Stevens-Johnson Syndrome: Beginning to Process

(and there is a long way to go)

I have so much to say and I want to say it. There is just not enough information about this terrible disease. I need to share our story.

Indulgent is what I feel. My Brandi Carlisle Pandora Station is on. The song, “You belong to me,” plays in the background. I hear the words:

Oh I’ll be so alone without you
Maybe you’ll be lonesome too

Fly the ocean
In a silver plane
See the jungle
When it’s wet with rain
Just remember till
You’re home again
You belong to me.

Years ago my friend Katie died way to young of Leukemia. She was much younger than me. I often visited her in the hospital and became close to her and her family. When Kyle was in the hospital I felt Katie everywhere, especially in the hospital playroom. Right now I am in the middle of responding to an email from Katie’s mom.

As I try to respond, my throat tightens and tears fill my eyes. I feel indulgent and self-consumed as the sweet, sappy music plays. I feel weepy and breathless as my fingers click away.

I have to stop and write before this moment leaves.

. . . It was one of the many long hospital days. Gratefully, as they often did, one Kyle’s very best friends and his mother,  came to spend time with us. His best friend was still recovering from a brain injury. Kyle’s friend empathetically had this uncanny ability to comfort Kyle in ways I simply could not. My mom was at the hospital that day and we all made our way to the hospital playroom. Kyle was walking with his mobile IV station, tubes and IVs attached. As I talked to my friend, Kyle and his friend built model airplanes. As we sat, I looked around at all the sick children, some dying and some about to go home. I was completely deer-in-headlights overwhelmed. I watched Kyle and his friend, Kyle’s face so swollen from steroids, wearing a tan baseball cap. Somehow when he wore this one tan baseball cap, given to him by another friend, Kyle’s face seemed to look even more swollen, his lips more bloody and sore, his eyes more profoundly injured. He looked to me like a Cancer patient. My thoughts went right to Katie and coincidentally so did my mom’s. I remember the many times visiting Katie when she came to Minnesota for Cancer Treatment, her face swollen from steroids, her sweet and hopeful enthusiasm. I told my friend about Katie and that she had died of cancer. I choked up and forced my feelings down. I was completely caught off guard with emotion. Maybe it was because my heart was wide open. Maybe it was because there really is something beyond this life. I am not sure. What I do know is what I felt next was a gift. I felt Katie, as if she were alive and sitting right next to me, hanging out and helping me let my guard down, something that has not been easy to do.

And then today, I felt Katie as I wrote her mom. Sweet Katie is one of the many unexpected gifts in this whole crazy mess. Each and every time I have thought about her since Kyle became ill, I am completely overcome. I don’t think anyone has any idea until now that this happens. Somehow Katie has been one of the only things that can propel me passed my stoic and frightened exterior. My heart opens wide and somehow I am able to allow those raw feelings and memories of me helplessly watching Kyle suffer surface.

For months I have been scared, confused and completely out of my depth. The indicator of how serious this has all been is that I am holding my usually unguarded feelings tight and close.

Today, and thanks for me finally taking the time to respond to my email, my heart is open once again. For how long, I do not know. I will take the moment and let myself remember. And now with some distance I am beginning to look back and see how absolutely horrifying this experience was. The moments are opening up and revealing themselves to me and I am grateful. These moments have patiently waited to show themselves and I am sure they will continue to do so.

In the safety and silence of my home, I can now see Kyle attached to his mobile IV standing in the hospital hallway, wearing sunglasses and screaming, I mean screaming at the top of his lungs,


In a state of shock I stood there, in a random hospital hallway, burned out, watching my boy, helpless, his face, his eyes, falling off from the inside, feeding tube inserted down his nose, IV attached in his arm and irritating the hell out of him. And then the gentle Med Tech touching Kyle’s arm, softly pleading,

“Kyle, Kyle you need to be quiet.” With Kyle responding even louder than before, “I CAN’T! I CAN’T! I DO NOT UNDERSTAND! HELP! HELP! HELP! HELP! MOMMMMMMM, HELP ME!”
She gently continued, “Kyle, you have to. You are scaring the other patients.”

We made our way across the floor to the hospital patio. Kyle screamed, spit and continued to flip out. We grabbed a box of Kleenex from the Coffee Cart Lady. Thank goodness for those boxes of Kleenexes. They were everywhere. He tried spitting on the floor. He spit outside. He did not stop spitting. He was mad and he spit. The blood and tissue he spit were so gross. They looked akin to Zombie-Flesh. At that moment I could not see how absolutely bad it was. I could not anticipate the months he would suffer; the months he would continue to lose massive amounts off skin tissue. I could not. What I could see. What I could see in that moment was that Kyle was out of his room. It had been almost two weeks since he had been out of his room. That walk, as brief and crazy as it was, was the first time Kyle had moved, had left his bed, the complete darkness and silence of his room.

And in that moment, that is what I could see.

22 thoughts on “Stevens-Johnson Syndrome: Beginning to Process

  1. That was beautifully-painful to read. My tears are mixing with yours as I sit at my keyboard. I can faintly hear the song Haleluieh (sp) billowing down the hall.

  2. Thank you Leanne. Thank you, Brenda! It means a lot that someone out there is interested in reading!

  3. Man, it’s horrible to see your kid in pain. My daughter had something that kept us in a Children’s hospital for a month. She is recovered now, and I can tell you – THE BAD MEMORIES FADE quite a bit. You will likely be closer to Kyle than ever, and you’ll learn that we are all much stronger than we knew! My thoughts are with you all.

  4. We are reading and feeling and hoping that the profound experience has not scarred you or Kyle or Dave or Eli for life, but in turn have given you even more reason to love and cherish your family, as I know you do, and to use the opportunity to educate and help those that may unfortunately have to deal with this horrible reprehensible disease without any knowledge as you had to. It is theraputic for you to release what you have been carrying and put it in prospective. As I write this I am listening to Janis Joplin singing Bobby Mcgee and the poignant lyrics make me think of a never ending love and the pain that it can sometimes bring, but that pain never diminishes that love and you show that in your writings. Anther great job Beth!

  5. I am a long-time reader, Beth, but I’m so amazed yet again with your wonderful writing. You kept mentioning that your heart was wide open and that is one powerful image. I’d imagine that going through this with your child has caused your heart to feel many things–fear, pain, sorrow, helplessness. You are on my mind and prayers to you and your sweet boy.

  6. My thought are with you and your family. I am so sorry to hear about this. I have always loved your writing, even now, when it is such a sad story. All the best for your son, may the healing go well and fast.

  7. Your writing is so powerful, Beth. So are you. Kyle and you all are in our thoughts and in our hearts.

  8. Beth, I’m so glad to see that Kyle has been improving. Its a long road but you both will get through it.

    Were the doctors able to do anything the protect his eyes? You mentioned that he was wearing sunglasses at the hospital so I’m hoping that there was not too much eye involvement.

    I will continue to send lots of prayers your way.

  9. Oh Beth, how terrifying and heartbreaking… I don’t know how to say the right thing… all I can think of is: I’m reading, I’m listening to your story…

  10. Breaks my heart every time. It is almost unbearable to read about Kyle suffering so much. I am so proud of you as a mother. You took such awesome care of both your sons in such a crazy storm of life. I am glad you are taking care of you too.

  11. Your story touched me so deep I had to let you know. I have deep respect for your son who is a warrior and forever an unbreakable soul. Please tell him I said this. Also for you. I cannot imagine your fight.

  12. I know you wrote this years ago but I just happened to stumble upon it on google and just had to read. I had stevens-johnson syndrome when I was six years old. I just wanted to tell you that the bad memories do not stick! I often ask my mother stories and she tells me about the screaming and pain that I had suffered but for some reason I do not remember it (I am now 20). There are a few painful things I remember, but I mainly remember good things like the playroom. I guess my brain somehow blocked them out or erased them. I was hoping this would somehow make you feel better in hopes that Kyle does not remember painful things as well. I am having trouble finding anything past part two so I am not sure how bad things got for you guys, but I do see that he survived. I’m sorry he had to suffer such an illness!

    I also want to apologize in advance if I stir your emotions. I am aware that it has been a couple of years since you have written this and I’m sure this is still a tender subject. (I know, I can relate). I just couldn’t help myself, I have NEVER met anyone who has even heard of the illness. Thank you so much for sharing the story so that people can become more aware. I was first diagnosed with chicken pox, sent home, and transferred to two other hospitals before they had diagnosed me with SJS.

  13. Hi my name is Lexi I’m 14 and two years ago i was in primarys with sjs. I hated it, for the whole two weeks I was there I just wanted to crawl up and bawl but I never did because I knew I had to stay strong through it all… later that year i lost my best friend to leukemia. And that whole year was pretty crappy but now it’s better… and it will always get better.

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