February 20, 2025

“I’m in pain because the day is ending and I am somehow never healing.” – Anne Sexton

My entire experience of life has been altered in the most twisted way by being ill. It’s compressing and suffocating and painful. People will be ruthless with you – with your body, with your health, with their words. You’ll learn what certain providers really think of patients, and how little regard they have for their dignity and suffering. You’ll learn how little regard they have for you as a person, and instead, see you as an obstacle to getting to 5’clock. You’ll be at the mercy of uneducated providers who can’t conceptualize, understand, or frankly, care about chronic illness or be bothered to learn about it. And you’ll face the consequences of their shortcomings.

Life is just about getting through the day, managing by the hour, breathing through the minutes, and catching myself when I notice I’m starting to roll my eyes when someone uses the word “hope.”

I didn’t have the opportunity to be careless and carefree. There is so much life to be lived, and so much of it that I would have enjoyed. I never thought freedom was something my own body could take away. 

I’m tired of being in pain. Of being chained to the agony that never gives in. I’ve lived more of my life in pain than I have without – and that other life is so distant from me that there are times where I question how it could have even been mine. How the same girl who could do somersaults in her backyard and catch fireflies in her hands now needs physical help to sit up in bed, a wheelchair to get from one room to the next, someone to cut up her meals for her, and modifications all around. 

I miss the ease of movement and the dependability on my body. The independence to go where I wanted, do as I pleased, when I desired. And I’m talking on a small scale – something as simple as standing to brush your teeth or having enough strength in your arms to hand write a letter. I miss all the big things about my life – driving, living on my own, seeing my friends. But the small things get you too. 

This has been the most devastating experience of my life and it’s never ending. I live the most devastating day of my life everyday. I aged before I lived. And that sentiment follows me everywhere I go. It’s in every thought I have, in every experience I miss, in every ache and tremor that rattles through me. This kind of suffering is sinister, other-worldly, evil. This is not a human kind of suffering. And yet, it has been the most constant experience of my life.