I stood at the bathroom sink with a red plastic cup full of water pressed up against my right ear. I tilted my head left, and started testing words out loud to see what I could hear. I tried to enunciate as clearly as I could without waking up the whole house, “Bell, bell, bell. Sell, sell, sell. Tell, tell, tell. Red, red, red. Bed, bed, bed. Said, said, said.” Frowning, I knew I heard each word too clearly. I tilted my head back to the right, removed the cup and dried my ear. I filled a second cup of water, this one blue, and dribbling water down my neck tried to surround both ears at once. My shirt soaked so quickly I was amazed I hadn’t realized it would. I stripped down to my underwear and filled the tub halfway. I lay down all the way in it, head submerged, and started testing words again. Knowing what words I should have been hearing made it even more frustrating when I couldn’t make them out. This murmur was all my son could hear. This might have been all he had ever heard. A marshmallow swallowing the edges of every word.
Earlier that day I had brought my three-year-old son to the doctor. A white, sticky residue had been seeping from his eyes all day, a residue I was afraid to touch and feared was something contagious and evil. My favorite doctor was on call, the one who mumbles and hems and haws and is hard to understand, but who seems to look the most carefully when something is wrong.
He looked into my child’s eyes and he squinted his. After a few moments he murmured, “That’s strange, very odd. He doesn’t have an eye infection. In fact, let me see…” I watched as the doctor asked my son if he could look in his throat and gently he craned around to both ears. “Hmmmm, has he had any sort of history with ear infections? Did he have a fever today?”
I answered the second question first, “Well, no, no fever. We do see an ENT for, well, he has speech delays, but he hasn’t…I mean he doesn’t seem to get fevers often.”
He considered what I’ve told him. He said, “I am amazed that he hasn’t indicated to you that he is hurting. His ears are filled with fluid, so much so that it doesn’t have anywhere to go, you see. The only path for it to escape now is through his eyes, you know, everything is sort of connected. The pressure must be terrifically painful. He had no fever? He didn’t complain?”
“No.” I didn’t explain how my son doesn’t ever say much at all. Nor did I explain the year of speech therapy that brought him from one word to maybe a hundred or the way he compensates with gestures and grunts and tantrums. No, my son didn’t complain in any way where I would have been able to understand exactly what he meant. But, I scanned my youngest every day trying to read his face, his gestures, his clenched fists for clues as to what was wrong. He never touched his ears with a grimace.
“Does he, uh, react to other pain?”
I paused for a moment to consider this. “Yes, he does,” I replied, thinking of skinned knees and elbows.
“Hmmm. Odd.” Our doctor mumbled as he worked out some problem. Sometimes the nurse recording our information translates for this doctor maybe when we seemed confused, repeating the information he was trying to convey more simply and clearly. I looked to her, puzzled. She continued typing, so I waited patiently, assuming that he was just thinking out loud and hadn’t said anything that I needed to hear, at least not yet. I kept trying to catch pieces of information that might have given me a clue as to where his thinking had taken him, but was maddeningly unable to.
Finally our doctor spoke up, just a touch louder and clearer than he had spoken to himself. “I would suspect, then, that he thinks this is normal, this is how life feels and sounds.”
This time I heard the words precisely but didn’t catch what they really meant. So I waited for more explanation.
“Well, with, you know, the way he is reacting to pain and pressure now, and the extent that this fluid has built up, I am sure that this has happened before. Maybe enough that he doesn’t know anything else. He is capable of feeling physical pain, you know some aren’t. He feels tremendous pain in his ears, but to him it is normal, it is what life is. Pain is normal. And, to him, everything sounds as it would if he were under water, and might have most of his life.”
That night, I performed my experiment. I wanted to know what it felt like to hear only the middles of words, and to be unable to tell if a rhyming word was at all distinguishable from its pair. I lifted my head from the bathtub and felt relief as the water poured out and I could hear again. I let myself cry, quietly. Soaked cotton clinging to my torso, I didn’t want to wake up anyone and be asked to explain to my husband or inquisitive six-year-old what I was doing. My three-year-old would probably sleep through. Apparently, there wasn’t much that could reach his ears when he was awake, much less when he was asleep.
I got out of the bathtub and put a towel under myself as I took off wet clothing and wrung it out over the drain. The next deep breath caught ragged under my chest as I began to cry again. A vacuum opened up under my ribs as I thought about how much pain he had felt, and how he had felt that must be normal.
For him, pain was just part of the contract of living in a human body. I can imagine my little guy looking around and thinking to himself, “If other people can play and be happy this way, I am sure I can manage it, too,” never dreaming that they didn’t feel the way he felt. I knew what it was like to accept pain as a given, as I had been living with fibromyalgia since he was a baby. But, I at least knew that life had been different once, that it could be different. I cried harder at all he had worked against. The intense frustration he must have felt trying to speak words he never heard correctly, the pressure to behave calmly when his head ached constantly. What did he think of himself when he couldn’t do these things? When it seemed to come easily to other people? When he had to try so hard to listen and understand and respond, not knowing the deck was stacked against him?
A month later we took him in for surgery to have tubes placed in his ears that would help drain fluid each time it built up. His ENT came to find us just fifteen minutes after the surgery began. “He’s done! It went really well,” she said. “His ears were so packed that it was a little difficult to clear it out, but I am even more certain now that he’s going to feel a million times better. He’ll be up within ten minutes.”
My son woke up from the anesthesia cranky and groggy. At first when we tried to hold him and soothe him he didn’t seem to understand who we were, but, as he came to, he looked at us with alarm. He touched his ears.
Then, he tried to talk to us. For perhaps the first time ever, he heard his voice clearly, the way we heard it. He startled himself quiet. His eyes widened as he titled his head to the right, picking up the whiz of cars passing us on the highway. And to the left he found one of the speakers in our car playing music softly.
He spent hours and hours still and silent, suddenly above water, suddenly pain-free, just listening. Just listening.
And I tried not to let him hear me cry quietly. This time out of joy.
Kristin Wagner writes creative non-fiction, drawing on her experiences as a teacher, a stay-at-home mother to two school-aged boys, a wife, a person struggling with fibromyalgia, a foodie and a self-appointed critic of pop culture. She posts regularly about these topics on her own website kristinwagner.wordpress.com. In addition, her work has appeared online with the advocacy website FibroDaily.com and with LiteraryMama.com.
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