This is pretty detailed and quite raw; if you want an overview check out the About page.
Since my posts are going to talk about my past in pieces and fragments, which may be a bit jumbled, I think it could be useful to give a cohesive narrative about me.
I’m Aleks. I come from Sydney, Australia. I started teaching myself how to program computers around the age of 9, always did well at school, and grew up receiving whatever I wanted. Somehow I never wanted to receive anything. And people mistakenly assume I read a lot and like getting new gadgets and tech. I don’t. My laptop is 7 years old, as is my smartphone.
Professionally, I’ve done a decent amount of software development in my life but I’ve done even more teaching. I love teaching.
I was raised to have a healthy and resilient attitude. When I was diagnosed with type 1 diabetes in 2010 (I was 22), I spent the first 30 minutes in the emergency ward praying there was some mistake, but then I told myself “you have a choice—you can let it get to you, you can resent it, or you can cheerfully accept it, make the appropriate changes to your life, and go back to living the best and most rewarding life you can.” I didn’t even know what it would involve at that point. Nobody had explained it to me yet. But I decided I was ready for anything.
I pushed to get released from hospital ASAP and get back to studying and tutoring at Uni. And so the story goes. I was meticulous about my diabetes management, eating vegetables for practically the first time in my life, getting some fantastic opportunities, and having the time of my life. And then I met the person of my dreams.
Slowly, slowly, slowly, things went terribly wrong. It didn’t make sense; my life was better than it had ever been. I felt a little off around a year and a half after being diagnosed. I assumed I was burning out so I decided to take things easy for a while and dropped to one subject. Things slowly, slowly got worse, but it was hard to notice, because there was no reason. Everything is relative, you know? The brain tends to ignore things that make no sense.
So I ended up feeling like I was just overreacting and when I was invited to start a Ph.D on the perfect topic, I said yes. My health was really deteriorating now, but I wasn’t aware of it. Everything was overwhelming, each decision was like pulling teeth. One day, I said “this isn’t right, I’m a wreck”. I was so far gone I could barely bring myself to come to a decision about suspending my Ph.D—let alone actually submitting the paperwork. At the time it seemed like extreme anxiety, but in hindsight it was intense confusion, megasuperhypersensitivity, cognitive dysfunction and executive dysfunction.
I suspended the Ph.D, and was free of obligations, and thought it would be a good idea to give diabetes some attention so I could learn to better manage it. Things got worse, slowly. And worse. And worse. It made no sense. I tried everything. Running. Meditation. Diet changes. I shouldn’t be so... so... broken? Brittle? Fragile? Unlike myself? My family and I struggled to describe it. It wasn’t really anxiety. Sometimes it seemed like nothing was wrong at all. It was so slippery.
Often I felt really, really, horrific. But of one thing I was sure—depression was not the right word. We struggled to describe it to my family doctor. He suggested a psychologist. She was very, very good, and I felt that it helped, but things slowly got worse. At this point I became open to medication, so I tried antidepressants. I found one that took the edge off of... something, but was in no way successful.
All the while, diabetes was proving impossible to keep up with. I kept telling my diabetes team about this, and got no more than a few sympathetic remarks.
I’m cheerful and trusting and, especially with doctors, very receptive. I kept believing they knew better than I did. So after visiting a medical professional, I would doubt myself and think things were OK, that my diabetes was a normal level of crap.
It made no sense but I had become incompatible with my family, so I tried to move out and start a new life with my partner. The next three years were absolute torture. Whatever was wrong with me was taking me to unimaginable pits, but there were no words to explain. Things just didn’t add up. I would seem fine, but then deteriorate, but was still arguably fine or something, and then things would crash. Or did they? Was I just reacting normally to a horribly stressful day?
I still appeared very good at what I did, and motivated, and diligent, but somehow (and for the first time in my life) I never managed to get anything done. And there was no identifiable reason.
It is still hard to describe. The best way I can think of is to say that I was well and not well at the same time. I was bubbly and distraught at the same time. I was perceptive and blind at the same time. I was competent and incompetent at the same time. I was energetic and lethargic at the same time. I was brilliant and useless at the same time.
I lost track of time. I forgot major things. I self-harmed, and tended to get suicidal when left alone, but it made no sense. Working was out of the question for me, but this combined with my inability to get through basic tasks also forced my partner to stay home and look after me. Some horrific things happened that you might have some idea about if you, or someone you live with, has a serious mental disorder.
We just didn’t have the words. I asked for help. I asked medical professionals for help, but didn’t know what to ask. Everyone I saw was barking up the wrong tree. You know that feeling when two magnets repel? It was like everyone was getting repelled from the epicentre of my problems. They all went after trivia like my relationships with my family and what motivated me, and seemed to just veer away whenever we got close to the real problems. I consulted no less than 10 mental health practitioners of various sorts.
I tried to help myself in all the ways I could think of. Meditation, visualisations, affirmations, writing, self-hypnosis, and so on, and reading about various possible disorders that the doctors were missing.
It was torture to do it. Reading would destroy me. Visits to medical practitioners would destroy me. I couldn’t remember things. But I was single-minded about getting better. I would find a way out or die trying. And still, sometimes I believed the professionals. Too often, I thought “Hey, it’s stress, you’re really stressed, you’re in a vicious cycle of stress causing more stress.” This distracted me from the real problem.
But over time, it became clearer and clearer. Finally I gave it a name—“condition B”. (Condition A being diabetes.) I tried a few more antidepressants, one of which was a train wreck and another did actually improve my mood if nothing else.
Oh, and don’t forget, I had to manage diabetes on top of all this. Which I always did my best with, despite how impossible it was. (And I mean, insane changes in my insulin needs, like an identical meal at an identical time shifting from needing 4 units to 25. Over the course of two weeks. I’m serious.)
I tried various new things to help with that, from techniques to technology to diet to medication. The last thing I tried was Afrezza—inhaled insulin. It was amazing stuff. It gave me breathing room to figure out my other issues.
Wouldn’t it be nice if someone realised this was no ordinary case of entitled-white-kid-not-doing-anything-with-his-life-and-depressed-about-it? Wouldn’t it be nice if someone realised I couldn’t describe what was wrong because it was something extremely unusual? Wouldn’t it be nice if someone took more of an interest into my crazy diabetes?
Guess what? It never happened. I scoured the internet, cycling through a bunch of conditions, trying them on, finding some that seemed to fit so well, but then moving on to the next one. But along the way, I picked up new words, new terms that were new to me but fit well. Dysphoria. Cognitive impairment. Executive dysfunction. Confabulation. And so on.
So it was, in 2016, over four years since clear symptoms emerged, that it struck me: “I’ve got brain damage. All the hypos have caused brain cells to die and that’s why everything is like this.” The symptoms were an incredibly good match. The more I read about people’s experiences, the more it fit.
But, after a few months, I realised that my symptoms fluctuated. Brain damage isn’t supposed to do that. Which is when the word epilepsy flickered into my mind. Surely not? I had the stereotypical view of epilepsy most people have.
But I had a hunch, and I started reading. Whoa. Suddenly everything fell into place. Epilepsy is a highly variable condition. More than half of all people with epilepsy never have fits. But a few things tend to be strikingly similar: Seizures occurring at seemingly random intervals, but with often-strange triggers; memory problems, especially around seizures; and odd feelings that sometimes preceded seizures, called auras.
It echoed in my head. I had been wracking my brain for years trying to describe the odd, disturbing, warped feeling I got when my blood sugar was low. Aura. Yes. Wow. Yes. Thank you.
It was a fight to get tested, and then tested again, but luckily some epileptiform activity was detected during my second EEG and I received a diagnosis.
I started Epilim in early 2017. Noticeable improvement, but I was still fragile. I trusted my neurologist who was cautious about starting something new, but eventually I got fed up and pushed to start Lamictal in late 2018. And literally over the space of 2 or 3 days, the clock had wound back 8 years. I was me again. When I was just on Epilim, I felt that I had to accept that I had epilepsy and the years had changed me and I would probably never get back who I once was. That feeling evaporated. Both my personality and my capabilities pretty much reverted to what they were before I was diagnosed with diabetes. OK, I was a bit slower, but about what I would expect being that much older.
For many months I felt like my epilepsy was effectively in remission. I took ten tablets a day but with zero side effects, tons of energy, and a dependable, usable brain again.
Soon after starting Lamictal I was able to take on a near-full-time workload, took on some big challenges, and my health gave me barely any trouble. In fact, I started a blog. Wait, you already knew that.
I lost five years of my life, and I couldn’t help but rush to try to catch up. For months I worked hard and juggled things better than I had ever done. Although there were cracks here and there, life was springing up and up and up in a way that seemed to fit with my abilities and giving me some kind of exchange for my ordeal.
But the effect started to wear off, and I have had to edit this section. Epilepsy often changes over time, medications stop working, and you need to find a new cocktail. So some of the monsters are back, and affect me day to day. It’s still quite manageable, but having tasted excellence, having seen that it’s still possible, I’m going to keep looking for ways to get it back.
Diabetes settled down as soon as I started epilepsy medication. Surprise surprise. When epilepsy acts up, diabetes becomes impossible, but that’s happening less.
Thanks for reading my story.
I couldn’t have escaped my horrors, and quite possibly death, without the incredible patience and support of my partner and parents. When I was out of control, when I was abusive, when I had turned into someone they didn’t know, they didn’t push me away. They didn’t give up. They inadvertently caused me a lot of harm at times, but they were all doing their absolute best.
Thank you all.