the journey of a butterfly

khaliah's journey with sjs/ten


The Butterfly Blog

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I hope you enjoy reading about my journey and learn more information about SJS/TEN.  


SJS will NOT win. It just can't.

By Khaliah, Jun 12 2014 01:17AM

I was on cloud 93798273986 this past Saturday at my race. And I started this week off in a positive state of mind. But then…Tuesday happened. Most of the time, I try to stay busy and occupy my mind so that I am not tempted to sit around and feel sorry for myself but yesterday, I found myself staring a little too long in the mirror. When I first got home form the hospital, I refused to look in mirrors. Because every time I did, I would sob profusely. I’ve gotten better about it as I have healed over the last few months but yesterday I just found myself staring…with the same look that I get from strangers. The look of confusion, the look of shock, the what the hell happened to you look…I get it now.

As I looked at the person in the mirror, I realized that I STILL don’t recognize who that person is. It sounds like me (kinda) and it sorta, kinda, MAYBE looks like me…but it doesn’t feel like me!

I literally feel like I woke up in another persons body.

I am half the size I have been for half my life (which is GREAT!) which is enough of a transformation for any one….but shortly after my weight loss, I also lost everything that I feel like made me beautiful. And before everyone jumps on me about inner beauty, let’s get real about something….

The world…doesn’t give a damn about inner beauty…at all. The world teaches us that our appearance, is everything. It’s your brand, it’s your logo, it’s your money maker! It’s your first impression, regardless of what you say, regardless of how smart you are, your appearance is the first thing people notice about you.

It breaks my heart when people stare at me. It tears me up when I sense that people are weirded out by my appearance. Yes….I know I shouldn’t care, but I do care. Anyone in my position would care. It’s easy to act like you don’t care…but you never just don’t care! I’m strong a lot of the time. I ignore A LOT. I focus on things that are good, every day. But some days…I’m just a little too human! And Tuesday, I found myself in the Target dressing room, staring at my splotchy skin and my patchy scalp, wondering if I will ever be myself again…wondering if my skin will ever look normal again and if my hair will ever grow back completely. I have PRAYED for contentment and that the Lord will minimize my desire for these things…just in case they aren’t normal again, maybe I won’t be so disappointed if He changes my heart to not prioritize those things so much? I guess that’s how it works…

And then, the dentist happened. I hate the dentist under normal circumstances, but this time was especially unsettling. I was informed of the multiple problems in my mouth as a result of SJS. Once AGAIN, SJS is taking something else away from me! You would think that my skin, my hair, my nails, my job, my house, my sanity, my faith in medicine was enough….OH NO…now my teeth have been affected. And the one pretty thing I have left, is now damaged too.



My whole life, I have heard what a beautiful smile I have. And now I’m just worried that I won’t want to smile if I have missing teeth. It’s the one thing I have left through all I have endured. And YES, I realize that I can wear veneers and fake hair and fake eyelashes and I can draw my eye brows on, and I can wear make up to cover my cheetah print skin…but what about me? The real me? The me that still sees the world through the exact same eyes? That’s part of the reason why I haven’t started wearing fake everything! What message am I sending? By making myself “more attractive for society” what am I telling myself? That I’m not good enough just how I am today….maybe?

I have no clue. I’ve never done this before, and there is not a manual on how to handle all the crap SJS hands you.

I’m drowning….I need peace of mind. I need relief. I need JESUS. I need Him to rescue me from what feels like impending doom. I need Him to heal my broken heart. To help me turn this horrible ordeal into something that glorifies Him. That takes the focus off of me and puts it on HIM. I want so badly to be in His presence and free from this world. I feel like I am in a constant battle between my flesh and my faith. My flesh tells me to give in to depression, and be angry and miserable because I have the right to be. But my faith says, LOOK TO HIM. Trust in His plan for your life and don’t abandon your faith just because none of this makes sense right now. Pray. Trust Him. Find the blessing. And LIVE.

If I choose to stop living, then SJS wins. And we ALL KNOW that is NOT happening!

Not today. Not tomorrow. So it’s time to put on the armor of God and fight. HARD.

Feb 3 2015 10:33PM by Amandah Johnson

I 100% understand what you went through and are going through I have SJS and DRESS. Your attitude will take you so far. It's nice to know that someone else understands. Stay strong!

Mar 25 2015 07:47AM by Emily

Sorry my comments are so late on your posts, but I just discovered your blog. I can't imagine what it's like to have SJS. But I do know what it's like to suffer one loss after another. At some point it just becomes ridiculous- almost comical. It takes too much effort to try and control things. I finally reached a point where I just threw my hands up and acknowledged that I might just have to put some pink rollers in my hair, pop open a bag of chips, and watch Paternity Court all day. Because no matter how hard I tried, nothing was working out for me. What was the point of trying to be so successful in life if life just kept getting in the way? And just as I had given up control and emotionally found peace with my situation, I got hired doing a job I love. Go figure. Maybe that was one of the lessons I needed to learn, you know? Anyway, I hope everything worked out well with your pearly whites, and I wish my faith were as strong as yours.

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