tag:blogger.com,1999:blog-29259641811898194172024-03-08T14:49:58.476-08:00Under the BridgeTrollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.comBlogger346125tag:blogger.com,1999:blog-2925964181189819417.post-75757689030057641732019-09-01T10:57:00.001-07:002019-09-01T10:57:26.945-07:00Week One of Grad SchoolSo I've finished my first week of grad school, which I feel has been one of the most productive weeks I've had in a very long time. I've wavered between feeling completely overwhelmed and feeling slightly confident. It's definitely a challenge for me, but I know I'm going to have to communicate with everyone in my program to make sure I do as well as I can. We all have different areas and levels of expertise. I've already noticed how different this is from undergrad, where you could just go to class, keep to yourself, study, and excel. Speaking of Excel, I realized today just how much I've forgotten about using the program for stats/visual data when trying to work on an assignment for my Experimental Approaches class. I got it done, but I'm sure there is a much easier way to do everything. The assignment isn't graded, but it does give me an idea of what I need to do to get back up to speed. On the other hand, it's amazing how much simply working on a dataset will help you remember.<br /><br /><br />I'm finally facing real challenges academically, and that's kind of scary. But I've managed some pretty crazy shit before, so maybe I can do this.<br /><br />Thanks to everyone who continues to support me in all of this. Every little reassurance has helped in some way. I never thought I'd be able to handle all of this while trying to move into and organize an apartment. I never thought I'd be able to deal with the long commute. But I feel energized, even when I'm exhausted. I feel both disorganized and organized at the same time, but I'm sure that will get sorted out as I settle into my routine. I'm still sad in a lot of ways. I'm worried about a lot of things, and doing a distance relationship is extremely difficult emotionally. But I know we will be okay as long as we prioritize communication and cherish the time we do get to spend together.<br /><br />I'm not sure what tomorrow holds, but I may try to tackle the figures for the Journal Club article, even though I have one more week to take care of that. This semester is focused on molecular stuff, while next semester is focused on cognitive, which I would prefer. There's that need to collaborate to make sure I'm really getting the right ideas. I'm figuring out my weaknesses early on to make sure I can focus on them before they cause any problems.<br /><br />I just might be able to pull this off. I'm sure getting back to the gym yesterday has helped to shift my mindset. I've been studying all morning, but I'm planning on heading to Freddie's tonight if anyone wants to join me, if I can get a ride home since the bus stops running pretty early (11 pm or so). I'm hoping to reschedule performances this week now that I have my exam/assignment schedules.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-76891519091473364182019-06-17T18:10:00.001-07:002019-06-17T18:10:37.292-07:00RealityAbout two weeks ago, I opened an email that may change my life. Or it may not. I've been accepted into the MS program in Integrative Neuroscience at Georgetown. Most people would be ecstatic, and I am to a degree. But I'm overwhelmed. I'm terrified. <div>
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There's no guarantee that I'll get the financial aid I need to attend.</div>
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The commute is going to be almost if not more than 2 hours every day, each way, unless we can find a way to get additional funds to support living at least a little closer to the city.</div>
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I haven't been in school in nearly a decade. What if I can't do it anymore?</div>
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There are so many little details to navigate before school starts (waiving health insurance, random forms, getting a school ID, meeting with people, orientation), and not knowing whether I'll even be able to attend is making all of that rather difficult.</div>
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I'm still trying to proceed as if everything is going to work out, but knowing that it may not is really taking its toll on me. </div>
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That and I've been sick all weekend. </div>
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If things do work out, my schedule will look like this before research hours (12-15 each week) are added:</div>
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Basic Neuroscience I (MW 9:00-10:40 am)</div>
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Journal Club (M 11:00-11:50 am)</div>
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Translational Neuroscience (Th 11:00 am-12:40 pm)</div>
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Experimental Approaches and Techniques (F 10:00 am-11:40 am)</div>
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Public Policy for Scientists (T Th 6:00 pm-7:30 pm)</div>
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I keep wondering if I'm ready for this. But I have to keep trying. I've waited almost a decade for this opportunity, and I can't just let it go now. The worst part about this is waiting for everything to come through (or not). It's hard to focus on anything else right now, including work, which is becoming a problem. I usually get perfect ratings on my jobs, but I've gotten two less-than-stellar ones in the past few weeks. </div>
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I don't really even have much more to say. I just can't stop thinking about everything and needed to get it out.</div>
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Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-71979480936079041682019-04-25T18:48:00.004-07:002019-04-25T18:48:53.660-07:00HonestyMonths have gone by since I've written. It's not that these last few months haven't been eventful. It's just that my brain is way better at focusing on the negative than the positive. The highlight of April has been my Mr. Freddie's victory, which is also terrifying because I'm in the Pride show at a major queer destination in DC, and I know I have to knock it out of the park with this one. However, I've also noticed my mental health deteriorating rather quickly. If I'm not actively engaged with something or someone, I feel the immediate urge to scream/cry/harm myself in some way. That harm sometimes takes the form of considering drastic decisions, while it sometimes manifests more physically. Even when trying to engage in tasks, I'm incredibly distracted and unfocused. I feel like I'm constantly battling my emotions, and I need some kind of break. I was looking forward to this weekend to get that chance, but I will most likely be working instead. I'm trying to avoid going to the hospital until after Pride. I feel like I can do this, somehow. I've made it this far, and I consider these few months to have been a success. I'll be reaching out to some support systems soon enough because I know I won't be able to keep doing this on my own.<br />
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I'm trying to figure out the factors contributing to these semi-recent changes. I'm getting bored with my job, and there is no guarantee that this last round of applications to grad school will work out for me. Even if I am accepted, most of these programs don't provide funding, which means I will have to figure out a way to pay for it. I'm not even sure I'll be allowed to get additional loans, but I wanted to avoid thinking about that until I receive a decision. I work from home, so I'm isolated all the time. I feel no connection to this place, although there are a few people who make it worthwhile. Part of me fears that I'll never feel as connected to my home as I used to. I feel stuck. Life feels stagnant at best. What should excite me just terrifies me most of the time. These feelings are so strong that they interfere with almost everything I do. I haven't been processing speech well lately either. I keep asking people to repeat themselves or missing key conversation points. That alone makes me wonder if I'd even be able to handle grad school. I'm feeling overwhelmed at this very moment, and I just had to remind myself to breathe normally. The feeling in my chest/stomach just won't go away. I'm having a harder and harder time knocking myself out at night. Most of all, I fear talking about these things because there isn't really a good "reason" for any of these feelings. They just are, and I feel like there is very little I or anyone else can do at this point. The only thing that I seem to know is that going to the hospital has always provided at least some relief. If I do end up going, I won't be doing ECT anymore. I like my memories, even if a lot of them are pretty terrible. I don't want to lose any more parts of my life.<br />
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I want to keep writing because it's something to do to keep the feelings at bay, but what else can I say that I haven't already? I feel like I say the same things over and over again, year after year. I know I will never "get better", but isn't some level of recovery possible? I don't want to feel this terrible for the rest of my life. I want to feel in control again. I want to feel motivated and excited. I don't want to feel paralyzed or be incapable of doing the smallest tasks or making the simplest of decisions. I want to stop lying to everyone about how I feel. I want them to actually know that I've been doing pretty shitty, and that any help at all is appreciated. I want to find a therapist that doesn't suck. I want to find a doctor whose office I can actually get to during the day. My fiance's schedule has shifted, so I may be able to make another appointment with my old doctor. He's nice enough, but I don't think he really knows enough about me or what I've been feeling to help me. I always struggle with words during appointments, and most therapists/doctors have refused to read things I've written to describe my symptoms. Living in this area has proven rather stressful when trying to deal with my mental health. Transportation also kind of blows, but it's nice enough now where I can get to a few places on my bike, provided I don't get hit by a car. Having my gym right across the street has definitely saved me on more than one occasion. I'm doing better now, but I was starting to lose focus in the gym too. I'm still not where I feel like my mind should be, and that's how I know things aren't right. I've always been able to escape from the world for that little bit of time. It's always been calming. Now it just doesn't seem to be enough. I worry about medication changes, especially right before big events like Pride. I don't know how to deal with all of this.<br />
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Maybe this is the first step in dealing with it. I'm not trying to hide the fact that I'm not okay. I'm not going to be unflinchingly optimistic anymore. I need to be honest with myself if I have any hope of avoiding the worst. I need to be honest with the people who care about me. I do have some hope. I haven't gone this long without hospitalization in 5 years. Getting to that 2-year mark in November would mean quite a bit to me, but I won't be upset if that doesn't happen. Sometimes it's just necessary. I have my shows to keep me going right now. I may be terrified, but focusing on my performances and costumes lets me make it through some of the harder parts of the day. I just have to learn to manage the terror I feel about not being good enough.<br />
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I think I'm done rambling for now. I keep saying that I will write more, so maybe I should actually start doing that.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-55056788640325261382018-12-05T21:37:00.002-08:002018-12-05T21:37:54.302-08:00Just a ThoughtMaybe this is as far as this journey is meant to go.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-32431210135396061822018-11-03T00:48:00.004-07:002018-11-03T00:48:53.523-07:00The InevitableIt happened again.<br />
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I just learned that November 1st is Autistics Speaking Day. And that's when it happened.<br />
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I had been getting increasingly anxious about transitioning from tap class to jazz class for the next month. We knew this was happening, and I'd been anxious to learn a new style. I've only ever been instructed in hip hop, and I'll admit my technique is a bit messy due to my original learning environment, but I don't think I'm too bad considering I learned to dance under a bridge with a bunch of kids from around the city as a teenager, all while hiding this from the people I knew because I didn't want to appear feminine in any way. I hid it for a long time because I still wasn't as good as I feel like I should have been. I've always had pretty unrealistic standards for myself, and that's what set me up for failure this time.<br />
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I couldn't visualize the class going well, which should have been a sign for me. I knew that a meltdown was likely. It was all so new, and with my brother's accident, the Pittsburgh incident, and the general stress of work and life hitting me all at once in the days preceding, I was probably at my limit. I went anyway.<br />
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The beginning of the class actually went pretty well. We warmed up a bit and stretched, and I'm pretty damn flexible, so it felt good to actually be good at something. But things got complicated quickly. Maybe that wording isn't quite right. The steps were easy enough, but my brain couldn't work to put them together in the moment, which only made me more frustrated and embarrassed. When we got to completely new things, I just couldn't even make my body move to try. I was apparently digging at my head, and I know I went to the corner and stopped making eye contact altogether. Jackson tried to help by telling me to "get water", which usually means I should step outside to collect myself, but I wasn't able to get that, or maybe I refused to. I was afraid that leaving the room would actually make it worse. I knew I needed to stay even if I didn't do anything. I was still taking in the information even if I couldn't move. I was still processing, still trying. There is effort even in stillness, even in chaos. That's one of the things that's been most difficult to explain. You may not see anything happening, but--in these situations--I'm honestly trying as hard as I can. Some of that energy goes into the task at hand, while some of it goes into making sure I don't completely fall apart.<br />
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The worst of it came at the end of class, when everyone started talking. There was a loud burst of laughter that startled me. I slammed my hands against the wall without being able to even think about it. I had no time to stop myself. I scared everyone. And then when they left, we fought. We'd made a plan to stay and practice afterwards, but he wanted to go home. Given the state I was in, all I wanted to do was stick to the plan. To finish what needed to be finished and feel like something had gone right. I didn't pay attention to his emotional needs because I was too focused on my own, and I made things worse. Maybe I shouldn't be saying this. But it's important to know that these things happen. We talked it out, and we both learned a few new things. But here's the thing. These situations, however infrequent they become, are absolutely going to happen. I can't change the way my brain works. I can only change how I prepare for situations and how I respond to them. In the moment, it's impossible to make those changes.<br />
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In spite of everything that went on, I'm trying to focus on what went right. I did not become entirely disruptive. I may have clawed at my head and stood in the corner, but there was no screaming. There was no banging until the very end, just that one time. More importantly, I'm not deterred from going back, and I am not afraid that it will happen again. It's almost as if I feel that the worst has already happened--that I can never look any worse than that. I have nothing to lose, and I still want to try. I still want to learn. I accept that things will feel awkward at first. I'm ready to try again. To start over. And I don't feel like running away or giving up. In addition, while my mood may have been off that night, I didn't stay in the "meltdown/shutdown state" for long. By this morning, I was mostly fine. This is progress. I know the things I need to work on, but I really have to acknowledge the things that I have been able to improve.<br />
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I also need to mention this before I forget. It's been a few days since I've had my lithium due to some issues with the pharmacy. And, other than the incident Thursday, I've felt fine. Not just fine. Better than fine. I have more energy overall, I feel more focused, and I'm generally happier. This happened the last two times we had pharmacy hiccups. I'm worried that the lithium is making things worse, but I'm hesitant to stop. I did stop taking both medications for a few weeks last winter, and that went VERY poorly, but I did so without talking to my doctor. I may mention it this time to get his thoughts. I've accepted that I may need the medication, but given how I've felt, it's worth asking.<br />
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My head is still spinning. One post-meltdown side-effect that I'm experiencing is this sort of eerie silence in my mind. It's not complete or ever-present. I can't tell if it's clarity or numbness, or a little of both. It still hasn't detracted from the overall positive feeling I've been experiencing. Needless to say, I've been a bit confused by my own emotions for the past few days. I'm hoping to get more words out as they come. I spend far too little time writing for myself these days. I'm sure I'll have plenty of time after surgery, which is in 67 days. Get ready for all the shirtless pictures. I've got 10 years of them to make up for.<br />
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<br />Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-36597576512983464932018-10-30T00:56:00.002-07:002018-10-30T00:56:42.793-07:00Processing AttemptThis weekend, eleven people were murdered in a Pittsburgh synagogue. My brain is still processing everything that has happened. Maybe there are no words anymore. Maybe there never will be. What do you say when you're starting to lose count of the number of times you've had to check to make sure your friends are alive? Welcome to Trump's America.<br />
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It's hard to balance my emotions right now. The weight of this tragedy, this administration's persistence in denying the existence and rights of trans people, and the emboldening of hate groups around the country have drawn my attention away from some very positive things going on in my life. As difficult as it is, I want to focus on those things for a moment.<br />
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Last week, on my mother's birthday, I had my top surgery consult with Dr. Ramineni in D.C. The process was almost effortless, and the entire staff couldn't have been more professional. I walked out with a surgery date. All I need to do is submit my letter. Here's the interesting part. Throughout the process, I've felt relatively subdued. I know that I am excited, but it's definitely not showing through. Maybe I'm worried that something will happen to alter my plans. Or maybe it's just been so long--so overdue--that it just needs to happen like any other medical procedure. Maybe I'm just ready. Ready to take my final step toward living my truth. Ready to feel the sun on my skin in the summer. Ready to see myself for what will feel like the first time, I'm sure. I don't think it will fully sink in until that day, or until I see the final result. The emotions will come in time. Knowing me, they'll hit me all at once.<br />
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I've talked with two potential grad school mentors on opposite sides of the country, and both conversations went exceedingly well. The researcher at UMD wants me to come up for a visit to the lab after I submit my application. I finally feel like I'm moving forward with my career plans, and I do have a good feeling about at least one program. I'm worried about the financial burden of taking a drastic cut in pay to attend school again, but I know that will be temporary.<br />
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I'm 30 years old, and I decided to learn something new. I started learning to tap, and after four classes, there are some things I can do up to speed with everyone else, and many of these people have been doing this their whole lives. I'm still a beginner, clearly. But I've learned a hell of a lot in a short amount of time, and my focus has increased overall. I'm doing more. I'm getting more done in general, and I'm slowly getting better at regulating my emotions. I've been on the edge recently, contemplating whether I should return to the hospital almost daily. The only reason I hadn't? Grad school applications and those phone calls. I needed to make it at least that far. Now, I can take a break from work to tap for 20 or 30 minutes, feeling refocused and energized afterwards. I want to see how far I can get. However, the class is shifting to jazz for the next month, so it looks like I'll be on my own for the most part, at least for a little while. If I had the extra money, I'd pay for private lessons. I expected to enjoy it, but I've fallen in love with it, and I really want to get better.<br />
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All of this has happened within this past year, and I think that's something to be thankful for. Right now, I'm also thankful that my brother is alive. He was in an accident last night and had to have surgery this afternoon. With all the plates, screws, and bone grafts, I'm worried that he may not have full function in his wrist/hand ever again, but it looks like he's going to be okay for the most part. I'll know more tomorrow.<br />
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I feel like I'm still trying to synthesize everything that's been going on. I still sort of feel like I'm struggling to keep my head above water, but it's manageable right now. Taking this break from performing to focus on school and my own life has helped, and it's given me the opportunity to plan some really awesome numbers for my comeback after surgery.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-89186169010056649732018-09-16T22:45:00.005-07:002018-09-16T22:45:48.305-07:00Grad School, Mental HealthIt's been an exhausting weekend of performing and meeting with old professors/advisers to discuss my plans for graduate school. Luckily, my Sunday evening plans had been canceled, saving me the trouble of using spoons I just don't have right now. I have a lot to think about, and some of this feels like starting the process all over again.<br />
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My former research adviser noted that the main weakness in my application would be my lack of research experience beyond undergrad--pretty much what I expected as well. She also made the point that my research interests and desire to see my work put into practice when working with individuals with disabilities may align well with certain rehabilitation sciences programs, which may place less of an emphasis on extensive research experience during the admissions process. I've identified a few more program options over the past several days, but I honestly didn't expect to have to shift directions this much. I think I am still going to apply to my top choices in neuroscience/psychology while exploring these other programs.<br />
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I know I have a little less than 2 months to get everything in, but that honestly feels like such a short amount of time given everything that I have going on, especially if I have to contact a dozen or so additional people. I suppose I know what I'll be doing in my spare time this week.<br />
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Shifting gears a little...<br />
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I spent a lot of Saturday night following the show in a sort of trance, though I descended towards full-blown meltdown territory on the car ride back to the hotel. We had planned on staying out a little later, and I felt like I was fighting myself the whole time. I struggled to sit still and avoid screaming. I'm nowhere near that point this evening, but the urge to scream and thrash tends to come and go these days. I know I need a break. I'm taking one as soon as I can, while trying to avoid the need to say yes to everyone about everything. I'm scared that I won't make it. I'm scared that everything will fall apart again. I normally wouldn't even care, but I'm finally working towards something that matters to me instead of just getting through each day. But that's proving more taxing than I thought. I don't think it would be nearly as bad without the travel every weekend, and I know that's something that I'll have to consider in the coming months.<br />
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I feel like I keep losing my train of thought. I'm tired all the time but can't sleep. I wonder if this increase in medication dosage has actually made things worse. It doesn't feel any better, but I don't want to keep increasing doses because that's what always seems to happen, with pretty dismal consequences. I still wonder if I really need the medication--if I can resolve my issues by taking control of my environment more effectively--but I don't think that's a decision I can make right now. If the medication worked in a way that allowed me to do that, I could understand. It just seems to get me moving and out of bed, but with all the same mental anguish and anxiety. I'm so over all of this that I want to give up, but I also know that that leads to its own set of problems.<br />
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I don't know what the hell is going on in my life anymore.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com2tag:blogger.com,1999:blog-2925964181189819417.post-1104984361224489102018-09-12T00:33:00.002-07:002018-09-12T00:33:16.302-07:00Rambling about "Motivational" SpeakersOh look. More generic "inspirational" messages from people trying to be motivational speakers. Like, does this crap actually help anybody? I feel like I just watched 5 minutes of fluff and 20 seconds of an actual point. Granted, some of these people have done a lot for the community, but sometimes I have to roll my eyes because, while it may be just me, I take little comfort in those "everything is going to be alright"/"look at me! i did it so you can!" videos. I prefer people who provide a critical analysis of the problematic shit that fuels feelings of hopelessness, anxiety, and isolation among queer individuals. I'm not really here for your feel-good pieces, but I suppose that's what's most marketable because people love their easy answers. <br /><br />I know there is a need for young queer people to hear positive messages, though, so I acknowledge that my feelings might be a bit misdirected. But I think they also need to know that it's okay to not be okay. That simply putting on a brave face and powering through isn't always the best choice for your mental health. "It gets better" has always been a problematic phrase for me. <br /><br />Because it doesn't just get better. Not on its own anyway. You learn to make it better. You learn to claim agency in your own life, you learn to set limits, you learn to cope. It gets better when you realize that you have the power to make it better, even if that's just in small ways. And, as I've said before, better doesn't always mean easier. <br /><br />The last thing I need to hear when I'm really not okay is that I'm going to be okay. Maybe that's true in a way, but unless I deal with whatever is making me not okay, I won't actually be able to let it go enough to be okay. My brain doesn't work that way. I obsess over mistakes I made 20 years ago, so you can imagine what real problems do to me. Sorry for rambling a bit, but I think I'm getting to a breakthrough point here. What do I need in those situations? First, I need to get it out there. I need someone to talk to me about what's going on, and not just on a surface level. It'd be nice not to have to have those conversations with myself: "What is the worst thing about the way you are feeling right now?" "Do you think anything specific/any combination of things is making this worse right now?" "Can you improve this by taking care of any of those other things first?" I appreciate supportive statements as well, but I feel that generic advice is unhelpful in these situations. I think that offering advice without knowing the full situation or asking what has or hasn't worked is kind of presumptuous. If one more person tells me I need to try deep breathing exercises, I will scream. Seriously.<div>
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I've learned a lot about how to manage my own mental health. And how not to. When I finally get to the point where I can't, it's usually because EVERYTHING has failed to help. I've never really had a decent therapist. At least not one who has been able to provide truly novel insights. I'm a shit show right now. I'm doing my best, but I'm not doing well. Sometimes I feel like running away. Running home, even though I am home. I've gotten to the point where I get anxious/overwhelmed by having to do anything at all. I'm taking a break from a lot of things starting sometime in October. I'm hoping this helps. A few days/weeks at a time just doesn't seem to work. I still fear that I'll have to return to the hospital before long. The thoughts hit me at random times. I feel like screaming quite often. I hate this medication and what it does to me physically. I wonder if I really need it. I wonder if getting past the withdrawal phase would change things. But I'm scared to try, and I'm scared to ask. It's not that I have a bad relationship with my doctor, but I wish I felt like I could really open up. It just feels...very sterile, I guess. </div>
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The thing is, I am having more of those days where I feel fucking amazing. Where I'm bouncing off the walls ready to do everything, but still unable to focus on anything long enough to get a lot done. The problem is that I can hit rock bottom the same day. This can happen multiple times in a day, even in an hour. I keep wondering how I will ever be able to live with this outside of my own house. I've been fortunate enough to have a place where I can hide from the world to deal with this for years. If I want to move forward in my life, I won't have that luxury. Maybe that's been part of the problem, but I know I won't have the balance I need. I don't know what this means I should do, but I feel like I at least have to try. I'll just end up regretting it if I don't. </div>
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I wish I could talk about everything that's going on, but I'm entering some new territory. It's largely positive, but things are probably about to get a lot more complicated. </div>
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Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-52003515105326739242018-08-23T22:05:00.001-07:002018-08-23T22:05:38.105-07:00This is 30A few years ago, I remember writing something in a journal of mine that eventually became an Instagram post, fully filtered and angled appropriately, back when filters weren't entirely frowned upon by the faces in the shadows of the internet:<div>
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"Let me always feel like the best is yet to come."</div>
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So, I'm 30 now. That's a lot to take in for someone who feels both 15 and 55 at the same time. Obviously, nothing has really changed in the span of a few weeks, other than what I've known to be changing over the last several years. I'm still bald as fuck, and maybe that's the worst of it physically. I can't drink like I used to, but I don't want to anyway. However, the one major change that's been messing with me for the past 5 years is that my ability to handle mental and emotional stress has gotten progressively worse, rather than better. I can't seem to go a year without making a trip to a mental hospital. Medications just seem to lose their efficacy after a few months, and ECT left me at a loss for some of the most important memories in my life, and I'm terrified to risk that again. What's the use of being happy if you can't remember why you should be?</div>
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I know the reasons behind this are partly physically, partly psychological, and that the two are inseparable. I hurt myself. I'm broken and very likely can't be fixed, although--if I'm being really honest here--I haven't exactly been trying for the past year. Earlier this year, we drove 4 hours to Pittsburgh for an interventional radiology appointment, which we were informed was cancelled for me only when I had already checked in and filled out all the necessary paperwork. I was so frustrated by that that I think I just gave up. I spent three full years constantly focused on improving the pain, so much so that there wasn't really room for anything else in my life. I've made that room by pushing my medical concerns aside, but they still occupy a great deal of my emotional resources. My goal now is not so much to be pain free, but to be at a level of pain where I can still do the things I love to do. I want to dance again, on the floor and in the air. I want to be able to jump and land without feeling those painful vibrations throughout my torso. I want to be able to do simple things like make the bed and pick things up off the floor without holding on to something. I've gotten pretty good at avoiding tasks and working around my limitations, but I'd rather work through them. I want to feel useful. Even though that shouldn't be a requirement for a fulfilling life, it is for me. As I've said many times before, I want to stop feeling like I'm weighed down, both physically and otherwise. A little pain doesn't bother me, but there's only so much that one person can take. </div>
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<br /></div>
<div>
I fear that these physical limitations will only worsen if I keep up like this. I do a pretty good job of managing what I can by staying in shape, by keeping my muscles strong and functional, but I'm starting to feel like that's not enough. I've lived here over a year and still don't have a PCP. I also may not live here by this time next year. I feel like I've been hiding from life, sometimes by choice, sometimes not. </div>
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<br /></div>
<div>
I'm applying to grad school for the second time, but this time, my options are located all across the country. We're still working on what happens if I get into a school somewhere else and Jackson gets a different job at the agency. I've written before about my fears regarding my ability to handle the intensity of a graduate program, so I won't harp on that for too long. There's another possibility that terrifies me, though. What if I don't get in at all, again? What happens with my life? What direction will I take, and would there be any point in trying a third time with little chance of gaining any extra experience? I think my mind is already preparing me for that mental breakdown. The last time I received those rejection letters, I had just moved to Pittsburgh, ready to start a new life in a familiar place. I entered a new relationship a few weeks after moving there. Within a few months, I was in the psych ward again, and I haven't really had the time to stop and think about life for very long since. There was my injury, my medication-induced psychotic break, moving every 6-8 months, his cancer, his dad's cancer...It just never stopped. So I kept moving forward with life, without really knowing when I'd be able to stop and think about what I wanted it to be. </div>
<div>
<br /></div>
<div>
I spend a lot of time alone these days, working from home. I've had a lot of time to think about grad school given what I do now. This is also the longest I've held any kind of job without having to quit due to overload. I know this is the right path for me. I'm just hoping that it's not too late for others to see that as well. I'm hoping that, yes, the best will be to come in this next decade of life.</div>
<div>
<br /></div>
<div>
It's been almost 10 years since I began my transition, since I first posted a video in March of 2009 crying my eyes out about how much harder my life was about to get. While it's hard to believe that parts of college were over 10 years ago, I remember many things pretty clearly. For the other stuff, it's probably best that I don't remember it. I remember seeing my chest in a binder for the first time, my first drag show, the beginnings of HMH and TransPride, the places I lived and the people who came to know me. Many of them have long since moved on from Pittsburgh, with more and more leaving as time goes on. Most of the people that made Pittsburgh home for me are gone, but there are new faces, and I'm the one they look up to now (or despise, with no in-between). Pittsburgh will always hold a special place in my heart, and I frequently feel drawn back, and I can't always explain why. Cruze is closing in a few weeks, and that itself feels like another nail in the coffin. </div>
<div>
<br /></div>
<div>
Last month, I got the chance to do something few people will ever get to do. I became the first completely pre-op trans man to model for Andrew Christian. I still can't believe it. It still feels unreal. I was supposed to do an AC fashion show at the end of the month, but due to some issues with overbooking models (or so I'm told), they pulled me since I was traveling the farthest. I spent very little time in LA, but it also felt like home, but in different ways. It had that new-home feel. It felt exciting. Full of opportunity, but a bit overwhelming at times. I still don't know where I belong, and I expect that it will change throughout my life. I still miss my friends. I long for us to be together again. I've figured out that that's what they mean when they say the "good old days". Things were a lot simpler overall, and we were all in the same place trying to navigate our lives. We celebrated our victories and mourned our losses together. I hate to feel these connections slipping from me. I guess this is growing up.</div>
<div>
<br /></div>
<div>
It's late. I'm about to head to the gym after being sick for over a week yet working non-stop. Sometimes, it feels like that's all I have to keep me sane and out of the house. I don't know where I belong, or what I'll be doing 5 or 10 years from now, but I want to be in a place where access to like-minded people isn't so limited. I want to be in a place where I feel in control of where and when I go, even if I never learn to drive myself, which seems more and more likely every time I think about it. My issue is that, until I feel more emotionally and mentally stable, it's hard to tell which options would be best. Here's hoping that this next year of life brings me the answers I need, or at least sets me on the path to finding them.</div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-29258387154247120722018-08-01T21:46:00.003-07:002018-08-01T21:46:40.118-07:00LA Trip: Still ProcessingI haven't quite fully processed the past week, which seems like it's lasted a full month. Last Monday, I flew out to LA to be part of an Andrew Christian photo shoot--the first non-op trans man to do so. My level of comfort fluctuated throughout the day. Despite AC being an internationally renowned underwear company, it was a nude photo shoot, some of which involved some pretty neat underwater photography. At the end of this month, I'll be doing an AC fashion show in Columbus. I met Andrew last week, and I'm told he'll be in Columbus as well. Is this real life?<br />
<br />
I'm insanely proud of myself, yet I still feel like I could have been in better condition. I still feel terrible about my body, but I think that's been changing, even over the past week. I can't describe how comfortable I felt on Tuesday. I never thought that word could describe me, completely naked and surrounded by a full crew, experienced models, and three other trans men who have already had top surgery. My comfort wavered a little during the day, but something about the experience felt so natural. Holding a conversation while naked seemed to get easier as the day went on too.<br />
<br />
Like I said, I'm still processing all of this. I'm still working on my body image issues. If that were all that's going on, I might be further along. I managed to do something else that's been terrifying me for months: I asked people to write letters of recommendation yesterday. Applications don't open until September 1st for most schools, but I want to stay ahead of the game this time. I want to have enough time to tailor my statement to each school. Plus, I need to have my shit submitted by mid-November to avoid having to take the GRE again.<br />
<br />
These are two big fucking things right now. Then there's drag, my schedule for which is about to get a little crazy come November, when I travel to Memphis to perform.<br />
<br />
I'm waiting for my phone to charge enough to go to the gym. Not only am I preparing for this fashion show, I'm trying to keep my mental health under control given the stress of life in general. They recently doubled my dose of Abilify, so tracking these next few weeks is going to be important. I'm still having a lot of focus issues, and I'm starting to consider asking for help with that again. I'd finish work much more quickly if I could stay on task for more than an hour at a time. I'm used to being the kind of person that doesn't move for 8 hours, so not being able to maintain focus is really weird to me. It's been about two or three months of that, and I can't exactly figure out why.<br />
<br />
I'm actually surprised I've maintained enough focus to write this, though I still feel slightly distracted.<br />
<br />
I'm going to try to readjust my sleep schedule again, which feels like fighting a losing battle every time. They took me off the medication that was supposed to help me fall asleep because, as always, it stopped working very shortly after I started taking it. Even when combined with an antihistamine. Then there are the times when I sleep for almost 2 days straight. I haven't even been able to figure out a pattern.<br />
<br />
I'm starting to ramble. Maybe I'll be able to get more out later this week.<br />
<br />
Oh, there's one more thing.<br />
<br />
I turn 30 on Saturday.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-79840191036875565732018-07-16T19:33:00.001-07:002018-07-16T19:33:36.699-07:00NopeI'm not okay, and all I want to do is wake up up, even though I know there is nothing you can do to help me. I just can't stand being alone with my thoughts right now. I am overwhelmed to the point that I can't do anything that I actually enjoy anymore. I'm trying to survive this, but all I can do is get up and work. I have nothing left, and there's no reason for that other than it's just how I am.<br />
<br />
I can't even get the rest of this out. I just need to go lie down.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-21881721046340726592018-07-06T01:24:00.000-07:002018-07-06T01:24:07.836-07:00Potato Tonight is one of those late nights alone that has my mind pulled in about fifteen different directions, each one needing more attention than I have spoons to give at this point. I just got back from the gym, so I'm filled with the overwhelming desire to do everything yet too overwhelmed and unfocused to get anything done. <div>
<br /></div>
<div>
I'm hoping to apply for grad school this fall. I haven't taken the GRE again. I've only briefly talked with the people I hope to have write my letters. I haven't even begun studying. I'm terrified that I won't do as well this time since my brain has been fried. I'm terrified that I won't get in. I'm essentially paralyzed and can't make any more progress. I'm even terrified of making the list of things I need to do. And I'm not sure what things need to go on it and what things don't. </div>
<div>
<br /></div>
<div>
I don't want to screw this up again. I'm worried that I'll never get another chance.</div>
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Or that that third chance won't even be worth taking.</div>
<div>
I'm worried that I won't be able to handle the environment during or after school.</div>
<div>
I'm worried that my journey has to end. </div>
<div>
<br /></div>
<div>
I know all of this, yet I still can do nothing. </div>
<div>
The guilt of being so out of control just exacerbates the problem. </div>
<div>
<br /></div>
<div>
What's more is that I feel like I've failed my fiance again because I never feel like I'm good at helping in certain situations. No matter what I try, nothing seems to work. I just want to give you the right answers. To solve everything. But I can't. And I hate it. </div>
<div>
<br /></div>
<div>
It's so quiet. </div>
<div>
I have a photo shoot Saturday.</div>
<div>
I have a show Sunday. </div>
<div>
<br /></div>
<div>
I need to make time to study. To set a date for this test. </div>
<div>
<br /></div>
<div>
Do you see what I mean? </div>
<div>
<br /></div>
<div>
I know I can do this, so why am I so stuck? Mental health, you nasty bitch. </div>
<div>
<br /></div>
<div>
Also, </div>
<div>
I think I just got four more mosquito bites. </div>
<div>
<br /></div>
<div>
I don't know how to explain the feelings I have right now. Of love. Of loneliness. Of fear. Of confidence. Everything tends to happen all at once, or to come in waves, which sometimes takes me from high to low and back again in a matter of seconds. It's dizzying. And the fear that that will never end...well, the knowledge that, yes, it absolutely will continue for the rest of my life and there's nothing I can really do to change that, sucks. </div>
<div>
<br /></div>
<div>
I don't want damage control to be the story of my life, and I feel like it has been for a while. </div>
<div>
I want my thirties to be different. </div>
<div>
That feels weird to say. </div>
<div>
I still feel 12 years old. Just as confused, if not more. </div>
<div>
A friend and I figured out that secret a long time ago.</div>
<div>
Everyone is just faking it. No one knows how to adult.</div>
<div>
No one knows what the fuck is going on, and we're all secretly waiting to be found out. </div>
<div>
<br /></div>
<div>
Work has taught me how to fake it until I make it. I just submitted a project proposal for a chance to work on a neuroscience portal for a major pharmaceutical company. They asked me to do it, and after a few rounds and 6 pages of absurd detail later, I did it. I had not one clue what the fuck I was doing. But I learned. I frequently have to work on papers outside my area of expertise, and google scholar has become my best friend. </div>
<div>
I also just killed a mosquito. So two wins for me, I suppose.</div>
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<br /></div>
<div>
That's my story. Constantly feeling somewhere between "I'm actually really good at what I do" and "I'm a talking potato".</div>
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<br /></div>
<div>
But maybe someday I'll be a potato with a PhD. </div>
<div>
<br /></div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-86389720187408556662018-06-27T01:33:00.000-07:002018-06-27T01:33:07.879-07:00Musings on Exercise and Brain FunctionWorking out has saved my life more times than I can count. The chaos of Pride, my fiance's new job, and a full performance schedule until pretty much the end of the year caused me to lose focus on my workout routine. Day by day, I became less and less capable of functioning. More and more things started to feel overwhelming. Then one day, I was barely able to breathe without screaming. I couldn't avoid the thoughts of ending it all just to stop feeling that way, despite my seemingly contradictory existential death anxiety, which likes to creep in at random times throughout the day and night. It only took about two weeks for me to get to that point. I knew going to the gym would solve my problems almost instantly, but I was too far gone to make it alone. <div>
<br /></div>
<div>
He sacrificed sleeping that night to go with me. He gave himself a migraine just to pull me out of the darkness when I couldn't do it myself. I don't know how to thank him for all the ways he shows how much he loves me. Words are never enough. </div>
<div>
<br /></div>
<div>
It's day 2, and the world already seems a little less terrifying. I feel more capable of taking on new projects. I'm less afraid of failing. That's not to say that these don't represent major obstacles anymore, but working out allows me to broaden my view of the situation so that I can find ways around them. </div>
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<br /></div>
<div>
This is what I want to study. I want to research how something as simple as lifting weights can fundamentally alter brain chemistry, structure, and function. Particularly in people like me. I've seen these effects in others too. I've heard story after story of how physical activity has transformed the way people view themselves and the world around them, and I've been fortunate enough to be the catalyst for change in many of these situations. Knowing more about the neural mechanisms underlying these changes will provide greater insight into brain function in general, and in various populations. </div>
<div>
<br /></div>
<div>
There's so much work to be done. For example, wouldn't it be interesting to compare the effects of resistance training to those of commonly prescribed antidepressants/antipsychotics, or the combination of the two? To cardiovascular training alone? In people with depression versus controls? What does the brain look like before and after resistance training? Does functional connectivity change, particularly in executive function networks? If so, can resistance training be implemented to help people with disorders affecting executive function? </div>
<div>
<br /></div>
<div>
The funny part about all of this is, working out is the only thing that is going to allow me to have the functional capacity to do any of this research. A few days ago, I thought about scrapping the idea of grad school altogether. If I could barely function doing what I do now, how could I ever manage the work involved in getting a PhD and finding employment in the field? </div>
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<br /></div>
<div>
I'm pretty sure these ramblings will find their way into my personal/research statement, which is definitely impersonal at this stage. </div>
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<br /></div>
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I'm starting to feel like I've got this. Who knew some lat pulldowns could be so powerful?</div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-56220622777942015052018-06-20T20:21:00.000-07:002018-06-20T20:21:00.704-07:00FailureI got halfway across the parking lot trying to get to the gym today. I broke down crying. Then I tried an hour later, and it happened again. Even though I have my medicine again, my anxiety has been worsening for weeks. I don't know how to fix this. It hasn't ever been bad enough to do this to me on my way to the gym. That's usually the one thing that can save me from episodes like this, and now I'm not sure what to do to fix things. I can't even stop my whole body from shaking right now. I want to tell myself that it's okay to not be okay, that I should stay home tonight and try to take care of myself so that I might be able to avoid this tomorrow. But what if I can't? I know I shouldn't be thinking like that, but if you can tell me how to prevent my brain from doing what it always does, you're much better at this life thing than I am. I already feel like most people are. Maybe they're just better at hiding it than I am.<br />
<br />
I want this to stop. I hate this. I don't even have much to say, but I needed to do something to keep myself from screaming and waking my fiance. I want to run away, but I have nowhere to go. I may try one more time tonight, but even that thought is making things worse. I've already failed twice, and I can't get it out of my head. I can't stop the physical feelings, which are just making the screaming inside my head worse. How do other people do this?<br />
<br />
For the longest time, I had no idea that people didn't deal with these overwhelming feelings of anxiety. With constantly feeling on the edge, terrified, and overloaded. I've never NOT been this way. I understand neurotypical people about as much as they understand me.<br />
<br />
If I can't go, things will just get worse. I know I won't be able to handle this right now, so that means they are going to. I need to figure out something to do. I don't think I'll be able to stop myself from screaming, and that's even more terrifying.<br />
<br />
I want to keep writing, but I have nothing.<br />
<br />
I'll never be able to overcome this. This will always be a part of me. And I feel like I'm destined to fail at everything because of it.<br />
<br />
I'm surprised I'm even still here.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-22250997443109348702018-06-19T18:28:00.002-07:002018-06-19T18:28:42.317-07:00Post-pride depressionPride 2018. I'm still trying to mentally recover from the weeks of exhaustion, which were well worth it at the time and may still be. I'm just having a hard time readjusting to the real world, where I spend much of my time alone with my thoughts. I had forgotten what it was like to be able to spend time with friends every few days rather than every few months, but I had also forgotten to take care of myself during my visit to Pittsburgh, which made things more difficult after returning home. Post-pride depression is one of those phenomena that deserves further research. I keep seeing posts from friends who also seem to be struggling with mental health issues right now.<br />
<br />
I don't know how to explain it to some people. That feeling when you know you need to do something, when you actually really want to do it, but your brain and body just refuse to let it happen. The guilt you feel when you can't do something simple for yourself then just makes it even worse. It's hard to escape the cycle, and it's even harder when you've already got to deal with anxiety, intrusive thoughts, and an overwhelming desire to scream and cry for no reason. It's not easy to separate these components in the moment. Sometimes you feel it all at once. You freeze because the alternatives are much, much worse.<br />
<br />
This is the second time I've run out of medication without being able to get a refill. I'm again trying to fight hating myself for not being able to survive three days without these pills. I'm also trying to fight hating this mental health agency, which is pretty much the only option down here. Therapy at this place hasn't been very helpful at all. Every session felt more like small talk with a stranger.<br />
<br />
My fiance has a new job working for the government, which is all I'm allowed to know or say. The days are long for him, but they haven't changed much for me, and maybe that's contributing to my depression. It's nice to spend nights together, but I'm at a point where I feel numb most of the time that I'm not feeling down. I had a few manic moments today when I started listening to music, pacing the floors in excitement, thinking of all the things I could do for an upcoming show. It was a helpful distraction, but it was short-lived.<br />
<br />
I'm getting more worried about grad school. About whether this is something I'm even going to be capable of doing, physically and mentally. Taking a week off for Pride means I have to push myself a little harder these next few weeks. My productivity pretty much stops after 6 hours. It's hard to believe that anyone would ever hire me given that kind of stipulation. Feeling like this is as good as it will ever get is also pretty depressing.<br />
<br />
Then there's that whole existential death anxiety thing that invades my consciousness, often multiple times a day. It's absolutely terrifying, and sometimes it makes it hard to even get the motivation to do anything. Other times, it just paralyzes me in a way that I can't fully explain.<br />
<br />
I just want to make it through this and feel okay again. Then I can work on feeling happy. I know what my brain is doing to me. I know why most of this is happening. But it doesn't make it any easier to handle. It doesn't make me more capable of getting out of this place.<br />
<br />
I've been preparing to go to the gym for over an hour. But I know this is one of the few things that can help snap me out of this. I just need to be able to leave my house without crying. Even thinking about it is making it hard to breathe. I wish I had someone to go with me right now.<br />
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Breathe. It's okay. It's okay to not be okay.<br />
Nothing worth having is ever easy.<br />
<br />
And nothing seems to be working right now.<br />
But I'm still going to try.<br />
<br />
<br />Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-69673746373347209252018-05-12T10:26:00.001-07:002018-05-12T10:26:32.188-07:00Mental Health, Abuse, Surviving The last few months of my mental health journey haven't been the greatest. I started feeling worse and worse, to the point that I decided not to refill my medications once they had run out a few weeks ago. I was fine at first, but it wasn't long before things became more and more difficult to do. Then, one night, my mood dramatically shifted in the negative direction, and I just crashed. I essentially didn't move from bed for 10 days. I've been back on my medicine for about 4 days now, and I'm only just beginning to feel like myself again. With major events coming up in just a few weeks, this has been one of the primary drivers of my anxiety/depression. I'm beginning to feel like I'm in control again, and I just hope I haven't lost too much time.<br />
<br />
I don't feel at liberty to discuss the details of recent events. All I can say is that a long-term abusive situation almost ended in murder. Watching history repeat itself has been so difficult, especially when you've been made out to be the villain. But watching their strength in claiming the label of survivor, in moving forward and beyond the pain and years of manipulation, is inspiring. Rediscovering yourself is not always easy, nor is it painless. Abusers know how to control your emotions. They study your responses over time and learn how to get what they need from everyone involved. They will try to claim victimhood, to escape responsibility and consequences in an effort to get back to how things used to be--to their version of "normal". It takes strength beyond measure to disengage from a toxic, even dangerous relationship. You (plural) have that strength, and you have a family to support you.<br />
<br />
As before, I will always stand by those who have survived, those who have escaped. I will always tell the truth for those whose voices have grown too tired, especially when others aim to silence you. Not only will you continue to survive, you will thrive as you rediscover your true self and the love with which you are surrounded. And we will do whatever it takes to help you when you need it most, when you feel like doubting yourself and your decisions. You are my friend(s). You are family. We will never abandon you.<br />
<br />
I have more experience than I care to discuss right now. Even now, I wait for a day I feel will never come. When she finally has had enough. I wish I could say more, but it's been made clear that it's not my story to tell. I have to fight back tears when I think of what could have been for one of the most important people in my life.<br />
<br />
I guess the point is that I haven't just seen or heard.<br />
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I know.<br />
<br />
I may have what some people consider extreme reactions to anger. I just want to point out that I'm on high alert for a reason. It is by this point a built-in response mechanism, and I have little control over how terrified I appear. Interestingly enough, when someone directs that anger toward someone I love, my response is markedly different. I like to think that explains what kind of person I am without having to do it in so many more words.<br />
<br />
I posted this here for a few reasons. Trigger warnings aren't my thing, but I can draft a title that gives people the option to avoid the subject, even temporarily. I needed to do this for myself as much as I did the people I love. I have a lot of my own deeply buried issues to deal with, and I'm sure I'll need to revisit this in the future. But, right now, it's not about me. It's about everyone who has ever lived through abuse, about those who have escaped and those still trying to find the courage to. I refuse to contribute to silence surrounding domestic violence. I refuse to let the abusers win. That's something we can't do alone, and I've seen such a tremendous outpouring of support in the last few days. It makes me feel confident that this ending marks a new beginning. That we will see that light shine again. However, there is still someone out there who needs that same support from the community. Friends, please don't hesitate to reach out to them as well.<br />
<br />
My brain is doing that thing where it's going to circle back around. So, I will leave with this:<br />
<br />
https://www.poetryfoundation.org/poems/46446/still-i-rise<br />
<br />Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-74746046503368029022018-02-12T01:13:00.001-08:002018-02-12T01:13:06.862-08:00Bipolar. I'm in a weird space right now. Earlier today, I came to the realization that maybe my getting better was really just a hypomanic episode, since I've been on a bit of a downward spiral for the last couple weeks. Others tell me that this depressive episode is the anomaly, likely because they're trying to make me feel better. Unfortunately, most people with my type of bipolar disorder are depressed more often than not, with episodes of hypomania at varying frequencies. There is no getting better here. There is only managing, and I've never quite been able to do that for very long. I'm worried that I'm starting to repeat the cycle, and I don't know what to do to keep things from getting worse.<br />
<br />
I fear that I will never function well enough again to do the things I want to do with my life.<br />
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That fear itself is paralyzing. Why try if I will never be a functional member of society? If I will never be able to go to grad school, have a family, etc.?<br />
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I fear that the only response here is to increase my dose of lithium, which may be the cause of my months-long gastrointestinal issues after all.<br />
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I know things are getting bad because I notice myself taking longer to get myself ready to do anything. I feel disconnected and demotivated most of the time. The flashes of motivation sometimes last only seconds, and this tug-of-war is exhausting. I'm not making phone calls. I'm not talking to anyone or making plans. I know what's happening and feel powerless to stop it.<br />
<br />
I don't want this to be my life. To be my forever.<br />
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Help.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-89694686908657988342018-01-27T19:29:00.003-08:002018-01-27T19:29:53.286-08:00LimitlessI was going to wait on this until I had heard back from Jason, but here is the piece I submitted to FTM Magazine's online publication. We were asked to describe what masculinity means to us:<br /><br />"It’s three in the morning, and I just got back from the gym. Like so many men my age, I couldn’t help but snap a few selfies in the sauna after a particularly intense and productive workout. I’d been sick for two weeks prior to this evening, so I didn’t expect to feel so proud of those pictures. But then I saw them, and I became enveloped in emotions I had almost forgotten I could experience. Those pictures took me back to the day I got my first binder, when I stood looking in the mirror with tears in my eyes, as it all came together in my head: “This is how it’s supposed to be.” I saw my chest in a new light. I had finally come to see the physical progress to which I am so often blind—a phenomenon I’m told is experienced by numerous trans men. Is this what masculinity feels like? Yes…and no.<br /><br />I feel lucky to live in an age where the queer community has come to embrace the notion that gender—and, by extension, masculinity—is limitless. Most of us, however, grew up with a different definition of masculinity. Hegemonic masculinity, which refers to the social construct that seeks to maintain men’s dominant position by reinforcing the idea that women and “non-masculine” men are inferior, has shaped our perceptions of manhood since our first breaths. As a young child, I rejected femininity wholeheartedly, seeking to distance myself from women and girls as much as possible. I prided myself on my traditionally masculine attributes: my strength, my appearance, my manner of speech, and my distaste for pink, among others. Transition was my gateway to freedom of gender expression. Although I did spend some of my early days in transition trying to prove my masculinity, the simple switch of pronouns was enough of a spark to allow me to embrace some of my more feminine attributes. Even before starting testosterone, I suddenly found myself attracted to the color pink, and it finally felt okay to express myself in “non-masculine” ways and media.<br /><br />Today, I define my masculinity as limitless. I am masculine. Therefore, anything that comes from me is by extension masculine, whether I am flexing shirtless in the gym or dancing in a corset and four-inch heels. I’m constantly re-evaluating my gender in the context of the world around me, and I’ve even come to question this definition, which essentially states that gender labels are arbitrary and meaningless. If we lived in a social vacuum, perhaps that would be sufficient. However, some parts of me feel that this argument still seeks to reject the feminine pieces of my soul. Learning to be okay with being labeled feminine has been a huge step forward for me. It is an aspect of the gender revolution that should be the key focus of men who wish to support the movement: You cannot fight for true equality if you continue to distance yourself from women and the feminine based on arbitrary standards. Perhaps then “limitless” for me means that I am masculine, I am feminine, I am all that lies between and outside of these terms, and I am so much more than any descriptor of my gender can ever convey.<br /><br />I see so many young trans men fighting for their place in this world, pursuing the ideals of hegemonic masculinity in order to prove their manhood. I want you to know that gender is not a mathematical concept whereby increases in your femininity detract from your masculinity. Femininity is not the opposite of masculinity. When I think of terms typically <br />associated with masculinity such as strength, courage, and confidence, I cannot envision a feminine person alive today—particularly when thinking of trans women—who do not possess these attributes in one way or another. The same is true when I think of traditionally feminine attributes or descriptors (e.g., soft, vulnerable, emotional). These parts exist in every masculine individual, and a healthy outlook on life involves acknowledging and channeling these aspects, and using them to improve upon yourself.<br /><br />At some point during transition, you realize that regardless of how much work it may have taken, your true identity is the one that feels effortless—the one that prompts the least internal resistance and frees you from those feelings of fear and inadequacy. As the high of beginning your transition wears off, you will settle into yourself and realize that your identity may have evolved since the beginning. Once I transitioned, I felt less and less compelled to adhere to the standards of hegemonic masculinity. I no longer felt like I had to play catch-up by overcompensating for my femininity. My masculinity is now inseparable from my femininity, which I have embraced wholeheartedly. It is a lightness unlike any other to know that your soul is no longer divided."Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com1tag:blogger.com,1999:blog-2925964181189819417.post-7248246147441168732018-01-26T00:56:00.000-08:002018-01-26T00:56:03.419-08:00Random Musings on GenderI wanted to write, and to write something meaningful. But that’s just not happening today. The burst of creativity I felt while reading the final book by Oliver Sacks—who helped fashion me into the type of neuroscientist I am today, with my penchant for provocative language, for writing scientific material with as much flair as any novelist—suddenly seemed to vanish as soon as I placed my fingers on the keys. It’s getting more and more difficult to write by hand, as the thoughts seem to flow through my mind ever more quickly, and I am limited by the confines of the human motor system. So, let’s try this. <br /><br />I’ve recently seen so many posts from trans men undergoing phalloplasty, prompting me to examine my own feelings regarding my genitals, which many people would regard as the basis of my transness. Indeed, that’s all so many people seem to focus upon. While I’m not necessarily thrilled about my overall anatomy, my genitals have always kind of been irrelevant to me. What I have works, and it’s never been particularly important for me to even have the appearance of a penis, except maybe while performing traditional masculinity on stage. I tried packing a few times early during transition, and I could never get comfortable doing so. <br /><br />To me, the essence of transness is the understanding of your social otherness, which isn’t necessarily rooted in anatomy. As a child, I gravitated towards not just the masculine, but to other boys. I longed to be with those like me, even though I had a keen understanding of my difference from an early age. This gravitation had nothing to do with genitals, secondary sex characteristics, or the desire to change my body. This was a young boy simply trying to be a young boy in a world desperate to manipulate him into becoming a girl. The fragility of hegemonic masculinity may explain so much of the fear surrounding transness. When your entire identity is based around having a penis, encountering a physically and emotionally strong man with a vagina means having to confront the notion that your entire understanding of gender—and of yourself—may be flawed. Rather than facing this reality, most cisgender men never fully examine that fundamental question: What is manhood without your “manhood”? <br /><br />As I’ve mentioned previously, my masculinity is something I define as limitless. My gender as limitless, encompassing both the masculine and feminine. Even in accepting the feminine components of my gender identity, I see these as irrelevant to my anatomy, firstly because it does not make sense to me to categorize parts of my body using gender terms. That is, having a vagina does not make me any more or less feminine (or masculine) than any other person. It’s simply a part of my body, like an ear or a toe. While I view my chest in the same way, I can never fully feel like it belongs to me. This part of me DOES feel foreign and grotesque most times, and there is not much I can do to change that. No amount of desensitization training will ever make these two lumps of fat feel like they are a part of me. Again, this has nothing to do with masculinity for me. I don’t feel like less of a man because they are there, unless you count feeling irritated that only trans men who have had top surgery seem to be considered valid, even within our own community. I just don’t want them there, although they have no bearing on my identity at this stage. Perhaps this is because it has been almost 9 years since I first came out as trans. My perception has shifted over nearly a decade of living as a trans man who has never been able to afford a name change, let alone surgery. The severity of my dysphoria has largely dissipated, as I have become so much more comfortable with myself, as I have reached the stage where I can simply focus on living my life. On being, rather than on transitioning. <div>
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Make no mistake, I believe that transition never truly ends. I am constantly re-examining my gender in the context of the world around me, and for this I am grateful. Perhaps that is what has allowed me to evolve to this point of separation between body and identity. Yet there is somewhat of an internal conflict here, as my body is by extension masculine, since I am masculine. The choice of words seems arbitrary these days. I could just as easily say that I am feminine. I could look exactly as I do, behave exactly as I always have, and just as easily say that I prefer feminine pronouns. The point here is to use what feels right. It’s such a simple concept, yet we complicate it by trying to tell ourselves that our anatomy defines our gender, or the ways in which we can even express or embody transness. Once you separate identity from anatomy and biological determinism, things suddenly get less complicated. <br /><br />“What if I wanted to identify as...?”<br /><br />Barring any ludicrous options designed to pick a fight, the answer is always the same. Don’t make it any more difficult than it has to be. You are allowed to exist. Always. <br /><br /> <br /><br /> </div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-33733347980139036652018-01-21T17:35:00.003-08:002018-01-21T17:35:10.917-08:00Clarity<br />I'm the kind of person who gets terrified when I receive private messages because it's really difficult for me to figure out how to respond, especially if they include compliments. I agonize over it for days or weeks before I respond sometimes, no matter the content of the message. As I try to figure out how to do that social thing, my anxiety continues to increase as more time passes between the initial message and my response. It's kept me awake at times. Well, this sort of thing in addition to every other thing that induces extreme anxiety.<br /><br />Anyway, I just responded to like ten messages today, and you honestly don't know how proud I feel. It may seem like nothing, but being social is not something that comes easy to me. It's not that I don't want to or don't enjoy it, but the energy cost is high, and it takes almost all of my spoons to maintain my composure/overall impression in a social setting. I'm constantly analyzing the interaction, choosing the most appropriate response based on my analysis and my understanding of the other parties in the situation. It's a process that requires an intense amount of effort, particularly with new people or when there is small talk involved. One of the things I loved about the drag scene is that I could make friends so easily just by talking about a shared special interest, rather than nonsense.<br /><br />I've learned that alcohol helps in these situations because it reduces my anxiety, as well as the stimulation I receive from the environment (lights, sounds, smells), freeing up some of my reserves.<br /><br />There are some people in my life where none of this seems to apply. People with whom effort isn't required. People who know that I may say the wrong thing or nothing at all. People who don't just tolerate my weirdness and over-analytical nature, but who actually love me for it and want to be around me and my weirdness. I'm so grateful for these people.<br /><br />The past week, even though I've been sick as all hell for several, has been so different for me. It was just one medication change. One that I was afraid to even take due to the potential side effects. It's been a little over a week, and I haven't felt this kind of motivation or clarity in probably four or five years. I've broken down crying at how much time I wasted not being able to function, not being in control at all.<br /><br />I'm doing things that I love again, some of them for the first time in years. I'm making actual plans. I'm getting up in the morning. I'm talking to more people. I'm feeling connected again. And it's not killing me. I feel energized rather than depleted. And it's all coming down to one thing: With the help of a fantastic medical team (Johns Hopkins and EastRidge Health Services) working together, I am absolutely and finally ready to live again.<br /><br />Thank you so much to everyone who has been there for me in one way or another these past few years, even though I've been distant. I want you to know that it wasn't by choice. That I miss you. You probably don't realize how much I do miss you and care about you. I think about so many of you as I try to fall asleep at night. I just hope it's not too late to be part of your lives again. I love you.<br /><br />And, I can finally say without guilt or shame, I love myself. Thank you all again, and I'll see you soon.Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-28011578463394007862017-06-09T10:21:00.001-07:002017-06-09T10:21:32.253-07:00Three-page Letter to Doctors (a.k.a., I Have Had It, Officially)I am writing because I have some concerns regarding my treatment, and—as an autistic person—I feel most comfortable expressing myself in writing. As such, I may not have provided the most appropriate descriptions of my current situation at past appointments. Following the rhizotomy, I experienced severe pain at the site for approximately 3 weeks. Since that time, I have had no pain in that area whatsoever until 2-3 days ago, though it is intermittent and slightly different, which leads me to believe it may be associated with aggravation of problems in other areas. As I mentioned previously, the most severe pain occurs directly to the left and right of the vertebrae in my lower back, as well as right over the spine in the same area. This deep pain is accompanied by muscular pain most of the time, which ranges from tightness to a feeling of cramping. I also experience pain very far to the right and left (more intense towards the right), at or above the crest of my hip. This pain also causes the muscles in the area and in my side to spasm. Over the past year, the pain has seemed to worsen in these places, such that any bending, twisting, or sitting (or staying in any position for too long) causes dramatic spikes in pain. However, I am in pain all the time. The pain seems to be accompanied by a feeling of pressure. I feel physically weighed down in this region, and I feel like I cannot stretch to full extension. Chiropractic adjustments seem to help tremendously with relieving that feeling and the pain that radiates to the outer regions of my lower back. These also help with the pain around the center, though the effects do not last long at all (8-36 hours), and attempting to bend, twist, or move too drastically (which isn’t very much these days), will cause the symptoms to return.<br />
<br />
At my first appointment with Dr. Gerszten, I was told that the rhizotomy would be the first in a series of steps aimed at identifying the source of the pain, in the event that the treatment did not result in complete resolution of symptoms. When I was told that I was again being referring to another facility, this came as a shock. I’m unsure of what this means. Will this treatment occur in conjunction with these other steps, or am I being passed along again? I do not mean to sound harsh in this case, but it’s a very frustrating experience. I don’t think I have been able to express just how, but please allow me to try.<br />
<br />
The only things that have been able to improve my level of functioning in life—alleviate symptoms of anxiety, depression, overstimulation/sensory overload, intrusive thoughts, and many others—have involved physical activity. Previously, I was preparing to compete at the national level in bodybuilding. I have won several competitions based on my ability to dance. I have played sports for my entire life and built a career as a fitness professional while striving to achieve my long-term career goals. Over the last 2.5 years, I have watched my entire life fall apart. I spend most of my time lying in bed, unable to deal with the thoughts or find any way to stop them. (Medication is not an option. I have tried roughly 2 dozen in my life, almost all of which have resulted in severe side effects. The others blunted my ability to feel and caused depersonalization to varying degrees.) I cannot complete even the simplest task due to a severe regression of executive functioning skills, which is why I have spent hours every day since the phone call regarding the next step trying to write this message. Every task, even getting up to go to the bathroom, has become this arduous. I cannot do very many things myself. Until several months ago, I was able to go to the gym, albeit doing very basic workouts in comparison and requiring assistance to be able to move throughout the facility and lift things to the appropriate position. However, the pain in the central region of my spine has worsened such that this is barely possible, though I continue to try to do as much as I can, within reason. In addition to greatly improving my mental health, these activities have given purpose to my life. I have had none of that over the past 2 years. My entire life has been consumed with pain, just making it through the day. (I’ve also attempted various forms of therapy with no success, and I’m very familiar with the psychological aspects of pain.) Even at my best over these past 2 years, this level of functioning has been unacceptable because I am still incredibly trapped and dependent on others. I want to begin living my life again, and I’m worried about this next option.<br />
I do not want to attempt conservative treatment—lie in bed for 90% of the day—until others decide that I am old enough for surgery. Do the years until then not matter? Or the years I have spent barely leaving my house, losing my home several times, losing contact with friends because I physically cannot do anything with them, losing opportunities to advance my career or return to school? Even at its best, again, it has been unbearable. But I’m not the type of person to show pain on my face. I blame that on how I was raised and a general insensitivity to pain until it becomes life-threatening. (Example: I broke my hand in several places in 5th grade, but I kept skiing for three more hours before I told my teacher.) But I cannot handle living like this, mentally or physically. Even now, I don’t feel like I have adequately expressed the level of distress this causes.<br />
<br />
Some options aimed at identifying the source have been presented to me in the past: facet joint injections or rhizotomy (bilateral), another spinal injection, discogram, etc. I’m absolutely willing to undergo all of these, but I need to know the plan, its likelihood of success based on published evidence and clinical experience, and what happens in the event that the plan fails. I’ve also considered asking about Celebrex, as I know that the risk of stomach issues like I had experienced with other NSAIDs is lower. I have had several injections, undergone physical therapy three times, tried multiple NSAIDs, tried two anticonvulsants that both resulted in a reaction referred to as DRESS syndrome, have been through psychological counseling/treatment in various forms, and I just don’t know what else to try at this point. What else could give me my life back. And that is important to me: MY life. And that’s not a life of sitting around, watching movies, and the like.<br />
<br />
I do have some additional information about symptoms that might be interesting. When I have been able to make it to the gym, I squat using a weight belt, which I began doing 6 months ago. After squatting while wearing the belt, I’ve experienced a complete reduction in pain upon taking it off, which lasts 20-40 minutes. I do feel some level of pain if I attempt to move suddenly during these times, but I found this to be quite curious. The problem I have is that, even in pain, I can still do a 2-minute plank (down from 4 min since injury), and my abdominal muscles always outlast my back. I have attempted to do back exercises to strengthen these muscles as well, but the issue is not about form or weight. If not in pain, I feel confident that I could do everything I could before. However, I have been experiencing another symptom that I did not believe was related. I’ve been having pain in my very low abdominal area that extends to the groin on the right side, which seems to worsen with strenuous activity or sitting completely upright. This has been going on for 8 months, though I originally assumed it was related to the general abdominal swelling/discomfort I have had for about the same amount of time. I have been unable to make my appointments for an ultrasound, so I still do not know about this. It’s been difficult to leave the house, though I intend to reschedule soon.<br />
I apologize for the length of this message, but I do not feel that I have adequately explained how desperate I am, how incapacitating this is, and how much work it takes (physically and mentally) just to make it into these appointments or leave my house in general. Again, this is not acceptable to me, and I can’t continue living this way. If the best conservative treatment can offer me is being able to shower and walk down the street—and not allow me to do things I love—then this is not okay with me. I’d really like to discuss an actual strategy. Thank you for your time, and I hope we can talk soon.<br />
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Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-84683234430060614552017-04-21T23:38:00.000-07:002017-04-21T23:38:14.837-07:00Inherently Autistic Ranting (This should be the title of this blog.)<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Every time I try to write about my experience as an
autistic person, I fail miserably. I get overwhelmed by the very thought of organizing
all of that information into something palatable and succinct enough for
neurotypical people to remain engaged. Do I begin with my childhood, during
which my queerness and neurodivergence were all too evident to everyone but me?
During which I remained blissfully unaware that others did not experience the
world as I did, until—little-by-little—I learned the hard way that my way is
not the only way, that I am not always right, and that no one really wants to
hear me talk about Ghostbusters for three hours? Or do I start with telling you
about my here and now, about how the last several years have taken me to the
darkest corners of autistic experience—where most would have me stay—and
brought me back to one of the most fundamental lessons of my millennial childhood?
“You are awesome, and fuck the part of the world that dares to tell you
anything different.”<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I still don’t know where to begin, which I suppose is
in itself a very autistic thing. I remain stuck on the same idea, going over
the same list of pros and cons in my head <i>ad
infinitum</i>. Unless you give me a place to start. Tell me what you want me to
write about, specifically, and I’ll have a hard time stopping. Even to sleep. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Let’s just pick something and say fuck it.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Delayed understanding of friendship? Incredible
memory? Obsessive? Executive dysfunction? Speed reading? Visual thinking?
Experiences of abuse? Being erased? Feeling broken or inhuman? Intense
creativity? Comorbid mental health disorders? Well, fuck, here we go again.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I’m sure you’ve noticed a pattern here. Most of the
items on the list are inherently negative. Many of them conjure images in my
head that almost instantaneously lead to flashbacks of traumatic experiences—flashbacks
from which I can rarely escape, with or without help. Therein lies the problem.
Almost no one believes that there is anything positive about being autistic,
unless you count those who fetishize certain “extraordinary abilities”. I’m a
disorder. A disease. A sub-human creature who lacks the understanding necessary
to be treated on par with my neurotypical peers with regard to human
relationships, employment, education, and healthcare. I’ve been the subject of
abusive situations more times than I can count, often believing that I deserved
it because it wouldn’t happen if I weren’t like this, if I understood the
lessons they keep trying to teach me, or just because people like me need to be
treated that way in order to function in this world. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Even in trying to discuss my positive experiences as
an autistic person, my mind is invaded with intrusive thoughts about how absurdly
non-positive most such experiences have been. <i>[Experiences removed for the internet because I'm not ready for that.]</i> I try to remember,
experience, and feel happy things. Positive things. Even okay things. But they
are immediately tainted by these memories. I don’t even have to try. They’re
always there. I mean, I still feel horrendously guilty about shit I did 20-25
years ago. My emotions are almost always all-or-nothing responses. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I keep getting drawn back into endless conversations
about how I just don’t see things clearly, I’m misunderstanding something, or
about how it’s not worth it to try to talk to me “when I’m like this”. (You
mean always, then. Just because I can hide it doesn’t mean it’s not there.)<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">My mind doesn’t let go. It can’t. I’m trying my best
to be proud of who I am. What I can do. But these things are inevitably
overshadowed by past, present, future, and imagined negative experiences. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">It’s hard not to feel broken this way. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I want to be in a place where I can write a narrative
that isn’t going to evoke feelings of pity or make people really glad they aren’t
me. Each time I think that I’m ready, I’m not. But maybe I can try.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I am an autistic person. I see the world in ways you couldn’t
fucking imagine, from the intensity of colors and sounds to the images and
thoughts that move too fast for words to the being logical to a fault.
My experience in this world is not one of deficiency. I am not lacking something
essential that neurotypical people possess, for if I were to define any of
those qualities as essential to my being a complete person or even a person in
general, I would inevitably be denying my humanity and that of others like me.
I would be justifying the abuse and manipulation of autistic people. The myriad
research papers that describe me as a burden to my family, “caregivers”, and
society in general. I am a scientist considered by science to be incapable of
acceptable existence, whose self-awareness is regarded as pathological in
someone like me but as an example of “practicing mindfulness” in others. My
experiences and words cannot be trusted. I cannot be trusted. I am invalid. I
am inhuman.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Take your blue ribbons and shove them up your ass. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I don’t need your fucking ribbon. I don’t need your
awareness. Like, you can be aware that you’re hungry, but unless you do
something about it, you’re still going to be hungry. </span></div>
<div class="MsoNormal">
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<div class="MsoNormal">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I need you to listen when
I tell you that, no matter how many times I force myself to go out when I’m on
the edge of a meltdown—whether I successfully avoid one or not—it’s never going
to get easier. I can break your fucking leg a dozen times, and it’s not going
to get any easier to walk on a broken leg. In fact, the more I do that to you,
the more problems I’m going to cause, and they’ll likely last quite a long
time. I need you to just accept that I have to do things my way sometimes or
they’ll never get done in any reasonable amount of time. I need you to stop
asking me the same questions or wanting to explain the same reasons for things
over and over again, like you’ve never heard me mention them before. I need
employers to understand that you should judge people based on their
qualifications for the job, rather than based on how much fun you have talking
to them during the interview. I need society to stop equating the worth of a
human being to their productivity or palatability. “You can’t make money for
us, so you deserve to die.” “Your life isn’t worth living if you can’t amount
to anything.” I need people to stop thinking that asking kids with disabilities
to the prom out of pity when you have no interest in pursuing a relationship
with them is manipulative, self-serving, and cruel. I need doctors to stop
screaming at me. Or talking about me like I’m not even in the room. Or ignoring
my concerns. I need people to start caring about autistic people once they aren’t
cute little kids anymore.</span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">I need people to stop thinking that my right to exist
comfortably and be a part of this world is my fucking problem. That I have to
earn my right to be treated well. To not be subjected to pain, isolation, etc. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">No, I don’t need people to understand that “we’re all
the same”. I need people to understand that we’re all fucking different and
that this is actually okay. I don’t need to have my unique experiences erased
or glossed over to be considered human. I need people to stop being shitty
assholes that think that the world shouldn’t be welcoming to as many people as
possible. I need people to stop believing that, if only I weren’t autistic, I
could have all these things that other people have. To stop believing that
being in a relationship with me is a favor. A gift. A miracle. That loving me
is a sacrifice. That I’m lucky no matter who dates me because I’m lucky to have
anyone at all. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Fuck you. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">This could go on for quite some time. I meant it to be
a bit more organized. Intellectual. I meant to use more clever phrasing and
take my time. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;"><br /></span></div>
<br />
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<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 107%;">Instead, I needed to be angry and let you know that I
don’t need you to decide whether my anger is justified. That you don’t get to
decide that, and I wouldn’t care either way. <o:p></o:p></span></div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-90877217739500946302017-04-05T08:49:00.003-07:002017-04-05T08:49:47.387-07:00April-ingI can't believe how long it's been since I've written anything here. Most thoughts have been shared in posts on Facebook or stored away in my phone. I felt the need to write, but nothing's coming out right now. I worked on an article about the potential ability of scopolamine to treat depression.<br />
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For some reason, I'm assigned a lot of articles about mood disorders and back surgery. The universe is ridiculous.<br />
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This is as far as I've gotten today:<br />
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"I'm taking the month of April to get caught up on not getting caught up in my own head, to write more, to reach out to those with whom I've lost touch just trying to keep afloat.<br /><br /><br />To my friends who have been patient and have been there waiting, thank you for your understanding. To those who have forgotten about me and those that wish I would be less vocal about my ongoing struggle, I express my disappointment, not anger. I may not be the face you think of when you think of autism, chronic pain, or chronic health problems, but that is entirely why I share so much. People deal with far more complex issues than they let others see. I desire a world in which people are free to share what hurts and heals them, rather than feel ashamed of being human.<br /><br /><br />This world is more than selfies, good reads, and bitter queens. I want to share my soul, and I want to see yours.<br /><br /><br />You see, I've always felt that the voice I use when writing is my real voice. Everything else is an approximation. An imperfect translation. The written word is the first way I learned to connect with myself, to reflect and learn to deal with a world that could never understand how I'm wired. I can feel more emotion in perfectly placed punctuation than in trying to decipher the sadness in a stranger's face. This is how I am able to think. To love. I feel the rhythm of the written words, but not the spoken words.<br /><br /><br />Not writing feels like having duct tape over my mouth.<br /><br /><br />We're not what or who you think we are. Then again, that's usually how it works."<div>
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Whether or not I follow through with anything is up for debate. I've felt nauseous and fatigued for several days. I need to sleep. </div>
Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0tag:blogger.com,1999:blog-2925964181189819417.post-51387349253771660182016-10-29T11:56:00.001-07:002016-10-29T11:56:21.364-07:00Synopsis of 2014-2016 I suppose it's fitting that some positive news come my way after my most recent post. I wasn't exactly hopeful when I arrived at the Sports Medicine complex. The doctor was extremely thorough, and he listened to every word I said about my pain, moving my legs and hips from position to position to be sure he understood exactly where it hurt and how it felt. When he pulled up my images, he noticed the disc herniation had actually occurred on my left side, which wouldn't be causing this kind of pain in my right SI joint, thereby confirming what I've been trying to tell doctors all this time--that this pain doesn't stem from the disc problem at all. <div>
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The injection occurred the following morning at 7:45 AM. Since we had to travel from Cranberry to Wilkinsburg, I didn't sleep at all. Within minutes of receiving the anesthetic, the pain had dramatically improved, though some pain was still present, and I did begin to notice a less intense pain in my left SI joint as well, which does make sense. However, I did not feel the steroid injection like I did last time, which makes me believe that the last doctor did not, in fact, inject the medication into the proper area. The anesthetic has largely worn off by now, and I won't really know the extent of improvement from the steroid for another week or so. I'll also be seeing a chiropractor, which I've been told is extremely helpful for adjusting the SI, and starting an intense round of focused, physical therapy. Having pain in both SI joints and some narrowed spacing in my spine concerns me, as these can be signs that I'm developing a more serious condition called ankylosing spondylitis, which is a fancy way of saying that the bones of my axial skeleton may be fusing together. The condition is progressive and has no cure, but some treatments can delay the progression. However, I'm trying to avoid catastrophizing right now. </div>
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I can't stop thinking about the stark difference between this orthopedic appointment and my appointment with the pain clinic a few weeks ago. At the pain clinic, I was treated as if there was no hope. I was told the best thing to do would be to stop searching for an answer and participate in their "pain group", which involved no medical treatment. Just OT, PT, and psychotherapy designed to get you to meet your basic daily needs like showering and bending over. They specifically refused to help me try to find the root cause of the pain. Either that, or they thought I was just seeking drugs. When I had asked what the point of this would be if I could still not do anything I wanted to do, the doctor left the room. It reminded me of a time in the emergency room when a doctor told me that being able to shower and get dressed on my own was "good enough". Or when I fell to floor getting out of bed upon discharge because of the pain, and they refused to help me or manage the pain. </div>
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I'm reminded of the time I was sent home from the hospital with a walker because I couldn't even take one step without excruciating pain. I was convinced I would have to get a wheelchair because it was winter, and I wasn't going to make it a mile to work in the snow using that thing. I ended up quitting out of pride, among other reasons. But I never touched the damn walker. I started stretching and squatting with just my body weight, when I could. It was excruciating. This, in combination with TENS therapy twice a week seemed to help a great deal, but there was still so far to go. Then life happened, and we had to leave Morgantown pretty abruptly. </div>
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Maybe I need to do this for myself, but let me see if I can go back to the very beginning. At the very least, this record will be in one place.</div>
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In September of 2014, I was in a pretty rough spot. Having just lost two jobs due to constant meltdowns and uncontrollable anxiety, I sank into a pretty deep depression from which I could not recover. I tried to kill myself, and I ended up in WPIC for more than two weeks. I remember the day I went. It was September 5th. By September 29th, I had been out for a few days, so I decided to take a friend with me to the gym for support. We were training legs, and I was showing him how to squat properly. During my second set, something went wrong. I felt myself give way, and I first collapsed to my knees with the bar on top of me. The safety rails were up, but they were too low for someone as short as I am. I knew immediately that I wasn't going to be able to stand up. I crawled a few feet and told him to call the ambulance. I attempted a few more times, but I could't move my legs. I somehow remained calm. </div>
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When I arrived at the hospital, I remember getting three doses of dilaudid, two of valium, two of oxycodone, and some morphine and flexoril, all within the first few hours. I couldn't move my legs more than an inch or two off the bed...for four days. Since I had no bowel/bladder symptoms, the doctors refused to perform surgery, though I wanted them to. (More on why that may have been a good idea later.) I stayed in Montefiore for a full week. At that point, I still couldn't really move much. I could't even sit up on my own for more than a few minutes. I was sent to Mercy to undergo intensive inpatient physical and occupational therapy. I did from 2-3 hours of PT and 2-3 hours of OT each day, with "homework" exercises to practice otherwise. I spent a full week there, and by the end of it, I was able to walk a few laps around the hall, though most other activities that involved bending and twisting really sucked. The pain was in my lower back, just right of center. It was a pulling sensation accompanied by feelings of pressure, as if I could feel the disc itself bulging. But I pushed myself at home, practicing on the stairs and trying to do more each day until I was cleared for outpatient therapy. </div>
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I started outpatient PT with a pretty amazing team at the Southside Sports Medicine complex, which has the most impressive PT facility I've ever seen. Unlike any other PT I've undergone, this was hard work. It was just like being in the gym, and I was constantly being pushed to progress even further. I also began working out on my own again, with permission from my team, making sure to ease back into things. By mid-December, I was pain free and maxing out on all my lifts. I was in the best shape of my life. (This was even after ending up in WPIC two more times in October-November because my dysphoria/dysmoprhia was unbearable. Meltdowns were happening all the time, for hours upon hours, and I had no way of managing my overstimulation/anxiety without the gym. Related, this is when the ridiculous onslaught of medications began. Also by December/January, I was taking all of the following medications at the same time: Effexor, with the dose eventually reaching almost 600 mg, which is way over the recommended limit; Klonopin; risperidone; Xanax; Ritalin; Lamyctal; Vistaril; and gabapentin. No matter how often I expressed that my psych symptoms were actually getting worse because of this medication and that I wanted it discontinued, my concerns were ignored. Anyway...)</div>
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I think February marked a major turning point for me, and that's when things start to get a little fuzzier. My brain was most certainly messed up from the aforementioned psych cocktail, but it is still hard to absolve myself of responsibility for all of the things that happened. In February, I drank way too much one night, and I ended up putting my hands on a friend of mine. It wasn't any sort of altercation, but I was trying to grab her hands to reach for the bottle she had taken from me. Once that incident had calmed down, I knew that I had done something horrible. I also know that I threw myself down the stairs on purpose, but I can't remember if I did that this time, or if that happened later on in the year. The entirety of 2015 feels like a blur. But I ended up back in WPIC, though for only a week this time. And it was not good.</div>
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I remember being unable to speak. I couldn't respond to the nurse's questions when I got to the floor, and she began to scream at me. She wanted me to take my clothes off, and because I couldn't comply, she called security. I know I mentioned something about it not being comfortable, but I don't know how. Security came. Four very large men. It was a matter of not even two minutes before I was grabbed by both arms and lifted from my chair. And I was in such a state of overstimulation that I lost it and tried to fall to my knees. I was screaming. Crying. Saying please. The other two men grabbed my legs in the hall, and I was hoisted and carried overhead, very clumsily yet aggressively, to a seclusion room in which I was pinned to the ground with an arm behind my back and one holding my head down while the other two stripped away my pants. At this point, I begged them to stop and told them I would do what they asked, though one remarked, "It's too late for that." After agreeing to comply again, I was injected with a tranquilizer anyway, and they continued to rip away my clothes. We eventually found out that not one person on the floor had read my chart. They had no idea that I was autistic or trans. I was told to sue at that point (and multiple times after), but I wasn't in a place to do that. I didn't stay long that time, maybe five or six days. But nothing was really the same after that.</div>
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The next few months are even harder to visualize. Sometime in March, I began to experience pain in my very low back, way to the right. It wasn't anything serious, and I simply avoided exercises that aggravated it for a while. But then I had to avoid even more. Then reduce the weight, at first a little, and then significantly. By May, not only was my brain incapable of functioning, but the pain had also become bad enough that I knew I needed to get help. I consulted a doctor and was prescribed oral steroids. I was absolutely fine by the time the course was over. But I couldn't stay functional for long. I ended up in WPIC again in May on a different floor than I had been used to. The patients were loud, aggressive, and often violent. There was absolutely nothing for me to do except read and eat. I slept almost the entire time. The staff were just as bad as the patients, and I had to fight to have a hearing to get out. As the doctors even stated that I am not a danger to myself, the judge very quickly ruled in my favor, even though they wanted to keep me there even longer to give me even more medication. </div>
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By June, I required another course of oral steroids, but they were less effective this time. I still felt like I managed pretty well, physically, at this point, despite the pain, which was mostly limited to my time in the gym or being on my feet for too long. Pride happened, and it was definitely a disaster, as I spent most of it trying to avoid being arrested because I was crying under the steps at the GLCC, and none of the kids there believed me when I told them I used to volunteer there and needed a safe place to be until Lyndsey came back. I don't even remember the rest of the month. Then came July. I still think about that night. I still have horrible flashbacks from which it's hard to escape. Flashbacks of memories I couldn't remember at the time, flashbacks to being screamed at and thrown out, flashbacks to being in that hospital, to losing everything. The fear hits me, and I feel everything all over again and wonder if and when it will happen again. I want to make this part of the story short because I don't want to fall into that place.</div>
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I had a psychotic break and destroyed everything after coming home from the bar (only had a drink and a half all night). I began to drink more when I got home, but I quickly stopped after half a drink or so because it tasted terrible. I remember being on Facebook at that point. The next thing I remembered was standing at the foot of the stairs being screamed at, surrounded by the carnage. He was furious and terrified of me at the same time, and I will never forget how that made me feel.The police came. I waited outside. When they came out, the taller of the two told me that I was a piece of shit and that he would have done to me what I did in there. I was taken to WPIC again to plead my case. I told them everything, and they let me go home. The only problem was that it was no longer my home. I went with a friend after grabbing a few things, but I knew I wasn't going to be okay. I changed my mind and went back to the hospital, but this time, I ended up spending 19 hours in the Mercy waiting room before being shipped out to McKeesport. I had never felt so much psychological pain. I decided then and there that these medications had to stop because I was no longer in control. I was completely detached from everything about myself. The staff did not seem happy about my decision and continued to attempt to force me to take them. At one point, my doctor told me that I wasn't really trans--that I was just gay. That's when things changed for me. I felt more motivated than ever to get out and get on with my life. I consulted Patient Rights booklet as well as the hospital mission statement. I used every piece of information that I could and wrote a letter explaining that my rights were being violated, listing all the relevant details with citations, and that I wanted to be released. I still had to wait 72 hours. When my parents came, we grabbed the dog. I received a hug that told me everything was going to be okay, but I still had to leave. </div>
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The psychological pain followed me, and it was accompanied by the most physical anxiety I have ever experienced. But within a couple of weeks, I started to feel like myself again. I focused on my own well-being. I fell back into my gym routine with ease, got a job, and started spending time with my family. I went swimming almost every day. I looked forward to talking with him at night, and it crushed me whenever I couldn't. It was a rough two months. I went to visit for a long weekend. It was August 20th. I decided to stay a few extra days and go down to our drag family's house in Virginia with him. When it came time to leave, I remember being in the shower and looking at him. We both knew what I was about to say. I never went back to Larksville. </div>
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The physical pain had begun to increase when I started working again. I worked in the warehouse at Dick's sporting goods, frequently lifting objects weighing several hundred pounds and hauling pallets weighing thousands. I spent eight hours a day doing this and working on shipping orders. It took me a day to recover when we had a truck, which I had to help unload from 4AM to 1PM two days per week. When I decided not to go back to Larksville, we stayed with Jackson's mom. We started looking for apartments in Morgantown right away, though it took us until nearly the end of October to find one that would allow all three dogs. (At this point, I had received two additional courses of oral steroids, which only helped while I was taking them. As soon as they stopped, the pain came back.)</div>
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Our house in Morgantown was the first one that was truly ours together. We did the best we could to make it our home. One night, my pain changed for the worse. I remember trying to lie down in bed next to him, but I felt a shot of pain followed by muscle spasms. It wouldn't go away. I couldn't walk on my own. So the ambulance came, and I was taken to the ER again. I know I made that kind of trip more than once, but the details get fuzzy again. November and December were rough. I got a job preparing taxes, though I wasn't making much. I was the best, even better than the manager, so I got the job of checking all the returns from all five offices for accuracy. Sounds great, except that I made none of the commission that I would have just preparing returns. Sitting up in a chair that long became impossible. The pain would cause me to tighten to the extent that every muscle in my back, up to my traps, would lock. It felt like I was being beaten repeatedly. I had to leave that job too. Shortly after the new year, I ended up in the hospital again, and again. I was admitted, at which time I saw no fewer than six spine doctors, two physical therapists, a few surgeons, etc. Some told me that the pain was definitely from my disc herniation. Others said it wasn't. Some said there may not be a cause. One said I would be in pain for the rest of my life. The physical therapist here was the first to hint that my pain could be coming from my SI joint, so I began doing my research. However, I still couldn't walk without agonizing pain, though I forced myself to try. Because I could move--no matter how painful it was or how nauseous that pain made me feel--I was given a walker and sent home. But, as I mentioned, I never used it. </div>
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Soon after starting a mostly useless round of PT, we were leaving Morgantown after living in our home for only five months. It was hard to say goodbye. But life happened in a way that neither one of us expected. It was torturous to watch him go through that without being able to do anything about it. But it took a toll on both of us. A few weeks later, I decided to take some time off from the gym to see if that really could get my pain under control, and that was the worst health decision I've ever made. The pain got worse, and I ended up spending almost a month just lying in my bed, only getting up to go to the bathroom and sometimes having no more than a protein shake a day. I lost almost 25 pounds in that time. I had reached a breaking point. I came closer to killing myself than I ever have not too long after. But I survived, and I started over. I did a little more each day, and the weight came back after not too long. I had such high hopes that coming back to Pittsburgh would be the chance to start over and finally get proper treatment. The pain was still largely unbearable, and I'd often require help showering and getting dressed. It was all I could think about. I avoided and still largely avoid most interactions, even though I don't want to, because I get so much more easily overwhelmed, and it's hard to watch other people do things that you can no longer do. I miss my friends. Terribly. </div>
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I had an appointment with the same doctor who had seen me for my shin splints in 2010. I should have known this was a mistake because I have had shin splints for the last 6.5 years, continuously. He of course told me that surgery was not an option at this time and that other options were available, though he didn't tell me what they were. He wanted me to get an MRI, and when I told him I had just had one not two months before, he didn't seem to care. He didn't even look at any of the images his techs had taken. He again wanted to focus on my spine and the disc. I was prepared for the appointment. I explained how I sometimes have trouble remembering to say everything, so I wrote a detailed explanation of the pain and my treatment/experienced up to that point. He told me, "Well, I'm not going to read that, so just give me the abridged version." I stumbled through, trying my best to make sure I got everything out, but he kept interrupting me. He told me to see a colleague of his, but not why. He also told me to see an anesthesiologist for another injection, but he didn't tell me where (spine, SI, hip). I did forget to mention that, when I went to the emergency room and explained that I also had pain in what felt like my lower/outside right hip, they finally took a x-ray of the area, though I had mentioned this several times before. It turns out that I have a slight cam deformity on my right femur. However, it may have been there all my life. Maybe it does cause me some pain, as I recall feeling a pinching sensation every time I spread my legs to the side or when I attempt a split. It now makes sense why I'm not capable of really doing that kind of split. Perhaps the SI issues and associated muscle spasms/tightness have made this more irritating. That's my best guess, given what I know now.</div>
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After that appointment, which left me more confused and hopeless, the depression hit hard. I tried my best to keep ahead, but the pain wasn't getting much better. I'd be able to suffer through a day or two, and I would feel less depressed when I could function, but dragging myself out of bed to face day after day of constant, agonizing pain brought back to a pretty dark place. When I had planned to kill myself--the time when I was closest to succeeding--I fully accepted that I would be in pain forever. I was reaching that point again, feeling like there was no hope. I didn't even want to try to get help anymore. It took a little over a month for me to make the next move, though part of that stemmed from the fact that it took forever to straighten things out regarding my insurance. In the meantime, I ended up at WPIC again for a week. And that experience was a complete disaster that left me feeling even worse.</div>
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The night before I decided to go back, I remember staring blankly at the ceiling, unable to move. I felt so disconnected, and it really scared Jackson. When I was able to finally get up after half an hour or so, I came downstairs to write. That started out okay, but I remember getting to a point when my brain wouldn't function anymore, and I ended up just writing the word "HELP" until there were no more pages left in the journal. Eventually, the words became violent scribbles and circles. I tore holes in the pages with each stroke. The next day, I ended up starting blankly again. This, on top of the pain, was too much. I knew I had to do something, so I decided to go to the hospital. I requested to be placed on the 13th floor, where I knew I could get treatment from a team that had worked with me previously. After watching a male doctor threaten to 302 a female patient for not submitting to a third strip search for him (she had been taken back and forth between WPIC and Presby), I already felt like I had made a mistake. It turns out that she became completely cooperative when asked by a female nurse. I was called into the triage room to speak with the nurse, and Jackson was about to follow me. She held her hand out against him and told him he could not come in. I panicked and wasn't able to speak immediately, and after a few seconds of silence, her tone became pretty aggressive. She screamed for me to "look her in the eye", and it was at that point that I told her I wanted to leave. She yelled at me to leave the room. I ended up shaking in the waiting room for a while before I was able to come back in, this time with Jackson. She proceeded to talk to him like I wasn't even in the room, telling him how uncooperative I was being, etc. At this point, my anger allowed me to voice an opinion about that. After long talks with this nurse, a tech, and a clinician, we decided it was best that I stay. They told me that I would be taken to 5A and transferred to 13 when a bed became available. This turned out to be a lie. </div>
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5A is essentially small, L-shaped hallway that can only house nine patients at a time in six rooms, each of which is only large enough to fit a plastic bed, not even twin size. I could see on my wall where someone had tried to scratch the word "HELP" in 16-inch letters. The irony was a bit too much for me then. After sitting in the plastic chairs in the waiting room all night, the pain became excruciating. A few hours after arriving on 5A, the bed wasn't helping much either. I couldn't hold it back anymore. I began to scream in pain. I actually cried. It was 30 minutes before anyone came. They told me they would get a doctor to see me. It wasn't long before someone came to assess me. By that, I mean that, while I was screaming and could barely breathe or focus my eyes, I was being told to roll over, move this way or that way, and my limbs were being pulled, etc. Then she left, and I screamed for probably another hour and a half, until I passed out from exhaustion. When I woke up, the nurse told me that I could have Ibuprofen. Nothing else. I believe I mentioned several times that Ibuprofen did not work at all, and that, if it had, I probably wouldn't be there. I struggled to even sit up for the next two days, unable to really attend groups--when they weren't cancelled. At this point, the nurse finally called the medical team again. I was given oral steroids again. Nothing else for pain except Ibuprofen, even though I had mentioned that the combination of gabapentin and indomethacin, with an occasional percocet in bad circumstances, usually helped me at least manage. However, after the first day, the intensity had died down enough for me to at least move around a little more. Around this time, I found out that one of the staff members was repeatedly and intentionally misgendering me, even after being corrected. Most groups were cancelled because they didn't have enough staff, even though we only had four patients on the floor. I remember a social skills group during which the MT handed each of us a piece of paper, told us to ask each other the questions on the paper, and went to go watch TV. I spent most of my time coloring. For two days in a row, we had no groups at all, actually. Just markers that didn't work and a deck or two of cards. The groups made me fee like I was being mocked. In the first group I attended, the MT spent a lot of time talking about how to use physical activity to relieve anxiety and depression. What a kick in the nuts. </div>
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The rest of the team--doctor, social worker, etc.--seemed okay. The staff were just terrible, and I didn't feel like I was getting any treatment at all. I was just sitting there starting to feel more hopeless and worse about myself. We agreed on a short stay so that I could attend my pain clinic appointment the day after discharge, and I feel like the team stopped caring once that decision was made. I had met with a clinician to tease apart a diagnosis. He told me bipolar unspecified. My discharge papers simply said "depression". Now, if you know anything about how psych treatment works, medications for depression can often worsen symptoms of bipolar disorder, so I found this particularly troubling. I was placed on carbamazepine in the hospital, and I would be attending IOP when a spot became available. </div>
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I went to my pain clinic appointment after discharge, and when the doctor told me that I should give up, I felt like running right back to the hospital. The news immediately crushed me. Not only could I not get any even temporary relief, I was being told that there was no hope. Jackson snapped. He quoted the mission statement of the clinic, which clearly states that their goal is to both manage pain and identify potential causes. He accused her, quite fittingly I believe, of just trying to secure another long-term patient rather than actually helping me. No matter how we attempted to explain that I had not received any continuous care over this period, and that the pain does not fit the classic "chronic pain" model that everyone seemed to force on me, she refused to believe that an answer existed. She told me that every doctor I see will find something different and that it would just be more confusing. So, when I asked her what the point of her program would be if I could no longer engage in any meaningful activities, I expected some sort of discussion. I was still willing to have that conversation. But she got up, told me that we were done here, and left the room. We left, but I ended up walking back in to schedule the intake sessions for each portion of the pain group because I felt like I had nothing left to lose. I never attended any of them. </div>
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Though I had begun to feel better with the carbamazepine, something wasn't right. I was now more anxious than ever. I had to leave the bedroom quite frequently to sleep downstairs because I didn't want to wake him with my screaming, shaking, and hyperventilating. They decided to increase the dose a little. This actually seemed to help a bit. I was a week into IOP, and while it seemed to simply offer me an excuse to get out of bed, I figured it wouldn't hurt. </div>
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A few weeks ago, I started feeling itchy all over. It happened a lot, and it was more intense than anything I had ever felt. Within a few days, I had a rash on my chest and arms. I took some benadryl and an oatmeal bath, convinced it must have been from cleaning chemicals in the hotel we had stayed at over the weekend. When that didn't help, I figured I would go to the doctor the next day after IOP. I ended up having to leave a little early because it was getting so intense that I couldn't handle it, and I was so physically exhausted that I felt like I would collapse. We went to urgent care, and I explained that I had started taking carbamazepine recently and that the dose had just been increased not a week before. She asked me about sore throat symptoms, looked at my tongue, if I had been around anyone sick, etc. She consulted with the lead physician. I was diagnosed with scarlet fever, even though I had no throat symptoms, no fever, no strawberry tongue, or any other signs. I took the antibiotics for two or three days, but I continued to worsen. This time, I started experiencing raging fevers. The rash had become raised, dark red, and scaly all over. It was spreading fast. I was having a lot of trouble breathing, and I couldn't stay awake for more than a few hours each day. When I woke up one morning, my lower abdomen was distended at least three to four inches. I knew it was time to go back, but I was terrified of that. I've been to the hospital so many times that I often feel like the won't take me seriously when I do go. We went to the emergency room shortly after finding out that the strep culture had come back negative. I was admitted and diagnosed with DRESS (drug reaction with eosinophilia and systemic symptoms) syndrome. My liver had sustained some damage, along with my lymphatic system and several components of my blood. I spent three days in the hospital, though I didn't move much from bed for a while after getting home. I couldn't even handle looking at myself. My face and body did not look like my own and still aren't fully back to normal, and that messed with my head much more than I expected. There's also like a 15 percent chance I will develop an autoimmune disorder in the next three to five years. Let's hope my luck takes a different turn.</div>
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After I got out of the hospital, I started being stubborn. I attempted to deadlift. It didn't go that well the first time; however, I was able to do more the next time. I was moving better. I ended up squatting for the first time in over a year. There was pain, of course. But it was easier to manage, though heavier weight was obviously more painful. I felt more flexible. I knew all along that this exercise is one of the best things for people with back problems, contrary to what most doctors trying to cover their asses will tell you. Given that I use proper form, it's likely that this exercise forces my joints to move appropriately. Squatting is even comparatively easier after deadlifting. In fact, when I listened and eliminated squats from my workout altogether, that's when things slowly started to worsen to this extent. I should have trusted myself and my knowledge of body mechanics, instead of allowing medical "professionals" to tell me that they know better. These past few years were yet another lesson for me, reminding me that not all doctors are actually smart. </div>
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Anyway, my appointment with Dr. Vyas was amazing. Both he and his resident were extremely thorough, and once I explained my symptoms and that most doctors had focused solely on the disc, he immediately chimed quite casually that that didn't make any sense because the disc herniation was to the left, and all of my pain--except when changing positions or in cases of extreme muscle spasms--was on the right. It seemed perfectly clear to him, and he walked me through the x-ray of my SI joints, which showed a little bit of arthritis, though not a significant amount. He mentioned that it's pretty typical in people who put that much stress on the joint. He also made me aware that there were some bony spurs in the area, but that these just happen and don't really cause too much trouble. He seems to think that it may be more of a mechanical/alignment issue, which is wonderful news in a way. There are quite a few options for dealing with that, including injections, radiofrequency ablation, chiropractic adjustments, SI belt, targeted therapy, etc. Finally having a solid answer makes me so much more optimistic. </div>
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I went in for the injection the next morning, as I mentioned, and the team was quite friendly. However, I will never forget this next scenario. As I was lying on the table with my pants halfway down, the tech started rubbing the ultrasound gel on that area in a circular motion. There was silence as the song had just ended on the radio station. Then, with perfect timing, "Let's Get it On" started playing. The silence only lasted for a second as one of the techs let out some sort of snort/giggle, and then everyone in the room lost it. </div>
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Right now, the anesthetic has indeed worn off, and I'm just waiting. I start PT next week, but I'll be working on things until then on my own. I finally feel like I have some control back. I finally feel like I may be able to move forward with my life. (Before I forget, I mentioned earlier that disc surgery immediately following the accident may have been a good idea because it is very likely that this mechanical issue developed during the recovery period. The doctor seemed to agree with me on that last point.) It's hard to keep the mental aspects separate from the physical, which is why I detailed both stories here. </div>
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I'm still nervous that this will be a hard road. I've wasted so much time like this, and I worry about the worst possible scenarios for pretty much every aspect of my life. But, I'm trying to keep that in check. I'm hopeful, finally. I'm trying not to question it. And I'm trying to be proud of myself for even making it this far, though I certainly had help along the way. I'm still working on me, but this has made it so much easier. I'm ready. </div>
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Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com2tag:blogger.com,1999:blog-2925964181189819417.post-46709083884377428212016-10-26T08:20:00.001-07:002016-10-26T08:21:38.147-07:00Rhythm and BluesI haven't written anything here or elsewhere in a while, which is due in part to having finished filling the pages of my paper journal some weeks back. That wasn't supposed to happen. I just remember writing the word "help" repeatedly, for roughly 40 pages. I may have been at that same point not two days ago. I haven't slept, so I can't be sure where I'm going with this in the end. <div><br></div><div>Because I am me, I ended up in the hospital last week due to what is referred to as drug reaction with eosinophilia and systemic symptoms (DRESS) syndrome, which is a rather formal way of saying that carbamazepine was literally ripping my whole body apart. I believe I've detailed the events leading up to that diagnosis somewhere at some point, so I won't repeat them. However, coming home was an experience unlike any I've had before: I wasn't better. (I'm not counting ER trips due to back issues, as I've already learned to expect that the problems will return.) There wasn't much else that could be done. My liver was beginning to heal, the rash had definitely improved, and the remaining blood tests had all begun to normalize. But the pain, fatigue, and swelling continued, and I worried that they wouldn't ever resolve completely. My body literally looked like it belonged to someone else, and this terrified me to the breaking point. I cried a lot, wondering why shit like this seems to keep happening to me, wondering if this nonsense will ever end. And a part of my brain is still stuck in that loop, but at least it's playing in the background now. </div><div><br></div><div>Nevertheless, I've been forced to confront a lot of things again. I still have dreams. I want answers so that I can finally move toward my goals. I'm not convinced that this is my forever. I feel like it can't be, but the fear and doubt are hard to ignore. I can accept it as my reality for the moment, most of the time, but not as permanent. I just hate how much time I have lost to this--how much it shows on my face. I hate being able to look in someone's eyes and recognize the moment that I've lost them--the point at which they no longer believe in me. </div><div><br></div><div>I'm going to have to start over not too long from now, again. And I feel like this has been a large part of the problem, as I haven't really had continuous care from a single doctor or group of doctors at any point. Maybe starting fresh is a good thing then. It's hard not to feel overwhelmed even now. </div><div><br></div><div>I just want to know what it feels like to fly again. To move freely. To move in harmony with my soul. To not have to hold back or calculate every move and every breath. To open my eyes in the morning without having to process what kind of day it's going to be. To run. To jump. To grow. To feel invincible again. To dance. To be a part of this world again.</div><div><br></div><div>And maybe that's it. That last one. I've never been the best at connecting with the rest of humanity. But I could build bridges. I've learned over these past several years that my energy--my essence and very life--is rooted in a sort of pervasive rhythm. This energy stems from feeling in harmony with everything around me, and that feeling only seems to arise when I am able to use my body and mind the way I desire. It is more than a desire. It's an absolute need. The rhythm has been disrupted, and everything else that follows from this central part of me has begun to unravel. I've been speaking in somewhat vague terms here. Let me step back.</div><div><br></div><div>My entire perception of the world changes when I am unable to do the things I love--to maintain this sense of wholeness via movement and rhythm. I am infinitely more anxious, less verbal, more introverted, less social, less functional, more depressed, less organized, more obsessive, and more sensitive to overstimulation. I feel like everything around and within me is chaos. I'm completely ungrounded. I feel without purpose most of the time, and I've been trapped in the same place this whole time. Groundhog Day. This has been going on for so long that I barely recognize myself anymore. I feel unbelievably alone in this world. It's hard to relate to others when you can't even relate to yourself. </div><div><br></div><div>I lost the rest. But this is probably long enough. </div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div>Trollhttp://www.blogger.com/profile/12185416655892657482noreply@blogger.com0