This morning, I felt like I was standing in front of a door locked for years, hand on the knob, bracing myself for what might be on the other side.
I woke up feeling heavy. Not just tired… heavy in a way that sits behind your eyes and in your chest and makes even basic motions feel like you’re moving through water. I stood in the bathroom brushing my teeth, caught my reflection, and tears showed up before I even understood why. My throat felt tight, my stomach felt hollow, my heart had that quiet buzzing it gets when I’m trying to act normal while everything inside me is anything but. It wasn’t one clean emotion I could name and manage… it was my body carrying all of it at once.
The hardest part is how badly I wanted to feel prepared. Life has been so loud and nonstop lately, and I’ve been so exhausted that this appointment almost snuck up on me. I had notes… bullet points scribbled down like little life rafts, but walking into something this important with just a handful of notes felt like showing up to court with your whole future in your hands and realizing you left the one piece of evidence on the kitchen counter. The fear wasn’t just “what if they don’t believe me,” it was “what if I forget something crucial,” “what if I can’t explain it right,” “what if my words come out scrambled and the moment passes and I don’t get it back.”
I’m grateful my husband came with me. Not because I can’t advocate for myself, but because carrying your own story for years is exhausting… memorizing it, defending it, summarizing it, shrinking it so it’s palatable. Having someone beside you who can help you remember the pieces and witness it with you feels like having an anchor when your nervous system is already on high alert.
I needed a clean slate today. I didn’t want to walk in handing them my conclusion. I didn’t want to be treated like a file folder instead of a person. I wanted them to see the timeline and the patterns and the changes and actually put the puzzle pieces together from scratch. I wanted them to look at me… not just at my chart, not just at a single test from the past… but me.
Right before I was called back, a longtime friend texted me. The type of friend you don’t get to talk to much, but they can send one random message and it hits you right in the center of your chest. It cracked something open inside me. She told me she’s praying I finally get genuine answers, because she knows there comes a point where you don’t even need the answers to be easy, you just need them to be true. She reminded me how heavy it is to feel unheard and unseen for so long, and she hoped I could find even a small fraction of calm walking into that room. I started sobbing in the waiting room because it felt like God using her… reaching through the chaos and naming exactly what I couldn’t.
If I’m being honest, I walked in afraid this would be another dead end. At first, it felt like it might be. I could feel that old familiar wall creeping in, like I could already hear it: “Your EMG was normal.” I said, “But they didn’t even test my feet or legs. They tested my arm.” There was a pause, small but real, followed by a genuine “oh.” Her posture shifted forward, and the room went just a little quieter, like we’d both realized we weren’t talking about the same picture anymore.
Then, the talking stopped, and the exam started. She watched me walk. She looked at my feet, really looked. Not a glance, not a quick note, but the look that feels like a clinician’s brain actually turning over what it’s seeing. She asked different questions, took her time, and her face changed in a way that felt subtle but unmistakable… like something had clicked into focus. Like she moved from “this is probably nothing” to “wait… there’s something here.”
I wanted a yes or no. I wanted a simple sentence I could carry out of that building and hold on to when the doubt hits later. I wanted her to say plainly whether it even looks remotely like what we’ve been leaning toward. But she wouldn’t give a direct answer. She stayed careful. Vague. Noncommittal. Part of me hated that… because I’m so tired of living in the gray, tired of being the one holding the “maybe,” the “we’ll see,” the endless in between.
But then she did something that mattered: she didn’t dismiss me. She constructed a plan. She ordered a repeat EMG and nerve conduction study, this time actually matching what my body is doing, not just testing an arm and calling it a day. She ordered a QSART test. She mentioned a skin biopsy pending the EMG results. She measured my calves and documented the difference, with my right side smaller. No, it wasn’t the clean, satisfying answer my heart was begging for, but a plan after years of uncertainty feels like oxygen.
She also said something that stuck with me: “There are other types of hereditary sensory neuropathy.” And my brain immediately grabbed onto the words, trying to translate them into something I already understood, trying to make them fit into the shape I’ve been chasing. When you live inside a body that’s changing and no one can explain it, you collect medical language like breadcrumbs. You learn neurology because you have to. You don’t get the luxury of staying uneducated about your own symptoms.
I’m still processing. My insides still feel shaky. I’m still afraid of walking away from any appointment without clarity, because I’ve done that before. I’ve left places… big places… with my questions still screaming, my symptoms still happening, my reality still unchanged… and nothing else in my hands.
That wasn’t today. Today was complex and cautious. Today was not a yes nor a no. But today was not empty.
My nervous system is so used to bracing for impact that it doesn’t know how to soften. It doesn’t know how to trust good signs. It doesn’t know how to exhale without checking the room first. I fear the waiting now, scared of how long it might take to get answers, scared of the possibility that results will come back “normal” again while my life keeps shrinking around what my body can’t do. But I’m also relieved… because she saw enough to keep going, enough to dig deeper, enough not to send me home with a shrug.
Tonight I’m holding two things at once: the ache of not having the ultimate answer, and the quiet, careful hope that I’m finally on a path that leads somewhere.
