Writings about Ataxia, being DeafBlind, family life. The best life can offer!


Collapse

While reading a book, Steven Galloway’s The Cellist of Sarajevo, I come upon a line of text:

He cannot collapse.

These three words, I feel, should also be my mantra. Let me explain…

The book, a work of fiction about the Bosnian War, has three protagonists, one of which has three children.
This character, Kenan, witnessed the raw, unthinkable burning of a library, with it’s millions of books being burnt, lost. Devastation.
During the fire, Kenan also happened to see a fireman (that’s the word the author uses) collapse, fall to his knees. This firefighter is undoubtedly overworked, exhausted, suffering from smoke inhalation etc.
Then, Kenan saw other firemen carry the overworked colleague out of the firestorm.

We learn that Kenan considers, briefly, that he wishes to be carried away, he is exhausted of the war, he wants to be elsewhere so he can recover.
But, quickly on the heels of that thought, he advocates that “he cannot collapse” because he doesn’t want his children to get the wrong idea, that he is lazy, that he is trying to get out of the war, while leaving his family behind.

That, in a nutshell, is all I am going to tell you about the book.

I want to take those six syllables, I cannot collapse, and put my spin on them.

As a person with an incredibly rare disability, CAPOS, which has equal parts hearing loss, vision loss, ataxia, I wouldn’t mind just giving up, just packing a bag and going away for an extended holiday on Bora Bora.

But, I can’t, my oldest son has CAPOS, he is also autistic, as in my youngest son.
If I just gave up, what would message be to my kids!

Through they no longer look up at me, we are almost the same height now, they still need my insights, my help, my laundry skills, my motivation.

I cannot collapse, and neither should you.

Thanks for reading!

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About the author

Craig MacLean is DeafBlind with ataxia, a rare condition called CAPOS. He & his wife of 22 years have two sons, the oldest of which has CAPOS as well.

Craig uses American Sign Language to communicate. He is an avid writer, friend, Hot Wheel collector and intervenor advocate.

Craig sits on many committees, boards and associations as a DeafBlind rep. He graduated university with a BA in psychology in 2000.