Friday, May 30, 2014

My story thus far

I’ve always taken a back seat approach to my own life, mostly letting others make decisions for me. That hasn’t worked out so well, as you’ll soon see, and I think I might be ready to take control for a change. But first, I need to realize and acknowledge what has happened so far. I need to tell my story. That happens now.

Some basic information: I am a 22yo gay white male living in Kentucky and Tennessee, in the US. I'm a singer, pianist, avid reader, and lover of roleplaying and 4x games (so, Final Fantasy and Civilization). I have a highly analytical mind and a knack for refining the content of others, but not that much for creating my own work, which is why I haven't tried the blog thing before; I've largely talked myself out of it.

I also have a number of medical conditions, some which I was born with, others which have developed over time. Some of these are only tentatively diagnosed (I seem to confuse the doctors a lot), specifically my joint and chronic pain issues, which have tentatively been diagnosed as an extreme and weird case of fibromyalgia.

For me, any and all movement is painful, as well as distributing weight or applying pressure. I am literally in constant pain - when I stand, my knees and ankles and feet ache from bearing my body weight; when I sit, my back and hips hurt for the same reason, and my knees/ankles/feet still hurt from simply bearing the weight of my legs. When I talk, my jaw aches from moving; when I type, my hands ache; when I breath, my ribs ache. Literally everything is painful for me, though some thing are much more painful than others. I basically can't write by hand because it hurts too much (so since late high school, I've typed all of my schoolwork), and I have a handicap parking permit because some days I literally cannot walk across a parking lot.

That... probably sounds really shitty, and believe me, it is, but most of the time I'm not consciously aware of the pain - if I were, I couldn't function at all. I'm very good at unconsciously pushing the pain to the side so that I can do whatever it is I need to do. Sometimes the pain gets especially bad (like when I'm playing basketball in gym class, or canoeing or hiking with my family) and I become consciously aware of it - it's a deep, pervasive ache focused in my bones and joints that slowly builds and builds until I either stop being active, or literally pass out because my brain is overwhelmed by pain. For most of my life it was incredibly common for parts of my body to stop working because my brain couldn't handle the pain coming from that part of my body and just turned those muscles off to make it stop - so sometimes my legs would stop working and I'd literally fall over and be unable to walk for hours, or days. Being in constant pain is also physically exhausting, so I have much less stamina than most. Also, while my immune system seems perfectly functional, and I don't get sick more often than normal, when I get sick it completely wipes me out - a common cold can make it almost impossible for me to move for days at a time.

Until my last few months in high school, I wasn't aware that this wasn't normal, and my parents had almost no idea what was going on within my body. Before I was aware of what was happening to me, my parents held me to certain expectations - doing chores and homework, playing outside, normal kid stuff. Sometimes they would ask/tell me to do something, and I would say "I can't do that." They would ask why, to see if I had a legitimate reason or was just being lazy or obstinate, but because I wasn't really aware of the pain and I didn't know it wasn't normal, I couldn't give much of an answer... so I usually just said "I'm tired," or didn't give an answer at all. To my parents this made no sense - I'd done almost nothing for the past week, how could I be tired? - so they assumed I was being lazy or obstinate and made me do whatever it was anyway. This continued until my senior year of high school, when after a particularly intense set of honor choir rehearsals and performance, my legs stopped working for an entire week and a half... and finally, my parents and I realized something was seriously wrong, and started looking for answers.

This led to my unfortunate reality - my parents unknowingly and unintentionally tortured me for the vast majority of my life. It's ridiculous and absurd that such a thing is even possible, but it happened to me, and it has seriously messed up my life.

Largely due to that, in addition to a hefty familial predisposition to mental illness, I suffer from extreme depression and social anxiety. I spent most of my life doing what I was told and meeting the expectations of others, regardless of the harm it caused myself, because that's what I was taught to do. And I was damn good at it. Straight As my entire life; my teachers loved me (well, the ones who weren't pissed off by my independence, but that's another story), my test scores were through the roof, I was excellent at reading and writing and math and sciences and critical thinking and all the intellectual skills that are taught in school. And if anyone noticed that I avoided physical activity, or that sometimes I disappeared for hours at a time (to go pass out in my room from pain, or break down crying in an anxiety attack), they didn't really say anything about it - nothing could really be wrong when I was doing so well, could it?

That all started breaking apart in high school; with the added stresses of adolescence and being gay and going to school an hour away from home, I started breaking down. I spent more and more time crying in my room, or unconscious due to pain; I started having more and more anxiety attacks due to being unable to meet academic expectations; my parents started encouraging me more and more to pursue some kind of sport or hobby, when I literally didn't have the energy to keep up with the "bare minimums". I stopped brushing my teeth, cutting my fingernails, bathing, or changing my clothes. I fell asleep any time I sat down for more than a few minutes (because I certainly wasn't sleeping at night - staying in one position for long is painful and makes it difficult to sleep, and also nighttime was one of the longest periods of sanctuary I had from the outside world). I developed an addiction to pornography, started having crying fits in school. Everything started falling apart. Looking back, it’s all incredibly obvious and also rather overwhelming, but not even I realized what was happening at the time.

So life went on. I graduated high school summa cum laude, with a specialization in the arts and the sciences; I was the first musician from my school to make an all-state honor choir or band; I had universities tripping over themselves to offer me scholarships. I was in no fit mental state to make a decision like what college to attend, and I knew that, but I also knew I couldn’t say that, so I arbitrarily picked one, and when their music dept offered me a scholarship to major in music, I let that decide my major for me. But I was still not functioning in a healthy way; I was still trying to meet impossible expectations at the cost of my personal health and wellbeing. And, I didn’t have anyone there to apply outside pressure – I had to try and do it all myself.

As you might expect, that didn’t go well. I missed major deadlines in courses from the very beginning, and begged and pleaded and invented excuses to get exceptions. My sleeping problems got worse; I started sleeping through classes no matter how hard I tried to stay awake; missing performances in the evening because normally I slept whenever I wasn’t in class; I wasn’t able to practice for my voice lessons because I had no energy or time to do so. Eventually I starting having thoughts about harming others that terrified the living shit out of me, and so I locked myself in a bathroom and tried to decide how to kill myself just so that I could be sure I wouldn’t hurt anyone else.

Thankfully, after several hours, I decided that wasn’t a viable option and went and sought help from a professional for the first time, at the campus counselling center. I… didn’t exactly get the help that I needed, but I got *something*, and I convinced myself that I was okay, that if I just made a few small changes I would be fine and “back to normal”.  Obviously, that didn’t work. I continued missing deadlines, not going to classes, and became isolated within my own bedroom.  While I never had another homicidal or suicidal thought (for which I am incredibly grateful), my social anxiety skyrocketed, to the point that I couldn’t stand to face a professor if I had missed our last class, or missed turning in an assignment, because then I felt I would have to explain why, and I couldn’t. I didn’t know what was happening to me. I had another breakdown and went back to the campus counselling center, and then rebounded and canceled my follow-up appointments, and then went back with another breakdown, and then stopped going, and so on and so forth. Eventually I was failing every single class because I hadn’t left my room for anything other than obtaining food for the past month, and so I pulled a medical withdrawal.

I tried signing up for different or easier classes. I dropped my major, because spending so much time on something I never really wanted to do in the first place was definitely contributing to my issues. I tried withdrawing from classes during the semester when it became clear I couldn’t keep up; I tried starting the semester with a part-time courseload instead of a full-time one; eventually, I tried taking a single class. In four consecutive semesters, I did a full medical withdrawal for the semester three times, and one semester I managed to pull Cs and Ds and an F. Clearly, school just wasn’t working.

During this time, I finally found and started regularly seeing a good psychologist, who thought in a similar way to me, shared a similar life philosophy, and was willing to wait to earn my trust and help me open up about these issues I had never before discussed. I thank God for that woman; she helped me save my life.
I started the process of realizing what my life had been. Typing this, looking over everything, it’s absolutely absurd and ridiculous and astonishing and horrifying… and while I’ve focused on my struggles, it’s a relatively accurate portrayal of how I’ve spent the past two decades. I started grieving for what I had missed out on, what I could have accomplished if only things were different (if I hadn’t been born disabled, if my parents had known about my disabilities, if I had stood up and made someone listen to my cries for help instead of letting them go ignored, if I had sought outside professional help before everything fell apart, if if if if if…) I went through a phase of hating my parents (I still have days where I’m angry with them). In the middle of that, my paternal grandfather was hospitalized and eventually died, and I had to go home and help my father try and hold the family together and care for his father, and then to bury him with dignity, and then to care for the wife he left behind. I’m not sure I can ever accurately portray what it’s like to love someone and support them through their grief, while you yourself are grieving for the things they did to you.

Now, I’m still very much in the midst of that process of realizing and acknowledging  and mourning over what happened to me. I try and find ways to fill my time while making stuttering leaps and jumps forward. I can’t hold a job or go to school, because a solid third of the time I’m having a depressive episode and can barely function well enough to not starve to death. I can’t begin to have any kind of romantic relationship, or form new friendships, or even uphold existing friendships, because I can barely take care of myself. I can’t really talk about this with my friends, because I don’t want my life to be all about sadness and regret, and my friends are the ones who unwittingly remind me of the good that life can be.

Most of my friends where I live are graduating university now and moving off in all different directions, while I’m still trying to figure out what direction I even want to go in for now. My lease ends soon and my roommates are all moving away – where am I going to live? How am I ever going to be able to function or take care of myself given the things that have happened to me? Can I ever graduate college, or hold any kind of job? Will I ever stop having these depressive episodes?

I don’t really know what happens next in my story. But I think that just maybe, for once, I can decide what it’ll be. After all, it is *my* story. And I want something better.