The Gift of Pemphigus Vulgaris

The Gift of Pemphigus Vulgaris

Staci White

One morning, after finishing my workout, I began strategizing ways to convince my doctor that two years into remission was the perfect time for me to get the butterfly tattoo I wanted. Butterflies now have a special place in my heart as a simple, yet extraordinary, symbol of renewal; of the necessary challenges in life that mold you into the person you should become. My plan is to place it on the inside of my left wrist as a reminder of what I’ve overcome and the beauty that awaited me on the other side.

As I tried to determine the angle I would use to secure my doctor’s blessing for this tattoo (to know my doctor is to understand why I needed to be prepared), the first thing that came to mind was that the tattoo was an opportunity to take something back that pemphigus vulgaris (PV) stole from me. That is the nature of chronic illness, isn’t it? It took from me my perceived control of my body, months from my life as I recovered, and so much more.

The madness was that I soon began thinking how much PV actually had given to me. This startled me a bit. But as I let it linger, I realized that PV had given much more than it had taken from me. Dammit! Who saw that coming? I know, it’s counterintuitive when we think of all the challenges PV brings—the pain, the twisted road to diagnosis, and, oh yeah, the fact that no one actually knows what the heck it is. My mother kept

The surprise is that as your walls crumble, you can discover the rawest part of your strength and how to harness it in magical ways.

calling it lupus for the first two years after I was diagnosed. My mind understood that she was just trying to find a reference point of understanding, but my heart was bruised each time I had to explain it to her.

18 Quarterly | Fall 2018 www.pemphigus.org

I recognize that it is much easier for me to think about the gifts I received from PV two years into remission, but the voice you hear today is over seven years old. My journey began in 2011 at the severe end of this illness with wounds/blisters over 85 percent of my body. On Memorial Day weekend in 2011, I landed in the emergency room in so much pain that I could not stand up straight without assistance. Specialists were called in from their long weekends because my care required it. Months after being discharged from the hospital where I was finally diagnosed, one of my specialists, Dr. S, told me he was afraid when he saw me in the hospital because my skin was gray.

I’m sure this makes the idea of viewing PV as a gift even stranger. However, I maintain that my life is richer and more complete because PV changed it in the best possible way. It forced me to be still, something I had no idea how to do and no desire to learn. Stillness allows you to listen to your mind, soul, and body. It gives you the opportunity to move on those quiet discoveries that come when you listen to your inner voice. Stillness creates a clear channel for God (or your higher power) to speak to you with such power that you have no choice but to move with certainty into your purpose.

PV forced me to learn that real strength comes from vulnerability. When you move from being ferociously independent to depending on friends and family to do the simplest tasks for you, like opening a bottle of Gatorade due to blisters on your hands, you quickly become humble and vulnerable. The surprise is that as your walls crumble, you can discover the rawest part of your strength and how to harness it in magical ways.

PV uncovered the creativity that lay dormant in my spirit. This piece would not be possible without it. I write poetry now. There are moments when words come to my mind with such intensity that it’s as if they are pouring out of my spirit. I’ve learned to use words to breathe life into emotions. The clouds, sunsets, and nature in general are more beautiful to me because I slow down long enough to savor them. PV pushed me to take pictures of these scenes as a I stand awestruck by the beauty that surrounds me each day.

PV reordered my values. I always believed that my family and friends were the most important things in my life. But if I’m being honest, I’d say that my actions indicated that my career was my priority, with those I love coming a very close second. Now I seek quality

time with my family and friends often. My goddaughter laughs at me because I always talk about making memories. If I have to choose between work and spending time with those I love, there is no hesitation.

Finally, PV has made me fearless. I feel in some ways like a superhero, which is fitting since my childhood idol was Wonder Woman. I approach life with a peaceful certainty that I can’t be broken, and that difficulties arise to light the pathway for growth. If I can survive PV, I can get through anything, and so can anyone in my village (my friends and family). That’s not optimism, it is clarity based on fact and immovable faith. Everyone’s journey is unique, but I encourage you to consider one thing: Is it possible that even though you didn’t ask for pemphigus or pemphigoid, it ended up enhancing your life in unexpected ways?

Staci White is the Operations Manager for GeneticsServices and the Institute for Child Development atHackensack Meridian Health. She currently lives inHackensack, New Jersey. Staci was diagnosed withpemphigus vulgaris seven years ago and is celebratingtwo years in remission.

Staci White

Journal of the International Pemphigus & Pemphigoid Foundation

Quarterly | Fall 2018

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