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The Diagnosis that Changed my Life Forever

I laid in a hospital bed unable to feel my feet, my muscles suddenly not activating to move my legs in a smooth motion but rather jerk into the movement. It was strange to not feel superficial sensations in my legs, but feel stabbing pain deep in the muscle tissue. I watched my legs grow smaller everyday. I watched my feet even begin to lose padding. I didn't know that was possible until then.


I saw the steady stream of nurses sort of pass in and out of the room. They all had the same look when they entered. Afraid. Unsure. Worried. I could read it in their expressions, but somehow didn't connect to it because I felt safe. My body steadily declined but also stayed in this suspended place of somehow being okay. Maybe it was my attitude. Maybe it was the prayers that rang in my mind from all over the world. I'll never forget how loving that felt.


Each day began with a schedule of more testing. All uncomfortable. All vulnerable. All painful in their own way. I remember the deep breaths before each one. The ones that would fill every air sac in my lungs, and cleanse the anxiety that had built in the suspense of being wheeled back. It was hard to get a good deep breath then. The air felt like it would pass but never give the oxygen that I needed. Except for these moments, and I felt them hit the depth that I needed. Maybe it was only one breath out of ten, but I was so desperate for it that I was thankful.


I remember the doctors asking me to walk, studying my gate, with furrowed brows, and intense expressions, offering no feedback. It was like I was a picture on the wall. Hung in a specific place. To be observed. To be studied. Maybe even criticized to point out all the things that weren't right. But unlike a picture, I studied them too. I took them in. I studied their expressions as if to gain clues to what was happening to my body. None of them were sure, which was very unsettling. So began another round of orders and tests, consulting more doctors. Pulmonologists, cardiologists, neurologists, Infectious disease, and residents in every field that followed them became regular visitors. None of them were warm. All of them treating me like a dead end of empty lab tests. While every lab test, came back normal, only three were concerning. My telemetry, oxygen saturation, and gate. But I was stable. So I was discharged.


I remember leaving in a wheelchair, with my husband pushing me, and wondering how this was okay. I had run a half marathon a few weeks prior. I was obviously not okay. But no one had an answer, so they sent me home and said if anything progresses then come back.


If anything progresses? what does that mean? It could get worse? How could it get worse? No one prepared me, no one answered my questions.


My mother didn't have peace in not knowing either. So she called an old colleague. A neurologist that she had known for years and had an office down the street from me. He had a three month waitlist, but moved mountains to see me. I sat in front of him while he thumped on my reflexes. Some gone. Some hyper reflexive. He was warm, soft spoken, unhurried, looked me in the eyes, was sincere in listening, and believed me when I answered his questions. He ran my last test. The one that revealed severe nerve damage along the left and right side of my body. I remember becoming undressed and wondering if that ever became easier. I felt naked in more ways that one. And somehow that seemed more painful than the pain itself. I remember seeing my reflection in the mirror and noticing the atrophy in my legs, even more than the last time I made note of it. The test was painful. How I would imagine a cattle prod would feel, but laid onto specific points on the body over and over. I got dressed and the sweet man in the white coat explained my results. He had no assurance in my recovery, but offered a treatment that was really my only hope at that point. He said my youth would help me, but he had patients that never made a full recovery. His kindness made me trust him. I felt comfortable being in his care. Maybe it was the way he made eye contact, or the relaxed way he sat in his chair to face me, or the way his face never held tension, but his presence brought so much peace to the room.


So when the words, "Guillain-Barre Syndrome" were spoken, I didn't feel unsettled. I knew what that disease was. The irony was that I had just studied it in college as part of a unit on neuromuscular diseases that sometimes require speech therapy. I learned that the nerves can regenerate unlike Multiple Sclerosis. I knew that the autonomic nervous system endures trauma. I knew that treatment was supportive therapy and time, with two medical interventions that were beneficial within a certain time period. I read the material, memorized it for a test, and never thought of it again until that moment. The words left his mouth and ran through me like deja vu. Those slides and lectures suddenly became the cruelest foreshadowing of my future.


It came full circle when I returned a month later in that same classroom to take my finals, being pushed in a wheelchair, hardly able to hold my pencil, and bubbling in the answers to the questions about Guillain-Barre Syndrome. And I thought...this is sort of funny, in a dark but serendipitous sort of way, because I aced the neuro test, having never studying for it. I had just lived it.