Thoughts on Christine's SJS experience

Since leaving the hospital, my sister Christine has been the primary author to this blog. I have been thinking about making a guest appearance for quite some time now, but it has taken me awhile to gather my thoughts, consider my content, and choose my words. Recently, Christine and I have been discussing some exciting plans for this blog, so you may see more posts by me in the future. Before I launch into my reflections of Christine post-hospitalization, I wanted to thank all of our readers for following this blog and reaching out to Christine to share your own SJS experiences. We have been truly amazed by how many people this blog has reached, from all over the world. We hope that sharing her story is helping others and their family as they suffer through what is an incredibly horrible and unfair condition.

Post Hospital Life

Christine’s one-year anniversary of developing SJS is just around the corner, coming upon us in early April. She is doing her best to adjust to the changes SJS has made to her body, her lifestyle, and her soul. She is incredibly fortunate to have the support of a family who cares about her immensely and a community of SJS victims she has met online. After leaving the hospital, Christine first lived at our grandparent’s house with our mother and stepfather so that she could be close to her hospital doctors. Her health improved, and her doctor’s appointments became less frequent. She moved to our mother and stepfather’s home, where she stayed and considered her next steps in life. A job posting for a sexual violence advocacy job in our hometown caught her eye, and she took a leap and jumped on it. In September, she began her new job and independent life.

One thing that always comes to mind when I think about my response to what Christine went through is something my mother has said to me over and over again “you will never understand the love a mother has for her child until you have kids of your own.” Because I do not yet have children, I cannot dispute this statement and can only imagine it must be true. However, I sometimes wonder if I come close to understanding what my mother feels in my interactions with my siblings—particularly those with Christine. As a rule, I am not a very emotional person. I am an engineer, and have the stereotypical logical approach to nearly all things in life and the noticeably steady emotional response to both positive and negative situations. However, the one place where I break down is when the people I love most are suffering. Even writing about this now, my eyes are welling up with tears.

Needless to say, Christine’s SJS experience has been emotionally difficult for me. I feel bad even saying this because my own emotional pain pales in comparison to what Christine went through, is still going through, and will be struggling with the remainder of her life. But writing about this is my way of telling her how much I love her, and of reaching out to the family and friends of other SJS victims who undoubtedly understand what I’m saying. I recently started a new job and my driving route to work is almost exactly the same as the route I used to take each day to visit Christine at the hospital. Every morning I am reminded of what my sister went through last spring and my own emotional wounds still feel raw.  When I think back to this horrific time in her life I am usually seized by a mixture of fear, sadness, a sense of unfairness, and relief.  I haven’t told Christine that I think about what she went through, and is still going through, every, single, day. Many days I am almost crying as I drive to work I am so overwhelmed with my memories. Every time I see an ambulance I am reminded by the terrifying experience of calling 911 from my apartment when she couldn’t breathe because of her swollen tongue and the sloughing in her mouth and throat. I have had to change my phone ring tone and notification noise, because every time I hear my old ring or text message alert I feel a jolt of panic from those nights and mornings when I was anxiously awaiting any news from the hospital. It’s a constant reminder to live in the moment and hang onto the things you love most.

Even though Christine’s skin has healed, she has become a new version of herself, both physically and mentally. She will likely always have some scars or discoloration on her skin from the full body rash. She still struggles to lose the weight that her steroid treatment caused her to gain, and to rebuild the muscle that she lost from six weeks in a hospital bed. Because she had a very diligent and caring ophthalmologist during her hospitalization, her corneas have escaped undamaged. However, she does have significant scarring on the inside of her eye lids, which needs to be carefully monitored to ensure it does not damage her cornea as time passes. Her tear ducts are scarred closed, which helps keep her eyes moist but also means her eyes are constantly tearing and she needs to carry a tissue or handkerchief at all times. She lost all of her eyelashes in the hospital, and I will always remember the day she called me crying to tell me that they had all fallen out. Her fingernails and toenails have only sort of grown back, and will never look the same again. She loses hair in clumps. Her tongue is scarred and she often has small blisters in her mouth—something that she and her doctor are currently exploring via an allergy panel. Christine’s gynecological involvement was extensive, and there are lasting effects there as well. There is constant fear of an SJS reoccurrence and skepticism of all medications. Just a few weeks ago she developed what turned out to be a harmless rash, but prior to seeing the doctor we couldn’t help but be concerned.

Despite all of this, Christine still finds opportunities to laugh, to dance around the house to her favorite tune, to wear makeup and fancy clothes, to love her dog, to hang out with her family, to make a difference to all of the sexual and domestic abuse victims she works with on a daily basis. I’m not going to lie and say that my sister has been the pinnacle of optimism.  When she first came home from the hospital, she was downright nasty to be around. She was incredibly angry and bitter about the hand she had been dealt in life, and she had trouble finding anything bright in her future. She tried very hard to be optimistic, but it was understandably difficult to do. I do not blame her for this retaliation. She pulled through, and has reshaped her life and learned to enjoy some of her favorite things again. She still has her bad days, when it’s hard to overcome the immense feeling of loss and unfairness that SJS has left her with. These days are particularly hard for me as well—naturally, I want my sister to have everything she has ever dreamed of having and to live a pain-free life. While she has a good life post-SJS, it is for sure a different life than she envisioned herself having.

Christine finds comfort in spreading SJS awareness and talking with other victims. Constantly, she says she wants to do more to further SJS research and to work with SJS sufferers and their families. She wants to share her story, and the story of others. She wants to help advance medical knowledge of SJS to help prevent further cases and improve treatment. Obviously, not all of these things are easily achievable. However, she and I are currently exploring ways she can make a difference. When I think about SJS awareness and wanting to spread her story, I always think to myself “What makes this story of pain and suffering any different than anybody else’s story? People her age are suffering from diseases, cancer, and other things all the time.” I’m not sure that her story really is that much different—tragedy comes unexpectedly and objectively to many people in this world. However, one clear way in that SJS is different from many diseases is that it is extremely rare and very poorly understood. It also attacks quickly, without warning, and is devastating to the body. I am proud of Christine for rising to the challenge to make her mark on the world and in the SJS community by raising awareness and doing what she can to further scientific understanding of SJS. And of course, I love her to pieces and am thankful every day that she survived.