Let’s Imagine: Scleroderma Unawareness Day

When I was a kid, my friends and I loved to look at one another and spout with cruelty, “I hate you!” Just when it looked as though someone might cry, we’d shout with delight, “I’m kidding! It’s Opposite Day! I like you!”

We found the concept of Opposite Day hilariously entertaining. Perhaps the allure was that you could basically say anything you wanted and then use Opposite Day as a means to delete it. In our youth, we can suspend reality with the snap of a finger and declare it Opposite Day, pretend to be a mermaid, or indulge in other whimsical fantasies. Wouldn’t it be great if Opposite Day were real?

If I could pick one day to deem Opposite Day, it would be June 29.

Embedded within Scleroderma Awareness Month, June 29 is designated as World Scleroderma Day, a day to enhance the public’s understanding of scleroderma. If only I were still a kid playing pretend. I would imagine that World Scleroderma Awareness Day was Opposite Day. Get it? This faulty logic would transform June 29 into Scleroderma Unawareness Day.

Here’s how it would work in the land of make-believe.

On June 29, Scleroderma patients would be unaware of:

• Painful ulcers on their fingers and toes.
• Deformed limbs.
• Unsightly red spots all over their skin from broken capillaries (telangiectasia).
• Their fingers turning purple/white in the cold.
• Their mouth not opening wide enough for a proper dental cleaning.
• Their lips disappearing.
• Strangers staring at them.
• Chronic fatigue.
• Mounting medical bills.
• Looming doctor appointments.
• The endless loop of medical tests and anxiety inducing waits for results.
• The gripping distress that their symptoms will worsen, or become fatal if scleroderma attacks their lungs, GI tract or other internal organs.
• Fear of needing a lung transplant or stem cell transplant.

Of course, Opposite Day isn’t grounded in reality. Or is it? If scientists discover a cure for scleroderma, then wouldn’t every day be Scleroderma Unawareness Day? Scleroderma patients aren’t only aware of their disease on June 29. They are aware 24 hours a day, 365 days a year.

As I write this, many patients are waiting for a lung transplant, stem cell transplant or other life-saving measures. It is for them that we desperately need to raise awareness for this cruel disease. With awareness comes funding, and with funding we come closer to a cure.

It’s been decades since I’ve possessed the ability to suspend reality and play pretend. How is it that our brains, once so generously able to indulge in whimsy, become so rigid? I suppose maintaining a wild imagination into adulthood could pose some major hazards. I wouldn’t want to endure the consequences of imagining I could fly a plane, afford a mansion or sail around the world.

And, yet, if we shed every morsel of our child-like wonder, then we’re robbed of the chance to envision alternative possibilities. If we never stray from our current reality, we extinguish the capacity for change. So today, I choose to play pretend. I’ll imagine a world where scleroderma patients are no longer at battle with their own bodies. I’ll fantasize about scleroderma warriors inhaling and exhaling deep cleansing breaths of air. I’ll visualize a time when we won’t know the pain of an open ulcer, the gripping fear associated with being wheeled into the emergency room, or the anxiety of waiting for our test results. When you think about it, the adult version of playing pretend is possessing hope.

So today, I’ll pretend it is Opposite Day.

To learn more about Lisa’s journey with scleroderma, visit her personal blog.

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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 Services, and are intended to spark discussion about issues pertaining to scleroderma.