When I Was Dying

Personal Essay

When I Was Dying

Life comes to us in moments and then sometimes, all at once. As I sit here writing this to you, the café’s waitress mills about delivering orders. The sun rises to that specific midday point that bathes the day in light. The people at the table next to me laugh out loud, catching up on various happenings. It is a normal day. And yet it is not. 

This time last year I was lying in a bed in the hospital shivering, afraid I wouldn’t make it to the next day. I was weak, tired and fed up with life. All of my dreams had come crashing down and I believed there was no true purpose for living or dreaming. But still, I was alive.

There are many things I want to say about life and death and what it feels like to be on the brink of both, but for now, I’ll just start with one word. 

Helplessness. 

There is no state that I have found so trying as being emotionally and physically dependent on others. When I fell ill with a virus last year it triggered various mental health issues I had never previously had. Anxiety. Depression. All of a sudden I was dependent on others not just for my movements – which had become impaired by the virus – but also for my state of wellbeing. The deep anxiety rut that I fell into required that someone be close to me at all times so I wouldn’t fall into the black pit that was my thoughts. The depression, which was a byproduct of the helpless state in which I found myself, was not easily remedied or even staved off and began to eat at me day after day. 

It’s hard to describe what it feels like when you’re dying. Especially when you’re dying from the inside out like I was. 

Imagine all of your favorite things disappearing at once: the coffee you like, the chocolate you gorge yourself on, the wine you consume. Imagine every happy thing just vanishing and leaving you in the sad wake of them with the memory of what they used to feel like. Imagine the warmth of sunlight and the light of breakfast not reaching you anymore because you have no solid grip to hang on to. Imagine others becoming a crutch instead of a joy or annoyance.

They gave me a diagnosis at the hospital, it was ADEM, which stands for acute disseminated encephalomyelitis. In short, ADEM acts like an autoimmune disorder where the body’s immune system mistakenly attacks its own brain tissue in response to an outside stimulant. In my case, it was the Epstein-Barre virus. But a diagnosis is not worth much when your spine is on fire and you can’t think clearly. A diagnosis is something, but it doesn’t save you from death’s grips when death has taken root in your head. 

It's hard to describe what it feels like when you’re dying. Especially when you’re dying from the inside out like I was. 

When I started my blog and divided it into categories, I wanted to talk most about the category “dying.” I figured everyone else was talking about living and seizing your dreams but very rarely did people talk about dying and meeting yourself in the face of your end. And we have to talk about dying, because whether we want it or not, we are dying a little every day. How are we supposed to know how to walk towards our end if no one ever talks about it?  

When I was dying, I became faced with my own mortality. It is hard to face death and have to decide if you’re ready or not. Your life begins flashing by you and you wonder if you are indeed the person you had built yourself up to be. You wonder if you were good enough or giving enough to deserve to go on to a good place. You wonder if there is a good place to go on to and what it might look like. 

I distinctly remember sitting in the hospital one day, refusing food again because I couldn’t take it – the living – and wondering if the last meal I would ever eat was some mango pudding I had been force-fed the day before. Wondering if I would never get to write my tell-all book? Wondering if this was it? 

I cannot really tell you what it feels like to die. I’m trying to – because I feel it is pivotal for everyone to experience, even if it’s second-hand – but I have a hard time finding the right imagery or the right words, even as a writer. 

Dying is a little like living in the sense that you are overcome with intense joy and intense sorrow at the same time. When you are dying every moment feels precious or futile, depending on your current take on life. When I was dying all of the material and status-related things in my head fell away and all I was left with were how honest and truthful someone’s actions or words were in the face of death. What remained were my beliefs challenged and my history laid out before me begging for light and reconciliation. When I was dying I thought about God a lot and what it would mean to rejoin It. If I was worthy of the light or if I had left a trail of horror in my wake. It was sobering and scary at the same time. 

I want to say I managed to be honest and caring in what I thought were my final days, but I’m afraid I was too angry at life to have channeled that decent part of me. I didn’t take my falling apart with both feet forward. I remained shy and scared and fragile in my “final” days. 

If there’s one thing I would have liked to pass on from that state it’s to not be afraid to move forward. That it’s better to move on having made a few mistakes than to stay put not having tried hard enough. I clung to life hard, but I did not cling enough to the part of myself that loved life. 

When I finally left the hospital and tried to get better, my brother would share motivational videos with me. He would share with me the stories of others who had been through intense shit so I could feel less alone and have something to drive me forward. I’ve never forgotten this act of kindness. As someone who has lived the depths of hopeless depression, I have become very aware of the importance of fighting one’s thoughts. Of relying on others when you’ve forgotten the joy. Of consistently re-engaging with the depths of one’s soul to get out of the rut. 

What saved me was the vision I had in my head of how life could be. In my darkest days, I would consistently imagine myself traveling to all of the places I had never been to and journeying on with the people I cared about. I would make a vision board for what I wanted my life to be and slowly begin working on it inch by inch. It was grueling, soul-upheaving work but when I was done with it my life felt truer than what it had been.  

As someone who has lived the depths of hopeless depression, I have become very aware of the importance of fighting one’s thoughts

If you are also going through something, I hope these small reflections help you figure out what is important to you and how to get there. I hope that I open your imagination beyond what you might have experienced and get you to think critically about how you want to live. Because living is what it’s all about, at least as far as we know. Living is the only thing we really have in our hands so it’s worth it just to try and get it right. 

I have decided that I want to live differently than how I wanted to die. I want to live bigger and grander and more vocal. I want to reach the depth of my soul so that the next time I am faced with my mortality I can accept it head-on and tell it to do its damnedest. I want to love life so that when I leave it, I’m positive that I can move on to a better place. Or at least have a chance at it. Look at me, falling into the cliché. I guess cliché is cliché for a reason. 

As you read this, I hope you are somewhere cozy and warm. I hope your nearest and dearest people are nearby and your favorite vice is easily accessible. I hope you are happy, or at least content. I hope you are alive. 

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