Not laughing, but coping

Humor with dystonia

Dystonia is not remotely funny. It is painful, exhausting, relentless. I do not want others to laugh at me and anyone telling me to lighten up irritates me. This is serious stuff.

And yet the long timers with the condition seem to have found an amazing way to cope. Sometimes there is anger in it, or feistiness with war images. Sometimes there is humor, or at leasr graphic language that brings a smile of recognition. Down here in the trenches there are sometimes glimpses of light.

Here are some of the stories I have read, images I have heard about this condition, slang, typos, jokes from patients themselves and a few researchers. It makes me feel that this is such a great group, a smart group, a resilient group. So there’s that.

I look like a one-sided body builder, a tilted weight lifter

We should get together a football team with all these big tight muscles

It feels like a key is stuck in the back of my head and slowly being wound up

Doctor, this happens in the trap of my jaw.

My muscles click like bubble wrap

My muscles sound like popping corn

Before an electric storm my dystonia is worse. I’m a living barometer.

Doctor, the pain is near my wishbone

Doctor this happens in my next to wee finger

Doctor, I feel knackered

Doctor, my eye floaters freak me out.

It feels like my body is uncooked peas sizzling in a hot pan

It feels like the meat from the muscles around my traps is about to fall apart.

Meds exasperate my dystonia

My arms are spawning

My eye floaters are creepy, like the walls are crawling

My eye floaters are like dust is flying all over the place

My eye floaters make me think I have a bug inside my glasses

My head nods so much I look like a nodding dog

My shoulder girdle is unstable

My tingles feel like walking on ice

My tingling feels like bacon sizzling

Now I am doing the ballerina thing

When I eat, food falls on my shelf

When my muscles click it’s like I hear gunshots

I can barely read my own handwriting

I was turned down for disability because I couldn’t hold my hand to fill out the form

If I have to stop driving my sports car, it will be just one giant paper weight

It’s so hard to chew I was wondering if they make baby food in quart size

My husband pinned down my arm to massage my leg and my arm shot out and punched him in the face. At least he laughed

Sorry but it helps if I walk backwards or dance. Mind if I dance?

Sorry I fell. I gave up beer for Lent. and this vodka is killing me

I need a tonic for dystonics

These meds desturb me, I mean dysturb me.

 My eyes clamp shut apparently for anything so easy I could do it with my eyes closed

The doctor swithered back and forth about what treatment to give me

At least with covid masks nobody can see my face twist

Doctors should have a left tilt and a right tilt room plan so we can see them

He’s my ot 

I am getting used to talking to doctors and thinking “I notice you are not believing me”

I told the X ray tech I have a vocal disorder. She said that was OK, removed her covid mask and asked “Can you read lips?”  Uh, that’s not the point. Can you?

I want to learn about this condition and have googled myself to death

I want to fix this. I’m bent on a mission

The injections vary. Different pokes for different folks

We patients learn to suppress an eye roll when the doctor never heard of this condition

What matters is the doctor’s technique of injectionning

How odd that I don’t drink, just so that I can remember to take my painkiller

For this fundraiser, to simulate dystonia, Jason will push a wheelbarrow uphill

I feel like a puppet and someone else is controlling the strings

I ordered ice cream by sign language and the clerk responded by sign language

Our support group shares dyscoveries

I am thinking of changing my name to Eileen

He asked if I am a left looker or a right looker.

I may seem angry but I’m just bent out of shape.

My head is like a bent doll

When a group of us get together, neighbors may think it’s the apocalypse

My head feels like a ten pin bowling ball

I feel like I have been hit by a train

It feels like there is a G force pushing my neck sideways

My days go in cycles- good, better, bad

My story  is a twisted tale

Basically my body disses me – dystonia

Dystonia is a jerk

This condition has a twisted sense of humor

I’d rather skip this moving experience

My dystonia is up to new tricks

Well, moving on, which is not as easy as it sounds

It feels like I have a charley horse that does not go away

I stand like the tower of Pisa

I sound like a cartoon character on helium

I sound like a frog

I sound like the 3 stooges

I am croaky

There’s something I want to tell you but it pains me to say it

If sipping wine makes my voice recover, I have to plan public speaking between swigs

It is hard to discipline my teenagers when I can’t yell at them

Somehow it is easier if I speak falsetto, fake an accent or talk babytalk. However when I do that, people hang up on me

This is the condition I don’t talk about

When people think I have laryngitis, sometimes I just say yes

I have a dromedary walk

I have a robotic walk

I walk like a wonky donkey

I walk like the Tin Man

It feels like I am walking on a water bed

It feels like I am walking on shards of glass

It’ s like walking on hedgehogs

Now, walls are my friends

Was it an accident? Why no! I just like to bang my head against door jams.

One breakout group for the muscle convention was joint action

The patient has a sensory trick of elbows on table- the praying mantis position

The patient has a sensory trick of hat or fabric on head – a turban trick

The theme of this conference is ‘love your neuron’

This trick is one hand on head and other hand on hip- water carrier pose

I am not a drama queen. This is late on set dystonia

A big F YOU to dystonia

A day of self pity is OK now and then. Movement disorders should come with that warning

A soft collar for my neck is as useful to me as a chocolate teapot

At least with covid masks nobody can see my face twist

Before an electric storm my dystonia is worse. I’m a living barometer.

Hi punters!

I am myself becoming the crooked man who walked a crooked mile

I can barely read my own handwriting

I don’t usually post here. I’m typically just a lurker

I told the X ray tech I have a vocal disorder. She said that was OK, removed her covid mask and asked “Can you read lips?”  Uh, that’s not the point. Can you?

I want to learn about this condition and have googled myself to death

I was turned down for disability because I couldn’t hold my hand to fill out the form

I wasn’t looking for something to ruin my life but it seems to have found me

If I have to stop driving my sports car, it will be just one giant paper weight

If sipping wine makes my voice recover, I have to plan public speaking between swigs

I’ll see your unrelenting trap pain and raise you a trigeminal nerve migraine

It feels like a game is being played on me – twisting me till I beg for mercy

It feels like a railroad is being hammered into my neck

It feels like I have a toothache in my neck

My arms are spawning

My body feels like I’m a wrung -out towel

My head turns a hard left

My fear of going on moving stairs is escalating

Sorry but it helps if I walk backwards or dance. Mind if I dance?

Sorry I fell. I gave up beer for Lent. and this vodka is killing me

There’s something I want to tell you but it pains me to say it

They misunderstand what I say. My name is Alice but they mishear “Atlas”. I rather like Atlas

They said “All you have to do is show up and say a few words” but that’s the hardest part

This guy heard of my condition and said to me “Well it could be worse”. I answered “Yes, it probably will be”

Well, moving on, which is not as easy as it sounds

When a group of us get together, neighbors may think it’s the apocalypse

When I tried to move, my legs just said nope.

When I try to turn my head, it feels like there’s a sharp knife in my neck

When my muscles click it’s like I hear gunshots

When people think I have laryngitis, sometimes I just say yes

When I speak some people say I sound fine but have no idea how hard it is for me to get the sound out. It is like running a marathon

I describe it like an eye twitch in the vocal cords

I tell people it’s like a twitch that won’t go away

I tell people it’s like Parkinson’s of the vocal cords and the nerves are firing  the muscles at the wrong time

Talking with vocal cord dystonia is like trying to run a marathon with broken legs

I tell people it’s like a leg cramp that won’t go away

I tell people I have muscle spasms in my vocal cords

When you put your finger in a baby’s palm it by reflex closes its little hand around your finger. A doctor told me that is what my vocal cords are doing

Dystonia is like having a pinball in your body bouncing back and forth between the barricades

I just point to my neck and say “damage”

I show people my hand opening and closing and then show it just closed and suggest how it would be if I was unable to open it. I explain that my vocal cords are like that.

It is hard to look in the mirror at my bendy straw neck

This whole nightmare of  dystonia handed me my a*s

I  am so tired of being told it is in my head and playing psychiatrist ping pong

Neighbor called to me across the street. Since I used hand signals to answer, she now thinks I am deaf and she uses only sign language to talk to me.  Her friend beside her nudges her “‘Tell her..”

Voice activated devices do not always understand me. Sometimes they only listen if I  yell

Allow this dystonia, even welcome it.


It is hard to accept dystonia because I remember how effortless motion used to be

Pardon me – I am only swearing because I heard a person can endure pain longer if they swear

Dystonia has made me less afraid of being attacked by bears.

I have a new party trick – I can stand on my ankles

Who else gets to kick someone and say it was just a hyperactive reflex?