“You were so brave.”

That’s what the doctors told me after my feeding tube change done at the IWK Children’s Hospital in Halifax earlier this week.

After being briefed by the interventional radiologist who would be taking the lead in the procedure, we went in with expectations that it would be an easy switch. Most commonly, feeing tubes have interior bumpers that are collapsable or are made of a balloon filled with sterile water. Either of those types, you can make the bumper really small before taking the tube out, making the tube change procedure fairly easy and more uncomfortable rather than painful. We thought my feeding tube was one of those.

Once I was in the frigid procedure room in the Interventional Radiology department, laying on the table in only a hospital gown and a pair of comfy boots keeping my feet warm, the radiologist took a look at my tube using an X-Ray. That’s when he confirmed my worst fear: that my bumper wasn’t one of those you could collapse or deflate, it was a hard, solid disk. To get it out of me, he explained with compassion in his voice, this hard solid disk would have to come out through my stoma (the hole formed through my abdominal wall for the feeding tube).

I there laid on the table in the sterile room with wide eyes while the kind doctor explained this to me, feeling exposed and vulnerable. They hadn’t even started trying to take the tube out and the waterworks had already begun. I was beyond nervous and absolutely terrified. I knew the pain would be worse than I could ever imagine. I begged the doctor to use sedation, or to give me some pain medications or something to relax me, or to use a local anesthetic around the site. But they couldn’t do it. They weren’t prepared for a procedure where I would be put under, that would have involved an admission, so, once the surgeon arrived, it was time. We just had to do it. With tears in my eyes and a tremble in my voice, I gave them the go ahead.

The surgeon reassured me I’d be okay and then started pulling on the tube. It was quite possibly the most painful thing I’ve ever experienced. It took the him three tries to get it out; three agonizing yanks, three times of me yelling out in pain, screaming at the top of my lungs, three times of me gripping me the radiology technicians hand with all my might, my mom at my head, patting my hair, trying to help comfort me from the pain.

Between efforts number two and three, I heard the surgeon and the radiologist discussing quietly at the end of the table. They were trying to decide whether to just go for it or just give me sedation before they gave it another go, realizing how difficult it was to remove and how much pain it was causing me. However, they noted that it was almost out so, with a nod of my head, they went for it one last time.

The pulling started I felt my arms and legs go numb. I was ready to black out. The pain was too much. I felt a pulling sensation, then a pop, followed by a release. Then, there was the celebration. I felt the warmth blood and the surgeon applying lots of pressure to my previously irritated stoma. I heard my mom at my head saying excitedly “It’s out! It’s out!”. I cried even harder. The nurse and technician looked down over me with big smiles telling me the hard part was finally done. I survived. Relief washed over me, giving me a brief reprieve from the pain. The tube that had been my nemesis because of the discomfort it caused throughout the last year while simultaneously saving my life every single day was finally out.

The perky radiology technician held my hand while explaining and guiding me through each of the next steps of placing the new tube. The surgeon observed as the interventional radiologist finished up placing the new tube. Before heading off to his next surgery, he came up to me and told me in a genuine tone of voice that I did very well and that I was really brave throughout the whole thing. With my eyes still leaking out salty tears, I thanked him for the compliment. His words have stuck with me since then. Why? Because there was not one ounce of me that believed him.

When I picture bravery, I picture people doing valiant acts found only in medieval fairytales: the knights mounting there horses fearlessly riding out to slay the dragon and save the princess. I picture people working jobs where they put their life on the line everyday. I picture daredevils jumping out of planes and off cliffs. I picture those people you read about in the newspaper who saved a drowning child or rescued someone from a burning building.

No where in the definition of brave did I picture myself. I mean, I was crying before the painful part, before they even tried pulling the tube out, purely out of fear. Because of this experience, I’ve spent a lot of time reflecting on what it means to be brave. I realized since then that bravery isn’t the absence of fear. All the people I mentioned above were probably terrified too. Bravery is acknowledging that the thing you are doing is terrifying, letting yourself be afraid, but doing it anyways. It’s not the absence of fear but the choice to persevere regardless. It’s looking at the thing that scares you with tears in your eyes and a shaky voice and taking the plunge anyways.

This life I live, living with a chronic illness, is unique and it is fascinating. It can best be described in a never-ending series of dichotomies; it’s beautiful and painful, it’s bathed in light that’s often pierced by darkness, it is full of strength and lots of weakness, it is empowering and it is devastating, it is being fearful and being reassured, and, despite all the negatives, despite all the fear and all the worries, in the light and in the dark, it is full of bravery.

Waking up everyday and moving forward into the unknowns is bravery. Making big decisions about medications and procedures that could vastly impact your life in an unknown manner is bravery. Learning about bad test results and not letting them rule your life is bravery. Holding your head up high and marching forward despite all the misfortunes is bravery. Being absolutely terrified but taking that one step forward is bravery. Nodding your head “yes”, giving the go ahead in the face of fear, is bravery. Choosing to live this life full of pain and suffering because of the hope of better tomorrows, because of the beauty that protrudes through the darkness, because of the moments of laughter and smiles and joy, that is bravery.

This week, I slayed the dragon and rescued the princess. I pulled the person out from a burning building. I saved someone from drowning. Each of the scenarios represent me saving myself. I rescue myself everyday. I decide to keep moving forward, to advocate for myself, to find little bits of happiness in even the darkest days. My tomorrows are filled with more question marks then promises and I don’t know how long I have on this beautiful earth, none of us do, but I do know something: that even though tears flow from my eyes, even though my voice trembles, even though I am absolutely terrified, even though I’m not always fearless, I am always brave.

Before and after. Long PEG-J tube VS mic-key GJ button