I was flipping through TV channels the other evening and came across one of the most motivational parts of “Kill Bill: Volume 1.” If you are a Quentin Tarantino fan, you may already know what scene I am referring to. The Bride has awakened from a coma-like state and is struggling to regain movement. She stares at her feet and commands, “Wiggle your big toe. Wiggle your big toe. Wiggle your big toe.” Out of sheer will, the Bride is able to gently wiggle her big toe. A grin reaches her face and she says, “Hard part’s over.”
In a way, this has become one of my many mantras for living with pulmonary hypertension (PH). Living with PH makes me short of breath, and it is an ongoing, frustrating battle. As someone who didn’t grow up with a physical disability, it’s been a hard thing to become accustomed to. (Not being able to breathe in your 20s is a whole other issue in itself.)
Suddenly stairs and hills have become some of my biggest opponents. I look up at them with a sense of achiness in my heart. They have become a reminder of all the things I can’t do, my newfound struggles, and of how my life has changed. I look up at them and whisper, “Just breathe. Just breathe. Just breathe.”
Some days are easier than others. Every now and again, I can go up a flight of stairs with 14 steps with very few issues. Other times I find myself gasping for air by the halfway point, breathing harder than my dog after he runs to the fridge for a carrot. I can feel every bone in my body rattle as I quickly try to fill my lungs with oxygen. My mantra comes back into my mind: “Just breathe…” But unfortunately, I can’t always will myself into being able to breathe the same way the bride had willed her big toe to move.
Sometimes I feel like hell in a handbasket as I try my hardest to go up a large staircase or bravely walk across a parking lot in the winter air. Because PH can be an invisible illness, I imagine my struggles aren’t always visible to nearby observers. However, I picture myself covered in blood, dramatically crawling to my destination while gently reminding myself to breathe. As an exuberant former art student, I need my struggles to be aesthetically accurate to how I feel. (I am not dramatic, just creative!)
As I was growing up and trying to find my place in the world, I really admired Tarantino movies. They became a staple in high school because of the strong female leads (or as I like to say, “badass women”). Some of them would set themselves on fire to ensure the eventual deaths of their enemies. Tarantino’s leading actors aren’t timid little ladies, but women with a big plan and little fear. I find myself trying to gather inspiration and strength from those characters again. Hearing “Wiggle your big toe” was the reminder I needed about the motivation that has been slipping through my fingers the past few months.
After my diagnosis, I find myself digging deep to find myself again. I will be the first to admit that this “situation” sucks, but I don’t want anyone to feel bad for me. Being diagnosed has taken a lot of options out of my hands and placed them in the hands of the disease. It has made having a positive attitude more challenging, but at this point, it is one of the few things in my life that I can have control of. I’ve been trying my best to be strong, ask questions, and protect myself. I try to do these things because I want to be the heroine of my own damn story.
In fact, one of the first PH specialists I saw told me that I will die because of PH. I quickly learned that I would have to learn to be brave and start asking hard questions if I wanted a chance at survival. While chained to an oxygen tank, I immediately began to argue with him. What if I die in my 80s? What if I die in a car accident? What if I die in a freak accident trying to rescue elephants from the circus? Something about someone else trying to tell me how I will die didn’t sit well with me. I eventually decided that a doctor who already thought my days were numbered and that hope was useless couldn’t be apart of my story. I am looking for a doctor who can help, not one who is another of my opponents.
Whatever may happen, and no matter how challenging things may feel, keep trying to wiggle that big toe! Some days, weeks, months, and years are harder than others, but I have learned to try to divide my time by moments. Every time I find myself gasping for air at the top of the stairs, I whisper “Now the hard part’s over.” I catch my breath and try to prepare for whatever else may present itself in front of me.
Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.