So I’m sat
here, watching the rain hit the window and seeing the bead of water race down
the pane engulfing other drops as it goes speeding up until it gets to the
bottom and disappears. Slowly I hear an increase in volume. I realise that I’m
being spoken to. I’m sat in a consultant neurologist’s office in a very cold
and wet Oxfordshire. I’ve just been diagnosed with limb girdle Muscular
Dystrophy and I’m devastated. My whole life just changed. I’m surrounded by my
whole family, yet this is the loneliest I’ve ever felt in my life.
On this day
my older brother, Simon, is also diagnosed with the same condition. All that he
goes through I will see, with every expectation that my body will do the same thing.
Simon was diagnosed on the same day, but his condition is progressing more
rapidly. I will see one of my best friends slowly but surely rely on walking
sticks and become very slow in all movement. I will mostly feel burning and feelings
of paralysis in my legs, constant nerve pain across my shoulders, neck. I will
be tired each day by 16:00.
Now before
anyone thinks this is all very melodramatic and may sound exaggerated, it
isn’t. This is how it is, But people hear worse things in consultant’s rooms in
hospitals all over the world and it doesn’t take too long before I actually
feel grateful that the diagnosis was this and nothing worse.
Also to tell
you a little more about I and Simon’s relationship, it is as close as two
brothers could be.
Simon would
be the one who took me to the cinema with friends as soon as he’d passed his
driving test, rather than leave me behind. He’d pick me to play football knowing
very well that I was useless. We would prank each other at every opportunity, something
we have always done. There are four brothers in our family and one sister and
we were, and still are, little terrors!
Our
condition has not changed the dynamics of our relationship at all. As soon as
we were diagnosed and at this time we had three dogs in the family, two boxers
and Simon’s very own Rhodesian Ridgeback. Now I decided to encourage one of the
boxers to steal Simons walking stick on demand, chew it or hide it, leaving him
stranded, absolutely stuck. With this came a reaction and Simon simply trained his
dog to chase me and pin me down on demand to the point when one day I fell down
a flight of stairs with this Ridgeback stood over me.
It’s always
been this way and I can imagine it always will be. Just recently Simon called
me to ask if I was going out that evening and I tried to explain that I couldn’t
because the night before I had stood up, lost my balance, fell down and landed
on our coffee table which was covered in glasses. Not anymore! As I said, I was
trying to explain this in a phone conversation which ended up with Simon
hanging up due to laughing so much to the point of tears. He truly is a great
brother.
So it’s a
horrible thing but we deal with it the best way we can and most of the time
that is to laugh in its face (and each others!)
What’s
happened since the diagnosis 17 years ago?
Well I’ve
surprised myself and lots around me by still being able to walk unaided and
we’ve gone on to raise awareness about the condition, raised vital funds and
we’re trying our best to let others know about the other strains of Muscular
Dystrophy. As our Marathon running other brother, Andrew says, we are very
lucky to have each other around to help if needs must.
 |
| Myself, Simon and Andrew. |
So there you
are, that’s how we deal with it. It may not be orthodox or how some others may
deal with their siblings but that’s just who we are. Disabled or not, you
should still be able to laugh at each other AND most importantly with each
other.
17 years
ago, I knew nothing about Muscular Dystrophy, today I work in Pharmaceutical
I.T. processing paperwork to do with Muscular Dystrophy clinical studies and
I’m only a few days away from becoming an Advocacy Ambassador for the Muscular
Dystrophy Campaign in the U.K.
You can
follow me @HywoodMartin , ‘My beckers story’ @MyBeckersStory and the Muscular
Dystrophy Campaign @TargetMD on twitter.
