Stevens Johnson Syndrome Family Recovery: Tell Me How to Cry. Please.

Me & the Boys

It appears that I have lost the ability to cry. No. Really I have. Once in a while I can muster up some mist around my eyes. On occasion I can even convince a few tears to roll (albeit uncomfortably) down my face. And once in a while a kind word, or an unexpected look pushes all the tears out. Of course these unexpected tear-moments make me furious. Then, as quickly as the tears start, I demand they stop.

Earlier, as I sat in my therapist’s office (yes I go to therapy, don’t you), well, as I sat in her office with purpose I declared,

“Today I am going to cry! I need to cry! I do not know how I am going to cry, but I will. I will think of dead puppies or cute little babies, babies lost at Disneyland, that is. I will imagine sad things until one of these heartbreaking images finally dislodges my tears.  I know they will. I know they will, because I really need to weep.”

We laughed. I urged her to shout at me, humiliate me, and demand that I cry. Saying something like this, I suggested:

“Cry, Beth! Cry Now!”

We laughed. And then I came close.

Here is how it happened. I said something like this,

“I think this next story would make anyone cry.”

Just thinking about Kyle and his crazy bloodied face made my throat swell, and my heart scream. Then I talked about all the people I pissed off while Kyle was in the hospital, people who had their own version of helping and being involved. I am usually week to these sorts of offers. But because this was about Kyle, not me, I found some strength to give him what he needed, not what the helpers thought he (and really our family) should have.

“I don’t understand why they didn’t get it.” I exclaimed and continued,  “I had nothing to give. Why couldn’t anyone see that. I was doing my best to keep Kyle alive. I was doing my best to make sure he didn’t go blind. I shut the world out so I could stay afloat. Why don”t people get that?”

I still do not know why people do not get that. I was not letting anyone in. Dudes, I cannot even cry. Why would you think I could accept your help?

As often is the case while in therapy, or really, while talking, words were coming out of my mouths and I was thinking about something completely different. I was thinking about about the second time we admitted Kyle to Primary Children’s Hospital. I was talking about crying and what I was seeing is Kyle. I saw him. I see him sitting in that 3rd Floor hospital room, pleading, pleading with all of us. In my imaginings I see him in worn hospital clothes. In truth, he was wearing his own pajamas. I see him screaming.  In reality, he was screaming. Instead of tears, I felt anxious. I felt sick and I thought about how we had to change Kyle’s his room. It is strange the things that happen in the hospital. For us, we felt claustrophobic, which I am sure is not completely uncommon. Consequently, the first room they assigned us to was way too small. Kyle and I were breathless and overwhelmed. I am certain there is a good argument about Feng Shui somewhere in there. Thankfully, the nurses were nice. They knew how devastated Kyle was to be back and moved us to a different room. Thank God they did.
We were no more than five minutes into our new room when Kyle stood in the center. Emphatic, he began screaming:

“I DO NOT WANT TO BE HERE! PLEASE! PLEASE GET ME OUT OF HERE!”

Yes. It was too much. The vision of Kyle scabby-faced and powerless was enough to send me back to the moment I was in now — back in my therapist’s office. Safely away from that moment, I took a breath and watched as Kyle walked away from the center of his new room over to the windowsill. He climbed up onto the windowsill, turning his body away whimpered,

 “PLEASE MOM! DAD! PLEASE TAKE ME HOME! PLEASE!”

Kyle had been sick for so long. I was so sad for my boy. I was mad. I was exhausted.  Like a runaway train, helplessly, Dave and I stood there watching. We watched as our boy completely unraveled.  Thank God for angels. Because as we stood all dear-in-headlights like, our former neighbor happened to walk. Lo and behold she is in charge of Patient Relations.

“PLEASE.” I asked her. “I don’t know what to do. He is losing his mind. He feels so trapped and helpless. He is mad. He is not getting better. We had to bring him back for a new treatment. He is depressed. He does not believe it will work. He does not trust us.”

I do not know why she was there, but she was. It was around 7:00PM. We delayed, I mean fought, bringing Kyle back to the hospital. We did not want to put Kyle through any more unnecessary treatments.

“Can you come talk to him?” I asked her.

“Sure.” She came in the room and tried.

“Please. Please let me go home! Why? Why do I have to be here?” Kyle pleaded in choked and heaving sobs.

I knew it. I knew how he was feeling: Powerless. Your life, your every breath is in someone else’s hands. It is black, breathless and sad. Kyle was suffocating and so were we.

“Kyle, I know it is not fun, but you have to be here. You have to be here to get better. Your doctor needs you here. She needs to make sure you are ok.” She said.

Kyle screamed and cried out, “WHY DIDN’T YOU MAKE ME BETTER THE FIRST TIME? I WANT TO GO HOME! WHY? WHY DO I HAVE TO BE HERE?”

She continued, “Kyle, they want make you better.”

Now quietly pleaded, he said, “Please — please let me go home.”

“Beth, Beth, what do you want me to do? I do not know what to do.” She said.

“He is scared. He is mad and he does not understand. He feels cheated. He does not trust that he will be ok. He is not better and he is so tired of being sick.”

I walked out of Kyle’s new hospital room to catch my breath. That is what I did. She followed. My friend tracked down a hospital social worker who literally talked Kyle off of the window sill.

I felt my voice crack. I feel it crack now. Tears want to come and then I hold my breath. Now it is a habit.

My therapist talked about how locked down I am. I am.

“It is understandable, Beth. You could not let your guard down. You had to be there for Kyle, for Eli and for your family. You had to stay strong.”

“And now it is cumulative.” I said. “I think I stopped crying and unplugged after my miscarriage(s) and then we moved. Every time there is a new heartbreak, my tears grow smaller and smaller. I don’t know how to heal my broken heart. I do not know how so I take deep breath and move forward. And now, I do not know how to cry.”

So back in that room and ever so ironically, I thought about my college boyfriend. When we finally broke up, I cried for months. It was ridiculous how much I could cry.  Ask anyone who knew me then, I I could not stop. I am a little embarrassed about that time and today, I also long for that time. I long for those moments when I could cry so deeply and so freely.

As far as my tears go, I always come close.

Then I snap out of it. See, what they don’t tell you is that when you come home from the hospital like actually might get worse. It is lonely. Visitors stop coming (yes, probably because I scared them away -wink, wink). Instead, I think I need to be strong. And right now as I type this post Kyle is sick again. He is sick a lot. His immune system is so weak. I start to believe everything is ok and then he is sick. He says,

“I just want to sit here and be with you.”

What do I do with that? When will he be safe? Forget crying. When can I breathe?

This is Kyle after he was home from the hospital, the time he was supposedly better.

This is Kyle after he was home from the hospital, the time he was supposedly better.

 

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