A journey of hope and healing
Karen Scuilli and her son, 10-year-old Seth, pose in their Canton Township home.
Karen Scuilli is finding her voice again and becoming an advocate and source of support for others with disfigurements. In May 2012, Karen was diagnosed with parotid cancer on the left side of her face. She has undergone nine surgeries, radiation and chemotherapy that have left her weak physically, but have strengthened her resolve to help others.
Karen Scuilli is slowly healing – both physically and emotionally.
And along the way, she is providing an invaluable gift to others who are experiencing a similar trauma: unconditional support and understanding.
Karen, 49, of Canton Township, was diagnosed in May 2012 with parotid cancer that had radiated to her facial nerves. The parotid glands are the largest of the salivary glands and are located just in front of the ears.
In the first of nine surgeries two weeks after she received the diagnosis, the tumor was removed via an incision that spans from the top of her head to underneath her neck. The surgery and ensuing procedures, including reconstructive surgery, jaw realignment and a bone conductive implant, resulted in a facial disfigurement that, for the longest time, Karen could not handle.
She became withdrawn, retreating almost daily to a dark bedroom, the tears flowing down her cheeks, and distancing herself from supportive family and friends.
“I grieved my life working. I grieved my quality of life with my son. I grieved my face,” the single mom said. “But if you don’t come to the acceptance of who you are, you’re never going to heal. I always just saw my face. Now I see a person’s who’s different.”
Karen recently created an innovative healing company, Face2Face Healing, and on Saturday, she, along with her 10-year-old son, Seth, will take center stage as models in the American Cancer Society’s Holiday Fashion Fare, “Snowbody Stands Alone in the Fight,” at the Hilton Garden Inn at Southpointe.
“Having a child really makes you think about things, like medical power of attorney and a living will,” the single mom said. “Then I thought, ‘I’m not going to die. I’m going to live. I have a son.’ I knew I couldn’t leave him. I stayed positive for my family and told the doctors to get rid of the pain and do what they had to do.”
Her cancer is rare, and the prognosis, she said, was not good. But she trusted in her faith and the doctors she had chosen that she would survive; she just wasn’t prepared for the outcome.
At the time of her diagnosis, Karen was a nurse.
“I really loved being a nurse. I was in good shape. I thought I’d bounce back,” said Karen, who also has a degree in business.
But she didn’t, and she lost her job.
The surgeries, radiation and chemotherapy have left her weak, and she tires easily. Her endurance is low, and she has trouble walking and raising her arm. She is deaf in her right ear, she lost her ability to taste, and it wasn’t until the past year she started to regain some of the 80 pounds she lost when her jaw was wired shut for several weeks.
Although the American Cancer Society offers support groups for survivors of various types of cancers, such as breast and prostate, Karen could find no support groups for survivors living with disfigurements, and that’s partly what initially made her recovery so painful.
“I felt too alone,” Karen said. “Everybody else’s scars were hidden. Mine were on my face.”
She underwent counseling and attended other support groups, but it wasn’t until she listened to a nurse who was a breast cancer survivor that Karen had an epiphany. Like Karen, the woman was a nurse, and she was used to caring for others. Karen could identify with her, and suddenly she realized that maybe she was not completely alone.
“Losing my job was like losing my identity,” Karen said. “I had an identity as a mother, as a daughter and as a sister, but I was not contributing on a grander scale.
“I hid in my house. It was traumatic for me to look in the mirror.”
But Seth stood by his mom, and even though Karen is always aware of the stares and whispers, Seth hasn’t noticed much.
“I never thought of her any differently,” Seth said.
Eventually, Karen became more involved in health and wellness programs. She became involved in church activities and Seth’s school activities. And now, she is poring her heart and soul into Face2Face.
“My son has been so supportive,” Karen said. “He didn’t see me any differently than his mommy. We’ve always had such a close bond, and it’s strengthened more after this.”
Face2Face’s mission is to build “a community of individuals with disfigurement to promote healing through interaction and activity,” and is intended to extend far beyond those with scars from cancer. Face2Face is reaching out to wounded veterans, burn victims and others who are living with a disfigurement. The name is dervied from the fact Karen started out with one face and ended up with another.
“I’m finding my voice again. I want people to know the story behind this face,” Karen said. “My journey and healing have come through a lot of tears, and they’re not always bad.
“My journey, I want to make sense of it. I want to make sure it does not go to waste. Was I depressed? Yes. However, there were moments where I pulled on my inner strength to find a reason to move on. I never was a quitter. I was always a fighter.”
Face2Face plans to help those like Karen through weekly classes, monthly events and online story-telling. She wants participants to discover their talents through poetry, music and art, which, she believes, will help them work through their pain faster.
“I want to see them grow. I want them to connect with others who’ve been through it,” Karen said.
The Face2Face program is based at UPMC, Center for Integrated Medicine, at Shadyside Place, and was made possible through a grant Karen received in July through the Shadyside Hospital Foundation.
The company’s website, www.face2facehealing .com, is expected to be operational in January.
“There are a lot of people out there who are different,” Karen said. “I want to be part of the community and raise their awareness. I’m just a person who wants to help other people.”
For more information about Face2Face Healing, call 412-789-0327, or email face2facehealing@yahoo.com.