Being diagnosed with a chronic illness has a profound impact on a life. It’s a thunderclap that reverberates through our bodies, minds, and families. It enshrouds our lives and takes over. It becomes our whole world.
Before my diagnosis, I was a normal kid. I loved going to the beach, playing with my dog, and riding our pet tortoise. Yeah, we had a tortoise. He was my best friend until he ate my mom’s roses.
Sad day for the roses.
Happy day for the tortoise.
What else? Oh, I loved climbing! If it went up, I had to see what was at the top. I teased my brother and cried when he went to school without me. How rude! Sure, I was only three but I was precocious! Wasn’t that enough?
There was one, small, hiccup. A little bit of health problem that needed fixing. I had reflux. Urine went from my bladder back up into my kidneys. It’s supposed to go the other way. Kidneys to bladder and bladder to…Um… Well, you know.
It’s a simple surgery. Snip, cut, stitch back up and ta-da! Back to climbing trees and trying to sneak off to school with my brother. There was snipping, cutting, and stitching but then there was a mistake.
I was sent home to heal but the pain didn’t go away. I didn’t get better. I got worse. My parents took me to the doctor and begged him to help me but he wouldn’t listen. He was so sure of himself! He was a surgeon. A god. A man above reproach. They were just overprotective parents. What did they know?
Thank God my parents didn’t listen! They took me to a family friend who did an ultrasound and there, on the screen, was the problem. Instead of fixing the reflux the surgeon made it worse. Blood clots had formed. Urine couldn’t travel from the kidneys to the bladder so it stayed in the kidneys.
That mistake and ego trip caused irreparable damage to my kidneys. That one moment, one lapse in judgment, brought my life to a screeching halt. I was now a person with a permanent, life-threatening, illness.
Thanks for that Doc.
I’ve lived my whole life in this bubble of a diagnosis. It’s become my identity. It’s who I am. It’s the one thing people know about me. When I meet someone they usually say, “The kidney thing, right?”
The bubble grows and it takes over. It becomes a force field that blocks out calm, happiness, and hope. It clouds our vision until all we see is the disease. All we feel is the pain. All we hear is the beeping of hospital equipment.
It’s easy to forget who we are beyond skin, bone, and blood. It’s easy to lose our ability to hope, believe, and dream. That person, in a way, dies and we’re left with a diagnosis, a prognosis, scribbled on a prescription pad.
I’ve had three transplants since that mistake and right now I’m stable. I got my second, third, chance. The prayers were answered. The positive energy and good vibes worked. I’m alive but somewhere along the way I’ve lost myself. I’ve become my illness and this miracle. That’s who I am. It feels like it’s all I am.
It’s what people want me to be and who they think I am. I’m their proof of God, good karma, or the power of positive thoughts and energy. A living, breathing, symbol of divine intervention. A symbol of hope.
Words like “Miracle” and “Blessing” have become shards of glass. These words cut deep because I feel like I’m this thing people prayed for on bended knee. Not a person. Not a deeply flawed, damaged, hurting human being but an entity. A disease.
Whenever the real me comes out there’s a look of disappointment; like I’ve spoiled the punchline of their favourite knock-knock joke. The real me isn’t good enough. The real me can’t live up to the image projected on the bubble.
That bubble becomes a prison. All they see is a disease and it’s become the only thing I can see. It’s the only thing I’ve let myself see but I want more. I need more. I need to get out of this bubble.
I’m trying to free myself from the shroud of my diagnosis. There has to be a way out. Life has to be more than a disease or a mistake. One thing can’t define an entire existence. The bubble, the force field, the red letter diagnosis can’t be an unbreakable wall.
There has to be a way out. We aren’t prisoners to our past narratives. We have the power to change our story and create a future that brings us joy. That choice is ours!
What happened to us? That may have been out of our control but we get to control how it defines us. We get to choose how it shapes our future. More importantly, we don’t have to be hostages to that moment, mistake, or a life-changing diagnosis.
If you take away nothing else hear this: A diagnosis may be a thunderclap but it isn’t lightning. It’ll shake our lives but it doesn’t have to burn it down. As long as we’re alive we can move forward. If we’re moving forward then we can find a way out of this bubble.