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 least 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

I told him “You try duct taping your head to your shoulder for an hour and see how you like it”

When I eat, food falls on my shelf

Stop treating me like I’m not here. I lost my voice, not my mind

I get botulinim toxin injections to help with my musician’s dystonia in the hands. My friend who knows full well why I get them still asks me if my plan with the injections is to become a hand model.

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

Laughing gets me through the day.

Singing and being silly gets me through.

I work in a school. At lunch time as I filled the children’s drink jugs, I had two full jugs of water. I had a spasm in my hands, the jugs dropped and the kids and I all got soaked with water. It looked like a paddling pool. We all just started laughing.

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 feel better if I go for a walk outdoors. Even if I’m slow, nature seems to welcome me.

I need a tonic for dystonics

It’s so hard to hold my head up and steady for ID photo, trying not to spasm. Trying to look credible not criminal.

Choking  suddenly on coffee after my injection, I had to spit it all out into a garbage can.

I put chairs along my walking route to sit on.

Sometimes we grow out of our friends and just have to refresh the tree

When he mocked my voice, I felt small and helpless, like an ant.

Fighting the pain, trying to be friendly, I’m feeling five emotions like a volcano

Choking suddenly while driving, I had to cough up intensely. I splattered my steering wheel and windshield.  That’s what ‘s up with me. What’s up with you?

It’s good the doctor shaved my head before the surgery. He took away the grey

My body was being one big charley horse

For a while after DBS surgery my stitches hurt if I laughed.  I had to stay away from people who made me laugh.

My life now has a few hiccups

I won’t let that Someone in my life belittle me. You know who you are. You can go hang. The rest of you I love forever

Did I mention that I’m in excruciating pain? Not to sound dramatic but it’s ten out of ten pain. It’s  “I will soon be screaming “ pain. I’ve broken bones before and  this is much worse.

Sorry if I am crabby and weepy. It’s not you. It’s the dystonia.

Sometimes it’s hard to just lift my head to say hello to a neighbor and other days I just do it. Sometimes my tremors are horrible and other times my head is steady. I may seem erratic but it’s not me. It’s the dystonia.

Chewing gum helps me get through the day.

These meds disturb me, I mean dysturb me.

Dystonia has gotten me closer to my need for prayer and faith.

 My eyes clamp shut apparently for anything that is 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 

It helps me to put my hand on my head. I may look like I’m distraught but actually I’m doing better this way.

What you noticed was that I could shoot a few baskets with the grandkids. What you didn’t know was the next day I was nearly in traction. Worth it? Yes, or nearly.

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

I admitted to the job interviewer that I have a voice problem and may stop a few times. She said “Your voice does not define you. You’ve gotten this far you you clearly have the skills. Carry on”.

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

My neck used to be straight but something has gone seriously awry.

The injections vary. Different pokes for different folks

My neck crook makes it hard to eat in public much but in private I sometimes indulge in a party of one – shortbread dipped in chocolate sauce, ice cream. You gotta live.

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

Yes I love to watch a movie. But keeping my head upright to read subtitles just about does me in. Sorry about that, foreign cinema.

When I order pizza I use the name Chuck. It comes out clear.

I can’t say my name Cathy so I changed it to Katie.

My life is a lot easier since I started calling myself Trixie, which I can pronounce.

I can’t say Peggy so I use my longer name Margaret.

I look at street names and realize I could never live on some because no one would understand what I was saying.

When I say Doug it comes out as two syllables so I say my name is Bolt.

Nobody understands me when I say my name is  Jess, so I call myself Jessie

When I try to say Jeannie people hear Gigi.

I now put things in  my husband’s name. It’s easy for me to say Bob.

I can’t say the name of the town I live in.

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

Getting my body moving is like herding cats. Come on guys, at least some of you cooperate!

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

I’m not clumsy. The floor and the chairs are just out to get me.

My voice came back for a few seconds when I tripped over the cat.

A huge cicada flew into my hair, got stuck there and my scream was amazingly normal.

My husband was rebuilding the carburetor on a vintage Camaro and suddenly it burst into flames. I yelled “It’s on Fire!” in the best voice I’ve had in years.

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

My neck points tightly down and left. The intense pain to lift my head, few around me understand. They leave microwave and cupboard doors open absently and marvel when I bump into them. To test my eyes through those goggle things at the eye doctor’s  I am in torture and have to pause several times and take a breath. When friends casually suggest we look up to see a plane, a skyscraper or someone at the top row of the bleachers, their ‘just look up” ease breaks my heart. I am sure strangers think I’m faking it though.  As I use my cane and hang onto the railing to go up the steep cement steps of a stadium, I probably look like I am on my last legs. And yet to go down, I don’t even need the cane, hang onto the railing and can nearly fly along.  Dystonia dystopia.

This condition has a twisted sense of humor

I’d rather skip this moving experience

My dystonia is up to new tricks

When I’m laughing my voice works effectively. I must laugh more.

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

As I get much older with this I will still do stupid things, but much slower.

I sound like the 3 stooges

I can handle the dystonia with some sensory tricks but doing them in public is tricky. If I lie back with legs in the air, touching my forehead I may feel huge relief but an observer may gasp. I spare them that.

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

I am in agony with pain from my shoulder blades to my fingertips. My arms feel like I have been stabbed.

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

I was exercising yesterday and think I pulled a muscle. Then I realized any of my muscles in in pain just joins the line to get my attention.

It feels like I am walking on shards of glass

It’ s like walking on hedgehogs

The clerk at the entrance sees me hobble in with my neck askew, asks if I know where I’m going, and asks where, even though I’ve gone there daily for the last 5 weeks. He may want to help me out but I’d kind of like to help him ‘out’. I want to ask “Do you know where you’re going? ” But I just smile. This is me, being gracious.

Now, walls are my friends

I have realized that when I take a nap it’s my gift to others. Only when I’m rested can I really hear them and encourage them in their own struggles.

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’

I feel like I’m grabbing and continuing to hold a live electric cable.

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

I have stopped expecting to not have pain. I am more just amused now at what part of the body wants my attention today. It’s like dealing with an unruly group of little kids.

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

The pain keeps me from a full night’s sleep but that’s OK cause I can get some reading done for a few hours anyway. I’m my house’s own night prowler.

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

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”

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 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

When the boss is walking around looking for someone to blame, we all try to keep our heads down. Hey, I’m already doing it.

My goal is just that a quorum of my body parts is working this hour

Doctors are not sure how to tally pain. An entomologist Justin Schmidt devised a four point scale for the pain from 150 insect stings he had experienced. Some of the descriptions are so poetic they may inspire those of us with dystonia to describe vividly what we go through.

1 – (elongate twig ant) reminiscent of a child bully; intimidating but his punch only glanced your chin

2- (African ant) like wearing a wool jumpsuit laced with pine needles  and poison ivy

3- (Florida harvester ant) bold and unrelenting, like someone using a power drill to excavate your ingrown toenail

4 – (bullet ant) walking over flaming charcoal with a three inch nail in your heel

4 – (warrior wasp) like being chained in the flow of an active volcano

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

I’ve had to allow myself to go through the stages of grief -denial, anger, bargaining, depression, acceptance. Sometimes I regress and have to go through stages again.

A quorum of my parts is still working.  Some are refusing to vote and some for sure are voting against.. But the majority still rules.

There are worse disabilities than this. Wanna swap?  No. me neither

As a teacher I use hand gestures so the kids know when I have an urgent message

My husband knows when I talk, to lean in and read my lips

Though  some of us occasionally want to die, yet find strength to stay, means the world to me. I can accept my own down times, even expect them as the low point of the roller coaster . Crying big private sobs feels great. I have a little pity party then move on.

Since nature went to the trouble of making this day, I can go to the trouble of enjoying it.

At first I felt my quality of life was negative infinity. But I could not stay down there too long. I had to find hope.  Cure was the first hope but when it did not come, I realized something else. Maybe in this suffering,  I was more able to notice others’ suffering and  show compassion.

 Maybe with this pain I drew out the kindness in others, and with my gratitude helped others feel good.

 Maybe despite this pain I can realize all life is only for a time. Everybody gets something. This is what I got. I can notice others also and get the mirror off myself.

Maybe this is the time I understand privilege, not what I lost but what I still have.

There is good I can still do in the world.  I found hope, not the way I expected, but even better. I could see the light at the end of the tunnel and it came from a place I had not expected.

 I liked the film “Father Stu” and the film “ Johnny” about illness and going on anyway

I liked the book ‘The Fault in our Stars’ and the movie ’The Bucket List’ about wisdom with what life hands you . Watching or rereading  these recharges me.

I can’t endure this… I will endure this.

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.

In the Invictus poem, Henley says the unconquerable have a head ‘bloody but unbowed’. Mine is bowed but unbloody. Maybe that counts?

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?

I guess my body anticipated the pandemic in one way. My neck was already in lockdown.

Do I have to ‘come out ‘as  disabled? Isn’t it my decision?

With my vocal cord dystonia I sound like the Godfather.

My scalp hurts like stinging bees

I call my doctor my Nero.

If others don’t respect me there comes a time when I just have to say “Screw you” and move on.

That guy has no idea how I am  feeling so he should shut up.

My body is twisted like a corkscrew.

I worry I am a one person freak show.

I was writhing around like the exorcist for weeks

One neurologist seems to think I was bitten by a unicorn- lol.

I love how little kids are so refreshingly curious about my condition without rejecting me.

I realize if I fall down it is OK to let others help me back up.

I am in awe watching how some people can talk in long sentences so effortlessly. Then they look at me and I realize I am staring.

Hi fellow Dystonians!

That doctor treats me like I’m an unreliable witness to my own condition. It feels like I’m supposed to feign ignorance to protect his ego.

I can tell I’ve had dystonia for a while since I’ve now worn through several hot water bottles as they thinned and leaked, and several heating pads have split and spilled rice.

My body hurts so much. I hadn’t planned on being this old this young. Ah well, parts of me are still young.

I have trouble speaking but can shout loud enough to rattle windows

Just because I carry dystonia well does not mean it’s easy

Dystonia is like always having one foot on the gas pedal and one foot on the brake at the same time

I feel like a wet tea towel being wrung out both directions

I feel like I have been hit by a hammer. I feel pressure all over my head.

My neck is rock hard on both sides

I can’t see ahead to walk unless I hold my chin with my hand

I have trouble sitting straight to get a haircut

With cervical dystonia we all have ‘tells’ like our gait and sometimes doctors can diagnose us that way

An admirer said, watching me cope  “I don’t know how you do it”.  I told him ‘ I didn’t get a choice”

This lady told me I sound like a frog. I told her I am just waiting for the right prince to kiss me.

He told me I can do anything I put my mind to. Well, no. Some things I literally can’t do. His words were just toxic positivity.

I empty my energy tank some days just by speaking

My whisper is a whisper within itself

I missed my flight and was trying to talk to the clerk but she heard my voice and just gave me ‘the look’. We all know what that’s like. I learned however that tears still work.

If I have something to say, I’m gonna say it even if I have to beat it out with a wooden spoon on the table

I don’t have much pain, just a few niggles here and there

I told a nurse I don’t want to talk much because of my voice. She said that was OK and she’d talk slowly to help.

I spoke to Alexa and it said “I detect that you are whispering. Would you like me to whisper back?”

My legs feel like there’s popcorn popping inside them

Do not confuse my bad days as a sign of weakness. Those are the days I am fighting the hardest

How strange. My voice is better if I have a cold or laryngitis

I was worried people were judging me, revolted by me. I did not want their pity either. Then I realized with a shock that some were admiring me. They were studying how I handled what I could not fix.  This realization changed my whole comfort, being near strangers.

The clinic told me the side effect of the covid vaccine may be muscle stiffness. Ha. Like I would notice.

Ah my voice – When I was 30 the car mechanic on the phone called out to another mechanic” There’s an old lady here who wants to talk to you”.

My head jerks like a pigeon.

Someone  dared compare me with my flailing arms to a dancing inflatable tube balloon at car lots

Losing my voice was like losing my best friend

Next time I get a set of muscles I’m gonna gets ones that know when to hold ’em, know when to fold ’em.

My movements are delayed. I find it’s me waiting on me, hand and foot

How odd I now have the wisdom of age but am eating the pureed foods of a child.

My pain is an inner teacher and nagging friend, looking out for my best interests

I saw a mouse in the kitchen and screamed 5000 decibels. Now my voice is suddenly better.

Hearing an acquaintance mimicking my voice hurt the most of all. I no longer see that person.

After injections, I’m right as rain.

The checkout cashier thought I was deaf and started signing to me. I didn’t have the voice to tell her otherwise.

I’m on my fourth doctor

I am walking like I’m completely drunk

I miss the old days before dystonia

Losing my voice is like losing my best friend

My body is pretty much locked up

I was happy when he said he’d give me free shots of tequila for my voice but hurt when someone suggested motor oil

Some days a bobble head doll bobbles less than my head.

It’s not all bad. Though I have trouble chewing and can only eat soft food. I get to add sauce to everything. Cheese sauce, sweet and sour sauce, gravy, chocolate sauce. Jelly.  I am a sauce gourmet.

Oddly wearing a hat or scarf secures my head in a comforting way, sensory trick in disguise . It even felt good to have the CAT scan cushions around my head. How weird is that? Can I stay here a bit longer?