The first time I had to wear supplemental oxygen was horrid. My disease had finally progressed into the physically obvious sickness that others were aware of. You could tell that I was sick. Dying. From just a single glance, and for the first time I was feeling defeated by life and my disease. I didn’t want to wear my oxygen. At all. But after realizing it afforded me with a greater ability to do the things I wanted to do I couldn’t go without it. Even though I still cared too much about what other people thought.
The oxygen, wheelchairs, IVs, etc. I remember being mortified if someone noticed the dressing around my IV in elementary school. It poked out right above the neckline of my shirt no matter how hard I tried to hide it. They would ask what it was and I would freeze up. Supplemental oxygen was harder to deal with, it meant no, I cannot breathe and it was a constant reminder that my lungs were indeed failing, something I did not want or need to be reminded of. After some time I finally discovered that I could still live somewhat of an active life if I just wore the damn oxygen.
Oxygen was a huge battle. My first huge battle. Besides needing a transplant, which I also did not want to acknowledge. Getting an implanted port-a-cath was all I ever knew and getting a feeding tube was hard, hearing aids visible, but the oxygen was on my face. It’s still hard for me to even look at pictures of myself with oxygen on but I wore it for so long. It afforded me the ability to run, snowboard, and make it around the house in my final months. Most notably to the bathroom by myself. It kept me somewhat functioning. It kept me alive while it could.
All I know is that letting the world be your guide and worrying what the world may think of you or caring when every person stares into your eyes with pity is not a good plan. They do not know your fight. You can’t even expect them to. I had to give that all up. I was living the best life I could and I needed oxygen to help me do that. No matter what anyone thought, or the looks that accompanied it. I was a fighter and the nasal cannula just further proved the depth of my fight. I was crushing Cystic Fibrosis, it was not crushing me.