Invisible

Fish_Tales

Against the Current
Joined
Jun 24, 2011
Posts
5,013
Invisible

{for the love of my life}



I’m invisible.

You can see me,
But you can’t hear me.
You could if you wanted to,
But you choose not to.

I know you don’t hear me.
If you did
Then my life would be different.

You say you hear me
Sometimes you even do things for me

When I say you do things for me,
I really mean you do it for my type
You don’t do things specifically for me.

I am part of a group.
I have an illness.
Disabled you call us.

I hate my illness.

It’s easier to feel something for me when I am part of a group.
It’s easier to do something for me when I am part of a group.
It is easier to define us all as part of a group.

Labels.

But our group is made up of individuals.

Some of us cannot hear.
Some of us cannot see.
Some of us cannot walk.

We are not all the same.
To you we are all the same.

Disabled.

I hate my illness.

We are usually invisible.
Not always.

Sometimes we become visible,
But only for a short time.
Someone famous will become like us.
Someone cute will become like us.

But usually….

Invisible.

I hate my illness.

What is it about me that makes my life invisible?
My needs invisible?
My dreams invisible?

I have hopes, dreams and an imagination like everyone else.
My body doesn’t work the way it should, but my mind does.

It’s only my legs that don’t work.
Well, at the moment it’s only my legs.
It will get worse.

My brain is intact.
My imagination is intact.
My soul is intact.

Not that you care.

I’m invisible

I hate my illness

I think my type makes it uncomfortable for you.
You worry about mortgages,
Cars,
Furniture,
Private schools,
Holidays…

I worry about being able to get to the toilet.
I worry about getting out of bed.
I worry about being able to get out the front door.
I worry about not being able to spend time with my family.

A friend speaks to me.

Hey, we’re going shopping. What are you up to today?

What am I supposed to say?

Oh, maybe I’ll try to walk ten steps without collapsing with fatigue.

I might try to get a hundred metres down the street in my scooter…
Without pissing in my pants.

You know, the usual stuff.

Thanks for the call.
Have fun.
Seeya.


I hate my illness.

It’s not sexy, my illness.
It won’t end up neatly.
It will go on interminably.

People don’t like loose ends.
You can’t tick me off your ‘to do’ list.
I’ll still be there.

Ill

I hate my illness.

Charity and empathy are not accorded equally.

At least if you give money to people who suffer from a flood,
Or a bushfire,
Or an earthquake

Then there is an end.

There you go, here’s a hundred bucks and I hope it all gets better now.
Phew, now I can get on with my life.
Hey, have you tried that new restaurant….


No, my problem can’t solved with a ‘cheque and forget’ solution.
Our type is there all the time.
We…. linger.

You can’t just give us money and make it better.
For you, money heals everything, preferably quickly.
If it doesn’t, then maybe it’s too hard.

Great.

It’s a competition.
The starving children.
Tsunami victims.

Who is more deserving?
Are we less deserving?
Did we ask for it?

No.

The real problem is I will still be sick tomorrow.
And the day after that.
And the day after that....

Until I die.

You will have to keep spending money on me.

Until I die.

I hate my illness.

If I died I would be more visible.
For a while.

There would be a flurry of activity.
Of sympathy.
Maybe for a week.

If I was dying,
I would get some attention for a while.
A few months of attention...
And dying.

They could martyr themselves,
But know that there was an end in sight.

They wouldn’t always have to be pushing a wheelchair.
Or taking me to the toilet.
Or moving things out of my way.

Because in the end I would die.

How sad everyone would be.
That’s a shame.
I wish we could have done something.


Well, you bloody well could have.
You could have helped me…
While I was alive!

After I’m gone,
My husband and son might have some meals delivered to them.
They might get some invites to functions.
People might even feel sorry for them and ask them how they are coping.
There might even be offers to help them with the housework.

Good luck to them.

No one ever asked me.

I’m invisible

I hate myself for what I have become.
The disease has changed me.

I don’t feel sorry for people.
I don’t feel anything for anyone.
I feel like it’s not fair.

If you catch me at a really bad moment,
I will admit that I wish someone else had this illness,

Rather than me.

I have no empathy.
That’s what my counselor says.
That’s what my husband says.

But who has empathy for me?
I know it’s not anyone else’s fault.

But I hate them.

I hate them for not realizing that they are all just one accident or illness away from being like me.

From not being able to walk.
From not being able to get out of bed without a struggle.
From being afraid to be further than twenty metres from a toilet.

I have graduated from university.
I used to have a good job.
I used to be important in my job.

Now I rely on my family.
I rely on the government.
Lucky it’s my family and the government.
I couldn’t rely on anyone else.

I know that now.

It’s so different now that I’m ill.
I don’t move in the same circles.

Well, I guess I don’t move at all
(Boom boom – who says I can’t take a joke?)

Everyone finds me too difficult now.
They don’t tell me that.
It’s just that they’ve stopped calling since I became ill.
The phone calls stopped.
Even the visits stopped.

I’m not one of them anymore.

I’m disabled.

I guess I don’t know what I want them to do.
I guess I just wish I could walk.

I lash out at those who can
(Walk, that is).

My husband.
My son.
My friends.

It seems the closer they are to me,
The more I want to cause them pain.
It gives me some sort of power.
I can have an impact.

Be noticed.

I am not happy with myself.
I am not happy that I cannot move.
I am not happy that I feel worthless.
I am not happy that I’m dependant.

I am just not happy.

I don’t know why I do that.
Say terrible things.

He usually goes quiet then and looks around at anything but me.
Then he walks off slowly.
She doesn’t mean it, he probably thinks to himself,
She’s under stress and ill.

Fuck yes I mean it.
I would rather anyone else be sick rather than me.

Anyone.

I didn’t do anything to deserve it.
I know what I’m doing, but I can’t stop it.

I hate my illness.

I punish my son for the smallest things.
He gets everything given to him on a silver platter.
He gets everything he wants.
He can walk.
He has it too easy.
Spoilt brat.

I’m disabled.

He should know that.

Everyone should know that.

Why doesn’t anyone else understand?
Understand what I need?
Understand what I want?

They worry about irrelevant issues.
Not walking.
Now that’s a relevant issue.

Talking about your holiday while I’m sitting there busting to go to the toilet?
While my leg is twitching?
While I’m totally exhausted from the effort of getting from the car to the front door?

LISTEN UP!!

That’s…not… relevant.
That’s crap.

He says I’m not useless.
He says my son and he need me.
He says they love me.

They must like pushing wheelchairs around then.
Loading scooters into the back of the car.
Fetching.
Carrying.

Doing everything….

I don’t believe it.
I think they do it because they feel it’s their duty.
Or worse, because they feel sorry for me.

I don’t want anyone to feel sorry for me.

I want my legs back.
That’s what I want.

Nothing will make me happy unless I get my legs back.
But I’ll never get my legs back.

I hate my illness.

I get interaction when I fight with my husband and my son.
When I criticize them.
No one else listens to me – they have to.

It makes me feel good.

I don’t have to think about myself.
Pointing out faults in them evens up the balance for me.
They are not so perfect and happy and I’m not so….
…. useless.

I hate my illness.

I often think about dying.
All the time actually.
I think about it especially when I drink.
I drink a lot now.
To forget.

What’s the point of living?

My husband says that the talk of dying is wrong.
He won’t even discuss it.
He says they need me.
He says they love me.
He says that a lot.

I’m sure he’s just saying that to make me feel better.

Or because he feels he has to.
How could someone need a woman that can’t walk?
That can’t stand?
That can’t do anything?

My family would be better off without me.

As for the others, they wouldn’t even notice.

I’m invisible.
 
Thank you for sharing this writing. I was compelled, particularly, by this:

Great.

It’s a competition.
The starving children.
Tsunami victims.

Who is more deserving?
Are we less deserving?
Did we ask for it?

If this is autobiographical writing, I wish you the best luck managing your challenges. Everyone has some, but certainly it sounds like you have your fair share.

Sincerely,

Dora
 
Hi SM and PG - thanks so much for reading and the feedback. The format on here is better than the post on Lit since I had no idea of how to edit!

PS - I know it's long, but it was all there spilling out. I'm sure I'll get more succinct as my skill develops. :)
 
FT

My wife and I just read this together. She has Multiple Sclerosis and hates for me to say she has a disability. Not that this helps your situation, but her strength amazes me. She fights each day when many give up. She will not allow anyone to feel sorry for her. I can't understand why she isn't mad or bitter.

She humbles me and makes me want to be a better man.

Since we believe this represents an aspect of your life, we hurt for you.
 
Geez SM - that's what my wife has! Hers has deteriorated in the past 6 months and has been upgraded (if that is the term) to progressive. She was strong for so long, but the recent attack has completely demoralised her.

We will fight on (like you) because we have to!
 
I have two neices with it and where one of them goes for treatment a professor is doing a study into why a particular group of people (now in their 40s) were struck with this disease more than any other generation before them
 
Hi UMS - thanks for the input. The studies I've researched seemed to show a correlation to people with ancestry further from the equator. The reasoning seems to be that people who originate from colder climates with less sun, seem to have a higher propensity to it.

Also, the rate is 3-4 times higher in women. Another burden they have to bear...

Nice to meet you, by the way.
 
FT--Nice to meet you too.

My wife and I married about a month ago (we went to the same high school 30 years ago). She was diagnosed in 2002 and hasn't had a relapse since 2006 except for a small one last month as she switched meds (tasabri to gelenya--spelling wrong). Tasabri is nasty stuff and was taking a toll on her system.

Interesting enough is that she is of Nordic ancestry, so it matches the theory of higher prevalence the farther from the equator.

She's ambulatory, but tires easily and has the usual issues with energy and steadiness. She has great days and days when all she can do is fight the tinging bites in her legs.

Check your PM.
 
Thanks - I did.

I think the drug you were talking about is Tysabri. That's the one my wife takes, but it's through IV and takes about 4 hours (further compounding issues). Yes, it's pretty nasty, but seems to be the only one that works. Is gelenya the oral one? I've heard they're testing a new oral one. But I guess everyone has different side effects.
 
No One

No one can ever be considered "disabled" when they are so articulate and expressive as you are Fish Tales. I hope you will share your voice to a wider audience.

My wife was diagnosed with MS back in 91. She struggles with the physical limitations but the mental changes are very pronouced. Advocacy and/or lobbying may be an outlet for you. You are certainly capable of presenting the circumstances that many face and are so deserving of attention.

You have a beautiful voice that deserves to be shared. I hope you will continue to share it with all of us. Many thanks...
 
Hi T2 - thanks for your interest.

We asked the neurologist about this. In our country, there is a lot of pretty cutting edge research being done, however, the Zamboni treatment is viewed with extreme skepticism. I guess we'll keep following it, but for now it's off the table.

One of the issues with being ill, is that there is a great risk of getting your hopes up and then if you fall for something that is knowingly a fraud, then you end up feeling worse!
 
Hello F_T. Here's an MS inspired poem I wrote a few years back.

The Art of Letting Go

Cards must be held close
concealing the hand.

It is not to be shared or
communicated.
It is a strength,
one
of a dwindling few.

Abandoned loves lie
discarded,
my progress
of freedom in motion,
the joy
of taking the stairs
two at a time.

The love
of growing things,
close to the earth,
hands deep as roots.

The tenderness
bestowed on
still life,
the commonplace,

gone
yet remain,
memories to visit
in living colour dreams.


Each day a fragment
of life falls away
an ability,
a talent,
a satisfaction,
an ace becomes an ache.
 
Thank you T2 - that's great!

Isn't it amazing how many are touched by something like MS, yet most think they are fighting it themselves?
 
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