By Ken Rice

PITTSBURGH (KDKA) — We only get so much time to live our lives. Some, more than others. But we all know there’s an ending out there, someday. And being reminded of that reality – being confronted with it – can do amazing things.

“Remembering that I’ll be dead soon is the most important tool I’ve ever encountered to help me make the big choices in life,” is how the late Apple founder Steve Jobs put it.

He addressed graduates at Stanford University in 2005, less than a year after he was diagnosed with pancreatic cancer.

“Remembering that you are going to die,” said Jobs, “is the best way I know to avoid the trap of thinking you have something to lose.”

Jobs told the graduates to go for it. To follow their hearts. He told them his illness had given him the clarity to see that everything else is secondary, as if getting cancer was a gift.

Karen Scuilli of Washington County can relate.

“Even though I thought I had a good life before, my life now is better,” she says.

Three years ago, Scuilli was diagnosed with salivary gland cancer. A series of operations left her with facial disfigurement. She says no one should feel sorry for her. She says cancer, as it did for Steve Jobs, gave her clarity.

“I have changed,” she says.

She had been a nurse and an insurance company case manager. And she’s a mom. But she didn’t always have the time to hang out with her son, Seth, or to visit family and friends.

“I thought what I was doing before in my regard to my job was very important. But I feel my mission now is so much more important.”

Her mission now is “Face2Face Healing,” a non-profit she founded to help and counsel others dealing with disfigurement – whether congenital, from illness or burns, or neurological issues. To her disbelief, she discovered there was no other such organization in the country. Working with her surgeon, Dr. Daniel Pituch, she secured funding from the Shadyside Hospital Foundation. And it’s starting to take off.

“We see this growing to other areas around the country, because this is very much a needed service,” says Dr. Ronald Glick, board chair of Face2Face Healing and medical director of the UPMC Center for Integrative Medicine.

Scuilli has recorded interviews with other patients who describe their experiences and has posted them on her website. She hopes new patients can draw strength and comfort from watching them – from being reminded that they’re not alone.

The videos are moving. Says one woman, describing what it was like to be diagnosed: “At that very moment it was as if everything just froze in the room.”

Says another patient: “We’re here to help one another. And whatever we can do to help each other is what we should do.”

And in his video, a local pastor describes the new perspective his illness has given him by calling cancer, “the best thing that ever happened to me.”

Scuilli says it’s important for new patients to hear those messages.

“People with facial disfigurement or any disfigurement feel isolation, they feel rejection,” she says. So she seeks to help them regain their identity and self-esteem.

She recently began offering group sessions to further help patients re-engage in the community, and says the response she’s getting from patients and doctors has been great.

But she will also tell you that she’s not just helping others.

“It’s a wonderful thing to be able to talk to someone and help them through, and looking back and seeing this is where I was, and now knowing I’m a little bit further and now I’m able to help,” says Scuilli. “And as I’ve been doing this, my healing process has just gone to a totally different level. And I’m forever grateful for that.”

Patients of families dealing with disfigurement are welcome to contact Scuilli to submit personal stories of hope or stories of struggle and resolution in their own lives. Face2Face Healing is collecting written stories, photos and/or videos to build a “Library of Hope” for those who have experienced a life-changing event. Contact them here.

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