Monday, April 27, 2015

Actual therapy! And ups and downs.

So, today was a bit of a whirlwind.

After hitting a depressive slump for the past few months, I finally got some appointments scheduled when my parents came to visit last weekend. Which was awesome; it was about time for me to start moving again.

So, after getting a list of nearby physical therapists and occupational therapists from my insurance, we more or less picked one out of a hat and made an appointment (at a place on both lists, so they do PT and OT, so I just made an appointment for OT to feel them out a bit before making any further commitments). All well and good – and I was able to get a pretty quick appointment, just a few days later.

Yesterday, the day before my appointment, my arm started hurting weirdly. I’m familiar with standard types of pain (cuts, bruises, sore muscles, etc.) as well as my rather particular types of pain (which I loosely categorize into joint pain, bone pain, and fibro pain), but this was different. It’s something I’ve felt before, but it doesn’t happen especially often – maybe once every month or two – and so I hadn’t talked about it with any of my docs yet. It’s located somewhere between the bone and the surface of the skin, on the bottom side of my forearm, radiating up into my elbow and down into my hand; to me, it always felt sort of like my veins were being stretched out weirdly, but that never really made sense.

Today I realized that there’s a decent chance it’s actually my nerves that are hurting when that happens. That explains why it’s a different type of pain – the “texture” is different; it feels more like a spiderweb across my arm, with focal points that hurt worse than other, and it peaks and crests much more slowly than any of my throbbing pains normally do… and my pain meds (mostly Aleve and Tylenol) really don’t do anything to help with it. Which is weird, because Tylenol usually helps with any pain, regardless of the cause, though it’s certainly better for some than others…

Anyway. The pain was quite bad, and my meds weren’t even making a dent in it, but often this type of pain will go away overnight if I get some good rest, so I tried to do that. Which got a bit foiled because my dad butt-dialed me a few hours before I meant to wake up, and the abruptness of that plus the lost hours of sleep was… actually pretty significant. Once I was conscious, I knew I wasn’t going back to sleep, especially since my arm had apparently gotten worse overnight. It was now hovering around an 7.5 out of 10 – which is really, really bad. Once it gets above a 7 or so for me, it goes from “moderately distracting” to “serious impediment”. I spent the next few hours trying not to cry, as the pain grew steadily worse.
Then I started thinking about what this meant for my OT appointment later that day, and that’s when things went from bad to worse. I was FINALLY making real progress and getting into see people who could really help me, and suddenly this things happens that I seem to have no control over and can’t even mitigate that may make it impossible for me to keep the appointment – I can’t very well make meaningful conversation about my medical issues when I can’t stop crying because my arm hurts so incredibly bad that I can’t breathe. And that was the beginning of a panic attack. (It’s been a few months since I had one of those. I didn’t miss them.)

For those who don’t know, panic attacks really mess with your head. You stop thinking clearly, everything seems enormously worse than it actually is, and it’s really, really difficult not to just curl up and cry and gasp for air until it goes away on its own. It’s not just a matter of willpower; your mind betrays you, so even if you’re a very rational person, it doesn’t matter in the slightest.

Fortunately, I had the gut reaction to call my dad (that says a fair bit about how much we’ve worked on our relationship over the past year or so, honestly, as well as how good it was to begin with even if it was awful on medical and mental stuff). I managed to tell him some amount of what was going on, and he helped calm me down a bit and talked me into calling the OT’s office and explaining to them what was happening and asking for their advice. The woman on the phone was quite good at handling herself, and helped lay things out for me more clearly, as well as telling me a bit more about how OT works – we were going to spend most of the time talking anyway, and not actually do a whole lot, so even if I couldn’t use my arm at all it would still be beneficial to come in for the appointment, if I thought I could concentrate enough to talk. I basically decided “fuck it, I’m going anyway” and did just that. (I also let them know that I’d need help filling out paperwork, since not being able to write was the primary reason I was going for occupational therapy to begin with.)

I had calmed down a decent bit by the time I actually got there maybe twenty minutes later, but sitting in the waiting room, I was still struggling to control the pain and the panic; I tried to focus on the news they had playing on the TV, and listening to the conversations the staff was having nearby. After a while, they called me back to fill out paperwork, which went fine – for once, the office staff at a medical institution was actually understanding of their clients’ medical issues, and they were actually very willing to help me fill out their paperwork! (You would think that would be standard, but LOLNOPE. In my experience, most receptionists are incredibly judgmental and probably somewhat overworked, and they look at me and see a perfectly healthy twenty-year-old with no reason to have trouble filling out standard paperwork despite the fact that they are looking at paperwork that says I definitely have some really frustrating and severe issues and basically tell me that they have to have it filled out and it’s my problem to figure out how. Ugh.)

So, score point number two for this place – their office staff is willing to work with me! (First point was helping me calm down over the phone.)

Once I went back and started talking to the occupational therapist, he naturally had a lot of questions about my medical history. And for me, my medical history is an incredibly painful subject – I have to recount my life story, more or less, and I can’t do that without crying. He saw that, and moved us into a more private area, so I wouldn’t be quite so uncomfortable about being uncomfortable, without me having to say a thing about it. Score point number three!

He seemed to have some knowledge about JHS, and he was quite attentive as I was explaining things (which takes a while and a lot of back and forth, and some docs just don’t have the patience, so point number four). He was impressed by my own self-awareness and knowledge of my conditions, as well as my initiative and persistence, and while that’s becoming fairly par for the course, it’s still neat to hear it from someone new. And then we actually did start doing some basic therapy!

He showed me a different way to hold a pen – between my index and middle finger, instead of between my index finger and thumb – that puts far less pressure on the bones in the tips of my fingers and uses less finger motion and more wrist motion for writing. (Guiding principle of physical therapy – use the bigger joints instead of the smaller ones whenever possible, because they have bigger and stronger muscles and more stability and can generally take more abuse if need be.) We also played around with different grips and foams to put on/around the pen to make it easier to use with less pressure. I’m pretty sure I’m going to come out of this at least able to write enough to make it through a college math course, though I probably will still want to do essays and such via laptop (in no small part because my handwriting has never been great, and writing in this different way means it’s even worse – that’ll improve with time and practice, but it’s still going to be way easier for my profs to read my typed work than my written work).

He also had me try out some electrical therapy, and I’m probably going to be taking home a TENS unit in the near future to do that on my own as needed. Now, there are several different types of electrical therapy – it can be used to exercise muscles, to retrain things, and so on – but we weren’t doing any of that. As he described it, it can be used purely as a pain management treatment. Your brain can only focus on so much, and so you can distract it from the pain by giving it this new and different and overriding sensation of minor electrical stimulation. It doesn’t do anything to treat the underlying condition, but it is an effective way to manage pain. So while we were trying out grips and such, I had this machine hooked up to my arm. And yeah, it definitely did help – it was set pretty low, and it didn’t override the peaks of the pain, but it did override the rest of it, and I definitely noticed when it turned off (it only works for a certain period of time, for safety purposes). So, he’s going to let my referring doctor (my rheumatologist at Vandy) know that we tried that and it helped and that I probably should have my own unit to use at home, so that my rheumo can tell my insurance that I need it and officially prescribe it for me, so that I can actually get that! He’ll teach me more about using it, of course, so I don’t zap myself badly. (I’ll admit, I was already wanting to get something like this for kink purposes, so this is kinda killing two birds with one stone – and getting insurance to pay for it. I’m being careful to not let that side of things influence my thought-process on the medical side of things, though, and it really did help and would be quite useful purely for medical reasons.)

And we went ahead and scheduled several more appointments, including one with a physical therapist to get started on that end, which is EXCELLENT AND SO RELEIVING AND WONDERFUL AND YAY.

So, when I got back home, I was feeling waaaay more hopeful and encouraged about the future than I have in quite a while. I still am, in fact, though the happy-good-feels wore off a fair bit as my arm started aching again (seriously, why is it doing this and how can I make it stop?!), and as those good feels wore off I realized that today was really quite exhausting and overwhelming, with the pain and the panic attack and the new doctor song-and-dance and the good-feels high and the post-good-feels-high crash. So now I’m sitting and typing and trying not to think about my arm and being tired.

Eh. I’ll take it.

Monday, January 5, 2015

New Year's Update

So, a great deal has happened since I wrote you last; I'll try and organize everything in a semi-coherent fashion.

  • I GOT DIAGNOSED!!!! I have hypermobility-type/type 3 Ehlers-Danlos Syndrome, a rare genetic disorder that means my body doesn't make/arrange collagen correctly. That explains literally all of my physical symptoms. (I'll go into more detail about this below.)
  • Edit: After talking with the specialist, mentioned below, we're pretty sure that I have joint hypermobility syndrome, which is basically EDS-H but without some of the side stuff.
  • I'm getting treated! I have an appointment with a research university's rheumatology group - probably the best specialists in this part of the country - and I suspect that someone there will have experience treating EDS. I'm hoping that we can go from there to physical therapy and pain management and sleep therapy and really start getting my life back on track!
  • I talked with my parents and my psychologist about my PTSD, confirmed that's what it is, and came up with some things we can do to address that. Mostly it's just having to disassociate certain stimuli with the panicked response over time, but there are some things we can simply avoid which will make (and have made!) my visits home far less stressful.
  • I talked with my cousin Jess, who has gone through some roughly similar stuff, and got her contact info to continue talking with her. It's interesting to see what we've both gone through and how it's similar, as well as how it's different, but most of all it's such a relief to speak with someone who actually understands what this sort of thing is like, instead of trying to explain it to others who only sort of "get it".
  • The fellow who had been living with me moved out, so I actually have my whole apartment to myself! This is a good thing - I needed him here for a while, but I've definitely reached the point that I'm ready for my own place for realsies, and now I get to have that!

So, I GOT DIAGNOSED!!!! In a rather unorthodox fashion, too.

I spend a lot of time on a website called reddit, including the AskReddit section. For those unfamiliar with that, it's basically a place where you can ask a question, as specific or as broad as you like, and people from around the Internet will come and answer it. Questions have ranged from "If you had a million dollars, what would you not buy?" to "What's the worst thing you remember about elementary school?" and beyond.

One day, someone asked "What misconception would you like to clear up?" and I decided to post about invisible disabilities and how you can't (fairly) judge folks who use handicap parking spaces by their appearance (that post is here, if you'd like to read it). Eventually, someone asked me to talk about my disability, so I posted about a page describing my symptoms. This got a lot of attention, and several thousand people wound up reading it.

Pretty quickly, I started getting replies and direct messages about that - from people who have Ehlers-Danlos Syndrome, from med students studying it, and one from a rheumatologist who treats a great deal of it, saying that my symptoms sound very much like hypermobility EDS. After the first one or two suggestions, I thanked the folks who mentioned it, and went to look into it, not expecting much - people often have suggestions of what I might have, and rarely are they that similar to what I experience, but it's still worth checking.

And my jaw dropped. The symptoms of EDS matched my symptoms almost exactly - joints that bend and stretch farther than normal, chronic musculoskeletal pain, frequent sprains and dislocations, and some things that I'd never associated with my "joint problem" (migranes, nearsightedness, lightheadedness/fainting upon suddenly standing). I managed to find the diagnostic criteria - what doctors use to determine whether or not you have a given condition or disease - and I definitely fulfill that, so I definitely have EDS. I did some more reading and found that doctors rarely diagnose it because it simply isn't covered much in med school; it's too rare and too little can be done for it to be worth covering.

I wound up printing some information on EDS (this and this) along with some things about my family history and my sleep schedule and going in to see my doctor. He looked through what I brought him and was just as floored as I had been. "Most people who come in and say they found what they have on the internet are completely wrong, but you're absolutely right on this." He also mentioned that the only thing he'd previously known about EDS was that it was "a genetic connective tissue disorder," which is why he hadn't even thought of it in the twelve+ years of treating me.

So, we wound up deciding to try and get into Vanderbilt again, now that we have a diagnosis, and he sent off some paperwork describing my condition and asking for their help, and a few weeks later... voila! I have an appointment with them later this month, and hopefully someone there has some experience treating this disease and will have a decent idea of what to do next. (It should involve sleep therapy, physical therapy, and some pain management, probably along with more testing to ensure it's not something else, and maybe seeing a geneticist.)

And thus, after seeing nigh on twenty different doctors and specialists for different aspects of this, I finally get an accurate diagnosis by talking about my symptoms on the internet. I basically accidentally crowdsourced my diagnosis. It's hilariously awesome, and very, very typical of my entire medical experience thus far (me fighting tooth and nail against what feels like the entire world to get what I know I need until finally some folks get on my side for a change).

Partially as a result of that, and partially just because of the natural progression of things, I'm finally doing better with my depression, anxiety, and (recently-diagnosed) PTSD. I've been able to go home several times over the last few months without having nearly as much stress, and I've been able to be up and doing things much more than what had come to be usual for me. (I was also able to fire a sleep doctor who just wasn't willing to take me seriously, though I got some excellent advice from him and started doing some bright-light therapy to help with normalizing my sleep schedule.)

So overall, doing much better than several months or years ago, and I'm hoping things will keep moving up and forward!

Monday, October 6, 2014

The rollar coaster of emotions, or "getting back on my meds"

I struggle with taking my meds consistently - partly it's just forgetfulness and lack of a consistent daily routine (I can't even begin to describe my sleeping schedule, other than that it doesn't resemble a "schedule" in the slightest), and partly it's a certain lack of motivation, the same lack of motivation that makes it a struggle to take a shower or brush my teeth or eat - the simple, essential everyday tasks required for normal living. Sometimes it just feels like I need to feel for a while what I feel when I'm not on my meds.

So I go through periods of taking my meds every day, taking them sporadically, and not taking them at all. This means I'm starting to get accustomed to how things go when I start taking them consistently again after I've not had them for a while, and it's kind of interesting.

When I've been off my meds for a while (and I'm specifically talking antidepressants here; I don't take any other meds on a regular basis at this point), I feel numb, sort of empty. I don't feel much at all. I tend to wind up trying to fill my time with the things that make me actually feel something - usually Runescape, which gives me some sense of forward progress towards a large end goal; League of Legends, which requires significant focus and uses several normally unrelated areas of my brain and skillset and lets me feel excitement and achievement (along with disappointment, frustration, and anger at teammates and shoddy Internet connections but that's beside the point); and porn, which gives me at least a short period of all-consuming bliss... and exercise, I guess? It also tends to put me to sleep, which is an effective way to pass the time. For the most part, I'm just filling time; trying to distract myself with things that are less destructive than sinking into a black hole of endless despair.

When I start taking my meds again, they don't really kick in right away. It takes time for them to build up in my system and have a noticeable effect. It also takes time for all of my emotions to "come back", and they return in a specific order.

After a few days, I get more passionate and less apathetic sadness - instead of staring at the wall wondering about my life, I'm clutching my stuffed bear and sobbing. (This is not exactly encouraging, nor is it conducive to continuing to take my meds, but I'm learning to push through it.)

A few days later, and I get some anger - I actually have to fight the urge not to flame my teammates in League, whereas normally (off meds and on full meds) I don't really have the urge to do that at all. This also tends to be the period where I feel the most hatred towards my dad for inadvertently putting me through all of this.

A few more days, and I've progressed to feeling some positive emotions. This is where I am now. Today, I accomplished a handful of minor tasks (taking out the recycling, checking the mail, calling back someone who left me a voicemail and had the wrong number) and felt incredibly good about doing so, even though they were very minor things. During this time I'm also incredibly emotionally raw and vulnerable - I normally have pretty thick skin, but right now it feels like I don't have skin (in the emotional sense), which is very disconcerting. I'm actually feeling homesick, which is highly unusual. I watched a gif of a cat being adorable and it provoked major wistfulness about not having a cat; I had to hug some stuffed animals for a while before I felt better.

Hopefully, a few more days and I'll have worked all the way back up to feeling a healthy range of emotions, and participating in my hobbies more because I genuinely enjoy them and less because I need a distraction. And actually participate more in all of my hobbies - I'm just not able to read or listen to music the same way when I'm off my meds, not at all.

Tuesday, August 12, 2014

In Memory of Robin Williams

Mental illness, especially depression, is not something you “get through” or “get over”. It ebbs and flows, waxes and wanes, but it never goes away; it’s always there. The best you can do is learn to cope and function in spite of it, to work around it. Some of us never make it that far, and some of us do but then the illness changes, and we have to start all over again. It's a constant struggle, day by day, though it is easier on some days and harder on others. Even the best of us have times of darkness, and sometimes that darkness is just too much to bear.

Do not look down on those who fall along the way; they were not weak. Every day that they survived showed their immeasurable strength. How their journey ended does not lessen that.

It’s nice not to be scared.

I’ve been realizing that I have abnormal reactions to certain stimuli or events; I’ve been trying to identify those, figure out why I have those reactions, and train myself out of them where appropriate.

For example: hearing people around me waking up and getting ready and going about their day while I’m asleep is terrifying. The sounds of my roommates and neighbors making breakfast and taking showers and leaving for school or work, the sounds of cars driving outside, even just birds chirping outside, all contribute to a knot of fear and worry and dread deep in my gut. Because while growing up, those were the signs that my time of solitude was ending, that I was going to have to go face the world again, and if I was hearing them while in bed that meant I hadn’t gotten nearly enough sleep. And I would just lie in bed, unable to believe that I had to do this again, feeling like a dog cowering in the corner.

Another example: it’s incredibly difficult for me to face up to someone I think I’ve disappointed, or whose expectations I haven’t met, especially my parents. I’ll do almost anything to avoid it, even blatantly lying. I’m still working out the “why” for that one. I know that my dad’s tone of voice has something to do with it; sometimes he speaks in a particular combination of frustration and scorn that is incredibly hurtful, though he doesn’t mean it to be, and avoiding that is a good thing. I’ve spoken with him about that, and I think I’ll be able to speak up and say something to him if he uses that tone of voice again, but I’m still dealing with the instinctive avoidance of disappointing others.

I know there are other such unusual responses in my life, and I’m trying to keep an eye out for them so that I can deal with them. These reactions lead me to believe that I am dealing with some degree of PTSD, which is an astonishing thought to think about one’s upbringing. Regardless, I’ve been able to make some solid progress towards that end – simply talking with my father about that tone of voice took an incredible amount of courage and helped relieve my mind a great deal, and I’ve been able to be more honest with my parents and others in the past few months both before and after that. Likewise, this morning I was able to hear the sounds of the world waking around me and I actually didn’t feel scared – it was so different, I wondered what was “off” about this morning until I figured it out.

It’s nice not to be scared.

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.