Scleroderma: The Soundtrack of My Life

Everyone on the face of this Earth has gone through something that temporarily halts their life, similar to a “pause” button on a CD player. It could be something aggravating such as breaking a limb, or something stressful such as moving to another state. In those moments, it takes a while to adjust to the new path life has carved. But as time goes on, you sort yourself out and eventually get back to a normal routine. The slight pause resumes into play again once you are adjusted.

What happens when life as someone knows it comes to a complete halt? The universe presses the “stop” button on one’s life track and they’re hurled into a completely new territory of the unknown. Life as they know it is no longer the same, and it possibly never will be. It’s not very often one goes through these situations, but when they do, they don’t come back the same. It could be many different instances such as having a child or joining the military. A piece of them is left behind, as they learn to play the soundtrack to a different kind of life.

Scleroderma is the soundtrack of my life. I was diagnosed in 2010, but I’ve had symptoms since 2009. I went from living a fairly healthy, normal life to being completely physically disabled at 28 years old. Scleroderma is an incurable disease in which my body makes too much scar tissue. So, essentially I am filled with dead skin tissue from head to toe, which has demolished my skin and made it really tight. It’s super painful and comes along with many other symptoms all throughout the body.

I can’t lift my hands above my head. I can barely turn my head left or right. My eyes used to be slightly slanted, and now they are wide because the skin on my face is so tight. My mouth barely opens. It’s almost as though the universe pressed “stop” on my life and pressed “play” in someone else’s. It’s a constant challenge every single day to get dressed, eat, brush my teeth, shower, put on lotion, sleep, walk, open a door. You name it, and I probably hurt trying to do it. I’m actually in pain right now as I type this, in my shoulders to be exact.

My CD doesn’t skip. I play the tracks smoothly, without a hitch. I try to live as normal of a life as I possibly can for now, because I have no idea what direction the disease will go in the next few years. I want to look back on my life with the satisfaction of knowing that I really tried to live it to the best of my ability. Scleroderma has become my favorite song to play. I’ve learned more from my disease than I could’ve learned the next 40 years as a healthy person.

Scleroderma has taught me the significance of how important every single second of life is, and how we all are the captain of our own ships – it all depends on you where you steer the wheel. It’s taught me to not fight about silly things, and to cut anyone out of my life who isn’t helping me achieve positive goals. I get to meet really awesome warriors going through the same thing as me or worse. I really admire those going through a struggle and owning it. I love raising awareness about scleroderma, which is much-needed because it’s a rare disease. I also get to support others who are suffering like me. I can show them to not be ashamed of what we’re going through, but to embrace the life experience. It’s too late to sit and cry about it, even though I do that sometimes. But I pick my butt right back up and keep on pushing.

So, if you’re going through something awful in your life, just remember it’s a pause. It will pass. And if it’s a stop, you can get through it as well, and you may even come out a better person. I’m sitting here typing this blog with two fingers. My pinky on my right hand and my ring finger on my left. The rest of my fingers are stuck and will not reach the keyboard. What’s your excuse?

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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.