Growing up, I would say I was scared of a lot of things. I found every time I grew older what I was scared about changed. When I was a kid, the things I would be scared about would be things you shouldn’t be scared about, but I was a kid, I didn’t know any better. As I grew up, those things changed. In high school the scariest thing was not getting into university, then when I got into university it changed to be the fear of failing out. There was always a time dependency on what I feared based on what I knew of the world, and where I was in life. Until I got sick, and then what I started being scared about was consistent — it hasn’t changed. What scares me the most is something I’ve never been scared of more. I think that’s what I’m struggling with now –I’ve gotten into university, I’m not going to fail, this thing’s just going to be a part of me until I am not here anymore and that scares me. I can only come to terms with it — it’s always going to be a factor.

Around first year, my memory started to go. It used to be something that I attributed to just being too busy, being stressed, not sleeping — being in engineering, those things go hand in hand. But it got worse over time until I realized a lot of the things I was forgetting were things you shouldn’t forget, things that are fundamental to most people — things you don’t actively need to remember. When you go into a building, you remember how you got there. You remember when you woke up, where you woke up, where you live. You remember things like what your friends look like. You can describe someone that you’ve been together with for more than 2 years easily. And it’s not even just ‘I forgot what color eyes they have’, it’s ‘I couldn’t pick them out of a crowd if you asked me to’. I think that’s the first time I realized how bad it had gotten was when that happened — when I saw the person I had been with for a while and couldn’t recognize their face. That was scary because I realized this wasn’t just me being forgetful and having to write things down, I was a whole different person every day of my life because I had no saved memory.

I’m of the belief that the way you view things that happen to you is tempered by things that have happened in your life, the things that you remember. If someone says something that upsets you, it can be offset by the fact that you’ve been friends with them for many years. If something good happened to you, that’s not the greatest moment of your life because you’ve had other great moments. But when you don’t have any memory to compare it to, when every experience is a brand-new experience, every bad moment is the worst moment you’ve ever had, and every good moment is the best moment you’ve ever had. Both of those things are exhausting for the people around you. There are only so many times someone who’s been in your life more than a few years can handle you experiencing the “best moment ever” again. When a nice thing that’s happened, and you should cherish it yes, but it’s not the best thing that’s happened. It’s not a huge deal when small good things happen to you. The same goes for bad things; when a small inconvenience happens, it shouldn’t be the end of the world, your entire life shouldn’t come crashing down just because you don’t remember any time good things happened. Your life is more than just that moment.

The thing I’m scared about isn’t not getting into school, or not passing — I couldn’t care less if I graduate at this point. I’m scared of getting to a point where I’m no longer able to take care of myself, where I rely on others to survive. That’s been my every waking moment ever since I started getting on the path to diagnosis, which is not a short one because specialists have long waiting times, and tests take months to schedule. Every step of the way, no one seemed hopeful it would get better. Everyone wanted to get to the bottom of it — not so much to fix it but just so I’d have a name for it, and that worries me. When people whose lives are centered around figuring out things like this don’t seem hopeful, that makes me not feel hopeful either, you know?

There’s another thing I’m terrified of,I’ve spent a lot of years studying here. I take a lot of pride in the fact that I’m going to be an engineer one day and I have knowledge that I can use to help the world a better place for everyone. I take the well-being of the public and the obligation engineers take to safeguard it seriously. It’s all meaningless though, if I’m just going to forget what it is to be an engineer. If I’m going to forget all of my training, everything I learned here, what would the struggle have been for? Can I even call myself an engineer in a year or two if I can’t practice the art anymore? When I realized that was a possibility, I very much considered dropping out because not having a degree in my mind was better than once having a degree and it just being a piece of paper because you don’t remember anything that you’ve learned. You’re just a fraud, really — you can’t call yourself an engineer if you aren’t one. That’s scary because it is such a huge part of how I viewed myself — as someone who had the skills as an engineer to help the world and those around them — but I couldn’t say that of myself anymore if I wasn’t one.

Another big part that’s scary is the path that I’m possibly on isn’t one that ends in a good place. I think I’d rather die than get to a point where I need to rely on others to take care of me. Maybe because of the fact that I was never really happy as a student. Even before being a student here I never associated myself with anything of value and I never put much value on my life to start with. So, to know that other people have to expend their time and resources to keep me going in a state where I’m no longer useful, that scares me. That’s not a reality I would want. It’s worse because that has always been a lingering fear in my mind, but it was always an image of me being much older, at the end of my life, having done everything I wanted to do. The way things are progressing, that seems closer and closer; I don’t know if this is a long-term fear anymore or a next-few-years fear.

A big problem with this unfortunate struggle with memory issues, is that it started off slowly. It just felt like I was forgetful. It didn’t occur to me that my personality was fundamentally changing — the person I was and the way I was being portrayed — was being changed. Unfortunately, it took me a few years to notice that because of how my body was changing, I was hurting a lot of people. Every time I did something or made a choice, I was using ideals and convictions that I didn’t have for a long time, these were just things that were just coming to me in the moment. They were often wrong — they weren’t well thought out ideals, they were just whatever felt right in the moment. And that ended up hurting a lot of people because I would hold onto these beliefs that led me to where I was today. I want to believe those ideals at one point were good, but that wasn’t what I was using to live my everyday life. It was just whatever whims came up that day because I had no recollection of who I used to be or who I ever was. I think that hurts the most — coming to the realization that I spent years hurting the people around me without realizing it, being really frustrated with myself and having to carry the burden of the fact that I was slowly losing who I was but not wanting to tell people around me. I think I became more easily upset because this fear was in my mind for the last two and a half years. People don’t normally need to write down where they live, how they got to school that day, and so on — that takes a lot of time and energy and reminds you that you’re not normal, there’s something wrong with you and that’s just the way your life is now. It became so easy for me to get upset, and not be present in the moment, and let the things I was doing not get my full attention because there was this huge part of my life that I had to constantly put effort into. I was just continually reminded of what my future held. I kept that from a lot of people, from everyone really. I think it’s a large reason why I don’t like myself anymore — the image of me that people have in their minds is this person that was fighting something that no one was aware of. They didn’t know I was struggling, they just thought I was this terrible person that was angry and sad all the time for no good reason. I don’t blame anyone because everyone looks at things with their own set of ideals and data gathered and forms their opinions based on that. If I was in their place, I probably would have come to a similar conclusion. They didn’t know what was going on; they couldn’t cut me slack because they didn’t know that was a thing they needed to do. I don’t hold it against them; if anything, I blame myself, not getting this looked at sooner, not dealing with it better, and for ignoring it for as long as I could until it started affecting the way I live my life.

I really started to notice how bad it was getting recently. Something very unfortunate happened recently that made me not want to remember things anymore. Which made what I had seem like a good thing, because I normally have to expend a lot of effort into remembering. I have to make long notes to remind me of what is going on and what happened, and if I don’t, I don’t remember. It’s really easy for me to forget entire days and weeks because there’s no log of it, there’s nothing I could look back to. So I stopped doing that. The scary thing was I no longer had a check on what my reality was. My brain could imagine whatever world it wanted, especially because I didn’t bother trying to decipher imagination from reality. I lived in a state of floating for the longest time. It’s hard to describe. Normally, when people see things, they don’t have to second guess if what they’re seeing is real. What reality looked like was so odd to me because a lot of what I was seeing, feeling and remembering wasn’t real. A lot of it was almost whimsical in how silly it was but it felt real. The things that I experienced and saw felt real; I remembered them as if they had happened but if I told anyone about them it would be clear they weren’t real, because they made no sense. It felt real to me, and it was scary that I could just slip into that world easily if I didn’t expend effort to log things down and to making ways to remember them. That was a scary place to be. On the outside I still looked like I was fully functioning — I was still attending class, I was still doing well in school. Really, unless you asked me what I was seeing, you couldn’t tell, because I looked normal. If you asked me what I was doing in a certain place, you’d find out I had no idea, in fact I didn’t know where I was or who you were, but I looked like I was fully functioning. That used to scare me. It’s not as scary anymore, because it’s been so much time. I’m not actually sure how long it’s been, because I don’t remember when I stopped writing things down. I’d have to open my book again and see when the last log was. As long as I can remember I haven’t been writing stuff down. It’s not scary to me anymore because it’s a very comforting place. It’s a much nicer place to be where you don’t remember the things that are happening in your life; the things that are stressful, awful or sad. You’re living in a world of your own creativity, whatever world you want to create, whatever reality you want to live through is yours to make. It’s almost freeing in a way, to not be bound by what you’re living through.

I know that sounds like a good thing, but it’s not like I have any control over what’s happening, like if it’s a happy world, then things are great, I’m in a good mood, things that I’m seeing — whether I’m seeing them or not — are good. But if I’m not, it’s not a good place to be because it’s just the same sadness you avoided but now in the world you thought you could be free in. So, I’m not sure. I don’t know if it’s a good thing or a bad thing. All I know is that I’m not in control over what I’m remembering or what I’m seeing. I don’t know what my endgame is. I’m a planner — I like to have plans even if there’s variables involved, I like to plan out every path I could go down — that’s how I’ve got this far and done so well. This just makes you stop and think, and just know that even if you plan out everything methodically, you’re never in control. It’s weird. The thing that always used to give me comfort was that even if things were bad today, I could plan on how to make them better, and even if I couldn’t plan around something that was making me sad, it would end at some point. There was a path that always led to happiness or stability. If I had a bad course, there were ways I could either study around it or know I was going to pass. If I couldn’t do anything about it, I knew in four months it would be done and all I had to do is pass. If I could make those plans, the thing I was fighting didn’t seem so scary anymore. But how do you plan if the thing that’s scary is inherent to you, it’s something that’s a part of you? I don’t know. That’s what occupies a lot of my time now, is the fact that I don’t even know if there is an end to this. Point is, I’m losing my memory and that’s a scary, scary thing.

I wish I could tell you something happy about it, like I’m on my way to get better, or I’ve learned how to live with what I am, or something meaningful, but I realized that life doesn’t have clear-cut endings sometimes, and it doesn’t always have good lessons to be learned.

What advice would you give to anyone going through similar situations, or just mental health in general?

You don’t need to do this. You don’t need to live through whatever you’re going through without asking for help. If when I had first realized something was wrong, I had gone to the doctor like I should have, I probably would be diagnosed by now. if there was a cure, I probably would have been on it and I would have been living a normal life. Instead I made myself a martyr and struggled so long for no good reason. I know why I didn’t get help sooner, it’s because I believed I didn’t deserve someone else’s time. I knew how long wait lists were for counselling and neurology, and I didn’t feel like I was worth taking someone else’s position there. If someone had to wait an additional day to get seen because of me, that’s not something I could have lived with. It’s still a struggle to go, It’s a struggle to get help because I’m constantly reminded that I am taking up a resource. There’s two ways I’ve come to terms with it. The first being, if I get better I can be more of a help and have a lot more healthy years to give back — especially as an engineer, if I can stay one. In a few short years, I can do a lot more good than a few sessions did harm now. The second way I’ve come to terms with getting help is through my belief in the school of thought called the maitri, which is the practice of a loving-kindness towards everything around you, yourself included. I’ve really only scratched the surface with a lot of those teachings, but one of the ideas that really helped me get through the door and get over that edge of asking for help is this: I used to paint myself in the worst of lights, and a lot of that may be true. The bad things I don’t like about myself aren’t unique to the history of mankind. There’s seven billion people who’ve been around for who knows how many years, it’s really, really egotistical to think that I’m the worst — of all the people who could be contestants, I’m the worst. It’s lighthearted, but we paint ourselves in the worst possible way, and I used to tell myself that. I used to genuinely believe that I was the worst. I don’t think I’m the best, I don’t even think I’m close, but I know that I’m not the absolute worst. Those are the two things that worked hand-in-hand to get me to finally go. So, go. My worst-case scenario is, they tell me they can’t do anything, and they just give me a name, what’s that any different from now? I’ve lost a few hours? I promise you I couldn’t remember the time I was there anyways. Best-case scenario, they either have a cure or a way to go back, or people who are much smarter than me and more experienced in these areas could teach me better coping strategies than the ones I figured out while I was an engineering student. There’s so much to gain and almost nothing to lose. That’s the key. Don’t be a martyr. If you try to get help and doesn’t work — which I know is an unfortunate reality, sometimes you don’t click with the person you’re getting help from; either they don’t understand, or worst-case they try to deny the symptoms you’ve gone through. Unfortunately, it happens, but that’s just another step in the way. I know my path to getting better is long, hopefully yours is shorter, but just because there’s a curve doesn’t mean the path is hopeless. There’s still an end. It might be a circle and you’re back to where you started, but was it really any worse than you sitting there doing nothing?