My SJS Care Week 2014

This post was written by Mariam, an SJS survivor from Chicago. She has been attending SJS patient events at BFS for four years. 

survivors with proclamation at BBQI 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 a familiar feeling between SJS patients and their families. It cannot be described except I can tell you it’s a warm fuzzy feeling. It is seeing an old friend, getting letters in the mail, wrapping up in blankets, and laughing like you have never laughed before. This years SJS Care Week was filled with old familiar faces that embraced us and told us stories about their whereabouts since we’ve last seen them. Although theses old embraces are ones we look forward to a lot, it is the new embraces that are more exciting.

On this recent trip I have met some wonderful patients and their families that I hoped felt the love we all bore them. Excitement filled the air as new patients shook hands and sadness overcame us all when we hugged goodbye. The relationships formed during this one week a year are some of the best life can give us. When we have weak moments and feel insecure, it is the people we meet at SJS Care Week that remind us how much support and love we have.

Alas, warm fuzzy feelings are only half the part of this important week. The other half is treatment. Somewhere between January and February my PROSE devices did their usual troublesome act and put me in a tight spot-literally.  After a few tries and failures (and a whole lot of stress) I ended the week with new and improved devices that left me feeling wonderful. The whole process is scary, nerve wracking, and downright repetitive. But it is made 99.9% better because of the kind and caring staff that stick with us throughout the ordeal.  I was on the brink of a nervous fit when my device wasn’t fitting right until my doctor and technicians calmed me down with their compassion and humor. Let’s not forget all the people who work backstage to make these devices and patient network possible!

Although each SJS Care Week is different, I always end up happy and sad at the end. Happy because I’ve seen and meet wonderful people, and sad to see everyone go. I headed home with new memories, new friends, and new devices. But I left a piece of me back in Massachusetts; awaiting the next time I’d see my SJS family. Until next time!