It was still dark outside when Crankenstein and I set off this morning for an unfamiliar hospital complex. I’d intended to go by myself but she wanted to come along, worried that memories of a tortured childhood history with NG tubes might resurface as a catheter was snaked down my throat. It was unnecessary, I told her — there wasn’t going to be a moment where I cried or shook or hyperventilated, triggered by echoes of the past — but she was undeterred. If our roles had been reversed, I would’ve done the same.
Crankenstein is big on emotions and sensitivity and almost seems disappointed at times when I don’t break down in tears over this or that. That’s been a recurring theme in my closest relationships: my family stared at me like I had two heads when I didn’t hysterically weep after our Golden Retriever died; Ex expected me to cry in her arms for more than just a couple minutes after the deaths of Papa and my childhood cat; and Crankenstein was puzzled by a relative lack of tears after my maternal grandma died.* That I was suddenly crying so often from 2021 through 2023 was a big tip-off that something was wrong leading up to the Parkinson’s diagnosis.
During that era, I tried to do most of my sniffling (or sobbing) in private. The first few times Crankenstein noticed, I got the impression she was strangely excited, eager to leap into action and bond over feelings, feelings, feelings. “Oh, you’re human after all!” she seemed to want to tenderly — and perhaps relievedly — exclaim. As the novelty wore off, she began to appear disconcerted or bewildered by these uncharacteristic displays of emotion, which was how I felt once the levodopa and a very low dose of Zoloft shut off the waterworks and I was no longer enveloped in sadness.
Getting back to this morning, mine was the first esophageal manometry of the day. The nurse summoned me to a room the size of a supply closet and the test itself was everything I’d dreaded and more. It’s something that patients often cancel or neglect to schedule, and Crankenstein was surprised I hadn’t joined their ranks since there’s a chance it won’t yield any useful information. But doctors can’t fix my choking problem without a clearer understanding of what’s causing it.
If you’re curious about how the test works, it’s pretty simple. You come in on an empty stomach and they use spray to numb your nose and then hand you a cup of water. Once they’ve fed the catheter through your nostril, you’re asked to take a couple small sips of water to help carry the tube down your throat. The nurse who conducted my exam didn’t offer throat-numbing spray, which could possibly interfere with swallowing. Once the tube is in place you lay on your side and must complete 10 swallows, each with a small amount of water.
Despite the minimal volume, I couldn’t swallow it all at once. When I attempted repeated swallows, which were permitted for the barium study, the nurse said “Try not to do that.” They give you tissues and put a towel under your head, so any water you can’t get down is mopped up. You have to wait around 20 seconds between swallows as all the measurements are recorded. What they’re studying is the movement and pressure of your esophageal muscles. We know from the previous study that something’s malfunctioning with mine and this could help pinpoint it.
Once the side portion of the test is over, you slowly move to a sitting position and do another five swallows. Then I was handed a cup with a straw and told to drink as much as possible. After that, the tube was removed and the nurse said her boss, a GI who specializes in motility disorders, will interpret the results this weekend and my GI, an IBD researcher, should get the report next week. I don’t think the test would’ve been that bad if not for my personal history with nose tubes and the fact that I inherited my dad’s notoriously strong gag reflex.
Crankenstein was alone in a dimly lit waiting room when I emerged — the building’s halls were still mostly empty as employees straggled in — and inspected my face for emotional clues since she knew I’d say “fine” if asked how it went. She’d only blocked her first two appointments of the day and needed to get ready for work, and I had to prepare for LSVT. We walked to the elevator and I almost repeated “I’m fine!” as she again stared at me intently, until I remembered ‘Niles,’ who is loath to touch elevator buttons, was with us. Her second stare was trying to will me to press it.
“And to think you wanted to be here because of my neuroses,” I almost joked, before deciding not to tease someone who’d gotten up so early out of concern for me. Instead, I chivalrously waited to make fun of her here, knowing she’ll be caught up on her sleep by the time she reads this on Saturday morning.
* Grieving is complicated. I’ll probably write more about this one day, but I cried more for Papa than what my ex saw, preferring to do so privately, in the shower — the one place where she (usually) wasn’t with me — because my grief wasn’t shared or understood. She harbored genuine anger toward him for how he’d once treated my grandma, and for some of the difficulties he had in accepting my sexuality, but he was so much more to me than his weaknesses and mistakes. That’s how I view everyone I’ve loved unreservedly, including Ex herself. But in the case of my grandparents’ deaths and the deaths of those pets, I felt it would’ve been selfish to focus on what I lost instead of what they gained. None of them had any shot at recovery and all deserved freedom from their suffering.