMD- Well, um, that pretty much sums it up. I know they tell doctors when they’re going through medical school that they’re going to think they have every single disease they’re researching or learning about. Well, most of the stuff I’m learning in my psychology classes isn’t clinical; it isn’t diagnostic or useful in terms of applying it to symptoms or a scenario involving a patient. For me, that’s a double-edged sword. Why? Well because, my latest search has resulted in the same answer every single time. Schizophrenia. Over the past few nights, I’ve had these waking dreams. I feel things that aren’t there, I’m distantly aware of what is happening but helpless and totally out of control to stop it. And the few times I come up for air like that, I’m immediately plunged back under and surrounded in this twilight-like state where I’m not sure what exists and what doesn’t, what is real and what isn’t. I get up soaked in sweat, sometimes out of my clothes. I’ve actually managed to create an odor in the sheets, that’s how badly they get drenched every night. And the paranoia, the gripping fear that is so incapacitating at night is starting to creep in during the day. Yesterday after driving home from class, I nearly lost consciousness from feeling like I couldn’t breathe. It wasn’t your normal panic attack though, there were…spiders. These horrible, little spiders. And the more I think about it, it’s like Pandora’s box is rebuilding itself and I suddenly understand the system of the universe. I’m the wife in the Bible that turned around the see the city of Gamorra burning and turned into a pillar of salt. Things are unraveling quickly but, I feel like, they’ve never been wound tight to begin with. I think signs were always there and no one noticed, no one was aware of what was happening or why. I think it was mine to find and now that I have, things are coming to light like never before. I don’t know what to do. For now, lunch.

“Everything She Does Is Beautiful, Everything She Does Is [Insert Word Here]

c8b343806f156c9e9098520e21b476dbIt’s 3:17 PM, Eastern Standard Time. I’m currently resting against a mountain of pillows in an old camp shirt and my underwear, with my bad leg hanging off the side of the bed. And this is how I will spend the rest of my Saturday. My room has been carefully crafted to be my own haven. It’s like an apartment in my parents’ house. And this is exactly why. Pain, of any kind, has shaped my life in more ways than I can possibly describe. Depression and anxiety, Borderline Personality Disorder and an unhealthy relationship all warped my vision and molded my way into this twisted little…golem that I am. Whether or not progress has been made is controversial. Some days are better than others. And then we have not just days, but entire weeks, where a series of events combined to create the perfect mixture that completely blows up in my face and shakes the weak foundation I seemed to have constructed with my new coping skills. What do I do now? Well, first, I PMS like it’s nobody’s business. I have been on a mood-swing rampage, up and down like a Katy Perry song, Dr. Jekyll and Mr. Hyde-ing my way through this week. I cried the other day while watching a program on the History Channel with my dad about pencil-making. Because it was so beautiful, intimate, complicated and yet, simple at the same time. No, because I am an emotional wreck. Let me start the week off and explain where this whole train of thought is going…(there are a lot of cars on this sucker, just a heads up!)

Monday- I had to drive Thomas to campus so he could buy his textbooks for the upcoming semester. Piece of cake. Well, if that cake were rotten and molding. Thomas’s campus is down the highway from us, like a 45 minute drive, not so bad really. I didn’t know that I would have to pay the toll though, and with the last scrap of cash I had we continued down the road. Once we got there, I had to walk, with my bum leg, clear across the main mall of the place to get to the bookstore. Alright, I’m inside, there’s air conditioning so it doesn’t seem so bad anymore. All we have to do is get his books and get out. Well, it would be that simple, if only Thomas knew what books he was buying. Countless time on the sample laptops, and struggling to find the world’s most well-disguised staircase, we bought the necessary textbooks, headed back to the car (another trek, this time with 30 extra lbs) and left. Well, we weren’t done. I received a scholarship from my church, which I had to pay in person at my school, conveniently located down the road from Thomas’s school. It’s like smack between Thomas’s school and our house. Well, once we were there, I took care of my parking issue (I couldn’t register my car without certain clearance…psh, whatever!), we were forced to walk back and forth, up and down and then clear across campus (again! Different campus but it still counts to my leg!) to put my scholarship money towards my bill. After that, I was exhausted. I hurt to no end and I was pissed beyond all reason, well, because, that day was a lot for a whole little!

Tuesday- My trips down the Interstate weren’t over. I had an appointment with Dr. Glover, whose office happens to be located right next to my school. Lovely, right? Head down there, get what I need from her (okay, she’s a legit doctor I swear!), and then head home to do what? Sleep! Sounds like a nice time, but for me, sleeping can be the enemy. I laid down at about 2:00 to take a nap and didn’t wake up until about 9:00. That’s your night’s amount of sleep, and I just spent it all in the daytime. Um…what am I going to do when the house is dark, my foot is hanging cold and frozen off the bed because it’s too sensitive to put under the covers and I just want to sleep like a normal person? You guessed it, I tossed and turned, finally giving up to get up around 5:30 the next morning.

Wednesday- Ha! Okay, this is probably the worst day of the week. It’s interesting that it happened smack in the middle of the week but, I guess it was supposed to be the peak of this week’s adventures. Throughout this week I was receiving messages (which turned into texts) from Bridget, one passing a message to Allison (since they are no longer speaking) and the rest were just conversational. Like I said a few weeks back, when we hung out the first time, I wanted to become her friend so I guess I sort of did. Anyway, things escalated like the virus from the See-Through Zone on Bravest Warriors. I tried to throw a blanket over it but, alas, my attempts were for naught. It (the friendship/peaceful negotiations) was lost and the ship (see, that’s where my head gets sort of turned around, not really sure what the ship actually refers to. The friendship? That moment? The situation? I don’t know but trust me, I didn’t forget about it) had to be abandoned. I got way to emotionally invested and involved, Allison did some things that pissed me off, hurt me and just, insulted me. I called her, yelled at her for it, then talked to Bridget for a while. As usual, I thought I had handled it pretty well. I was really upset about what had happened, but I was pretty confident that I handled it to the best of my abilities and could do nothing more. Well Mouth, tell that to my Brain. That night, I woke up every hour, almost exactly on the hour, distressed, scared…it was a big ball of emotions that was stuck like a hairball in the back of my throat. I couldn’t get it to go away. But that’s not all! Step right this way folks, and listen to the rest of my atrocious day! I had an appointment with a pain clinic that morning in the city in the hopes of finding someone that would treat my CRPS. I’m still flaring, with no doctor to treat it, and no relief. I get there early, they call me back, the usual appointment stuff. When the doctor, actually a resident, came in, he threatened to cancel the appointment that I was already sitting in the office for because I had a positive tuberculosis test in June. I had it done for school (you know, the litany of forms to fill out), but a positive test doesn’t definitively mean you have tuberculosis. Those things can react to being scratched, sweat, sometimes even just wiping the blood away after being injected. In other words, I do not nor have I ever had tuberculosis. And this dude let me drive all the way down there and then tried to cancel the appointment. Why didn’t you read my file, the reams of paperwork I sent to you beforehand at your request, before I came? You would have known then and would have saved me gas and time! He runs out of the room, talks to his overseeing, and comes back in, dangling a face mask in front of me like I’m radioactive or something. Alright, you’ve already lost points. Can you redeem yourself? He sits down and starts to take my history, but as he writing stuff, he’s not listening. He’s trying to follow what I’m saying and is instead putting in his own dates and notes where he wants to. It was confusing me to the point that I just let him do it after a while. The CRPS wagon has seen it all. I’ve been to so many doctors, hospitals, specialists and clinics that I have literally lost count. I don’t know where I am on the list of people who treat this disease. And now, neither does he, because he wanted to say I had the most recent nerve block in 2013, when my last one was really in 2010. More points being shaved off by the judges, I don’t know if he’ll recover from that one! Oh, he won’t. Because next was the physical exam. And doctors who have treated this before tend to know that you have to be super gentle, almost like you’re examining a black mamba with scorpion spines all over it. Residents? They are like handing a 5-year-old the Queen of England’s finest crystal. They are rough and impossible. I was crying by the time he was finished. As he’s stripping his gloves and leaving to discuss things with the doctor, he tells me that a topical cream might be the best option for me. Well, now the tears are flowing twice as hard. I’ve tried every trick in the prescription book. I’ve done pills, patches, creams, TENS, physical therapy. I’ve done it all. And no one, and I mean no one will give me the big guns. They aren’t taking me seriously as a patient. They aren’t letting me help in my own healthcare and I get so frustrated, pissed off and just crushed every time one of these appointments goes south, I can’t participate without becoming hysterical. Mysterious Doctor (the one Resident has been visiting every 5 seconds outside the door) comes into the room and reexamines my leg, this time telling the resident that you have to be super gentle. MD (haha, Mysterious Doctor) barely touched me during the entire visit. Resident, on the other hand…argh! Then, after what felt like no time at all, he decides I need another nerve block done. I took a deep breath, swallowed my freshly sprung tears and calmly told him that the last two I had didn’t work. Well, he calmly reported, they didn’t include temperature changes so there’s no way to know they hit the correct ganglion. No interest in the fact that it didn’t work, no interest in the fact that my back is also in pain, no interest in the fact that sometimes procedures like that can actually make CRPS spread, or become worse, no interest in the fact that he knew nothing about my case. I sent in all of that paperwork, I did all of that calling and back story, the work, the research on myself, to find out dates and the who, what and where, only for you to already have your mind made up about what you were going to do before I set foot in your office. Thank you…no, you know what? Fuck you. Oh, his final parting words? I will need a clean chest x-ray to prove that I don’t have TB before they can do the procedure. This was my Wednesday. Okay, I’m lying, it didn’t end there. I tried to meet up with Jackie for lunch because she works in that same area. She told me it would be fun if I didn’t mind waiting. And wait I did. Her lunch break came and started, and started to go. Without Jackie. Text: Is there somewhere I can be so you don’t have to trek as far? Reply: I don’t know if I’ll get out on time today. Text: Tell me now, should I leave? Reply: Convoluted reason about why she’s late. Text: Same message as before. Reply: Yes. Okay, see I wouldn’t have had as much of a problem with the whole outcome of the situation if she had just said it was a bad idea in the first place. I wouldn’t have been offended if she said no. Instead, I waited 2 1/2 hours of my life, sitting downtown, waiting for her to tell me she wasn’t taking her lunch break on time. Awesome.

Thursday- Because of my miserable day on Wednesday, I was just expecting everything to continue to sink deeper into the mud. Well, surprisingly, I was allowed to come up for some air. Devochka, one of the pages at the library, was supposed to hitch a ride from me when I went to my usual appointment with Allister because she had some business in that area. No problem, she paid me gas money, we’ve done this before so it’s all good. Well, Allister canceled my usual time but was still planning to have group. Devochka didn’t care and was willing to hang out like it was our usual Thursday. I picked her up, we drove down, had lunch, got coffee, walked around the mall. I felt semi-normal for once in a really long time. And part of the reason was just because she listened to me. I whined and complained, I confessed all my deepest thoughts and regrets about this whole Allison/Bridget situation and Devochka heard and understood every thing I said. She was there for me, when no one else was. I can’t describe how much I needed something like that this week. She wanted to stick around and hang out longer, but I knew she had to go somewhere so eventually we split ways. Rather than hang around and wait for group, I just headed home. I wasn’t sure group would actually make me feel better. Sometimes it only succeeds in pissing me off. And trust me, it’s not like that was super hard to do this week. I disobeyed orders, mostly Devochka’s (even though once I told her my reasoning, she totally got it), and headed home. Once at home, I didn’t really have any better of a time but at least no one else was physically injured in the process (there are some people I would really like to punch right now).

Friday- After a better night’s sleep than the night’s before, I got up, took Thomas to an event he and his friends were attending, then got home and had no clue what to do with myself. That’s where the crying about pencil-making comes in. I ended up hanging out with my dad most of the day, then picking Thomas up, feeling every emotion that is listed on the Facebook “feeling” option tab. Not cool.

And now, we sit here. My pillows, my laptop, my phone and the endless expanse that is the Internet. Now, what does any of this have to do with pain? The weak foundations I mentioned a week ago (ha, no it was earlier this post), were rattled and seriously damaged by the storm that was this week. I think a lot of it was caused by internal pressure (PMS), but a lot was outer. I don’t have strong friendships. Because of my past (I sound dramatic), I don’t know how to form the best bonds with people. When those bonds are tested, most of the time, my first instinct is to break them. It’s to break them and run as far away as humanly possible. However, not always the best option. Especially since I had a gimpy leg. I’m not going to get very far. When it starts affecting my sleep, we’re having problems. My physical pain, like I mentioned before, is through the roof as well. Random points in my body hurt, as well as my back and my leg. And it seems like no one is able to fix it. I’ve always relied on the physicality of CRPS that made it easier for people to accept. But, they don’t. There are no physical signs, except outward symptoms, bone loss and the patient’s description of pain. When that patient has a history of psychological problems however, what are we supposed to do? Believe her? That would be…well, insane! The pain this week is tough, but at this very moment (I can’t speak for any other day of the week), I’m tougher. I’m not going to let idiots disguised as doctors dictate whether or not I am successful at what I do because they believe I am in pain. I’m trying, trying, not to let other people so very close to my internal organs so that when the timer goes off, they manage to hit every single one of them at once, causing total internal failure. There’s been a lot of pain this week. But there sure as hell as been a lot of Lucy, too.

“I Find It Hard To Tell You…It’s A Very…Mad World”

images (1)“Struggle is futile.” I feel like there is a little, evil mastermind sitting on my shoulder, constantly whispering this in my ear. I manage to make it out of the cave, into the sun for a few blissful minutes and then whatever tentacled, growling monster resides there drags me back into its depths. I’m suddenly surrounded by darkness and feel like I’m suffocating. I’m never going to see the sun again. None of this will never succeed. I watched 12 Monkeys the other day (twice, I couldn’t help it, that movie was so good!) and the Cassandra Complex was mentioned. Shoot me, this is not my first time using Greek mythology but hey, the Greeks were on to something. Cassandra was a fortune teller that could accurately predict the future but was cursed in that she couldn’t tell anyone. That meant she couldn’t prevent it in any way. What could is seeing the future if you can’t change it? Thomas then took the liberty of explaining the different categories of time-travel (of course, making me feel like the worst Whovian ever!). Back to the Future, where you create an alternate universe that seemingly only changes your life and those in your life, though you are the only one with any knowledge of this change, Dragon Ball Z (hey, this is my younger brother defining this…) where if you change anything in the past, even if for the better, you will alter the future but it will ultimately cause the same thing, just in different circumstances, and then the pointless time loop, like 12 Monkeys. What if we have found some sort of time travel, but instead of actually moving through the definitive “time,” we’re just causing our own Cassandra complex? It’s a mix of the DBZ time travel and 12 Monkeys. We’re trying so extremely hard to prevent symptoms, to anticipate them, to know what to do when they happen, and then, once they do, we end up repeating the same behaviors. We revert back to cutting, starving, isolating, and whatever else it is that is typical for one to do while having a breakdown. The cycle spins so fast that we feel we’re going slow. Doctors start to think we’re doing it on purpose, and refuse treatment, blaming the patient rather than the disease. Family members blame the disease at first, but as the future lapses back over the past and symptoms are repeated, the person is then to blame. They aren’t trying, they aren’t working hard enough, they don’t really want to get better. Why would anyone choose this sort of life though? Where people constantly desert you as soon as they sense the dysfunction, where drugs haze your brain so much you forget how to spell words like ‘dysfunction,’ or where you put your glasses, though they’re sitting on your face, where you have to admit to first dates and old friends that haven’t seen you in a while that you’ve been institutionalized for this and that and that there is a possibility it might happen again. Why would we choose that for ourselves? We didn’t. Instead, by the power of the Fates, God, whomever is in the Heavens watching over the uninteresting and unimportant lives of the parasitic human beings that overpopulate the Earth, we are trapped in a soundproof box, watching the future play out from a projector only we can see, as everyone goes on with their uninteresting and unimportant lives. We are left banging on the glass, left trapped inside with only ourselves for comfort, like Cassandra. We know the future. We can anticipate like no one else what is going to happen and when. But we are powerless, in the end, to stop it. No matter the coping skills, no matter the support, no matter the treatment. It is futile, little evil mastermind, it is.

“When The World Gets Too Heavy, Put It On My Back…”

strength-training-tipsWrite. 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.