The Access Review: The Reality of Disabled Life

Daisy Brookes/Ekko Cosplay

Disclaimer: this piece was originally written for my local Lupus UK newsletter back in August, but was a little too graphic and brutal to go to print with them. The Cosplay Journal have been kind enough to let me share it here with you all. Although it has nothing to do with cosplay or my usual Access Review pieces, it is an insight to the other things I write and the difficulties I struggle with outside of cosplay. I also want to add that if you find yourself in a mental health crisis, I deeply encourage you to reach out or call 111 and chose option 2. People are and always will be there to help you. - Daisy

Life is still hell. I can’t even remember what I wrote in the last article. I have barely any decent brain function and I feel like everything is falling to pieces. But still, I’m here, trying my best to carry on, even though it feels like I’m walking through quicksand with weights attached to my ankles.

A little summary to start us off, I ended up having more surgery in June. After a seriously nasty infection and numerous issues, I underwent a semi-laparoscopic colectomy, which means that I now no longer have a colon. Crazy right? So much for a semi-permanent stoma!

Another hurdle to hurl my flimsy, broken body over. But we get back up, it’s okay to hit the ground so long as we get back up... right?

I’ve found myself wondering, what actually is the limit to my body? When will enough be enough? I can’t let myself dwell on this for too long because I’ll find myself sinking in to a world that seems pointless. The past year has been hard, there’s no denying that. Multiple life changing surgeries followed by new treatments and transfusions that I’ll likely have every 3 weeks for the rest of my life. My mental health has taken one hell of a plunge off the deep end, positive and enthusiastic Daisy is taking a holiday in a world not so full of doom and gloom. I’m starting to miss her.

When the going gets tough, and the tough have already been through so much, how do they keep going? A lot of this article I’m writing in my car, nauseous, exhausted, too tired to drive home from the shops. Waiting for a drop of energy that’ll get me through the 15 minutes it’ll take to get back to the safety of my house. Life is exhausting, have I reached my limit?

Sadly for me it doesn’t stop here, another infection and abscess around my stoma has everyone questioning how worth it this endeavour was. Has the good of having a stoma outweighed the bad? I’m conflicted, contrary to my upbeat and positive posts on social media, I hate having a stoma. There, I said it. I absolutely hate it. I can say that yes in many ways it’s made my life easier, I don’t run to the toilet 20 times a day sure, but psychologically, the toll it has taken on me is unbearable. The issues with it are constant, if it’s not inflammation or wounds or bruising then it’s something more serious, sepsis and fistulas and god knows what else can show up.

This is how my daily life is. Taken by my sister.

And for all my complaining of bad stoma supplies and agonising nights sleep where I wake up covered in my own stomach output, what does it do? Crying on the bathroom floor won’t make it go away, but neither will the doctors. Too scared to reverse it maybe, I don’t know, they won’t tell me either way. Just an endless wait for someone else’s opinion. For someone else to decide for me. When did my life no longer become my own?

I know you’re all used to something different but after weeks of staring at a blank page, of drafting out stories about conventions and their lack of access or the few good things in my life, I find myself just blank. I can’t write about the good right now because it all feels so bad. How can it be good again when so much has gone wrong? What is my future going to be like? Do I even have one?

Life is hard. Life is brutal. But I’m still here living it. Every day, trying my best to wake up and do the next day. Because it’s what I owe to myself, and I won’t let my head and heart fall in to the idea that dying is my only choice. Not again.

There’s more good, there has to be. The small good days show me that. My baby sisters graduation, my parents coming home, birthdays, my best friends wedding. Something I keep repeating to myself over and over, part of what is perhaps my all time favourite quote;

“That there’s some good out there, and it’s worth fighting for.”

Too bloody right Samwise, too bloody right.

Until next time,

Daisy x