Monday, May 2, 2011

Reaching Out to Reach my Goal

Stevens Johnson Syndrome was a very isolating disease for me.  I felt so alone as I tried to comprehend what had happened to my body and how it could potentially happen again.  

When I awoke from the coma, I was surrounded by loved ones telling me stories about myself that I did not experience with them.  I was in an induced dream world while they were sharing the horrifying experience of watching my body slough off much of its skin.  After we returned home from the Burn Center, Dave would try to tell me stories about the breathing tubes, feeding tubes, bandage wraps, and injections, but I felt like I could never understand it the way he and my family did.  I had so many questions, yet seemed so removed from the answers, like the entire ordeal happened to someone else.  I was asleep while they watched, gowned and gloved at my bedside, as my body fought to stay alive.

Upon returning home, I would ask my mom or Dave to research Stevens Johnson Syndrome on the internet and to read to me what they found.  Each website revealed the extreme rarity of this life-threatening disease.  I tried to find others that I could relate to, that could help me understand what I was experiencing, yet my results were slim.  Beyond a few informational sites and one small foundation, very little else was out there for me.  There was not a support group to attend, a motivational survivor to listen to, a 5K to walk, or the right color ribbon to wear.  I didn't understand what I had and the doctors, as amazing and knowledgeable as they were, were unable to give me definitive answers.  They did not know what caused this and they did not know if it would return.

As friends would call to get updates, they were confused by my condition.  They would speak horrifically about the research they had done on the internet and the pictures they saw on Google, yet I could not help to explain anything.  At this point, I was still blind and on the couch, hoping to heal from a disease I did not understand.  I quickly tried to change the subject with them, deflecting attention from my embarrassing, weak, scarred condition.  My family told me my skin had fallen off in the Burn Center and had now begun to heal, but I could not see and did not know what this meant.

When I returned to teaching after two months of sick leave, I did not tell anyone the extent of my condition.  To the students, I said that I was sick and that I was much better now.  To staff, I told them that I had a very rare allergic reaction and little else.  I did not want them to do the same internet research, discovering the truth about this terrifying disease.  Then, at lunch, I would lock the door to my classroom and sleep at my desk out of exhaustion.  I would put band-aids on my fingers to hide the nails that were falling off, trying not to scream if I snagged one on a desk during a lesson.  I would wear my hair the right way to cover the bald spots and put in eye drops every chance I got to tolerate the burning pain.            

It took years to actually open up to people about what happened to me.  Vague answers started getting more specific and I began to speak freely about the pain and the fear I'd experienced.  Now, as evident on this blog, sharing the details of my condition is something I can do comfortably.   My willingness to share helps me to create a resource I did not have during my own recovery... a survivor reaching out to help educate me about Stevens Johnsons Syndrome and support me through my darkest times.

I now accept a responsibility to future patients with Steven Johnson Syndrome.  I must talk openly about what happened to me in order to help them understand that they are not alone.  Part of the purpose of my blog is to begin that discussion and disclosure.  The more people that know that this disease is out there, the less isolated and confused someone will feel that gets it in the future.  When ready, we need to share our stories to fulfill our part as a community of survivors.

I am also a SOAR (Survivors Offering Assistance in Recovery) volunteer at the University of Colorado Hospital's Burn Center.  I am trained to talk to burn patients and their families from the perspective of a survivor.  While the other SOAR volunteers experienced external burns, I offer a unique experience as an SJS/TENS survivor. While I am not a medical expert, this peer support can help give guidance and outreach to those that need it most.

This fundraiser helps to fund programs like the SOAR volunteer program, community outreach on burn information, and support for the families of burn patients.  It is important that these patients do not feel alone and have a chorus of support surrounding them during their physical and mental recovery.

I would like to extend my deepest gratitude to the Optimist Club of Monaco South.  Collectively, they were able to raise $400 for the Burn Center under the leadership of my generous father-in-law, Dick Nickoloff.  Thank you so much for helping to raise awareness of Stevens Johnson Syndrome and supporting patients and families going through difficult times.

Dick and Dave at the finish of the Denver Half Marathon!
To donate to the Burn Center, go online to  In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."

Or you could mail your check to "UCHF- Burn Fund (Team Emilie)" to UCHF 12401 East 17th Ave. Mail Stop F485 Aurora, CO 80045.

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