I keep wondering if this is what we’ll someday call a breakdown.
Someday maybe we will tell this story by saying that Lei kept having really hard years at school, that we kept trying new things, new interventions, new schools, but we couldn’t seem to find the right fit. And then we’ll talk about how we were so hopeful that attending her dad’s school would give her the security, academic challenges and sense of belonging she lacked. And how, just after she started there, she suffered a breakdown.
Over the last three weeks, we have tried to figure out what on earth is preventing Lei from hearing with her cochlear implants. Is it the external equipment? No. Is it the internal implants? Apparently not. Integrity testing says they are working just fine. Is it her auditory nerve? No, that is responding exactly as it should. Every possible cause has been ruled out.
Except she still couldn’t hear.
Now the ear surgeon we respect greatly has weighed in. She says that Lei’s inability to hear is psychological. Along with her ears, her CIs and her brain, this problem is “in her head.”
You may recall that over the summer Lei’s dad and I agonized about where or if we should send her to school. We had decided to homeschool, but then in August I had a strong gut feeling that she should at least try her dad’s school.
Things were going well at first, but the days were extremely long because she arrived before anyone else in the morning and left with her dad after JROTC workouts and anything else he had to take care of before coming home. It was intense and she was exhausted. Then the first weekend after she started, she had parades both days. That was the context for her implants mysteriously both failing at the same time.
The ear surgeon said the odds are basically zero that both implants would fail at the same time without evidence to suggest a cause. They ruled out an autoimmune problem that might be causing the failure. She couldn’t find any other possible explanation, so she said it must be psychogenic.
The American Heritage Medical Dictionary defines psychogenic or functional deafness as “Hearing loss or impairment caused by a mental or emotional disorder or trauma and having no evidence of an organic cause.”
We know Lei has experienced a recent trauma. We know she has yet to fully process what happened when she was in fifth grade at the school (un)affectionately known as the Hippy Dippy Palace. So yes, that this could have been caused by the after-effects of trauma is definitely plausible.
And in the last few days, as I’ve talked with Lei about it, she has confirmed that she is feeling intense anxiety about going to school. The worst trigger, she says, is the noisy environments like the lunch room and gymnasium. She said she feels like she has bitten off more noise than her brain can “chew,” and it makes her shut down and not want to hear anything at all.
Lei dearly wants to be homeschooled, and believe me when I say that I feel the urge to rush in and rescue her from this. But as her dad and I have consulted together and with her, I’ve begun to reflect that this is a really important turning point for Lei. Right now she has a chance to stay in school with a lot of support, in an environment where many of the kids and all of the teachers and staff are firmly on her side to begin with. Most of the adults at the school have known Lei since she was two. They claim her as part of their community in a way that is unlikely to happen at any other school. My husband’s ROTC cadets look up to him like a father. That makes Lei family to them, and in a predominantly Mexican-American school, that means they will stick by her and defend her if she needs it.
Where else will she find this kind of school atmosphere? I think if we let her quit now, she will fully embrace her sense of fragility. But if she can overcome, it will give her the biggest boost of her young life.
One of the tools I’m using to get through this – because it’s easy for me to get swamped by my own worries, grief and fear – is the online game, SuperBetter. If you haven’t heard of this game, I highly recommend you go check it out. Life is full of challenges, right? SuperBetter lets you treat them the way you would play any online game. In order to reach your big goal – or “epic win” – you need to find allies, go on quests, activate power-ups and avoid bad guys.
So my goal is to reduce my own stress in order to support Lei to heal and hear again. I’ve always struggled with self-care, but SuperBetter makes it fun and much easier.
What’s more, this is a great way to think about Lei’s challenges. She and I are working on identifying her allies, what power-ups will reduce anxiety, what quests are going to help her succeed socially and what are the triggers (bad guys) she needs to avoid.
This is definitely another in along line of crises. But maybe in years to come we won’t call it a breakdown. Maybe we will someday look back at this and call it Lei’s Epic Middle School Adventure.