themighty logo

Why My Illness Makes Me Feel Like a Puppet on Strings

“You’re walking down the stairs with the washing basket when it knocks against your right knee. Your leg starts spasming in response to the knock and you topple down the stairs. You go to turn your body to assume the correct position for sitting on the toilet and your body keeps turning after your brain has told it to stop. You end up sitting on the floor beside the toilet instead. You step out of bed and take one step, as usual, with your left leg, then when it’s time for your right foot to step forward, it shoots out to the side instead,” I said, while trying to explain my condition.

“OK. I understand that, as weird as it sounds. But why is it happening?” asked my friend.

“Well the doctor says…” I continue.

Three words into “what the doctor says” I see the persons eyes glaze over. They don’t understand what I’m saying. They have a mental block about it because it’s alien to anything they’ve heard about before. Or they prematurely assume it’s some other condition they are familiar with, so they stop listening.

Medically speaking, acute damage to discs in my lower back is irritating the nerves, making my left leg numb and my right leg go off on a tangent, as described above. I also have symptoms in my hands, making them ever-changing levels of weak. It is weird, I’ll give you that. And totally unpredictable.

No matter how many times I try to explain it to family, I fear nobody gets it except me and my doctor.

“I hope your pain gets better.”

“Has the doctor put you on anti-inflammatories?”

Um, no, I’m not in pain in general. I’m on Amitriptyline to calm my wayward nervous system and will be adding betablockers to that in about six weeks.

Creative ways to explain it include:

“Imagine you’re a robot and the programming that makes your legs work malfunctions, so you can’t control what they do. You tell them to go forward and they shoot out sideways instead.”

“Imagine you’re a puppet and you have no control over your body. You want to step down a stair, but your legs starts jiggling instead because you’re not in control of it. The puppet master is playing with your strings and he’ll give you no warning before he does it…”

That’s about as close as I can get to trying to get people to understand what’s happening with my wayward body.

I’d like to make a weak and pathetic pun here re trying to explain nerve irritation is irritating, but it wouldn’t be true. What is partially understood appears to be extreme enough for people to understand my general state of health and what to expect from me. The former state of being without diagnosis was much worse – the unspoken (and sometimes spoken) assumption being that it was all in my head.

A diagnosis is a relief, misunderstood or not.

Getty Image by Ann_Mei