Tuesday, January 14, 2014

The Graceful Art of Falling: A look at Living with FSH-MD

The best thing about sharing my story is the opportunity it gives me to meet others. Like I have said before no matter what form of Muscular Dystrophy someone has I truly believe that we are all in this "Together". So as the My Becker's Story blog enters its fifth year it is my plan to make people more aware of the many different forms of Muscular Dystrophy. Recently I had the opportunity to connect with the author of The Graceful Art of Falling a book created by L. White who has chosen to share her story of what it is like living with FSH MD (or FSHD). She says; "I wanted to write The Graceful Art of Falling for two reasons.  The first is I am an avid reader; I love getting lost in a good book.  When I was looking for a book about someone's experiences with muscular dystrophy I couldn't find anything except scientific books about muscle disorders.  I decided I should write a book that those with muscle disorders could relate to, something that would make them feel less alone in their experiences.  The second reason I wrote this book was to bring awareness to FSHD and muscle disorders in general.  I believe that increasing awareness is key to securing more funding, more research, and finding treatments for these debilitating disorders."
Today I wanted to share with you an excerpt from her book The Graceful Art of Falling, which was published in September 2013:
~Lynchburg didn’t get much snow, which was good for me.  Unfortunately, I didn’t realize how much freezing rain and of course, ice, Virginia gets.  We didn’t have many winter weather days either, classes were only canceled a few times throughout my four year stay.  What was frustrating was that classes would be canceled for an inch of snow, but not when the entire campus was a sheet of ice.
Ice and I are not friends.  When it was bad enough, I would skip class, sometimes just my morning classes until they could get the sidewalks cleared up.  I don’t know why I went to class at all on one particular day, maybe I had a test, but I can’t remember my reason for trekking out.  I only remember this day because something mortifying happened to me, and at the age of twenty, it may as well have been the end of the world.
Our campus had a main section called “the dell.”  This was in the center of many of the main buildings and dorms.  In the center of the dell was a circle of benches and flowers where all the sidewalks which extended from the buildings met.  This convergence of sidewalk was about half way from my dorm to the building I had class in.  Not a long walk by any means.  It was a small campus.
I bundled myself up and put on my winter boots which I didn’t often have to use at school. They were heavy duty boots, my parents wouldn’t have it any other way, they had a thick rubber sole with strong grips meant for walking on ice and snow.  I stepped out the front door of the third floor in Tate Hall and noticed that everything was covered in ice.  Wonderful!, I thought.  It was obvious that someone had made a pretty feeble attempt to throw sand down.  I can’t explain my annoyance with places that use sand as a means of melting ice.  Sand gives a little bit of traction, but it quickly is washed (or wiped) away after a few people walk through it.  Being from New England, I know that the only thing that works on ice is salt.

I started to walk to class.  So slowly you would think I was 110 years old.  I realized about ten feet from my dorm steps that walking in the grass would be a better idea.  Grass doesn’t usually form a solid sheet of ice like sidewalks, so I moved into the grass and continued my slow and steady pace.  When I got to the center of the dell I had to cross to the opposite length of sidewalk- there was no way to stay on the grass.  I needed to go straight across and the benches were in a wide circle around the outside.  There was nothing for me to hold on to.  I paused for a second weighing my options.  I decided to go for it.~

A little background about FSHD: In FSH MD (or FSHD) the usual location of muscle weaknesses at onset is the origin of the name: face (facio), shoulder girdle (scapulo) and upper arms (humeral).  By the age of 20, muscle weakness can be found approximately 95% of the time in affected individuals.  There is certainty that some skeletal muscles will weaken and waste throughout life and that this can, and often does, cause limitations on personal and occupational activities. FSHD appears not to diminish the intellect. The heart and internal (smooth) muscles seem spared and, with rare exceptions, those with FSHD have a normal life span. The rapidity and extent of muscle loss differ considerably among FSHD patients — even among members of the same family. Some report few difficulties throughout life, while others need a wheelchair as walking becomes too difficult or impossible. (FSH Society, 2010).

I want to encourage you to visit The Graceful Art of Falling at http://www.thegracefulartoffalling.com/

Where you will also find a link to purchase this book.


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