In the Land of Make-Believe, Today is Scleroderma Unawareness Day

When I was a kid, my friends and I loved to look at one another and spout with cruel conviction, “I hate you!” Just when it looked as though someone might cry, we’d squeal with delight, “I’m kidding! It’s Opposite Day! So that means 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 was real?

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

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

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

On June 29th 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 29th. 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. A lot of people I know feel bad that I live with such a painful and disfiguring disease. The truth is though, I am living a full and enjoyable life, despite having scleroderma. Not all scleroderma patients are nearly so fortunate. 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 in the hopes that one day I won’t have to pretend.

 

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