**I say the F word a few times in this post, and thought it a lot more than that while I was writing it. If you’re turned off by language like that, I’ll see you another day.**
It was a long night of shaking hands and hyperventilating. My husband offered to bring me my asthma inhaler, but inhalers don’t fix panic attacks. When my husband’s alarm went off at 6am, and I pulled the covers over my head and curled up into a tight little ball – nauseous and resentful before the day had even begun.
“I don’t want to go,” I whispered to my pillow. When my pillow didn’t reply, I schlumped my way out of bed and bristled my way into the kitchen. “I hate doctors. I hate hospitals. I don’t want to go,” I told my mug of tea. It silently steeped, and didn’t answer me.
Ella rolled into the kitchen, her long face a mirror of my own. “We don’t have to go,” she sighed. “There’s still time to cancel.”
I shook my head and yawned, “quarterly appointment…rheumatologist…blah, blah, blah.”
The corner of her mouth twitched as she informed me, “I don’t think you’re actually supposed to say ‘blah, blah, blah.’ It’s an expression not real speech.”
“You’re too smart for eleven,” was my only reply. My shaking hands and racing heart betrayed how shot my nerves have become.
As my husband kissed me good-bye he apologized for not being able to join us for the marathon-length specialist visit. I told him it would be fine, reassuring myself as much as him. I hate this so much. I hate feeling weak. I hate feeling scared. I hate that this past year has stolen my trust in doctors and taught me to fear.
During the hour-long drive, Ella sang her heart out to classic Disney songs and I practiced the relaxation breathing techniques I learned from my therapist. (That was the bonus gift that came with the panic attacks – my very own therapist. Yay!)
“They never listen. They just don’t. I’m wrong and they’re right. Conversion disorder. I fucking hate the words Conversion Disorder. The physical evidence was right in front of them and they refused to see it. They missed the whole diagnosis. She’s a fucking paraplegic because no one would listen when we asked for help. Stupid doctors. Who diagnosed her? I did, that’s who. I don’t know why we even need them.” ranted the angry mom-voice in my head.“I don’t want to go,” I whispered to the car. It said nothing, just carried us forward.
Tears flooded my eyes as we stepped through the sliding doors and into the rheumatology clinic at the hospital. They always do now. A year ago, these appointments were just another thing to check off of the to-do list. Now they’re a foray into hostile territory. Bad things happen in hospitals. They’ve happened to our family. Step through those doors and you lose your control. You learn very quickly that the letters M and D are infinitely more powerful than the letters M-O-M.
My heart pounded, echoing in my ears, and I mentally chanted “It’s just PTSD. It’s a trick of your mind. It’s PTSD. There’s not really any danger today. It’s PTSD.” I swallowed the lump in my throat and signed the paperwork checking her in. I slowly let out the breath I didn’t realize I’d been holding. “It’s PTSD,” I reminded myself. “There’s no danger here.”
A routine height and weight check, and then into the exam room. The crinkle of the exam room table stands the hair on my neck on end. Ella listened to the music on my phone, as oblivious to my mental distress as she has been to most of what went on behind the scenes in our search for a diagnosis. Someday I will tell her about it all, but not today. She’s only 11 and it would scare her. It has scared the fuck out of me.
The medical student came in first, as she always does, honing the clinical skills she will need in her own practice. “I’ve looked over her chart,” she informed me, “and read her medical history.” She turned to Ella and asked her to stand up out of her wheelchair and walk as many steps as she can.
Liar. She knows nothing.
“She can’t walk.” I tell her.
He eyebrow lifts. “Nothing? Not even to stand a little? Because of the arthritis in her knees? What if she really wants to? Can she do it if she holds my hand and really tries?”
“It’s not the arthritis,” I tell her simply. “She had a spinal cord injury. L5-S1. It’s not a matter of will. She just can’t.”
And in that moment, I can tell by her face that no one has updated the chart. It still says Conversion on the line for diagnosis. Nobody has put in the test results and new diagnosis from last October. I can see it as plainly as I can see that her eyes are brown. We’re still suspect, and this still isn’t over.
I fucking hate this.