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.
