If you’re a member of the club (you know, the one you never planned on joining), it’s likely that this will be familiar to you. I’ll have to admit, it is in part, the product of frustration – the frustration of having to repeat the same thing over and over and still not being heard and understood. In talk with others in the brain injury community, the experience is widespread.
This was first published on wordgathering.com, a journal of disability poetry. Go there. There’s a lot of good reading awaiting you. It may be a more palatable way to “ingest” the “disabled / differently-abled experience.” Taking in disability is difficult for many, especially when the disabled person is someone close to you.
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The Conversation
By Mark Langer
“You should just…”
“I would, but…”
It’s the conversation that goes on and on.
“I can’t.”
“No, you won’t.”
“No, I can’t.”
That part of me doesn’t work.
The lights are out.
The power is cut off.
Are you listening to me?
Are you hearing what I’m saying?
“You’ll do it when you really want to.”
“I want to right now.
I’d do it if I were able.”
Disabled
Differently-abled,
What you call it doesn’t matter.
The changed ability does.
“You used to…”
“That person no longer exists.”
“But you’re standing here in front of me.”
The face is familiar. The body looks the same.
But have you looked closely?
Have you asked the hard questions?
Are you listening to me?
Are you hearing what I’m saying?
By Mark Langer“You should just…”
“I would, but…”
It’s the conversation that goes on and on.
“I can’t.”
“No, you won’t.”
“No, I can’t.”
That part of me doesn’t work.
The lights are out.
The power is cut off.
Are you listening to me?
Are you hearing what I’m saying?
“You’ll do it when you really want to.”
“I want to right now.
I’d do it if I were able.”
Disabled
Differently-abled,
What you call it doesn’t matter.
The changed ability does.
“You used to…”
“That person no longer exists.”
“But you’re standing here in front of me.”
The face is familiar.The body looks the same.
But have you looked closely?
Have you asked the hard questions?
Are you listening to me?
Are you hearing what I’m saying?
Mark 2.0 
I hear you big time on this, Mark. I get it as well, although the details are different. People really do not get invisible disabilities at all unless and until they themselves get one.
By: Hoechstetter Interiors on March 31, 2011
at 4:55 am
And this is exactly why my goal is to raise awareness. Not only for employers, friends, family, schools, but my toughest obstacle….the disability insurance company.
My 2nd neurologist (are they all arrogant?) had to stop ME from comparing Kristy 1.0 to Kristy 2.0 by asking me to look at it like Kristy 1.0 died in the car accident and Kristy 2.0 was born. Let go. Three years later and while I’m much improved I hear:
“Don’t say you can’t”
“Never give up”
“don’t accept limitations”
Yes, well that also is not very realistic for anyone. I call it accepting and letting go so I can move forward. My tech geek brain is gone. I can walk. I can talk. I can hold meaningful conversations now. I cannot, nor ever will be… or do…again. But guess what….I can draw now! “Oh, you could always draw…” silent screams…well no, if you dear family member paid attention or knew me…no, I could not.
Bless you for writing this blog! Kindred spirit
By: Kristy on May 28, 2011
at 4:01 pm
Kristy – You may not like this, but I agree with the “Never give up.” statement and , with some qualifications, the other two as well. I had the opportunity to meet Chris Reeve in the months prior to his death. This short meeting was arranged by a mutual friend. This was before my crash. At that time I was “only” dealing with MS. Chris’ words to me: “Never quit. Never give up.” When Superman tells you something, you’d better listen!
As far as the arrogance of your docs, that’s out and out WRONG! I have a good relationship with my docs. I will ask questions and question their reasoning when it feels appropriate. Maybe the “Dr.” in front of my name and being conversant with their jargon helps.
Family… that’s probably the toughest one. They want the old Kristy back and may grasping at any evidence to let them believe that you are. It’s love they’re expressing. We all struggle with that one.
In our brain injury group, the neuropsychologist has us use that same time line, delineating that life really does begin in its new configuration the day after the BI. For me, this was literal.
There is one thing that is true, sometimes causing friction between we TBI-lings and the non-TBI world. That is: “Nobody really gets brain injury until they get a brain injury.”
Be well and keep working hard. It’s worth it. It’s SO worth it.
Trust me, I’m a doctor. ;^)
By: Mark on May 28, 2011
at 6:10 pm