I was 15 years old the first time I got really sick. At the time, I didn't know that I had developed an autoimmune disease at the age of 8. I spent seven years undiagnosed, letting it destroy my body. For most people, they are able to get diagnosed and treated pretty quickly. But because my condition is understudied and still partially a mystery to medicine, they don't "really" know how badly it can affect the body. So, those seven years were filled with pain and fear and terror.
When I was at my sickest (during my first battle, not my current relapse), I thought for sure that I was gonna die. That's a tough pill to swallow, let alone even say. but it's the truth. I've seen an array of different expressions when I say that, people frowning at me as if I shouldn't say it at all. But it's true. It reached the point where I would spend 20 hours a day sleeping, if not more. I couldn't walk much, I was loaded with medication trying to manage the symptoms. It didn't look good. It didn't help that aside from that condition, I also had and still have fairly unhealthy kidneys as well as mental illness. Then they told me that there was a possibility that I had cancer as well.
It was brutal.
They told me that my condition itself wouldn't cause death. But I knew that the symptoms definitely could kickstart into a downward spiral that could only go south. At the end of the day, the condition is essentially brain inflammation, which isn't pretty. There were seizures and days I would go without eating or drinking anything. All kinds of things that caused my body to wear away.
The family and friends who witnessed my disease told me that they thought I was going to die.
I sit and think about that a lot.
My mother, my best friend, my grandparents. They watched me drop so low that they considered the fact that I might've not been able to come back out of the hole I was in. More than anything, I hated just how much I knew exactly what they meant. The truth is, I didn't think I'd live either. At the time, I was in so much pain that I wasn't really sure if I wanted to. I know what you're thinking, what an awful thing to say, right? I know how that sentence might make your stomach twist in knots because it really is a horrid thing to think. But the fact is, it's true, and it's important to say that. If I can't be honest and talk about the ugly side of my illness, then why the hell am I going through it? There's a story to tell from rock bottom, and this is mine.
Now, I'm turning 20 years old. I didn't even think I'd live to see 16.
Maybe this should feel like a victory, and in some sense, it does. At the same time, it's a very raw feeling. That's the truth. To look at a specific date on a calendar and realize that you might not have made it this far, it's — well, I really don't know what it feels like. It's scary but it's calming. It's emotional but it's happy. It's happy but it's sad. If you haven't lived it, then you probably don't understand why those emotions are so grey and not just black and white. Despite the victory, it's hard to look back and see that you had to be in that position at all. I don't say that for sympathy, I say it for understanding. I say it because the only way I can justify beating my own odds is by knowing that people can at least try to see it all in a different light. To understand that there is a delicate complexity in this situation and it isn't always good.
Oddly enough, there is still a grieving process in surviving. You don't get the title of being a survivor without having to earn it. Earning it means hard work, a situation you didn't ask for. There is both pain and beauty in surviving. It takes every ounce of strength that you have — strength you didn't know you had.
There will always be blurred lines of the bittersweetness of this situation. It's hard to even explain why it's bittersweet to begin with. It's a lot like the holidays after you've lost someone you loved. You know the holidays should be joyful, and you are joyful, but there is a pain there. It comes from having to survive in the first place and realizing that life isn't easy, nor is it fair.
But now, I'm looking at the bright side.
Even though I'm struggling at the moment, and even though I'm going through my second major battle with this disease, I'm happy. All negative emotions aside, I'm happy. I survived. I'm here, I'm coping. I'm blowing out birthday candles because I've been kicking this disease's ass. That's the beauty of a bittersweet emotion — there's always happiness lying within it somewhere. I'm learning to live my life with a future planned ahead of me, rather than waiting around for something awful to happen.
This will always be a situation that is hard to talk about. It'll always have a wound attached to it, myself, and my family. It will always be painful and difficult to realize that it had to happen. There will always be judgment, internal and external — from myself or from others. That's just part of surviving.
I survived. Now it's my birthday, and I'm still here. The world works in mysterious ways, but at the end of the day, I'm glad I get to see my birthday.