How PC Lives With Me
When Mary asked me to talk about my life with PC, I thought, “what am I going to tell a room full of people who live with PC every day – something they haven’t heard before, or something they don’t already know?”
So, and please forgive me Mary, I began this exercise by changing the name of my chat from Living with PC to How PC lives with me. It’s a small but powerful change because that small nuance puts me in the drivers seat. And after all, I am the one calling the shots here, not my PC.
And I figured that the best way to communicate how PC lives with me is to share a letter I wrote to my PC. That’s right, I wrote a letter to my Pachyonychia Congenita. After all, he has a fancy scientific name, an entire organization named after him, a team of doctors and scientists studying him, and us, his followers of sort, so why not give him a face.
So I’d like to share my letter with you now. I titled it, An Open Letter to my PC.
Well, already a bad start. You’re not so dear. So let me start again.
Hello PC. Yeah, that feels better. Hello PC.
When I first met you, I was six months old. I didn’t know who or what you were. But then again, I was six months old! But more importantly, neither did my parents, family, or my pediatrician. Looking back, it makes sense that no one knew, as I’ve since learned that I’m a spontaneous case, meaning that my PC is spontaneous and not inherited. Lucky me. But also, lucky you. Because you get to know me.
When I was three, Dr. Sidney Barsky figured out the mystery of who and what you were. I was a bit lucky to find out so early in life even though Dr. Sidney titled the report Pachyonychia Congenita. After all, it was 1965.
The report was very clinical…and I quote, “A three-year-old boy is presented, who since birth has demonstrated nail and skin changes of the thumbs, index finger and mid-fingers. Since 6 months of age there have been similar changes noted on the first, third and fifth toes. The condition has become progressively worse with new wart-like lesions developing on the skin of the hands and feet. No other members of the family have had a similar condition.”
And the rest is history. You made your grand entrance PC, and what an entrance it was, you narcissistic pain in the hands and feet.
My parents read the report and kept reading and reading, certain they would get to the section labeled cure, which of course never came. Ok, no cure, but how about treatment? There had to be a section on treatment. Again, no luck.
My parents weren’t devastated because they had no idea what this condition meant for me or my life. I call it blissful ignorance. In the 60’s there was no internet, no Mary Schwartz, and no PC Project. Well there was Mary Schwartz but we didn’t know her then. And there was no one we knew who had the condition.
So my parents and I learned how to deal with you. What other choice did we have? We survived your terrible infections…Boy they hurt. Were you angry with me during those episodes? We survived the monthly foot doctor appointments where my doctor used a scalpel to hack you off. Boy those hurt too. But we survived. And we learned to live with you. Because you weren’t going anywhere. You moved in and you were settled. Curse you PC!
I hate to admit it PC, but you’ve changed my life and I hate you for it.
I hate you for making my finger nails ugly, so ugly that other kids made fun of me growing up. I hate you for making me walk “weird,” now affectionately called the “PC Walk.” But back then the kids didn’t see any humor or compassion in my walk. I was just different and that made me a target. I hate you for preventing me from playing most sports and for dreading PE class.
I hate you for the pain you cause. The pins-and-needles feeling, the deep ache that cuts all the way to the bone. I hate that even when I treat you well, even baby you -hot water soaks, cold-water soaks, elevating my feet, rubbing creams on you, massage, Vaseline baths, whatever – you’re never satisfied! You still cause pain. And I hate that the pain you cause makes me grouchy and lash out to the people I love, work with, and even total strangers.
Sure PC, you can wave your victory flag, because now you have an organization built around your name and it’s all about you. And you can add me to your list of the thousands of others that you have managed to infect like an unwanted house-guest.
Oh PC, just your name drives fear and misery into the hearts of parents and prospective parents everywhere. Like a selfish partner, you stick, you hover, you cause pain, and just when I feel I may have you under control, you swoop in via an infection or swollen feet. Wow, you must be quite proud of yourself for the power you have over my life and me. So PC, I want you gone.
I told you before you changed my life. And in your infinite arrogance, you assumed it was for the worse. HA! Guess what? You were wrong. While I certainly don’t love you or even like you for that matter, I do respect your power. You’ve made me a stronger person. You’ve taught me how to be courageous by exposing you to legions of doctors interested in learning more about you and by standing up to bullies who have no interest in learning anything about you except to use you as way to call me out as different.
You’ve taught me to persevere by never shying away from giving my son a long, walk-filled day at Lego Land and Disney World. Or by walking 10 blocks with clients, who say, oh let’s walk to the restaurant, its just a few blocks from here. Or walking the cobblestone streets of Venice and Rome with my husband.
You’ve taught me understanding. Understanding for others who are different from me, politically, socially, educationally, and economically. It’s a skill that’s helped me build a successful business and for that I’m grateful. You’ve shown me how to understand myself by teaching me how to take the time to listen to my own body. Listening to when my body says enough already…sit down, get off your feet…relax.
You’ve shown me love. Love of a Grandfather who decided he can and would single-handedly cure you. One of his most ambitious and innovative tries was cutting and slicing lemons off his lemon tree and taping them to the bottom of my feet for an hour, followed by wiggling my feet on a sandy Florida beach until the callous just scuffed off forever.
Love of friends, who through to this day offer me a ride on their back, literally. And love of strangers, who offer a seat or a look of “I get it,” or “Whatever it is, I hope it gets better.”
You’ve given me “feet night” at my house, where once a week I get to have important conversations with my son as he helps me prepare my footbath and feet shaving.
You’ve given me some of the most vivid dreams of being a runner in the Olympics, winning Gold, and standing on that platform, pain-free, for hours.
You’ve taught me how to out crawl anyone else I know. Not an Olympic sport yet, but one can hope.
You’ve shown me how to be comfortable in the face of randomness. Yesterday my feet were fine. Today I ache. What changed? Nothing. It’s just you being you, PC. But now I’m less of a control freak and understand that sometimes life just happens without an explanation. And that’s ok.
You’ve taught me the power and fine art of collaboration, or the act of working together with someone else toward a common goal. Collaboration between doctor and patient, boss and employee, board chair and board member, spouse and spouse, father and son – the list is endless.
Through the PC Project, the organization devoted to your demise, I learned definitively that I have you. No question mark here! You’ve been outed PC. And I quote, “a heterozygous change of T through A was identified in exon 1 of the KRT16 gene, resulting in the replacement of Leucine (CTG) with a mutant Glutamine (CAG) at position 128 of the resultant protein. This mutation is denoted L128Q of Leu128Gin.” How’d I do Frances Smith?
You thought you could hide, PC? No way, Jose. We know you.
Also through the PC Project, I’ve met my heroes…People like Mary Schwartz, Jan Schwartz, Roger Casper, Estovan Embarka, Roseann McGrath, Stephen Jiang, David Fowler, Robert Lindfors, Holly Evans and many others. The Project gave me the opportunity to meet – for the very first time – other people who share this PC journey with me, giving me an education in who and what you are and why you cause pain, and giving me tips on how to partner with you more comfortably.
So I’m grateful for the learning PC. But let me clear: I pray for the day you’ll pack your bags and leave me the heck alone. I pray for the day that Roger and his team at Transderm obliterate you, or even minimize you. You deserve it and the Transderm team is exactly the right folks to make it happen.
So my dear PC, my powerful painful partner, I thank you for the last 53 years together. And whether we have another 53 years, or are separated one day, I don’t wish you ill, I just wish you gone, long gone.