I am not crazy, it’s just everyone else.
March 27th, 2008I write this in a sleep-deprived state and so you will put up with much rambling… Although everything I’ve written in the past two years (at least) has been written in a sleep deprived state of varying degrees. You see, I have severe Obstructive Sleep Apnea as a recent visit to a sleep study center has shown. This is my attempt to bring everyone I’ve fallen out of touch with into the know.
This comes as a bit of a relief because things have been looking bad for a long time now, it’s been over a year since I last posted anything and there is a good reason for that. Even when I was still posting I was sinking into a depressive and difficult state and those were some of my last documented attempts to reach out to the world until now. Right now I am tired, but I’m hopeful for the first time in months. I feel ready to start talking to friends I’ve neglected for the past year or two, though the withdrawing process has been a long and gradual one. Some people may not even notice the change except upon reflection of earlier years, it’s been so steady and so gradual that I nearly had myself convinced that I have always been a tired and hopeless disappointment.
Potential is a cruel word.
Dates are all completely fuzzy for me as I’ve been in a daze (and still am despite my excitement) but I’ll spin you my tale and hope that others read this and understand how easy it is to lose so much to such a simple problem. It started in the middle high school when I switched from Johnson to Campbell at the beginning of grade 11. It was 2002 or 2001 I’m 22 now in 2008 and so this has been creeping for my entire adulthood up until now. I remember going to bed later and having troubles waking up. I remember I had always been 15 minutes early for school (hard to believe, but it’s true) until around this time when I slowly started to slip… Soon it was 10 minutes, then 5 minutes early, then running in just on time, then a few minutes late and a couple times missing the first class entirely. When I did make it to English, my first class of the morning one of the semesters (time is fuzzy) I remember sleeping with my head perched on my two arms while sitting straight up. I remember resting my eyes because of lack of sleep and missing entire portions of the class. I remember not having time in the mornings to eat proper breakfasts because I was sleeping in too late.
Those problems were to look mild in later years, but grade 12 continued a slow decent and I ended up graduating from high school with a 66.7% average (or something very near, I know it was just over a percent higher than the 65% minimum required to get into the University Faculty of Science.) This is a heavy contrast to the 80-85% average grade 9 and 10 at Johnson. At the time it was easily attributed to switching my high school mid-way, which probably accounted for some of it… But even back then sleep was beginning to be an issue. I know that my father had to wake me up some days by literally filling a glass with water and throwing it on me. I acquired an automatic reflex of sitting up quickly when I heard the doorknob opening after the first few times, though I would still be really out of it and half asleep. Eventually he caught on that when he left I just laid down again and resumed sleep (which he thought was consciously done though it was not as I have no recollection of having done this unless I was actually kept awake long enough to clue into my surroundings.) This caused me to automatically sit up quickly to a zesty morning splash of water in my face. Refreshing.
I have never been a punctual person. I’m a thorough and calculating individual and I used to get things done, but sometimes a day late or so. My marks would reflect this, but I still managed 70% - 80% averages even with 10-20% deductions for late hand-ins. I was never great at math and I was never a 95% average student, though some individual classes of interest I did do this well in (grade 10 science I had a 97% and I am certain of this.) But even though I’ve always procrastinated a bit and been a little too easy going the issue of sleep began to crop up and was easily disguised by that long-standing and difficult, but not life-threatening issue.
After grade 12 I immediately entered the faculty of science and the faculty of art for a double major at the University of Regina in Computer Science and Visual Art. University life treated me kindly at first and I only really flagged due to laziness and adjustment time at the beginning. Class schedules were fairly lax and allowed for a more flexible sleeping schedule.
After my first semester I had decent but not stellar marks and my parents were unhappy with my 68 average from the five course load I took (I was working 30 hour workweeks at the time as well and so I believe I had myself over-extended anyway), I was as well, and endeavored to do better, as a result they told me I had to pay for university myself next semester and so I had to drop out of most of my classes for funding reasons and only took cs 170 and another class (two classes total) which allowed me to get an 85% or so in my cs course and do decently in the other class I did take. I then worked two full-time jobs simultaneously during the summer break (sometimes logging 20 hours a day for several consecutive days giving myself only 4 hour breaks between jobs.) After that summer my parents helped pay a bit more for university and along with my own cash I managed to fund a four course load (which was more manageable) and I did a little better than before with the only really bad mark being Math. Next semester I took four more courses and decided to take a break from Math to flunk Statistics instead. By this point my ability to concentrate was notably waning, even the liberal sleep schedule wasn’t really helping me and I often felt absolutely tired during the day. Sometimes I would skip a class to stay in the CS lounge and work on personal projects which required less focus which is a primary reason for my statistics issues… That and the professor actually literally put me to sleep a few times, though he put people without sleeping issues to sleep as well. His monotone voice did -not- help things Garry Larsen, if you are reading this, you’re a smart dude, but even if I were at my most alert it is very difficult to find you interesting enough to focus on. It is an impossible task with a sleeping disorder (which was probably mild at this point, though noticeable.)
The next summer I took my Math 110 and passed it (woot.)
The next year I began noticeably struggling in my courses. I always did decently in my CS courses, but even those became more difficult as time went on with exceptions being project courses in which I would often dedicate too many hours while getting way too few marks for the ambitiousness and scope and completeness of the projects. I got many of my 300 level courses out of the way this year and just scraped a 65 average or so. This is where years start to get blurry.
I believe it was this next summer that I arranged my work-term with the Visual Resource Center of the UofR. The work term started well and ended decently, though I had started coming into work later more frequently as a result of troubles waking up. I began to require multiple alarm clocks and noticed my ability to turn off the alarms without being aware of the situation. I was still pretty optimistic most of the time, but had begun to fall into a bit of a funk because I realized I’d begun to alienate myself from my friends. I believe this was the end of 2005 that depression began to set in as a result of not getting out of the house nearly at all and doing very little with friends. Despite beginning to fail a bit I was still charismatic and hard-working while I was on task. I also had gathered quite a bit of knowledge through sheer force of will and enjoyment of my craft (programming) and networking has always come easy to me even at my worst. As a result I managed to secure a position with Electronic Arts and left my funk behind for a bit as excitement caught me up and I went to work at the largest electronic publisher in the industry for their Black Box team. This is also, coincidentally when I started my blog… You can see from my tone back then that I wasn’t deeply troubled and kept myself incredibly busy, but sleep was an issue.
I started work with a bang, impressed my master (sort of had an apprentice thing going on with one of the busiest and most important programmers in the company) and really just kept rolling out the awesome. I kicked it into high-gear all over the deepest of the deep absolutely lowest level memory management game code and popped up some nice highest of the high-end share point website custom applications etc. After a while living in Vancouver, towards the last month and a half of my term I really started crashing, having difficulty waking myself up to go to a job I loved, having difficulty concentrating on working at new tasks etc. 30 days of rain did not help. I still did alright the days I went, and I managed to keep myself under the radar mostly I think. I realized I was having some serious problems about this time but I was worried and afraid because I was kinda supposed to be living my dream and I was actually so drained I could not rise to the occasion.
This is something I have never ever admitted to because it caused me a deep and upsetting shame (it still does even to this day). I did not even attend the last two weeks of my coop term. Some of you may ask how the fuck that even happens. I loved my job, I loved the people I worked for and with and I loved the environment and everything. But I could not drag myself out of bed and even slept entire days away at times. This is most definitely when my depression started on… I kept in good relations with everyone I worked with, but my position was so ambiguous that nobody knew who was managing me. Typically I work very, very well unmanaged and it would not have even been an issue.
At the start of my term there were two weeks where I had no manager, no goals, no projects. I worked my ass off every day reading for hours about ea coding standards, multi-threaded programming (papers released by the company), familiarizing myself with the code-base and CVS system and compiling the project (which is a feat on a multi-million line application.) I even took on a goofy task to change the colour of all the cars to red when it was given by a fellow programmer (Shane I believe his name was.)
I went on lunches with the other programmers and asked every two days if there was someone I should be talking to or something specific to do before I was eventually handed over to an advanced programmer (Martin) who gave me my first tasks dealing with the in-house Playstation 2 development station/compiler which I completed without direction.
Things were going well and I was asked to work on the Sharepoint site (a web-based management tool) which I was less than thrilled working with. Producers and other managers arranged me to work on it because of past experience and my ability to interact with other people well. I designed and re-designed that site a few times with conflicting directions from various managers and I was acting as the sole admin for the site. I did my job well, but this distracted from my programming duties and Martin understood that I was working with that.
After a few layoffs during one of the months I was left without any clear manager and with no other contacts to deal with for the sharepoint site, I had been having notable issues getting to work by 11:00 even (which is late-ish to come in, but flex time allowed for it) and I felt constantly fatigued. I was given a task by Martin to make a memory reporting application which I did, though a tool called Game Talk did not appear to work exactly right to implement it and so I ended up needing to use the older “bFunk” networking engine we had (which I was supposed to have replaced by the end of my coop term, but did not because of difficulties with getting clear instructions on use from the dude who made Game Talk and because it just didn’t seem to send messages from game to tool like bFunk did. I’m sure it could have worked, but there aren’t exactly docs for these types of things sometimes and in this case, the few examples there were did not contain relevant info so I was forced to dig and dither for a month or so which was disheartening when combined with the sharepoint duties being confused and with my sleep issues.) I put a lot of work into the project and ended up with a tool that worked but didn’t have a great interface and so I was unhappy with it and I wasn’t sure how to go about getting more info about what I needed to work on because the fellow was fairly busy and unapproachable and didn’t seem to understand or have the time to understand what I needed to do.
Anyway, long story short, I was kind of in limbo with a project that I was supposed to be working on (and was working on) but with a lack of focus because of a constant numbing fatigue, I’d spend a couple hours zoned out at times reading code before realizing I wasn’t even really taking it in right. This is a HUGE difference from the beginning when I was cranking out compatible code on a weekly basis with complex functionality and using existing functions of very complex systems to seamlessly integrate my work. Between being in sharepoint limbo and on a difficult project with no easily accessable information (or if it was, an inability to actually concentrate enough to grok it) and constantly sleeping in too much I slid out of my coop term as silently as possible hoping only to leave my best first impression with those who I had worked with. I spoke with Jeff, the fellow who had interviewed me at the end and he said he regretted letting management take me onto the sharepoint project which I agreed with. He didn’t have the whole story, but it’s clear that he understood that I wasn’t exactly happy and he knew I wasn’t doing nearly as well at the end as I started and knew I got lost in the cracks though he blamed management and not me which is at least partially right. I was essentially in a work environment where I reported to nobody and so no huge alarms sounded when I was afk for the last bit. My parents called EA wondering where I was, which stressed me out incredibly because I was trying not to draw attention to my issues and I’m certain that would have at least tipped them off (really I should have told them about my sleeping issues, but it’s really hard to do that when you’re in a coop position trying to impress. I was doing my best to fix the problem but it just wasn’t working.)
From the perspective of sleeping for days at a time without being missed, Martin was actually on holidays for basically the last two months of my term, the website stuff would have accounted for a lot of my lack of coordinating with him anyway, and the site had so many revolving door managers that I was the most reliable one working on it anyway. I’m sure people wondered and questioned where I was at times, but nobody directly working with me was actually around or checking in or even watching closely and so it was easy for a kid with deepening depression and sleep issues to slip through the cracks. It would have been more healthy if I had worked with a team on something most certainly towards the end, the solitary work environment was a contributing factor to my depression. It was interesting because I was singled out to work on solitary tasks and trusted to do so (and I did my best not to break that trust, though events conspired against me I suppose and I was too ashamed to say anything about my worsening situation.)
Even still, I genuinely believe that I gave my best and even with a sloppy finish I am convinced EA got their salary’s worth out of the code I did produce. Despite feeling upset about my attendance issues towards the end, they got a lot of good work out of me even if you do not give any understanding towards a sleep disorder and deepening depression.
Moving back to Regina was hard on me, I left behind someone I cared for, a job that I cared about (though it was causing me stress near the end due to sleep issues and feeling like I was lost in the cracks.) University classes are kind of blurry, I don’t have a good recollection of what I was doing, but I know I was working on a website which I was working slowly on and it ended up getting me sued (though I wasn’t being paid and the entire situation was rediculous as it was stressful. Definitely not something that I should have been sued over considering the circumstances, but also something that had I been awake I could have had done much faster anyway.) This added to my depression and really set me in a deep dark place where I was always tired, always sleeping and when I was awake I was feeling terrible about myself. To add insult to injury I was having very, very severe issues waking up on time and was constantly called lazy by my parents which I ended up internalizing. To be fair, they were not inaccurate and they couldn’t have known better really, but it still hurt and added to my unhappiness. It got to the point where I was afraid to come home and would stay in the CS lounge all day. I would avoid classes sometimes by driving to a parking lot and sleeping in my car because I was so rediculously tired. I would sleep in the CS lounge sometimes too if nobody else was around and I could get away with it. I would sometimes hide in my room afraid to draw attention to myself because I was hoping my parents would leave the house and forget about me so I could sleep. I didn’t want to feel the terrible guilt about shorting myself, my parents and everyone who depended on me and so it became difficult to talk to friends, difficult to tell the truth about my marks or my activities…
I was so deeply ashamed of how “lazy” I had become. I had failed so many people and I just wanted to withdraw from the world because I knew I couldn’t do anything. This is not a dramatization, I could -not- do anything. If it involved being awake and concentrating for extended periods it was right out the window, just not possible. It got to the point where I couldn’t do anything I even liked doing because I was too tired. I could play games for a couple hours before needing a nap, and sometimes would force myself to stay up even when tired if it was something I could do that was engaging, but simple (such as building a warcraft 3 map which is about as tough as working on javascript webpages, but was also fun enough and gathered a following so it made me feel worthwhile.)
I managed to care for a puppy because it slept odd hours like me anyway (when it was little at least) and so i could feed it milk and such when nobody else had the energy to. It made little difference to me when I was awake or not because regardless of how much sleep I got I was always tired. I slept sometimes very little and sometimes 15 hour unbroken stretches and I always felt just as tired. Why I felt like this was a mystery, I didn’t know what was wrong and assumed other people had to deal with the same feelings and issues I had and that they were just better at it and were stronger, better people because of it. I saw myself as weak and useless and lazy because other people could stay awake all day and clean their rooms and go to work and school and go out with friends. It had been a few years since I had truly felt awake and I forgot the feeling. I didn’t and still do not know what it feels like to be awake. I sit here at 1:00 AM feeling a bit more tired than usual, but usual tiredness is unbearable and so this is only a little more than unbearable.
I do not remember time or events very well for the past year. Since near the end of my coop term at Vancouver my memory crackles like the static of a half-tuned television.
I saw Dr. Stephen Bester, my family doctor at about this time and I mentioned that I felt very unhappy and had a lack of energy and did not enjoy doing things I used to. I told him that I felt half awake and half alive, but that I thought it was just because I hadn’t really gotten out of the house and done anything for a while. I didn’t really think of my tiredness at this point as the primary issue… It may have caused my unhappiness, but when you feel so genuinely worthless and you can’t reason out any way to convince yourself otherwise that becomes a primary concern. He thought so too and decided to try me out on Effexor which I believe was a good diagnosis to get things rolling. He did the best with the information he had.
I remember walking to school and seeing everything vibrantly for the first time in my adult life. It faded after the first week and I still do not know if it was the placebo effect or not, I began to worry that was all it was and that I was going crazy as the Effexor made me slowly stop caring about life. I was now able to lay in bed and not care about life as much. This was a bit of an improvement, but I was still always tired, still being untruthful about school and jobs and such because even though I was being treated I felt I should be doing better and I wasn’t. I didn’t know much about depression at this point and so I assumed I was on the best thing and that I was just failing. This was made no better by my mother telling me in frustration at one point after finding me in one of my many lies that “all the medication in the world won’t fix you!” That was and still is one of the most painful things I’ve ever heard and it really destroyed me for a while. I don’t blame her for saying it, I’d be easily as frustrated and was actually telling myself much worse daily anyway as I talked myself deeper. I would build upon my unhappiness by dwelling on it and expand upon any little criticism with 10 of my own.
One of the most terrible things about depression, chemically caused or otherwise is that you begin to become unhappy that you are so unhappy. You begin to fear that you will never feel better. Hearing those words really hammered me on such a level that I can’t get it across in any way. I know I cannot relate to the feeling of a father losing his only son. It is with this example that I hope you understand that you cannot possibly understand many of my own feelings. This is a deadly type of sorrow, impossible to relate to personally unless you have experienced real clinical depression with no definable source and no perceived cure.
I have had seriously suicidal thoughts in my life twice now and I believe I will never again experience them. Suicide is not a crime of passion. It is a crime of conviction and hopeless acceptance of unbearable events outside of your own abilities. For me, I felt that I would never feel alive again and I knew that I was letting down everyone who knew me, I accepted that I had failed on such fundamental levels to even care for myself and that the best thing for everyone around me would be to end my life rather than continue to drag down everyone I ever loved. This feeling was based on faulty assumptions, but that made it no less real. Things can change, but at the time and for a long time after it did not seem that they would or could and so for a long while I felt that even though I was not suicidal my thought processes that brought me to that point weren’t exactly crazy or unreasonable, just desperate.
I was hesitantly, but willingly institutionalized on the advice of my psychiatrist referred by my family doctor and ended up spending almost 3 months in the mental ward.
I know that I was there for a long period of time, but I seriously have only bits of memory from the place. I was so dead tired most of the time and I was also very unhappy, very unsettled, and had mood altering drugs (which I completely believe added to my troubles initially when I started on Effexor, but did help at the later stages of my decent into depression.)
One of the most cruel things about being in a mental ward with good insight and knowledge about the problem you are diagnosed with is that you are able to rationally and wholly plot out your decent into madness on such a level that you truly feel crazy while also feeling like an impostor. I could describe and theorize on my reasons for feeling shitty and my reasons for having panic attacks and freaking out on epic levels, I could map out my feelings fairly well, I could even joke about my issues but I could not, for all of the effort I had in me, snap out of it. That was one of the most frustrating things about being mentally ill… I was most definitely depressed, but I do not believe that it was due to a chemical imbalance anymore.
I have since stopped taking all anxiety and depression medications and I feel perfectly fine now that I have another diagnosis for my sleeping issues, which were eventually determined to be a factor. I know that they helped me out when I was at my lowest, I had a serious case of the blues. Effexor probably just put me into the hole a bit faster, but I would have ended up there anyway. I’m all for mood altering medications when they are required and I do not regret my compliance in taking anything. I also now believe in the monster “Depression” because it is a real and almost tangible thing. It can devour you whole and leave you in such a downward spiral that it destroys your life. My particular case has another root, but depression can most definitely be brought on by completely chemical changes and so I know that it is just as real for some people who do not have another root cause. I have seen it. That might not sound like much, but I thought it was something you could will yourself out of or reason yourself out of and it is not. In my case, reasoning myself out of depression was actually just causing more depression because from every angle of view I was physically and mentally unable to do things that I used to love for no apparent reason to such a degree that everything seemed hopeless. I couldn’t pin it on any accident or injury and I had nothing that I knew of that I could work towards and that left me without hope especially after medications only seemed to help mildly.
I always knew I had troubles with waking up, but I never knew the reason. My parents were the only ones who knew the true extent of this and the zeal with which we all described that particular aspect must have made it sound contrived. I mean, being able to turn off 3 alarms and sleep without recollection of doing it sounds completely over the top and exaggerated, but not one word of it was. I believe that might have been why my sleeping issues were not truly taken seriously until my psychiatrist poked me hard with a pencil, shook me and called my name without response or even memory of the event. To this day I still do not remember him doing it, but after a lot of concentrating I do recall a light poking on my back, but I had felt like it was in a dream until he told me about it and I reflected and I do not remember my name being called.
I have been routinely called lazy by my parents for years for failure to wake up on prompting and alarms and only being half-believed that when I turned off my alarms and went back to bed I would have no recollection upon waking up later. The incredulity of completely sub-conscious reactions of complex nature due to complete tiredness has always been a factor and it was no different with doctors. Even when my parents were describing my issues with sleep I do not believe they even completely believed that I was not aware of having woken up several times. I know sometimes I would be aware of waking up, setting my alarm clock ahead 5 minutes and sleeping again, but many times I actually lacked any remembrance of the first 30 seconds to 2 minutes of being up. Despite this, I was prescribed a wakeful drug called Modafanil which helped vaguely, though I still managed to sleep entire days and nights away while on 100 mg (the max dosage) of this medication (which is replacing amphetamines for use in long hour army missions up to 80 hours in length and which is unable to keep me awake for 5 hours sometimes.)
After a while they got sick of me in the mental ward and I was discharged with a referral to a sleep clinic where I went with a completed sleep log dictating 10-15 hour straight sleep periods with frequent daytime naps wherever I was not working and had the chance (this is including my parents consistently waking me up and forcing me out of bed for the day.) I constantly felt sleep deprived and had troubles staying awake for even a few hours at a time especially when I first got home.
Getting regular hours while being forced awake during the day helped me keep those hours a bit better, but it was more a tolerance for pain than a regular schedule. I would feel absolutely brain dead, like a wet blanket was over my brain at all times except for maybe the first hour or two after waking and even then I could fall back asleep nearly immediately when I had the chance.
The advice I and my parents were given was to avoid naps during the day and try to get 12 hours of sleep a night, I was told that this was possibly my actual nightly requirement for sleep despite the fact that I frequently reminded the doctor that I could easily sleep a 12 hour night and wake un-rested. At this point many of you are clue-ing in to the fact that I do indeed have a sleep quality issue and that no amount of sleeping seems to help. you would be right, but it took a lot of work to set up an appointment and no amount of convincing was able to actually get me taken 100% seriously about my sleeping issues, I was written off as depressed with an anxiety disorder, though I must admit it looked very much like these issues I can’t seriously fault my psychiatrist for the diagnosis because that’s exactly what I had, though there was a deeper reason for it that had nothing to do with traumatic events or injury or regularly out of whack chemicals. I do, however wonder how the first sleep specialist managed to mitigate all the symptoms and issues I was referring to and assume it was a schedule issue above any possible sleep quality issue (which he vaguely mentioned as a possibility.)
Anyway, we were put on the 1.5 year Regina, Saskatchewan sleep clinic wait list.
As my mom said, if we had to wait that long myself and both my parents would have been living in the mental ward because I was seriously driving them crazy. They all over my ass at every moment of every day about not sleeping and staying awake during the day… It felt like I was being subject to sleep deprivation torture. We decided to hit up a private clinic though it would cost 1000$ out of pocket (which my parents graciously paid for) and we had to travel to Calgary. I may have unfairly painted my parents as nagging and cruel, that was not my intention, but this is written from my point of view and at times even though they were doing their best and have always supported me it has been very hard on them. They are really great and I would probably not be alive today if not for their tenacity and willingness to do anything they believed they could do to help me.
Here I am in Calgary finally with the proof I need to show that I have been getting nearly no effective sleep for about two years. I have severe sleep apnea and just in the quick overview of the test results that I observed I saw common occurrences of 15 seconds of breathing steadily followed by 45 second periods of an inability to intake new air followed by the same several times in a row. During a 2 minute period many times a night I would only breathe for 30 seconds holding my breath the other 1 minute 30 seconds. This is not an exaggeration. Each time this occurs oxygen levels drop sometimes significantly and my brainwaves would spike, legs would quiver slightly as I gasped for oxygen and completely disrupted my sleep each occurrence. This would happen sometimes several times a minute for shorter breath holding (of 15 seconds or so) and the episodes would be very frequent sometimes with breathing disruption several times in a row after only 5 to 15 seconds of regular breathing. At times I would be fine for about 10 minutes or so, but then I would drop back into irregular breathing and oxygen deprivation cycles.
That alone is bad, it means that I very rarely get more than 10-20 minutes of sleep at a time before it gets disrupted severely and consistently for a stretch of minutes. When you combine this with being forced to stay awake during the day without naps as per instruction originally and during quite a bit of my stay at the mental ward (with people forcing you to get up and remain awake) it makes for a situation almost identical to traditional sleep torture where a prisoner would be forced to remain awake for long hours only to be allowed to sleep for a couple minutes before being woken and interrogated. Even when I was not being awakened by a person or kept awake by someone, my own body would continually keep my brain in a wakeful state, slapping it if it ever got comfortable.
In the head of the interrogated prisoner, a haze begins to form. His spirit is wearied to death, his legs are unsteady, and he has one sole desire: to sleep… Anyone who has experienced this desire knows that not even hunger and thirst are comparable with it.
-Menachem Begin, the Israeli prime minister from 1977-83
This describes the last two years of my life accurately.