Battling Scleroderma Doesn’t Make Me a Hero

Lisa Weber avatar

by Lisa Weber |

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I couldn’t find our family’s teacup-size dog. She had only been out of our sight for a few minutes. I scanned the dark, fenced-in yard looking for this adorable, fluffy furball.

My eyes finally fell upon her white body floating in the pool. She wasn’t moving.

Time to save a life and become a hero!

Without hesitation, I leaped into the water, pajamas and all. Her limp body draped over my hands like a scarf. Her eyes had no life in them as I carried her out of the pool. I began the hysterical screams to the tune of, “Oh, my God, she’s dead!”

Although I was losing control of my emotions, I somehow laid her down next to the pool and pressed my ear against her chest. I couldn’t cope with the idea of living with this ending, and I believe my strong religious faith gave me the strength to hold my breath in desperation. Choking back cries, I held my breath to listen for hope. I heard the tiniest thump. Then another faint and slow thump.

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She was slipping away, and it was up to me to figure out how to save her. Without hesitation or training, I began CPR on her miniature body. Well, since my mouth was the same size as her entire head, it looked more like I was swallowing her face. Regardless, the air entered her chest, and then I started gentle chest compressions using just my index finger. I have no clue how much time passed, but the sweet baby started gagging and sucking in air.

That was the one and only moment in my life when I felt like a hero. I saved the life of a beautiful, spoiled lap dog.

Does battling scleroderma make me a hero?

I don’t compare myself to people who run to the front line to protect their country. Nor do I think I’m as brave as our firefighters and police officers. They are the true heroes. I’m not. But sometimes when I share stories about my illness to raise awareness, people call me a hero. While it’s an admirable noun, it doesn’t even come close to accurately describing the person I am when battling scleroderma.

To me, being a hero is an active choice, a courageous response or achievement. When it comes to my illness, the only choices I have are to fight to survive or let it destroy me. There’s no courage involved. No supernatural strength. It’s a basic instinct for all living creatures to want to live. I’m just a scrappy, strong-willed mama who doesn’t want to die.

Like a tiny animal cornered, I am clawing and biting just to experience another day. I’m fighting, but only because I simply have to. If someone called me tenacious, I would respond with, “Heck yeah!” I am absolutely a person who refuses to give up.

Does battling my sick body every day make me a hero? Perhaps if I chose to take on this daunting task, then maybe. But I didn’t choose this path, and I’d release myself from this torture at any moment if I could.

All the definitions of a hero I can find describe someone who’s selfless in their decisions. This is another reason I don’t feel worthy of such a title. My fight is 100% selfish! I don’t want to miss out on life. I want to see the world, celebrate marriages, and hold grandbabies.

This is is why I always feel like an impostor when I’m called a hero. I don’t feel worthy. It makes me downright uncomfortable because I feel like I’m using false advertisements and accidentally selling a knockoff version of myself.

The true scleroderma heroes

There are scleroderma warriors who do deserve such badges of honor. They are the ones who inspire and create adaptive technology to help people with disabilities live better lives. They’re the patients using all their free time to change laws or raise money to help others with rare diseases. So many people make this world a better place for those of us living with an incurable illness.

While I think my raising awareness is important work, I don’t belong in the same category as these angels. I’d be lying if I said I do it only to help others. I want to be cured, too! Again, a selfish reason.

Are people just being nice when they use words like hero? Am I not seeing their point of view? I struggle with these uncomfortable moments during conversations. For now, I’ll continue to politely smile, put my head down, and say, “I fight to survive. I share to educate. That doesn’t make me a hero — it makes me human.”


Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

MARGITTA HAPKE avatar

MARGITTA HAPKE

yes fighting to survive as long as we can. wanting to be be with loved ones ! As long as I can eat food! I am scared of the day when that does not work anymore , due to a esophageal dysmotility. Are you too ?
HOPE PUPPY IS OK

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Tim Harley avatar

Tim Harley

Oh my! Yes, I totally understand your position. Heroic, selfless acts of valor that move beyond the range of normal are how we typically define a "hero". And yes, I understand that the act of simply surviving day to day doesn't often seem to fit that definition. And we often use such terms as mattes of degree.

Like you, I have committed acts in my life that I would consider courageous or maybe even heroic. And like you, I would never call myself a hero. But let me posit to you this, if I may. True heroism, or valor, is about making a choice to act in the face of.overwhelming odds; choosing to do something even at the risk of one's own safety or welfare.

Many soldiers on the field of battle have little choice in being sent to that field. Most soldiers know that their life spans are statistically shortened by being there. Most decisions they make for them selves in the field are based on simply surviving the day. Their acts of selfless courage often come because they see someone else in imminent danger - something they wouldn't see if they weren't facing the same threat. That courage often, but not always, costs them their lives. They could turn their eyes to the situation, they could defect, they could choose to do nothing. But they don't. They choose to act. And we label that, justifiably, heroism.

You are fighting a battle you did not choose to be in. You face overwhleming odds. You know the prognoses of such diseases. But, you choose to act. You could sit back and do nothing. You could find a way to defect (and yes, there are those who do). You could simply survive each day. But, that isn't who you are. You are offering hope and courage to others around you in a battle they also did not choose to be in. You are caring for your comrades in arms. To someone, you have offered life giving breath.

That is courage. And yes, I would dare label it heroism.

Peace, this day.

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