Saturday, October 29, 2016

Synopsis 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. 

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. 

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. 

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. 

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.

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. 

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. 

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...)

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.

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.

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. 

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.

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. 

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. 

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.)

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. 

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. 

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.

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.

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. 

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. 

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. 

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. 

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. 

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.

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. 

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. 

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. 

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. 

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. 

Wednesday, October 26, 2016

Rhythm and Blues

I 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. 

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. 

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. 

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. 

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.

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.

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. 

I lost the rest. But this is probably long enough. 

Tuesday, October 11, 2016

Coming Out V8.0

"Coming out trans felt like catching the ground.
Learning a dance all my own, learning that a dance
COULD be my own, and that a dance works best when
two bodies that know themselves move, and catch
each other in the groove." --Scott Turner Schofield

I hesitated about posting anything at all this year, yet I realize that this day is more important than it ever has been, not only given the current political and social climate, but also because this day represents my evolution as a human being: Each year since coming out for the first time in late 2008, my identity has evolved to encompass aspects of my being I could not know or accept in years prior.

I remember crying a lot that first time I came out. I remember the fear and the feeling that I had just lost the future I had planned for myself. But it was the first time I had looked into another person's eyes and felt the connection between our souls. It would be about another year before I could look into my own and see the same thing.

I've floated through as many identities as I have addresses over the past eight years. Femininity was something I used to fear expressing, feeling that it detracted from my own masculinity in some way--as if these binary extremes existed in opposition rather than in conjunction with one another. As if they were the only words that could describe the essence of a soul. Over time, I evolved from a straight tomboy to genderqueer (maybe) to transman to butch twink to definitely-not-a-twink to simply myself. If I had to place words on my experience, I would tell you that I am a queer autistic transman happily engaged to a cisgender gay man (though the identity crises and loss of trans visibility weren't always easy to handle). I'm also a bodybuilder and entertainer who has dealt with life-altering chronic pain, which may or may not have an identifiable cause or cure at this point. So, more on that.

That last bit--the pain--has been more difficult to handle than anything I've ever experienced. Some days, I wake up before the pain registers, thinking that this will be the day it all ends, the day I can begin to live as myself again. My experience of myself is deeply connected to my physical abilities and always has been. The dysphoria these days is rather different. I don't feel like myself at all. I feel like a stranger, like I'm viewing the world through glass and just can't break through to join the others. I've used the same words to describe my experiences with autism, and with being perceived as a woman. I've always suspected the intersection of these feelings, but the impact is more evident now than ever, when I feel more trapped by my body than I have ever been due to these limitations.

I've been told to give up looking for answers, when seven months ago I had begun to deadlift and incorporate basic plyometrics back into my workouts. Now, getting dressed is a stretch sometimes. Five years from now, I may be willing to call it quits on figuring this out. But today, I can come out as a queer autistic transman living with chronic pain. I can accept that reality, without accepting that these limitations must be permanent. I can accept where I am and still desire better from myself and the medical professionals from whom I have sought help.

I come out today to remind everyone out there living on the outskirts of "normal" that the beauty of these experiences far outweighs what anyone can say in an attempt to denounce your identity. I come out as someone who has been homeless (albeit briefly), who has lived in poverty, who has "failed", who has received inpatient mental health treatment more than half a dozen times, who continues to struggle every day. But I also come out as someone who has not given up, largely thanks to the support of those within my community, each of whom has their own equally complex coming out story to tell. Our stories connect us in a world determined to drive us apart. Our stories make it a little easier for others to tell their own, increasing our visibility, making us feel so much less alone, and ensuring that our voices do not remain silent when our very lives seem to be at stake.

Thank you for sticking with me until now, here and always. I love you.

Wednesday, September 28, 2016

Collection of thoughts on pain

No one will ever love you the way you used to love yourself. 
How do you become okay with being someone else? How do you convince someone that living like this is unacceptable to you, especially when that someone is a doctor who has told you to stop looking for an answer. 
This can't be forever. 
I don't want this future if it is. 
Will anyone blame me for that? 
They don't see the emptiness this has created. That nothing can fill that emptiness except being able to do things I enjoy again.
I told her I didn't see the point of trying if I couldn't do what I wanted to do ever again.
She walked out of the room. 

I can accept that I may have some level of pain forever, no matter the underlying cause. But as long as I can participate in my own life and tell my story the way I want it to be told, I can live with it. But walking around like a zombie--being able to look but never join in--is something that I can't handle. That's why I avoid people. They're all living in a world I can't be a part of anymore, and that is too painful for me to handle. 
I know myself, and I know exactly how this evaluation with the pain psychologist is going to go--because that was more important than trying any treatment to actual relieve the immediate pain that has reverted me from doing pretty much anything for weeks now. Not even a strong NSAID. Six months without medicine, other than Advil. Anyway,  going to be told something along the lines that I need to practice radical acceptance, that I need to accept that doctors cannot help me and that I am responsible for dealing with this (at which point I will remind them of all that I DO Do to prevent things from escalating), etc. Maybe I will also then mention that you can accept your situation while still actively working toward finding an answer. That no one has actually taken an MRI of the area that hurts--in which an anatomical deformity has recently been identified on an x-Ray. That they are focusing on the disc herniation that completely healed, which was associated with completely different pain and a better-than-full recovery. That the pain I have now developed quite gradually and continues to worsen over time, which is quite uncharacteristic of "chronic pain" with no identifiable cause. That based on the most recent movement tests conducted last week, the pain is probably not originating from the area of the disc herniation at All. 
I could go on. I could cite study after study. It gets tiring when no one seems to listen. "So, it's a sharp, shooting pain, you said?" "No, I said it wasn't like that at all, more than once." 
Stop projecting your generic image of a patient with chronic pain onto me for fuck's sake. Your generic PT probabbly won't be helpful either, as I guarantee that even as fucked up as I am, I have pushed through and can do more than most healthy people ever will in their lives. I know what you see when you read my charts and look at me--though you never even bothered to get the medical records from West Virginia. 
I feel that this approach is going to turn me into the very thing they already think I am. And I wonder for how many people such severe, lifelong pain issues could have been prevented. 
This heaviness is becoming too much to handle. I don't feel like myself anymore. And I know myself well enough to know that I can't just replace or forget about the things that allow me to feel like me. 
When I truly did accept that this was forever--when I stopped trying to find an answer--i spent a lot of time researching assisted suicide organizations in other countries. Because without the things that make me me--which also enable me to function socially, mentally, and otherwise--I'm already dead. I've tried to replace these things. I worked fucking hard to do it. I'm not interested in becoming someone else or in being so non-functional that I need to be heavily medicated like before. 
So I guess I'm trudging forward for the time being. But there is always that part of my mind that wonders how much more I can take. If this all goes the wrong way, how do you tell your own mother that you don't want this life anymore? That the gift she gave you has become a curse? That you are no longer yourself and can never be again? Do you think she would blame you? 

I'm not okay. And today has made things so much worse. 

Monday, September 26, 2016

Mental Health Rant

I want to write about mental health, but now may not be the right time. After a seven-day stay in the hospital that most assuredly requires many angry letters to administrators of all sorts, I'm not feeling confident in the ability of this system to help me, though I may feel more confident in my own abilities. That tends to fluctuate, however. I hesitate to say more about this experience because I'm working on developing a letter that outlines how poor the state of UPMC's mental health care truly is, beginning with a scene I witnessed while waiting in the Emergency Department, in which a male doctor used admission as a threat--rather than a treatment option--for a female patient that did not want to submit to the strip search. (As soon as this doctor left, the patient cooperated completely.)

I will just say this. Treatment should not be a punishment. If you are using the treatment you provide in order to coerce someone into a certain behavior, what does that say about the treatment itself? Furthermore, using a patient's past history of mental health issues against them in order to justify an involuntary admission goes beyond just "unethical". Just because someone is angry and not cooperating with you does not mean that they are mentally unstable, and if you have not learned to adjust your approach to each patient, you should not be working in this field. Maybe I should have known even then. I have a number of other examples and thoughts, but I have a stressful few days ahead of me, and I may have to place these issues on the back burner until I can draft something more appropriate.

I think the most concerning aspect is that I consider myself to be relatively well equipped to handle my own issues (though this hasn't always been the case), but what happens to all those who are in need of intensive treatment and cannot advocate for themselves? My level of anger surrounding this issue has only increased over the past few years of receiving not just substandard but downright deplorable care. And being silent is no longer an option because, if this is what they call treatment, they should no longer be allowed to treat a single fucking patient. And I am going to make sure the right people know this, along with exactly what transpired over this last week.

My mind does keep turning over these thoughts, as the whole experience has been deeply unsettling, given that I'm not feeling much better than when I first arrived there. (To be clear, I'm not suicidal.) In some ways, I may feel worse. I'm trying to be more optimistic about the outpatient treatment, though that's proving difficult. I wish I could feel like I am not doing this all on my own. I wish I could work with someone who understands that not all aspects of DBT are helpful for someone like me--and that there's research to support that. IPSRT has been more helpful than anything, and I know this. My own research into helping myself has largely focused on that. I suppose it's not surprising that sticking to a set schedule and controlling your environment helps. I wanted to write something angry here about the conflicting diagnoses being tossed around by those working with me, if you want to call it that, and how the treatment can differ a great deal depending on which is accurate. But that should probably wait as well.

Aside from these negative experiences, it's difficult being back home--as it always tends to be--because I'm not sure what to do now or how to pick up where I left off. I'm supposed to have some kind of plan, but other than writing the answers they want to hear on a paper alone in my room, not much planning has taken place. That's the part that makes me feel defeated. How do I make sure this doesn't happen again? Gee, I'm so surprised that starting at a wall and coloring for 8 hours a day hasn't helped me figure this out.

But I have someone who is not only willing to support me in sticking to a routine, but who is actually willing to do IPSRT things with me. And that may be exactly what I need. The next few days will be rough, but I've decided to take the time for myself to ease back into the most difficult aspects of my life. I'm scared. I'm actually terrified of a lot of things, as most of you know. But this can't keep happening. I've been stuck in the same place for two years, for a variety of reasons, and I can't take it anymore. Something needs to change. And I need to be better about realizing when something isn't working.

Here's to trying again. And again.

Thursday, August 18, 2016

Under Construction

My trans body is my palace, built up from the rubble I myself created out of necessity because my soul had outgrown the one chosen for me, perhaps before it ever entered this world.

The wisest people I knew told me that I’d both grow out of it and grow into it. So I unpacked.

I painted the walls, but I was told they were the wrong color.
I trimmed the garden, but I was told it was too short.
I solidified the foundation, but I was told it was too much.
Each exciting, uplifting renovation only further confirmed my home to be the eyesore of the neighborhood.
So I put up a fence.
I locked the door.
I turned out the lights.
I let the paint fade and the walls crumble.

And then one day,
I just didn’t come home.

It would be years before I could return—before I could force myself to look at the damage that had been done.
The decay and the vandalism and even the emptiness.
I didn’t even recognize it anymore.

I stared. And I cried. I tried to see the beauty I’d been told was always there. I must have sat there for ages, utterly still, tuning out the world around me in order to visualize that perfect home—the palace of my dreams.
And when I found it, there I stayed.

In my dreams. I closed my eyes and built this palace brick by brick. And the more I built in my dreams, the further the actual structure decayed. Pieces began to fall all around me. This home was no longer safe, but I could not yet open my eyes. I was afraid that I would never see it so beautiful again.

Then you found me sitting there, my back towards the world. You spoke as if you already knew me, but that was not the strangest thing. You asked me why I couldn’t move, and I was too afraid to tell you that I was afraid I wouldn’t see it anymore. So you stayed. We talked for what seemed an eternity. You weren’t afraid of the broken beams or the dirt or the bugs or the smell or the darkness. You would have waited forever.

At first, maybe it was curiosity that made me open my eyes and turn to you. Why aren’t you running away?

“Because it’s the most beautiful thing I’ve ever seen.”

You didn’t seem to see this dilapidated shack that had long since been abandoned. You didn’t see the overgrown lawn or the graffiti or the poison in the walls.


“Because that’s not real.”

But it’s all I’ve ever had. It’s all I’ve ever known.

“That doesn’t make it real.”

And so it began.

Monday, June 20, 2016


I've hesitated to post the thoughts I've had until now because I haven't been able to figure out the most tactful way to say them at a time like this. But it's weighed heavily on me since shortly after I learned about what happened in Orlando. I have seen so many posts from cisgender gay people--predominantly men--whose lives may never be the same, who now must live in constant fear, even in spaces that are supposedly "safe". I do not intend to diminish anyone's suffering, but it is worth mentioning that this fear--the fear of always needing to be on guard, of needing to know how to protect yourself, of having to check on your brothers and sisters to make sure they are still alive, of hearing people hurl words at your community that make you wonder if you're next--is not new to trans people. 

The walls you feel compelled to build in light of this recent tragedy have been heavily fortified for trans people, who cannot even be safe in gay clubs where members of our own community now feel safe enough to hurl slurs and show us what they really think of trans and gender-non-confirming people, where we still wonder if being outed means dealing with ignorance in one of its many forms. But our fear, much as theirs does now, has extended to other spaces too. If you now feel scared to hold your partner's hand in public, to wear that tight pink shirt walking home at night, to go out for a drink this weekend, imagine that you have to feel that same or an even greater level of fear when you need to change in the locker room, when you are taken to a hospital, when someone gropes you in the club and finds something "missing", in the bathroom, when walking home and not passing, whenever you meet a new person, etc. Imagine feeling that every time you hear the news that another one of your trans brothers and sisters has been murdered or attacked. The safety you have lost has never been guaranteed to us. We begin to carry around the weight of all of this the moment we realize who we are. We have been screaming this whole time for our LGB brothers and sisters to understand the reality of this fear. We have been met with silence all along too, and we have become angry because of it. 

The pain of the past week or so is an amplification of the pain that has been and always will be a part of the trans experience, rather than a new development. I wish the understanding did not come at so high a cost, but I hope that some of you will recognize this, further understanding that the first of us to be targeted in the future will be those who fail to meet society's expectations of gender. 

We do not have to act, to hold hands, to be in a gay club, etc. We merely have to step outside our doors. I am not shaming you for the privilege you have had up to this point. In fact, I have envied it. I have longed for that kind of comfort in public spaces all my life. When you want to know why transphobic rhetoric hurts so much, why displays of ignorance provoke anger and panic, you now have your answer. I hope that this tragedy marks a point where we can begin to rebuild our spaces as truly safe and inclusive for all members of our community. You want that back. We've desperately needed it all along.

Sunday, June 12, 2016


Even though I have some answers, they may not be answers at all, and the very worst is still a possibility. I hate everything about the way I look and feel these days, and I can't do anything I enjoy. I'm missing out on Pride. I've spent so much time just lying here doing nothing, and I hate every minute of it. But I can't function like this, so most things are off limits. I felt hopeful for a day or so. I guess that counts for something.

I don't know what to do. I wonder how few people who have stayed in my life have managed not to walk away. On top of everything, I feel like that is only a matter of time. It'll happen when they can't tolerate any more from me. It's almost happened so many times. I'm always afraid that next time, there won't be a next time. I have to struggle to hide everything even more knowing this. 

I've been trying to get myself out of this mental trap for so long. I get pretty close sometimes, but I know the only thing that will fix it to the point where I can function and be happy again will be getting rid of this pain and these limitations. If you think that's a stretch of that I can just learn to be happy without any of the things that give meaning to my life, then you don't know that much about me, it seems. 

I feel so different. The world feels different now that I am this way, like we aren't meant for one another. Nothing is comfortable, physically or otherwise. 

I'm having trouble saying it all. Sometimes familiar words and phrases are easier, even if they don't quite fit what's happening. 

Happy pride, everyone. This is what mine looks like. This is what my entire life looks like. And being strong is not easy anymore.

Friday, June 10, 2016

Pain Update: Answers!

It's been about 16 months since this pain began, and I finally have some answers, though I worry there still may be more to the issue, but I'm always the one to think the worst. For the past 3 months or so, the pain has been at its worst, and most days I can do no more than sit up in bed without wanting to scream in agony. (I say wanting because, if you know anything about chronic pain, you know that, after a while, you learn to stop screaming and suffer in silence: Your body adapts, but the pain doesn't necessarily lessen.)

Anyway, my fiance essentially had to drag me to the emergency room this time because, after my last hospital experience during which I was accused of seeking narcotics and sent home in pain with no hope of relief, I didn't want to put myself through anything like that again. However, since I couldn't lift myself or even turn over in bed, I figured it needed to happen.

After a horrible experience of being repeatedly outed by no fewer than 7 staff members--even though we told each one about the issue--the doctors decided to do something different. Now, I've been pointing to the same spot for the past 16 months and explaining exactly what the pain feels like and which positions are most agonizing, yet no one thought it would be a good idea to take an x-ray of that area. And I wanted to cry when I heard what they found.

I have a protuberance at the right anterior femoral head/neck junction that is causing femoral acetabular impingement, which actually could explain all of my symptoms. They also found mild degenerative changes in both SI joints and my pubic symphysis, though they don't believe the arthritis is severe enough to result in pain like this. But this news is a hell of a lot better than what I had been thinking.

I still need to follow-up with someone, but I'm no longer fumbling around in the dark hoping to stumble across an answer. Given that this has been going on for over a year, I worry that I will still need surgery to correct the issue, but 4 months or so of recovery from a minimally invasive procedure would be well worth it if i could actually enjoy my life again. Maybe by next pride I'll be able to go out and participate instead of watching videos from my bed.

I'm ready to be myself again. Here's hoping that, one year from now, I will again feel at home in my body--that it will no longer feel like a prison due to these limitations. Though I've learned a lot about pain and disability from this experience, I'm ready for it to be over, though that alone seems selfish, given that many people do not have that option. I have too many thoughts right now!

Friday, April 8, 2016

RuPaul Diatribe

A recent interview with RuPaul has once again filled me with rage. I have tried numerous times to give her the benefit of the doubt, but her "Real Talk" interview only confirmed what I feared to be true: that her callous, loathsome attitude and behavior only serve to further marginalize the most vulnerable members of our community. The most disturbing part of the entire interview is that her hypocrisy and prejudices are cleverly disguised by her ability to speak eloquently and at length. They are embedded amongst numerous other points that actually do have some validity. The most dangerous people in this world are those charismatic enough to twist the minds of others into believing even their most wretched thoughts--who use their charm to hypnotize the masses into surrendering their ability to critically analyze behavior, language, and situations.

Before I embark on this somewhat lengthy break-down of the most problematic assertions of the interview, I must offer the following bit of advice. Language, whether we want to admit it or not, IS important. It underlies and shapes all thoughts, attitudes, and behaviors. Language has the power to save lives, as well as the power to kill. As a linguist, it is hard for me to overstate the role of language in personal and societal development. There are multiple instances during this interview where RuPaul deflects questions and avoids lengthy discussion of topics that would fully expose her bigotry by asserting that language doesn't matter, and it's all about fun. She even goes so far as to say that being hurt by language is stupid and only further reinforces "trigger-happy" people's perceptions of their own victimhood. Because, you know, if a rape survivor can't laugh about being raped, then they are automatically inferior to me and undeserving of my respect or validation. Dismissal of the idea that respecting others, particularly those who have been through the trauma of fighting for their lives as transphobic slurs are hurled at them, is not advocating for your community. It is erasing the identities and lived experiences of the people that literally gave you the right to be the person you are today and to have a mainstream television show.

Ru further goes on to dismiss questions about the relationship between trans identities and drag. She calls the question "boring" and becomes defensive when the interviewer asserts that it's a bit more complicated than that. Her language becomes decidedly "us versus them" as she insinuates that people who take their identities seriously are "dumb as fuck". The further proves how out of touch with reality this queen can be. Listen, when all you have in this world is your identity because you have been denied access to equal housing, employment, medical care, and basic services based on that identity, any attempt to erase it or take it from you will have you fighting for your very life. Even more simply, we are MURDERED because of our identities, so yeah, we do kind of take that seriously. And does she not remember the trans queens that came out during the production of her show? Her assertions further erase the idea that an entertainer in the drag industry can also be trans, leading to a more beautifully complex intersection of identities that are equally legitimate.

It only gets more absurd as Ru's hypocrisy comes out. She continually reasserts the idea that she can float between femme and butch, yet she only frames this in the context of drag, somehow forgetting the lived experiences of genderqueer people. One wonders if these people would be allowed on her show, and, if they were, what does that say about her attitudes toward exclusively feminine-presenting and -identified trans individuals?

She further has the audacity to say that drag is supposed to be the antithesis of mainstream, with the goals of continually pushing boundaries and blurring lines, yet her television show and previous responses to questioning by entertainers who do not identify as cisgender males do nothing but reinforce boundaries within our own community and draw quite clear lines on what she believe qualifies as drag or worthy of the spotlight. Of course, this is television, and producers have every right to do whatever the hell they please, but rather than claim exclusivity on the basis of personal preference, Ru has continued to assert that other forms of drag are either not really drag or somehow less valid than others. I have mentioned this before, but my definition of drag is as follows: the deliberate deconstruction and reconstruction of gender. I don't think you can get more inclusive than that, and you sure as hell don't have to shit on anyone's identity or lived experience in using it. But my very identity is what will make my remarks less valid in this world.

If you only believe and pay attention to the words of those with the loudest, most accessible voices, you are missing the majority of the conversation. Ru is a celebrity who has done some wonderful things, but it has become quite clear that she is out of touch with the queer community. However, for some reason, the dominant, white cis gay male culture loves to eat up the shit that she spews out of her mouth sometimes, and problematic, oppressive, and downright violent discourse is perpetuated. Do you know what would be awesome? If queens (and even other entertainers) could stop bowing down to this bitch as if she were a deity and start thinking for themselves about what's best for the people our community so often enjoys throwing under the bus.

I think I've stopped shaking now. But am I done? I'll be done when the work is done. Until then, I fight for those whose voices are silenced, whose lives are erased, sometimes quite literally. And I will not apologize for that. I love you all, and goodnight.

Monday, February 22, 2016


I used to write about my gender with a passion I haven't been able to feel in quite some time, and while that may seem depressing at first, I have come to realize that it's more of a testament to the distance traversed by the ripples of my masculinity in a culture of white, cisgender gay men seemingly obsessed with such hyperbolic representations. I am only occasionally reminded of my differences, and lately, the ones who've been reminding me of those differences--the ones who have shut me and others not "fortunate" enough to have had top surgery completely out of the picture--have been trans men. It is also not lost on me that these men tend to be young, fit, predominantly white, cis-passing transmen. Rather than feeling "not trans enough" for most of my community, I now feel as if I'm too trans. 

My unmarked body may one day become home to long-awaited scars.
Or it may not.

Though the men who call me brother may agree that we are all immigrants to this land of culturally recognized masculinity, I cannot hear them through the wall their xenophobia has built. I pose with my hands above my head in hopes that my citizenship will not be denied, knowing quite fully that sneaking across the border does nothing to save those who've already failed by not passing. We watch through cracks in the wall, listening to speeches littered with self-congratulatory proclamations of acceptance and equality. It's so loud that I think my ears may bleed before my breasts: "MAKE TRANS GREAT AGAIN!"

Wednesday, February 10, 2016


I've been caught between rock bottom and the vision of what my future has the potential to hold. If the last seven months have taught me anything, it is that outside factors have the ability to change your circumstances within seconds, while internal forces effect change at a much slower rate. It's been a long journey--one whose beginning isn't exactly a finite point in time. As each day goes by, I tend to feel like the clock is ticking, like time is working against me. But these last few weeks especially have taught me that time is not the real enemy. I am.

More specifically, my subconscious fear of asking for help has probably had more to do with my inability to move forward in the ways I desire. My fear of failure also has an enormous impact on my levels of confidence and motivation, but even when I manage to temporarily surmount those, I seem to fall short again and again. As I've started to become a part of the "real" world again, I am realizing how painfully limited I have allowed my circle and life to become. It wasn't a conscious decision at first. At a time when I was giving so much of myself to everyone around me, I could already feel the pressures of having to be unbreakable. When I first lost the community I had worked so hard to build back in 2012 due to both financial and personal troubles, I started to feel the extent of my brokenness--a feeling that has stayed with me to this moment. But I also started to close myself to the forces that allowed me to become so broken in the first place. Year after year, I gave a little bit less each time a new friendship loomed on the horizon, each time someone in my community needed my help. It was out of nothing more than self-preservation that I began to do this. But I've come to realize that I've been doing this for so long that I may have forgotten how to be strong, not only for others but for myself as well.

Here I am now with all these dreams and desires, knowing that I cannot achieve them alone, without a community behind me. Some of this is my own doing, but I cannot help but think that so many of the people I helped along the way--even considered friends--have turned their backs on me. I see them occasionally, and it's almost visible in their eyes the amount of discomfort they feel around me, and I wonder if that is because the also know that they did nothing for me when I was in need of the most help. I'm still struggling to rebuild myself and my ability to connect with other people, which isn't easy with all of this on my mind.

I know I do not belong here. We have six months to decide where our journey will take us. Ironically, we feel that we need to move further away from the people we know in order to grow in our ability to connect. I don't know where we'll end up. I wonder if I will have a choice.

My mother said something to me the other day that has been with me ever since. I'd never thought about it before. We were texting about life and jobs, and at one point, I ended up saying, "I don't know what I'll become." Her response left me speechless:

"I still don't know what I want to be either."

Maybe I have more time than I thought. I still cannot see the light at the end of the tunnel, but I may be getting closer to finding the tools I need to light my own way.

Friday, January 22, 2016


I've been staring at a blank screen for twenty minutes, unable to decide which direction these post needs to go. I thought about writing about the impending snowstorm and the accompanying panic enveloping the region, but I've also wanted to explore my changing identity because that seems to be causing me the most trouble. And maybe that isn't the best way to phrase it, but it's all I've got right now.

Today is one of those days where I don't feel terribly miserable, but I know I'm not exactly happy. One of the most difficult things about waking up for me is knowing that I do not have complete freedom. I can't just decide to do something and do it. It's also difficult to deal with the isolation. I miss doing things with other people. I miss having friends, really. But there's more to it than that. I feel like I am losing parts of myself that have been crucial to my existence up to this point. I no longer have access to the blueprint for my own life. I feel empty, even on the best days. My world is pretty much this house, 90 percent of the time. I talk to my dogs. I'm well enough at the moment to know that I need to do something, but I'm not sure what that is.

I don't know how to save myself from this, and when others try and fail to help, it seems like they only get angrier with me for things not going as planned. I keep wondering how many more years this could continue. Even when I felt lost before, at least I had certain things. I had community, mostly. That and hope, I suppose. It seems obvious why I feel the way I do, but that doesn't mean I'm in any position to change it.

The snowflakes have started to fall.

Sunday, January 17, 2016

Words for Later, When I Have Time

depression gets off on choking me
cums down my throat 
as the words are making their way into the world
so when people tell me 
try to look on the bright side
I tell them
try getting face-fucked 
by your own thoughts

Activism and Energy Drinks

Tonight, I noticed just how far removed I am from the role I want to have in my community. What started as a lively Facebook discussion turned into a more introspective argument I've been having inside my own head for the last hour or so. I have had grand plans to start something here in Morgantown, and the ideas just keep accumulating. However, lack of funding and, more generally, stability have kept me from pursuing anything more than detailed conversations. But perhaps this isn't a bad thing. I spent years working for others without ever paying much thought to my own needs, too focused on creating a safe space for others to notice that I had not yet figured out how to provide one for myself. I may be a hermit these days, but I think I've needed this time to prepare myself for whatever comes next. I believe I have reached the stage where I know what pieces I need to live a more active, meaningful life, though I haven't quite figured out how to put them together.

There are so many people I want to let back into my life after having shut them out for so long, mostly in an attempt to avoid drama and pain. But there are some people that are absolutely worth that. But I'm finding it hard to reach out these days because it does seem like people have long since forgotten me, and I'm wondering if they too feel that it would be worth it, or if they have made up their minds to move on and leave me in the past. You see, I've also reached the stage where I realize that I have a limited amount of energy. I know I can't do everything, please everyone, or even come close a lot of the time. I am putting much more emphasis on the quality of my interactions and relationships than quantity. I am finding it more difficult to feel connected to people by simply scrolling through a few screens. I want to hear their voices. I want to be with them again. While I have these desires, I also have an incredible amount of fear. I'm out of practice when it comes to dealing with other humans. Anxiety and fear rule my life most of the time. This is definitely a huge problem, and I realize that this can't continue if I want to be productive and progress.

I am actually proud of myself for even posting a response to something I thought was rather misdirected. I wasn't afraid to speak my mind, and that does feel like the old me. Today is one of the days where I feel like life may be slowly coming back into balance for me. But the loneliness I am feeling somehow manages to overshadow the small amount of pleasure I've derived from the events of the last few hours.

I've been on a pretty normal schedule for a few days, and it allows me to feel like I am keeping up with what I need to do. Without the chaos, I realize how alone I am. We had a full day planned, but he started feeling sick and needed to rest. This, combined with my spending the night in alone yesterday, makes me realize that I do not have very many connections to others at this time in my life. And I miss them. I miss feeling close to other humans. I miss being able to hang out with people and swap stories. Usually, when I get tired of living in my own head, it's a sign that my mood is stabilizing. However, I'm still proceeding with caution because I know how quickly that can change.

Thursday, January 14, 2016


I am sensing a shift in the way I function. It's probably been happening for a while now, but since it manifests in a peculiar way, it's taken me a while to admit that things might be better this way. I used to be very much a night person, always waiting until the world quieted down to begin working on the most important tasks of the day. And since it was much more acceptable to live that way in college, I thrived. But for a couple of years now, nights haven't been the same. The quiet is distracting at best and overwhelming at worst. I think I'm becoming a morning person. After weeks of terrible sleep, my body attempted to adjust by sleeping far too long yesterday, but that only meant that I was able to wake up shortly after six this morning, feeling pretty confident and optimistic. And that's been happening a lot. Even when I'm absolutely exhausted, forcing myself to get up at what most would consider a reasonable time allows me to be productive. But that's the trouble. I notice that I'm far more productive and that my spirits are generally higher when I can stick to being diurnal, but my energy levels don't match up with this pattern. I'll still find myself exhausted midway through the day, and attempting to go to bed before midnight usually results in my waking up at 2 or 3 in the morning, feeling like I'm bouncing off the walls. I suppose another complicating factor is that, while we both agree that we need to be better at adulating in general, we never seem to be in the same place at the same time. It's hard to stick to a routine when your partner's is the complete opposite because it can feel like you never get to spend time with one another.

Now for something completely unrelated...

I had a job interview yesterday that completely wiped me out. Two and a half hours and a total of nine people later, I'm still unsure how things went. I would like to think that an entire department would not have put so much effort into a candidate they weren't seriously considering. But having an actual full-time job with a respectable salary and being able to utilize my education and work experience would be a relief.

I'm distracted right now, so you're not getting much more out of me this morning.

Tuesday, January 12, 2016

New Job

I want to let those who are still listening know how much I appreciate it. I'm still here, in some ways. 

I had to reschedule a job interview I was supposed to have today. Our car wasn't starting, and maybe that's a good thing. Maybe I won't be as terrified on Wednesday. 

But I start work in a few hours, and I've been preparing for this for months. But there are parts with which I'm not comfortable at all. It has nothing to do with the material and everything to do with the people and the expectations people have of me when it comes to human interaction. And I just don't think I'm going to be able to do this. I don't know how to make it different. I don't know how to fix a problem I've had my entire life. I've never had any help with it, and I can't get past it on my own, so I know I will fail on the same way I have always failed. 

I haven't been okay for days because I've been thinking about it constantly. And now I feel resented for making too much noise. It really is about how well I can pretend to be okay, I guess. For this job and for everything else. 

I'm trying to calm down enough to go through the steps in my head. It's not working. I'm just falling further and further into this trap. I want to get the images out of my head. It always comes back to the same thing. The only answer that's ever made sense.

I'm not going anywhere. I just don't think I'll actually be able to progress given how I'm feeling and reacting to everything. So yeah. I'm really not going anywhere. 

Saturday, January 2, 2016

New Year, Same Dylan

I am more unhappy with myself than I have ever been, which is probably why this new year doesn't feel so great for me. To me, it just means more of the same. I realize that in order to make any kind of drastic improvement in my life, I'm going to need to be okay and functional for more than a few days at a time. And that doesn't seem very likely to happen. I mean, I don't know how to make it happen. I wanted to write about the details, but I don't have much energy to do that. Maybe part of it is that another year has gone by, and I am once again in far worse shape than in years previous. The pain has honestly become too much. Both my physical and emotional pain seem to have no end in sight, and I'm not sure how many more days of 16-hour long psychological events I can handle. I know I have pushed everyone away these past few years. It's honestly easier than subjecting people to being around someone who just isn't very pleasant, ever. Although, I'd have no one around here to subject to anything, so I guess that's irrelevant too.

I know it's becoming too much for him too. I feel like I'm waiting for the inevitable, like each time I'm not okay will be the last time he can handle it. He's told me before that he can't stand lying there at night wondering if it's the last night he'll get to spend with me. I told him to imagine it from the other side. That didn't exactly help.

How have I made it this far? If I'm this far gone mentally, shouldn't I have found a way out by now? Well, it's really not as impulsive as people think. The most dangerous kind of suicidal feeling is the one that you have when you are at your most rational. For me, these feelings are all-consuming when they come, and they've been coming far more often than they have in months. I'm finally reaching the breaking point again, and now I don't feel like I have any options. Before, medication was always that last resort. I'm hesitant to try anything like that again after what happened this summer. Partial hospitalization, IOP, individual therapy, DBT/CBT--none of that really seemed to matter either.

I've been doing a lot of reading, and it seems to confirm that, sometimes, it really doesn't get better. Some depression cannot be treated or cured. And if I have to look forward to a lifetime of struggling with this, only to have a couple of days per month where I can feel any positive emotion at all, then I really do want out. I used to think certain things would be enough. And I feel guilty that they are not.

I don't think I am the kind of person who can ever be happy. I'm just not able to let go of the person I wanted to become. It hasn't been easy letting go of the person I used to be, but even that is nothing compared to the constant battles I have with the reality of my own existence.

I just feel like there's no happiness left. I often have no idea even how to feel happy. I'm also so caught up in my own chaos all of the time that I have nothing left to give anyone around me. I'm blank and expressionless most of the time because the fight inside never ends. I want to be there for the important people in my life, but not only do I not have the energy, I don't understand even how to do that when I am this overwhelmed. I miss everything that's going on around me. I feel entirely isolated from the world. I'm fighting this minute to care enough to keep going.

I think the least disturbing thoughts I have had involve my running away and living on the street or finding a shelter that would take me in. Someplace where no one had any idea about me and I could pretend that I never had as much potential as I did. Someplace where I could forget that I ever had any other kind of life. I'm tired of everyone pretending that there is hope for me to have the future I dreamed about. I don't even have dreams anymore. Sometimes I get flashes of them and get excited about finally being able to move forward, but they're gone before I can make the first move. And then I am just stuck with the pain.

I hate watching what this does to the people around me. I hate being the cause of someone else's stress and unhappiness. He tells me that I am not, but I can see it in his face and hear it in his voice. I keep wondering when love won't be enough for him.

About a week ago, I really thought I had figured things out, at least in part. But that was another mirage. I already feel like too much time has passed. I realized that, at 27 years old, I'm just lying around waiting to die most of the time. And this is only going to get worse as time goes on. I said it months ago when I started having bad days more often. Then the bad days got worse and I kept saying it. And now here we are, again.

One thing I did learn is that suicide via overdose seems to be pretty unreliable. About a 1 in 40 chance. I'm not willing to risk waking up and having severe brain damage because knowing my luck, that's exactly what would happen, and then I'd have to live with that mess for the rest of whatever existence I had left. I was hoping writing this would make me feel better, but I am just beginning to feel guilty about sharing anything. I know that nothing anyone can say will really make a difference. It never does. I'm lost in my own head. Truly lost. And no one can save me except for me, and I know that I'm just not capable of doing that anymore. I'm not sure I ever will be capable of that again. I feel less capable than ever. More trapped by my inability to function than ever.

I remember when I had my issues but could still be there for those around me. I remember when I could do positive things for an entire community of people. Now I struggle finding enough motivation to shower or eat and can't bend over to tie my own shoes most of the time. I've got nothing left. My ability to use my mind has been taken away, my ability to use my body has been taken away, and my ability to care for others has been taken away simply because those first two have been taken away. I have nowhere from which to draw my energy. I'm just gone. I feel like I don't know myself anymore. And I wish I understood entirely how it got this bad this quickly again, but maybe it was never meant to go away. Maybe this is the new me. This is the only me a lot of people have ever known, and that alone is depressing.

I'm afraid to stop writing because the silence is always terrifying. I never know what kind of thoughts will surface, and I don't have the resources to fight them when they do. My gut feeling tells me that this whole ordeal, however long it takes, will not end well for me. My head's beginning to hurt from all of this. My stomach is in so much pain. The same thought keeps coming back to me.

I'm already gone.