This post was written by Mariam, an SJS survivor from Chicago. She has been attending SJS patient events at BFS for four years.
I arrived in Dedham, MA around four in the afternoon, exhausted and worn down from my long trip from home. We checked in, dropped off our luggage, and waited. That period between arrival and meeting other SJS patients and their families is one filled with anticipation. I sat there on my bed thinking about how our first meeting and how the rest of the week would play out. Who would I meet? Who did I already know? And most importantly, what could I learn this time around? My family and I have been to four SJS Care Weeks and with each trip I left with something new. I left with new friends, new support systems, new tips and tricks concerning lenses and general medical care. When the time came, I got up and walked down the hall, nervous about what I would see behind the “SJS CARE WEEK” door. I did find something when I opened that door- and that was love.
There is much to celebrate in May: Memorial Day, Cinco de Mayo, and Mother’s Day probably come to mind quickly. What you might not know is that this month is