Allison Jonergin
Guest Blogger

Growing up, I had this dream, this hope, in my mind of the kind of person I’d be despite any struggles I might face.

I always hoped I’d be brave. 

Before I became sick, bravery used to mean something very different.

It meant standing up for ideals, helping the needy and always being the bigger person. It meant accomplishing what I set out to accomplish, no matter how hard I had to work. I thought there would be no hurdle I couldn’t overcome with enough dedication, commitment and willpower. 

I grew up reading books about ordinary boys and girls defeating monsters and becoming heroes, and I’d be lying if I said I didn’t want to be the heroine in my own story. 

But what do you do when the monsters go to bed with you, wake up with you, eat with you and weep with you? How do you continue to be brave, every single day, when the fight is no longer a battle culminating in a glorious victory, but an extended offensive of attrition warfare?

I’ve had to bury that dream, kiss goodbye those hopes, and console the sweet girl inside me who was innocent enough to believe she could take on the world’s problems when in reality I’m struggling just to manage my own.

Because even on my best days, I am still bound to this body, and all I know is pain: relentless, all-consuming, unforgiving pain. Then there’s the mental anguish, the exhaustion, discouragement, frustration and sadness to reckon with. Not to mention the laundry list of other symptoms that keep things interesting.

When you begin each day and sometimes each task with the prerequisite of having to talk yourself into fighting to live at all, it makes for a long day.

I am alone in this fight, and yet I am never free from my monsters’ grips. They slither into the most intimate parts of my life and make a home, reminding me my body is the battleground in a war I fight behind closed doors.

When I wake up in the middle of the night writhing in pain, when I cry upon waking at the thought of having to drag my tender body into the shower, when I sit on my bed and talk myself into taking my medicine, I am reminded that no one can take over fighting for me when I get tired. 

Pain is the loneliest company I’ve ever kept, but it’s loyal. Pain doesn’t discriminate. It doesn’t care what kind of day you’ve had or how much work you have left to do. 

And so I convince myself to carry on and forgive myself for the items I never seem to cross of my to-do list.

Let’s face it. I won’t change the world. 

On my worst days, I don’t even change my socks.

My disability took any last shred of hope I had that I would be brave enough to overcome my chronic illnesses and effect any real change in this world. My disability has forcibly flipped my priorities, leaving little to no energy for the dreamer in me who wanted to paint one small piece of the future.

And so I tiptoe over the graves of the dreams I’ve buried along the way, and I hope somehow I make that little girl inside me proud simply for having the courage to keep going.

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.


This is part of a monthly series of guest blogs. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.