Content Warning: Discussion of death and doctor-assisted suicide.

*These views purely reflect my own opinions and my personal experience.

Death is a tough subject for most people to talk about-even think about. Unfortunately, I’ve been in many scenarios in which death was forced for me to face, talk about, and think about.

 

However, the chronically ill aren’t the “unlucky” ones.

 

As a society, we have this fantasy that we’ll live for a long time if we’re “healthy” when the reality is that anyone could die at any time. It’s a luxury to be able to view it in this perspective.

 

Chronic illness (for certain people) just makes people-like myself- more in tune with their mortality and makes them change their perception on how they make choices and live their life. 

 

I have found that I have a very unique stance- both in my health and with my views on death that are the reason for why I view both of them the way I do.

 

I am not afraid of death.

 

When a lot of people hear me make this statement, I usually get a follow-up of something along the lines of “I haven’t experienced anything close to death or I wouldn’t be saying that,” -Not true.

 

Just because I am not afraid of death does not mean that I’m looking forward to it or that I’m careless and living like a thrill seeker- quite the opposite actually.

 

I am not afraid of death because I acknowledge and accept its unpredictability and how much I don’t have control over it.

 

I was forced through my illness to live in the present and as someone who was always thinking in future or past terms, I wouldn’t have even been able to comprehend what I’m writing now.

 

Through finally accepting how uncontrolled life is and how just random it is, I’ve accepted that it can happen at any time-not just for those who are chronically ill.

 

Of course, no one wants their death to be painful, but hell-I didn’t want my life to be painful either, but we don’t get these kinds of choices.

 

Among the 5 ½ and 7 ½ month span of me being confined to my bed for every hour of everyday in severe pain, the only thing your left to do is be trapped inside of your body and to use your mind the moments you’re able. I used these opportunities to think.

 

I thought of all the avenues I could think of where my health could end up turning and I would spend my time facing the scenarios down those avenues. Some were scary, some were sad, some were neutral, and some were happy.

 

Through these “predictive avenues” it gave me time to fully process and cope with the paths and endings of each so whichever one occurred- I was already ready to process it.

 

I can’t tell you how many times my body forced me to see the “death avenue” but the thing was, that was never the avenue that scared me. The avenue that scared me was the one that left me remaining confined to my bed for months to years just left stuck inside my body to deal with the pain.

 

The “unlived life” in the bedbound form was the thing I realized, scared me the most.

 

When my first 5-month flare occurred, it was the first time I had ever dealt with severe pain, and I had no idea that a body could conjure up such agony. I also had no idea that a body could feel that level of pain for 24 hours every day for months with it not even letting up a little.

 

It was when I was one month in to my second flare, that I began contemplating death and fully understood why doctor-assisted suicide existed.

 

I had differing opinions on it prior to ever having a chronic illness but after only one month in, I fully understood it and had discussed it with my family multiple times.

 

I did not know at the time how long my body would physically be able to handle the amount of torture I was in, but I kept informing my family that I didn’t know how many months I’d be able to keep bearing it.

 

I was so thankful that the pain let up- not because again, a fear of dying- but because I could actually breathe again. My body wasn’t persistently tense from pain, and I wasn’t in a constant fight or flight mode.

 

Last year, I had no idea that I was dying at home.

 

I was on my bed with my body barely holding on, with my dad and best friend beside me.

 

I believed that I knew that my flare was going to end, and that I just didn’t know how many months it was going to take to get there. It ended up taking 7 ½ months and my life was saved by something I am so eternally grateful for that also gave me my life back.

 

I was put on TPN because there was no option-there was no choice in the sense that it was TPN, or I wouldn’t be here typing this today.

 

TPN somehow gave me a way to manage the symptoms of my unknown condition and enabled me to live a new normal that I appreciate more than anything.

 

This isn’t to say that I still don’t have days that I’m frustrated or wish I wasn’t on TPN, but it means that generally speaking I will pick it every time for the life it has given me knowing fully the consequences.

 

I’m persistently tip toeing every single day alongside death because the risks with TPN are very real and true. One small slip up-whether it’s my own or just my body, that could cause everything to come to a stop.

 

But I’ve accepted this, and my family and I have come to terms with this choice.

 

I am not afraid of death but that does not mean it doesn’t make me sad.

 

When I think of death, I get sad for my family and friends and the one’s I’d be leaving behind, but this is just a part of life.

 

Some believe in an afterlife; some may believe there is nothing next.

 

I personally believe that my chapter ends when I’m no longer here, and for some it can be hard to face the reality of the end.

 

We don’t have a healthy way to think about death and chronic illness forces some people to have to think about it.

 

Everyone views death differently and ultimately, it’s such a personal choice.

 

I’ve made my health choices and advocated for my view for myself which can be best summed up in a quote from a chronic illness movie called “Five Feet Apart” which says,

 

“This whole time, I’ve been living for my treatments, instead of doing my treatments so that I can live. I want to live…It’ll be over before we know it,”.

 

I know that my choice may not be one that everyone agrees with but I’m proud and happy with it because I know if I do end up dying-it’ll be on my terms, my choice.

 

TPN has allowed me to live  and gives me the chance to enjoy the life I do have, for however long I get the chance to live it.

 

I will forever continue to care more about my quality of life over the quantity.

 

I have always lived my life with no regrets, and I will continue to do this and will continue to take each moment as it comes.

 

By no means does this mean I’m done fighting! This is the complete opposite!

 

I am fighting- I am fighting to get to live my life and enjoy all the wildness and mix of emotions it brings. I’m fighting to get the opportunities to choose and to be able to feel the normal emotions and experiences that being a young adult brings for people normally.

 

I choose life, I choose art, I choose to enjoy fashion (when my body is able to), I choose to love and spend time with my family, I choose to strive to work towards my dreams.

 

I’m not a person who always has the opportunity to choose at all moments (because my illness has control over me and that’s the reality of it), but I will always appreciate and realize the chances I DO get to.

 

So, I’m going to appreciate every moment I do have, for however long that may be.