Last week I was finally able to see my friend Christine. When I say “finally” it is not because she had any restrictions on visitors. It was timing. Every time I thought I’d go visit something happened to prevent me from getting into Boston. As I told her, I have to believe that there is and was a reason for my delayed visit. I have to trust that all of this was God’s timing. Her response: “You were meant to be here today.” And she wasn’t having a good afternoon.Christine is hospitalized with Stevens Johnson Syndrome. Stevens-Johnson Syndrome is a rare, serious disorder in which your skin and mucous membranes react severely to a mediation or infection. [Mayo Clinic]. Essentially, it is a chemical burn from the inside out.
During my visit there was a parade of doctors and nurses coming into her room. No one seemed to mind that I was there or that the doctors were discussing her personal, medical situation in front of others. The attorney in me dismissed it as implied consent, but yes, I did think about HIPPA. However, Christine wants to have others hear what her doctors have to say, and that is a good thing. When you are that sick it is important to have another set of ears, and for others to ask the questions you might not think to ask. I am impressed with her sister Caroline’s dogged insistence at asking questions and gently demanding answers.
Christine was having a flare-up of symptoms when I visited. Her lips were swollen and she had developed some new lesions around her mouth and on her tongue. I could see the fear in both Christine and her sister; the fear that they were starting all over again. (It seems that the doctors had started reducing her steroids too soon and the SJS hadn’t yet run its course). Behind that fear is also strength. The two of them, working together to make sure the doctors and nurses got a full picture of what was happening. They shared their experience of when Christine first developed symptoms and they didn’t know what it was. Having this shared history helped when the Attending and the eye doctor visited because they were able to compare the beginning of Christine’s illness with her current situation.
The more I have learned about this syndrome, through my own research as well as following a blog that Caroline started to keep everyone updated, I learned both of the seriousness of Christine’s condition as well as the long and difficult recovery she faces. Some would say that the reason she is doing so well is because she is young and (other than SJS) healthy. This is true. But there is more to it than that. Christine has faith and determination. What impresses me most about Christine is Christine.
During my visit we talked; we talked about SJS, her symptoms, and her struggles. We also talked about faith and knowing that this has a purpose for her life. And we took a walk. Christine had been bed ridden for two weeks and had just begun to take short walks to the nurse’s station and back. The day I visited she had hoped to walk four times. While I was there she took walk number three. Walking was not easy, but she wanted to walk a little further and do it on her own. Even when she was visibly tired she did not want the nurses to get her a chair. She was determined to finish her walk.It is that determination that I recognize and admire. There is a fight within that says “I’ll be damned if this thing is going to get me down.” I know she has her bad days; days of frustration and tears. That is expected. I saw so much of myself in her that afternoon. I was on the “other side” and I didn’t know what to say. I did tell her I was scared for her. It’s important to tell the truth. And by the time I left she looked much better; the swelling was down and she wasn’t as red. Her eyes seemed clearer, as if she wasn’t in as much pain.
As I left all I really wanted to do was take her in my arms, hold her tight, and make it all go away. Isn’t that the ultimate truth for all of us who are on the other side? It is the truth. About life, the universe and everything.