The Journey to Discovering My Human Superpowers
I just finished watching the episode of “Star Trek: The Next Generation” in which Capt. Jean-Luc Picard was taken by the Borg. In one scene, the Borg turned him into a machine, or in Trekkie terms, a “cyborg.”
This made me think of my “extra appendages,” my oxygen tanks. I am on oxygen 24/7, and because my tanks are with me all the time, I decided to humanize two of them. My home concentrator is named Betty, after Betty White, and my Inogen One G5 is named Cooper. I also have portable oxygen tanks available in case of an emergency (such as our electricity going out), but my true companions are Betty and Cooper.
Watching “Star Trek: TNG,” I begin to feel as I imagine Capt. Picard did. In the scene, you can see a small tear run down from the right corner of his eye. I interpret this as him drawing on the last of his recollections from when he was fully human.
When I learned of my illness, lymphocytic interstitial pneumonia, and was told I would need to use oxygen, I felt as if my normal human existence was over.
I thought, “This is it. I won’t be able to completely breathe on my own. I will need help from a machine to keep my lungs filled with enough oxygen to keep me alive.”
I, too, felt a tear at the corner of my eye. My world would now be that of a “Modern Day Mutant.”
For the first several months, I felt embarrassed to go out. I was afraid people would see me with my oxygen and think, “She doesn’t need oxygen, she just needs to lose weight.”
You see, I am a little on the heavy side. My weight has always been a struggle for me. However, I am learning to accept myself. (That is another story.) My family and support group have assured me that I have nothing to be embarrassed about. While I still struggle with this awkwardness, I cannot let it hold me back from living my life.
I continually return to my motto (you know, the one from my previous columns): “Stay strong and never hide your illness.”
After several weeks of hauling my extra appendages around, I started to feel less like a cyborg and more like a superhero. I started to like the thought of being a modern-day mutant. I began to think of Betty and Cooper as my sidekicks. The oxygen from the machines gives my lungs power. I had a superpower that many others like me have. When I breathe, my lungs work like a machine. I started to believe that I can beat this poison in my lungs.
I thought, “I HAVE A SUPERPOWER! I can imagine that my lungs are indestructible. I am going to knock out this disease and be the strong woman I was before!”
But that’s not how it works. This is my journey, my struggle, my life. There’s no pretending here. Oh, don’t get me wrong, I still believe in superpowers. It’s just that now, my superpower is being human. A strong human, but human nonetheless.
My human superpower is courage. It takes courage to accept my rare disease. Courage is also the ability to stay positive when my lungs don’t want to cooperate, and it gives me strength when I feel too tired to go about my day.
I have a superpower, but not the kind you read about in comic books or see in movies. It’s the kind that makes me want to be the hero of my own story, the leader of my journey, and the winner of this battle.
Living with a rare disease feels like a daily battle, whether you have pulmonary fibrosis, cystic fibrosis, pulmonary hypertension … the list goes on. But I write my own superhero story. I decide how my human superpowers give me strength. I write my own ending, and for now, my story will continue.
This is not my end.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.