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For half an hour, the machine that regulates my feeding tube has been beeping out into the void

Writer's picture: Gail BuckleyGail Buckley

For half an hour, the machine that regulates my feeding tube has been beeping out into the void. I cannot imagine anything so inane or nerve-racking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed, and the stuck-together lashes are tickling my pupil unbearably.


And to crown it all, the end of my urinary catheter has become detached and I am drenched. Awaiting rescue, I hum an old song by Henri Salvador: "Don't you fret baby, it'll be all right."

“For half an hour, the machine that regulates my feeding tube has been beeping out into the void. I cannot imagine anything so inane or nerve-racking as this piercing beep beep beep pecking away at my brain. As a bonus, my sweat has unglued the tape that keeps my right eyelid closed, and the stuck-together lashes are tickling my pupil unbearably. And to crown it all, the end of my urinary catheter has become detached and I am drenched. Awaiting rescue, I hum an old song by Henri Salvador: "Don't you fret baby, it'll be all right.”

- Jean-Dominique Bauby


Jean-Dominique Bauby quote from The Diving Bell and the Butterfly. Bauby was a French journalist, author and editor who suffered a massive stroke in 1995 that left him with locked-in syndrome - a rare neurological condition that left his mind clear and alert but his body completely paralyzed. He could not move a single muscle except for his left eyelid.

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The lens George Floyd brought to race relations and what could and should be done about it, Anna brings to the reality of living with disability and what could and should be done about it. 

NeurFX

No one person or one book can make the change that is needed alone.

 

The first step is understanding. That is why this book was written. The next one is action. That is why we need to add to Anna's voice. 

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