Losing control while getting answers

Losing control over my body was the most terrifying process I’ve ever been through. As the hours in observation wore on, I lost the ability chew my food, drink through a straw, raise a fork to my mouth, raise my arms above my shoulders or to hold my lips together and puff out my cheeks. I found out later that the nurses that conducted ongoing neuro assessments had reported that my pupils weren’t equal.

Throughout this, the only things keeping the back pain away were morphine and Percoset, administered as often as allowable. Obviously, I wasn’t entirely coherent through the day.

Medical staff rechecked my vitals and neuro assessments as Sunday became Monday. I was being observed. I emailed my boss at 1:30 in the morning to let him know I was in the hospital and didn’t know when I’d be back at work.

We wait in Observation, unsure of when I'll be able to hold her again.
We wait in Observation, unsure of when I’ll be able to hold her again.

An occupational therapist came in at some point to assess my ability to bathe & groom myself. I wasn’t able to even use a washcloth to clean my armpits; attempting to shave my face caused my pulse to skyrocket into the 180s. I had to promise the monitoring nurse that I wouldn’t code so that she would let me finish.

A neurosurgeon and a neurosurgery nurse-practitioner stopped by and ran through another round of assessments before telling me that my MRI revealed a very old fracture at L1, probably a childhood injury that I had long since forgotten, and a very slightly bulged disc at C5/C6 that didn’t require surgery and wouldn’t explain the symptoms.

I was confused and disoriented when yet another physician – a neurologist – came to do yet another neuro assessment. He went through some of the pushes & pulls, squeeze, grips and other tests that seemed pretty standard, then went into another batch – I don’t remember what they were, but he seemed to be getting very excited. When he finished, he told me the following:

  • I was going to be fine
  • I was going to get worse before I got better
  • I had Guillain-Barre

And that’s when the circus began. New drugs were ordered. I was to be transferred to Neurology and started on Intravenous immunoglobulin. A spinal tap was ordered to confirm the diagnosis. The neurologist disappeared, then came back a few minutes later with a phalanx of other medical staff. I felt like the mystery patient on an episode of House. He ran some more assessments for the crowd and had me try to stand up. Once I got to my feet, I fell straight forward onto him.

Knowing that the condition wasn’t life-threatening, and that I would recover, I was finally able to let go of the anxiety of the situation, to surrender myself to care. I was fortunate in that I had a positive prognosis, support from my family and health insurance.

PROLOGUE: My life has taken a tumble

Part 1: I demand to be taken seriously

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