Own the Equinox Day 25: On Resilence

September 16, 2016

by Matthias Suchert 

Matthias lives and works in London as an architect.

The Equinox is a very fitting metaphor for Usher syndrome - a fading of senses that we use in our everyday to function and relate to our surroundings. Many personal stories have been shared on this blog, showing how Usher patients relate to and live with something that dwindles. The speed, results and effects are deeply individual, never the less debilitating. New ways of tackling with Usher syndrome have to be found on a daily basis. To this effect, I would like to dedicate this post to the resiliency of each person that is affected, each person that is party to that resiliency, as a relative, a friend, colleague or passing acquaintance. 

To quote an excerpt of To Toussaint L'Ouverture by William Wordsworth (1770 – 1850) 

Live, and take comfort. Thou hast left behind 
Powers that will work for thee; air, earth, and skies; 
There's not a breathing of the common wind 
That will forget thee; thou hast great allies; 
Thy friends are exultations, agonies, 
And love, and man's unconquerable mind. 

While the first part of the poem (omitted) is too dark for me, I believe the latter apply to all of us - Usher patient or not. It reminds me to live, enjoy the day, realize what made me who I am and realize that everyone leaves a footprint. Mine may be a speck of dust in the face of eternity, but I take comfort to know that what we all do will give new powers to these who come after us. One day Usher syndrome will be no more, our efforts possibly celebrated but then, eventually, forgotten. Nevertheless, the effect of it will endure - like man’s unconquerable mind. 

And now, I’ll go fishing in the dusk. It is a beautiful, clear and calm day. The fly line will swish so softly in the sunset, darkness falls and it is peaceful. It is wonderful to be alive. 

 

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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