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.