Your face. It’s what others see first. Where people look when you talk.
Your expressions. Your hair, makeup, and jewelry. Everything about you and what you’re thinking, how you feel, what you want others to perceive can be read on your face.
That’s why scarring or disfigurement can be particularly devastating, especially for women. Between societal pressures and our own desires, we want to present our best facade, always.
But women are strong. We rise above adversity. And with our own pain comes the power to lift others up. Our light shines through. Like Japanese pottery mended with gold—the art of kintsugi—women become even more beautiful with our flaws.
“The wound is the place where the light enters you.”
I was diagnosed with cancer of the salivary gland in May 2012 and had part of my jaw, temporal mandibular joint, nerves and muscle on the right side of my face, and external ear canal removed. The surgeon used part of my hip bone and nerves from my right lower leg to rebuild my face, but I required many more surgeries, as well as chemotherapy and radiation.
I felt like a bomb blew up the life that I worked 47 years to orchestrate. I struggled for normalcy. Before my diagnosis, I was a nurse with a double masters in nursing and business, working on my doctorate while climbing the corporate ladder. Then suddenly, I was receiving care instead of giving care.
I kept asking, “Why me?” I was angry about all I lost: hearing in my right ear, reduced sense of taste, trouble standing and walking. Then, when my doctor said he couldn’t reconstruct my jaw because of the radiation I had, I told him I wanted to join a support group. But there was nothing in the U.S.
So he suggested that we start a group together.
I was excited. I was used to being busy—I did public speaking, clinical client consultations, spoke with CEOs, and more. Starting Face2Face Healing changed my own recovery.
Personally, as I recovered, I tried to balance work and life with my son. I had to go on disability, but I got to spend more time with him. I just tried to live each day to its fullest. Life is so short, so relationships are important, as well as giving back and doing daily acts of kindness. After my surgery, I was stared at and avoided and even saw people point at me like I was a monster. It was difficult because my son was a witness. I talked to him about doing things out of kindness and connecting in small ways. I want people to know that you’re more than your face; you’re more than your scars . Now, I don’t sweat the small stuff.
Today, Face2Face Healing helps those who have facial scarring from burns, facial palsy, accidents, congenital anomalies or various other causes, and there is always something in their stories that resonates with me. It’s amazing how having that bond with someone helps the healing process. I always wanted to make an impact as a nurse and Christian, and now I’m really doing it.
Whether I am speaking to an individual with disfigurement or health care providers who want guidance, my story feels like a story, but it creates an emotional response. I don’t feel like I’m doing anything that special or out of the ordinary. It’s just what God has called me to do. I want people with facial and bodily disfigurement to understand that they don’t have to hide. They can be recognized for who they are.
I didn’t know that acid attacks were so prevalent in Uganda, where I used to live, because victims usually hide. They are afraid of being condemned. Helping these women is my calling.
I was attacked after I finally left my husband. I had been physically and mentally abused by my ex-husband for 7 years. He controlled what I wore, who I saw, or who I made friends with. Even with my master’s degree he kept me as a housewife. In Ugandan culture, the family must keep their daughter in her marriage, so my family made me go back whenever I tried to leave.
My father finally said that I had nowhere to go if I left my husband, so I got a job so I wouldn’t have to go to my family for help. That’s when I took my daughters, age 5 and 1 and a half, and moved into our own apartment.
When my husband said he wanted to see our daughters, I was afraid he would hold them captive. But he pressured me, so I finally let him have them for a couple days. When he called me to his house to pick them up, a man there threw chemicals on my face. My girls started screaming. The neighbors came out to help, but they didn’t know what to do. I ended up losing my nose and sight in my right eye and eventually my entire facial identity.
Once this happened, I finally won my freedom. No one made me go back after that.
My experience helped me appreciate who I am beyond my physical appearance. Now I focus on inner strength and beauty. I discovered I had other assets, like a voice and a story that can empower and break the silence. In the United States, I give talks about abuse and empowerment. I talk to girls about exercising their rights, and I help boys understand how to treat women.
Today, these stories are all over the media, and we don’t have to hide. Every abused woman is now unveiling their scars.
To help them, I started a non-profit, the Center for Rehabilitation of Survivors of Acid Violence (CERESAV). We promote human services for acid attack survivors in Uganda to help prevent them from dying in the hospital due to infections, extreme burns, or lack of support. We also advocate to prevent future attacks. To help protect victims, I spearheaded legislation in Uganda. In 2016, the president, passed a toxic chemical bill into law, which would help restrict access to concentrated sulfuric acid.
When I was 15, I was involved in a hit and run accident. My mom was driving me to a school picnic, and when the other driver hit us, he was speeding. After the initial impact, we hit a brick wall. The dashboard and the windshield all crashed around the passenger side, and the car was totaled. My lip was completely shredded, and I couldn’t feel it. I ended up with 241 stitches in my upper left lip, some by my eye, and some on my forehead. I was awake for the whole 6-hour surgery because I had to move my mouth around so the doctors could somehow form a lip again. It was terrifying.
Just before the accident, I had started modeling, so that had to end. I became even more self-conscious than most teenagers. I didn’t go to school for months, and I had to quit dancing, which I loved. I wore a scarf around my face all day long, especially when we had visitors. After a few months I had to start getting collagen shots in my lip so they could continue doing surgeries. The shots were horribly painful.
I’ve had a couple different surgeries to form the lip better and decrease the scar tissue that formed a huge bump from my lip to my nose. I now have all the feeling back in my lip, which is a blessing. I also recently went to Cosmetic Solutions (mycosmeticsolutions.com) in Pittsburgh, Pa., and the owner, Rachel Schinosi, gave me a lip liner tattoo to define my lip. Before, it was flesh-colored. Now l, I have a line and when I look in the mirror, even when I first wake up, I feel more confident.
The support of friends and family, especially my parents and grandparents, has been crucial, and I’m so blessed to have had that during such a horrific time. Today, I am a wife, mother, owner of a small business, and senior advertising executive for Inspiring Lives. It was a dream of mine to have this article written about the women who have overcome their injuries and how they have empowered others. Through the years, I have talked to many women with facial deformities who lacked confidence, and we have been able to uplift and support each other. This, along with modeling again, have helped rebuild my confidence. As I’ve gotten older, I’ve realized that it matters more who you are on the inside than how you look on the outside. If you have confidence and treat others kindly, they don’t even notice your imperfections.
“People come to us in different phases of their recovery, and we offer them support,” Karen Scuilli, founder and owner of Face2Face Healing, said.
Frequently, people are left emotionally and/or physically unable to adapt to their new situation following a disfigurement. Birth defects, cancer, burns, facial palsy and other neurological issues, injuries, and trauma can lead someone to confront facial and bodily differences. Someone may feel lonely, confused, or rejected, along with dealing with a physical change to their bodies and possibly having changes to their daily lives.
Face2Face Healing was created in response to the gap between finishing medical treatment and resuming life on your terms. Its goal is to “empower the individual with disfigurement to see their inner beauty and give them back their voice.”
Part of that empowerment is found in connection. Face2Face Healing creates a support network, offering those with disfigurement opportunities to meet and share their stories. Scuilli tries to personally visit new members to speak with them and their caregivers, but if they are not located in the Pittsburgh, Pa., region or surrounding area, she at least calls them. “Talking to them one-on-one makes a bigger impact,” she said, “because I’m living it, too.”
The service is available to people nationally and internationally through an interactive website. Face2Face Healing offers programs, videos, and live PHI-protected video conference calls with support groups to help people heal. Even those who are not ready for others to see them can participate with the video turned off. Stories from others with disfigurement are featured on the website to help those who are new to the program.
Scuilli used to be a case manager, so one of her focuses for the program is resources. She can help patients find doctors or financial assistance, as well as educational presentations locally and nationally. Many who experience the transition to life with disfigurement have financial constraints, so Face2Face Healing has resources to help with costs. Because dental care is really important, especially for cancer patients, Face2Face Healing offers Mission of Mercy Pittsburgh Free Dental Care to provide free dental care for those in need in the Pittsburgh and surrounding area.
Aside from the standard offerings of the program, Scuilli also acts as an advocate for individuals with disfigurement, and she tries to collaborate with other people and organizations like the American Cancer Society or the Cancer Caring Center to help the patients.
Scuilli started Face2Face Healing in July 2014 and was awarded 501c3 status in July 2015, and she has enjoyed the personal growth that comes from running a non-profit. But she also says that she couldn’t have helped so many people without the support of her fantastic board of directors. “They give their time to volunteer,” she said, “and they have helped our nonprofit, as well as me, grow so much. I couldn’t do what I’m doing without their help.”
Scuilli’s work is being recognized now in a big way. In April, she was honored with a 2017–2018 Jefferson Award for her volunteer work with Face2Face Healing. She is also one of six nominees to be considered for the national award this year.
The Jefferson Awards (jeffersonawards.org) spotlight Americans who exemplify outstanding public service. Honorees are leaders who impact the lives of individuals and help build better communities.
For more information about Face2Face Healing, please visit face2facehealing.org.