self.watch

Hi everyone. Wherever you are I hope you're starting to see some remnants of spring weather. It's damn cold here, but I'm looking forward to enjoying being outside again. With category 3 polarized sunglasses of course.

For this post, we're going to rewind back to my initial symptom onset -- May 14th, in case your memory is worse than mine -- and take a more personal, introspective look into my illness. While the physical symptoms and resulting limitations were certainly frustrating, disheartening and scary, I have also faced a great deal of psychological turmoil that has arguably been harder to bear. This will likely be a more dramatic and intense post than my previous few. Consider yourself warned!

My intense episode of panic I experienced on May 14th was by far the most psychologically distressing event of my life. I went into detail on this in an earlier post, but the feelings of doom, despair, terror and pain were beyond what I can convey in words. Having nothing to attribute it to but my own head made it magnitudes harder for me to process.

It genuinely felt like I underwent a complete cognitive shift; like my brain suddenly no longer worked the way it had my entire life. This is extraordinarily hard to explain, but it's almost as if overnight the entire way I interacted with and perceived the world had been fundamentally altered. Nothing felt natural anymore. I consistently felt 'uncomfortable' no matter what I did. I couldn't seem to relax or feel at peace the way I did before; I couldn't reach my baseline sense of consciousness that I used to fall back on. Instead, it was like there was something in my head that was making me feel constantly tense and distressed. It didn't feel like a part of me -- it felt like my mind had somehow been compromised. When I'd frame it this way I'd feel a great deal of distress.

I hoped that what I was experiencing was some kind of 'head cold' that was making me feel different than normal, and figured the best recourse would be to ignore the strange, uncomfortable feelings. When off work I attempted to live life the way I always did. I quickly found that watching TV and using a computer were uncomfortable and unsustainable hobbies. I did find some solace in working out. However, I noticed that everything I did was beginning to feel manual, almost artificial rather than natural. I wasn't really doing anything because I wanted to, but because it was what I had always done. I kind of fell into an autopilot that felt driven by my past life's momentum.

As the symptoms progressed and I saw no signs of improvements, I began to worry a greater deal. The light sensitivity progressed, I began seeing static and floaters and light flashes, and I had a harder and harder time concentrating while at work. I dealt with debilitating headaches each day when I returned home. I remember researching my symptoms and learning about 'visual snow syndrome' and other strange diseases. There's no way that could happen to me, right? This is the stuff you read about in the news and feel bad for the victims. You never really imagine it happening to yourself. I had hope that things would get better with time, but I had feelings deep down that it wouldn't be so easy.

Objectively, my visual processing had been compromised. Nothing looked 'normal' anymore. Everthing was too bright, zoomed in but out of focus at the same time, slightly blurry but in a way I can't really explain. The literal act of looking at things became manual. I was no longer able to 'take everything in' the way I always had; I could only focus on a narrow focal dot in front of me. People's faces looked strange and unnatural. I knew it wasn't normal and it was something wrong with the way I was perceving things, but nonetheless it was distressing.

After a few weeks of my symptoms only getting worse, I was also beginning to feel the residual psychological effects. The constant tension in my head and inability to relax was canceling out all my other emotions I was used to. I stopped experiencing the normal feelings of happiness, sadness, and anger, but it went beyond that. I never felt relaxed when waking up or sleepy when it got late. I didn't feel calm and content lying on the couch after a long day. I was constantly wired and nothing I did seemed to shake it. It was extremely scary to notice these familiar feelings subside over time. It was almost like I was losing myself and my connection to the world.

Within a couple months, it had become hard for me to actually make sense of what 'normal' was. My constant discomfort hadn't diminished and had only become worse. My cognitive deficiencies were evident every day; it had become hard to focus on conversations with friends and read things as simple as restaurant menus. I began avoiding any forms of unfamiliar, challenging cognitive tasks. If I tried to power through anything remotely difficult, the head pressure and tension would become unbearable. At work, I stuck to what I was good at an what I was familiar with. At this point I truly was 'riding my momentum' I had built before becoming sick.

A significant change I noticed in myself was my stress tolerance. I've always taken pride in my patience and resilience in times of distress. However, any minor issue or inconvenience had suddenly become too much to handle. This entrenched itself in the way I viewed the world, almost overnight. Everything felt overwhelming. Things I used to find enjoyable now invoked anxiety-like responses, even when merely considering them. I'd find myself naturally wanting to do something fun, as mundane as a dinner with friends, but the concerning thought of the bright lights and loud noises would overpower my original desire.

I didn't want to admit to myself that there was something wrong. The goal was to cope, box up the feelings, and continue with life as normal. I didn't want anything to change; I wanted to be the person I had always been. I forced myself to go out with friends and spend time with family. With computers being uncomfortable, I tried to stay true to my interests and career by reading my computer science textbooks. Nothing felt right though. Everything was forced. I couldn't truly focus and enter the state of concious attention and 'flow' I had taken for granted my whole life.

I finally broke in mid-July during a trip to Seattle with my girlfriend. I imagined my symptoms as being the result of work-related stress, and time away from it all in one of my favorite places would be the perfect cure. I found that to not be the case, but moreso, having the time to truly come to terms with my physical and mental state was extremely frightening. I cried for the first time in over a decade, sitting in a cabin in the woods. I was scared. I didn't know what was happening. I wanted it to stop.

Throughout my life I developed a strong, robust identity based on my interests, skills and passions. In the span of a few months, nearly everything I took for granted and assumed as my identity had seemingly been stolen from me. As depressing and miserable as that sounds, it ultimately was a truth I was learning to face. My condition made it impossible for me to enjoy spending time on the computer, making my career immensely difficult and any kind of video games, videos or personal projects too uncomfortable to enjoy. The TV was too bright and I had become too sensitive to the motion to watch shows and movies with my friends. Reading printed text was still possible but getting more difficult every day.

Aside from my physical limitations, I found myself unable to think as quickly as I used to and my problem solving skills hindered. All the while, I had absolutely no idea what was happening to me. Scans were coming back clear. Did I have some kind of terrible, uncurable disease? I didn't have any answers. How does one deal with a complete loss of identity without a clear cause? I'm not sure there's a straightforward answer.

As my symptoms continued to progress I also began attempting to fix my heightened TSH levels through a course of levothyroxine. This did not improve any of my symptoms, and within three weeks I was facing the most intense, indescribably terrible anxiety I had ever felt (aside from my initial panic). This wasn't a physical form of anxiety, but something purely psychological that made me feel as if the world was closing in on me. Imagine watching the world end around you, all the people you hold dear and things you cherish destroyed, and facing your demise head-on. This is the best way I can describe how I felt during my worst. I recall lying in bed staring at the ceiling, virtually paralyzed with fear. The strangest thing was that I wasn't scared of anything per-se. Obviously, I could have been scared about my worsening symptoms and questionable future. But in this case the anxiety seemed foreign, like it was caused by something I couldn't control.

I ended up going to urgent care, and without going into too much detail explaining my feelings to the nurse and essentially begging for relief. While the nurse practitioner explained they weren't able to prescribe any heavy-duty anxiety medications, she had a personal experience with my thyroid medication that gave her similar symptoms; in fact, she shared that she had been suicidal until she discontinued the drug. As soon as the appointment was over I called my endocrinologist and asked if it would be possible for me to quit that day. She agreed, I did, and within a day the 'doom anxiety' I was experiencing had completely diminished.

I finally broke down and accepted how severe my state had become after I went on short-term disability leave. I was having a conversation with my girlfriend and out of nowhere I completely broke down in loud, ugly sobs for nearly an hour. I was so scared. I still didn't know what was wrong with me. Everything I had built for myself... so many years of work and effort... but more than that, my emotions and identity had been stolen. I didn't like who I had become. I just wanted to be myself again.

It was this point when I realized I needed to truly come to terms with my 'new' self. Trying to pretend like I was the man I had been until May 14th was futile, and was breaking me. I had to learn to accept myself with my disabilities and find ways to cope. This would prove to be immensely difficult, but it started with this realization.

Over the next several months I spent on leave, I found ways to stay busy. Yoga, meditation, talking with friends, audiobooks, anything to feel somewhat normal. I purchased specially tinted lenses to make uncomfortable lighting slightly more tolerable. I learned my limits and how to tell when I was becoming overstimulated and needed a break. It took effort, but I managed to develop a schedule that grounded me and made me feel like my life wasn't over. I learned to find pride in how long I was able to fight my condition, and see every day I carried on as a small victory. This change in mindset was immensely powerful and made the world seem slightly less scary.

This was a very high level overview of some of the emotional hurdles I've faced. There's much here to dissect and I intend to in the future. Unfortunately, I can't say I'm now in a great place and have learned to mentally conquer my illness. However, I'm on a journey to do exactly that. My goal is to be comfortable with where I am, who I am, and who I might be if I don't get better.