Twas two days before Christmas, and all through my tummy, not an intestine was digesting, not even a crumb-y. My feeding bags hung on the IV pole with care, in hopes that nutrition soon would be there. With my dogs and I laying a-snug in my bed, and Muppet Christmas carols playing through earbuds in my head, knitting a last-minute Christmas day gift, I smile, content, and my spirits do lift.
Okay, I’m not a poet, and I certainly know it. So here’s a picture of my adorable dogs to make up for it.
But there is a point to my sappy spoonie story-time, and that is a message I want everyone with chronic illness to realize, that I have slowly realized in my past four years with chronic illness.
Yes, it is heartbreaking, frustrating, painful, and sometimes terrifying to have a chronic illness. The every day things healthy people find so simple are often insurmountable obstacles for us. We mourn our old selves, our old lives, and the goals and life paths we wanted for ourselves that we can no longer achieve. This is, needless to say, not the life we envisioned for ourselves.
But that doesn’t mean we can’t have a wonderful life.
I didn’t get to graduate college, I can’t work, I can’t do more than a few hours of real activity without needing to lay in bed recovering and miserable for several days afterwards.
But I can text with my friends and family. I can knit and crochet and give gifts to people that makes them smile. I can watch National Lampoon’s Christmas Vacation with my family and laugh until the room spins. I can play board games with friends and giggle about how my short term memory is shot from the extra activity, and not remember what the hell was on my playing card that I checked a minute before. I can lay down and watch Doctor Who with a dog in my lap and then discuss it to death online with my friends. I can sing songs (badly) about poop with one of my best friends, and laugh about our dysfunctional bodies.
Yes, it can be sad that that is all I can do, and we live in a world where we feel pressured to do more and achieve everything that is humanly possible. But when all that is humanly possible is making a sweater for my mom, that may not be such a bad thing. My life is not what I thought it would be. It is not what I wanted it to be. But it can still be a good life. I can still take joy in the people who support and love me, and the small, seemingly inane things that I am able to enjoy doing each day.
My body may be crap, and it might always be crap, but my life can be good. Really good. If I accept the limitations and the realities of the life my body has created for me. It’s a smaller life, and it’s not good every day or every minute. But no life is. I spent a long time relying on the idea that one day this “sick-chick-life” would end and I’d start my real life.
But this is my real life. And maybe one day I will magically recover and everything will be different, and I can have the life I envisioned. And don’t get me wrong, I’ll never stop hoping and fighting for that.
But if it doesn’t, I know I’ll be okay. And you will, too. Because once you let go of the idea of what your life is supposed to be and start embracing what it is at this moment, you can start to enjoy it.
And then you can have a truly wonderful life.
About the Author:
Leah is a 24 year old suburb-of-Philly native. She has Ehlers Danlos Syndrome – Hypermobility Type, Gastroparesis, Dysautonomia, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of.