For Patients

Getting Through it With Your Life

Getting Through it With Your Life

Patient: Eileen Share
Diagnosis: Stevens Johnson syndrome
Sight Restored: 2006

Six years after surviving SJS, Eileen Share found BFS and got her sight back.  Able to read for the first time in years, she joined a local book group.  Soon after she caught the volunteering bug and got involved with a youth literacy organization in downtown Chicago.  “I finally felt good enough that I could give something back,” she said.

Reflecting on the experience, Eileen shared, “Before getting SJS I was just very involved in my life and volunteering was not on the top of my list.  When you have a traumatic experience, you barely get through it with your life.  I got through it with the support of family and friends.  Some people disappeared and some stepped up and came out of the woodwork.  They took the time to help me with no expectations in return.  It changed me. I realized that there are a host of people out there that I could help.”

When the UIC PROSE clinic opened in Chicago in 2010, Eileen transferred her care to the doctors at Illinois Eye and Ear but continued to keep up with BFS through the e-bulletin.  In March when she saw the call for SJS Kids Week volunteers, she jumped. Since getting sick a decade earlier, “I hadn’t been involved with any SJS patients.  I guess I had gotten myself removed from feeling like a patient — I had reinvented my life.  Now I was ready to give something back.”

Eileen did not have any expectations before getting on the plane to Boston.  She was picked up at the airport and joined by Bailey and her mom Julie, who had flown in from Texas. “From the minute I got in the car there was this instant connection; talking about what it was like when we were sick, realizing that we had been on a journey that was really similar. That was a barrier breaker for me.  She got it, she knew I got it.  Our age difference or how long ago it happened did not matter.”

Upon arriving on campus, “I felt so welcomed and appreciated!  Everyone around me was convinced that I could be useful.  I immediately felt like I was part of the community.”  From doing dishes in the Yeo House kitchen and playing games on the lawn, to sharing her story in support groups and spending time mentoring young adult girls, Eileen jumped in to help make the week memorable in many ways. “Honestly, I felt like I got a lot more out of the week than I gave.  It was amazing,” she said.

When asked about her experience as a mentor, Eileen reflected: “I think I helped them to see that their lives are different, but they are not over.  The healing process is long; physically it is enormous, mentally it is enormous.  But over time the list of what you can do gets bigger than the list of what you can’t do.”

Reflecting on her life post-SJS, Eileen said, “My life is better because of it — fuller, richer, with more dimensions.  So many new doors have opened because I have an awareness I might not have had.  I wish it didn’t happen, but all of these wonderful things have come out of it, including the chance to meet these incredible kids and families.  I would not be the ‘me’ I am today — and I like this me just fine. I wouldn't change anything."

"IF YOU SURVIVE SJS, YOU CAN DO ANYTHING."

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