Trapped – A Snapshot of Neuropathy

In honor of Neuropathy Awareness Week…

Neuropathy means nerve disease or damage and it can take many different forms. Symptoms can range from numbness, tingling, to muscle weakness. Some people experience the loss of sensation and ability to move parts of their body while others experience chronic pain. Quality of life can be significantly affected if nerve damage in certain organs leads to impaired ability to swallow, sweat, go to the bathroom, or have intercourse. In the case of some, like our writer Jing, individuals with neuropathy can experience a complete shutdown of body motor function.

Our writer describes her experience with temporary paralysis.

Information was drawn from the Peripheral Neuropathy Fact Sheet distributed by the National Institute of Neurological Disorders and Stroke.

* Individual’s name was changed.

“Jing, what’s wrong? You’re freaking me out. Jing! Tell me what’s wrong.” Ry* is up. He’s now rolled over and hugging me as I lay limp in his arms. Concern written all over his face.

It’s my second year of pharmacy school. I’m probably 1.75 years post- severe traumatic brain injury (TBI).  My boyfriend and I take turns sleeping over at each other’s apartments almost every night (…much to the dismay of our roommates…much to my benefit as a trauma patient…but to be explored in another post).

We just woke up at my apartment. I always sleep on the left side of the bed in the corner where I feel safe. He always sleeps on the right side by the corner desk. The room is dim, but it is morning and light is peaking through the cracks of the window curtains behind us.

My eyes are open and I’m conscious. A few tears roll down my cheeks as I stare blankly at the ceiling. No words come out of my mouth – I’m trapped.

{I don’t know what’s wrong. I wish I knew so I could tell you.} Still mute. My mind is foggy, but my thoughts are spiraling. {When will I be able to move again? How long will this last? I need to get to class. I just want to be able to move so badly.} Every second of paralysis makes me increasingly scared. I’m watching Ry panic in front of me. “What should I do? Jing, what do you need me to do? Talk to me!”

{Please don’t panic. I don’t like seeing you freak out. Please don’t panic.} All I want to do is be able to talk again so I can tell him “It’s okay”; so I can prove to myself I’m okay. That I’m in control of my body.

On the inside, I’m trying to will my arms, my legs, my mouth to move. {Anything! I’ll take any movement, please move Jing, movvveeee.} In my internal dialogue, I feel like my mind is arguing with my rebellious body.

Eventually, I feel a tingling in my left arm. Movement is happening. It’s distributing throughout my body. {Get up girl, get up! Come on, come on, comeee onnn. This sucks. This sucks. Come on.} I feel like propping my body up is the hardest thing in the world.

I’m able to sit up, but my head is limp. I’m exhausted.

“Jing, come on. Move.” Ry is watching me.

I feel trapped. {What is this? Is this my reality? Am I really awake? Will this be the rest of my life? Will this get worse? I don’t want to go on with this day. I’m so tired. I’m just soooo tired.}

I can move again. But I am not looking forward to my day.

This is what one permutation of neuropathy may look like out of the hundreds that exist.

Thoughts for consideration for this week:

1. What is peripheral neuropathy?
2. How should one treat someone who has peripheral neuropathy (on a personal level, professional level, or societal level)?
3. What can you do when someone is having an acute episode of peripheral neuropathy?

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