Struggling to Find My Place in the World With Chronic Illness


The words don’t come out as easy these days. The sit at the back of my throat, curled like smoke that’s choking me out.

I’m afraid of saying something that doesn’t mean anything. I’m afraid of not finding my niche, which seems to be a theme in my life nowadays.

I feel very aimless these days. I can’t seem to find a place where I really feel at home. My hometown isn’t my home. My family – while I will always be comfortable around them – isn’t my home. That’s what people forget to tell you about growing up: you grow out of your old body and your old comforts, including your old room where you used to do your AP lit homework and talk to your best friend. That room you thought would always feel like home? Well, it won’t always feel like home.

College towns don’t feel like home. They hold your friends and your cute little apartment that holds all of your earthly possessions, but it isn’t home. Where is home?

Home isn’t a person.

Home isn’t a person.

That person doesn’t exist – not yet. Your friends are meeting future husbands and wives, meeting people who have homes inside their hearts. They have hearths inside of them. They have this warmth that walks beside them. You are walking, looking to your side, wondering if that is your future or if you’re going to graduate and look inside of cities and apartments for this feeling of belonging.

***

The world is a weird and unusual place for me right now. I have never been so happy in my life, but I have also never had to fight so much darkness. Every day I wake up and I look at my body – this body that was not built to be a body – and I fight to live a life I will be proud of one day.

I ache. I ache and I ache and I ache. It is a painful life. I want to hide it and deny it, but it is a fiery pain. It is a pain I wouldn’t wish on anyone. This life is not a life I would wish on anyone. Chronic pain is not easy, but life is not easy for a single person and I hold onto that.

My life is not harder than anyone else’s. I swear. This earthly tent was just not created for the kind of life I am trying to live.

I am learning how to mourn a life I thought I was going to live, while also living this life I have. I never thought I was going to have to mourn my old life until I got into this new life, this new life filled with doctors and needles and medications.

The loss of my life to sickness has been one of the single greatest losses I have ever faced. I don’t know if I was ever able to fully comprehend it until a few months ago, because I always thought it was temporary. I always thought that having a sick body was a temporary thing, and finding out that it is permanent… Well, this is not the life I signed up for.

***

I was on crutches for three months…three very long months. Those might’ve been the longest months of my life, because there is no way to walk through life fast on crutches. You can’t sprint through anything. And when I was going along at a pace that was so slow it killed me, my mom would always tell people to just “wait and see…wait and see what she is like when her pace isn’t constrained. Just wait and see what this energy is like on two feet.”

***

I like to gulp my coffee even though it gives me a stomachache and burns my tongue because I don’t want to have to sit still and finish a cup. I am moving and moving and moving and going and gone.

Or I was.

Because now I am learning that you cannot gulp coffee. You cannot swallow the word cancer in one big gulp. And unfortunately you can’t take big fast steps on crutches. Autoimmune diseases will burn your joints and make you feel like molasses on days when you want to move faster than light.

You will push and you will push and you will push, but your body is not going to move like you want it to. Life and God and this path are showing me that though I am a small girl who likes to do big things, I need to learn how to slow down and find balance in the small parts of life because I physically cannot take the big gulps of life I once did…and sometimes that sucks.

But I like to think that you can still find me in the big moments, in the crescendos of life.

Find me in the parts of songs that make you feel infinite.

I play those songs, those infinite songs, over and over and over because when I do, I feel like I have no bounds. That feeling doesn’t come as often anymore. I am 20 years old, and my body can barely hold onto me. I miss running and swimming and jumping. I missing feeling like I can do almost anything…the infinite feeling.

So at 20 years old I am learning how to mourn the loss of the life I once had, but I’m also learning how to hold onto the feeling of infinity.

There is still a life to live, and I want to keep living it.

This post originally appeared on Emily Starling.

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Thinkstock photo via m-gucci.


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