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:


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,


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.


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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19 thoughts on “Stevens Johnson Syndrome Family Recovery: Tell Me How to Cry. Please.

  1. I can totally relate to the hospital feeling like a “safe” place. It is like a little cocoon. When you leave everything is so much bigger. It is easier for the weight of the world to find you on the outside.

  2. This was a tough one to read. Your telling it like it is is difficult. I don’t know how to give comfort to someone who is living with the hell of a sick and suffering child. It seems like nothing else in the world matters.

    Yes, this was hard to read, but thank you for sharing.

  3. As one who recently rediscovered how to cry, as a man who has generally been “large and in charge” I can attest to healing effect of a good cry. Then I dust myself off and stand a little taller.

  4. Wow, Beth. Your story is so powerful. I’m so sorry that your pain continues and that Kyle is getting sick. I cannot imagine what it is like to feel what you must feel. I know on a tiny level what it is like to feel helpless for your child, your baby, at a doctor’s office. You would give your life to protect them yet you are powerless and it is bigger than you.
    I don’t know what to say but I’m glad you have what sounds like a great therapist to help you work through this. And you are stronger than you know to so eloquently share your fears/hopes/weaknesses here with us. Thank you.

  5. I know what you’re going through. I didn’t cry at all during my divorce (2+ years). I was mad, angry (raging, actually) and finding ways to hold it together and cope and be a good mother all at the same time. I had to be strong. I didn’t have the time or the energy to cry.

    Even today it’s still a little hard, I feel the tears well up inside but they never come. Only when I reach a breaking point do they come.

  6. Teresa, thank you! I know you get is. The hospital is like a little germy cocoon. He he he. And the weight of the world finds all of us!

  7. Thank you for reading, Robin (even though it was tough). I am glad you made it through. I don’t think I need comfort as much a I need the space to be me. You are good like that. You let people be themselves. Yay!

  8. Gosh, I adore you. I couldn’t cry for a long while and I thought it was the meds but I’ve cried a lot in the past year. A lot. I keep joking the meds aren’t working (they are, thank god). You tell me anytime and I’ll sob for you. This is how much I love & admire you, Beth. Your candor and willingness to open up to the world is a great blessing to many. I can’t wait until the day we meet face to face and hug. I’ll cry for the both of us then too. 🙂

  9. Kevin, men cry? Kidding. Thank you you for chiming in. Maybe I could get someone to punch me. I am glad you cry. Tears do heal, don’t they?

  10. Thank you Andrea. Kyle is good. I mean, he is so much better. Unfortunately even if his current health issues are no big deal, I still have a bug internal response. I need to seem more months of consistent good health. We would give our lives to protect our children and now how to let go, right?

    I don’t know if there is anything to say. I think it is good I talk to someone and I am determined to get it right. I am glad you understand and support me.

  11. Sunny, I am so glad you said something. I know it is not just me. I know letting my tears stop is a common response to stress and trauma. You are right. I have to be strong and it has not been the time to let my tears in. Thank you for getting it.

    It seems to take a lot for me to break. I am kind of surprised by this fact. You make me feel less alone. Thank you!

  12. Nino, I adore you, your pictures, your beautiful family, your words and your art. Oddly enough I used to cry fairly easily and often. The feelings are still there. The tears are not. They will come.

    I cannot wait for the day we meet face to face. Thank you for supporting me. Thank you for loving me and please cry for both of us! Yay!

  13. Beautiful and poignant post.
    Well…you know me well enough to know I have a theory about this. And you know I’ve seen some tough stuff. I think that when we have these overwhelming events in our lives, they have so many difficult facets to them, and they bring up so many other feelings from our past related to the fear and sadness. Then the present and the past begin to overwhelm your system. They dam up the whole river. Not until you begin to push away the “rocks” one by one can any movement be achieved. And therapy can help you do that. I think that as you carefully face and neutralize some of the hurts, you will be able to cry. It will come in time. I support you all the way, with tears and without.

  14. Isn’t that what they make sad movies for? So you can open up and cry about whatever you need to cry about but be “allowed” to cry because you’re just crying over some movie? I own the entire Everwood series basically for this exact reason. Also, the Notebook. I could go on.

    Hang in there.

  15. Right there with you…I assume that when we go through something that just wrings us out like a washcloth, it takes time for the tears to build back up. Like, years. I can’t cry, unless it hits me unexpectedly, and even then I’m like “LOCK IT UP, WOMAN.” and that’s it.

    I especially hate emotionally manipulative songs or television shows or what have you…I just don’t want to feel tearful over song lyrics or whatever, when I’ve had enough personal crap to make me emotional anyway! (Also, I’m a Grinch.)

  16. Other B, now that the sun is my eyes you know I have a moment to respond. I love your words and yes you know me. It is a process and it will take time to push away the rocks. Thanks for sticking by my side. It is weird I woke up tell myself, “Now this is the day to relax. You have had a couple of days to adjust and today you can let your guard down, a little.” I will let you know how it goes.

    Thank you for your wisdom & support! I am very grateful for you!

  17. Amy, yes, that is what they made sad movies for and touching commercials. Even a poignant sing would do. I know you get it! 🙂

  18. Michelle, I know you are right there with me and I know you get it on more levels than I can shake a stick at. I love your wrung out wash cloth analogy. That is what happens. And it is true. On rare occasions, it does hit me. And it often hits at times where I would be better served if I DIDN’t cry. Like the time I had to talk to the angry scout lady. I did not need to cry then. He he he. Hey and who isn’t a Grinch? I like the Grinch! 🙂

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