PC Community Stories
PCers have a great attitude
It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.' That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!
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A very high achiever, Tara wrote this for her college entrance essay
“Life for me ain't been no crystal stair,” a mother tells her son in Langston Hughes’ poem “Mother to Son.” This poem has influenced my life by inspiring me to never give up. When I was two, I was diagnosed with a rare genetic skin disorder called Pachyonychia Congenita, also known as PC. The disorder creates calluses and thickens the nails on both my hands and feet and limits my mobility. The more I walk, the more pain I have. Sometimes I wish I could have been born without PC, but when I look back, I see that it has shaped me into the person I am today.
This summer I went to Italy with my family for two weeks. It was an experience that required walking for several hours each day. I was stunned that my feet were not hurting and ecstatic that PC was not holding me back from achieving one of my life goals. No sooner did I have this thought than my feet started hurting--the pain was back. Once we arrived at our hotel in Rome I had a meltdown, crying and cursing at everything because I thought I could not enjoy my trip with the pain. During the time I was sitting and being frustrated, I remembered Hughes’ poem again, and how the mother told her son that her life “had tacks in it,/And splinters,/And boards torn up.” These words spoke to me; the pain was a splinter in my trip. The words echoed louder, telling me to suck it up and to keep moving forward. I resolved to do exactly that. I sucked it up. I moved forward without letting PC get in the way of my happiness. It was not as easy as one might think. My parents and I went to the Vatican Museum and our tour took four hours. They kept looking over at me, seeing me shake, grind my teeth, and squeeze the life out of my water bottle. They kept asking me if I wanted to leave, but I kept saying “no,” when deep inside I wanted to say, “Yes, I cannot take it anymore!”
When I look back at my Italy trip, I remember sitting in Piazza Michelangelo, eating gelato. I remember my mom singing “Alouette” (much to all our dismay) loudly in the car. I remember being awed by the frescos at the Vatican. More than anything, the trip serves to remind me daily that I am more than PC. I learned that I can control how much the pain affects me and I learned that I am capable of living past the chronic pain. Without PC, I would not have the same determination that I have now, and that determination is something I apply to all areas of my life. As the mother tells her son in the poem, “I’se still goin’, honey,/I’se still climbin’.” This poem reminds me that life is not and will not be easy, but all I can do is keep climbing over the obstacles and keep moving forward to achieve my goals.