I don't normally like to
anthropomorphize DMD because it's not a person but if it were it
would be like this.
D= “So you're a little kid, you seem
happy, well not for much longer. You can walk and sort of run, but no
jumping for you.”
Me= “Why?”
D= “...because I feel like it.”
(not going into the real why, it's
complex and DMD wouldn't care anyway)
Me= “Can I keep playing?”
D= “For now, but I'll be back soon.”
A few years later.....
D= “Right, this walking must stop and
get used to barely standing for a few months then wheelchair time.”
Me= “I'll get used to it.”
D= “That's what you think, ha ha”
Me= “We'll see.”
A few years later
D= “I've had an audit, you're
enjoying that wheelchair far too much. Your arms must stop working now and
just limply sit on the table but a little hand movement is
permissible, hey, you might keep that function awhile.”
Me= “How generous, not.”
D= “Don't say I don't take things
away, wink.”
A year later
D= “It's that time again, no more
straight back for you, lets get twisty with Mr Scoliosis.”
Me= “Don't you ever stop?”
D= “I'm nothing if not consistent.”
D= “By the way, you'll have painful
x-rays and you'll miss that surgery not before you think you're
having it and crying first.”
Me= “I'll cope, that new game will
distract me.”
D= “Well in due time we'll discus
that.”
A few years later
D= “Well here we are again, you're
getting too used to me. Shallow breathing and gradually losing your
cough will be sufficient for now.”
Me= “Let me rest, please”
D= “No, you can't escape.”
Me= “grrrrrr”
A few months later,
D= “So you're 16/17, well, what a
year is in store for you, that cold will turn into pneumonia and after 4
delirious days awake you'll go to hospital (3 times) and intensive care
at that. You'll end up dependent on overnight ventilation and needing
a mini tracheotomy just to survive. Also you'll leave school and I
won't let university bother you either, I'm kind like that.
(many with DMD do go but my personal
situation prevented it)
Me= “Oh why, that is mean, but at
least there's solutions and I'm able to play my computer games.”
D= “For now.”
Around 19 now
D= “Let me make your eating hard and
swallowing difficult very gradually so you don't quite notice ….”
Me= “What were you saying, I was
playing a soccer game.”
D= “You'll see”
Early twenties now,
D= “Let me throw worries, depression
and relationship difficulties in at you just for fun. Also say bye
bye to that computer console gaming it's just PC's now.”
Me= “That's a really tough one for
me, but I'll just use PC gaming and find art programs and DO
something.”
D= “For now”
Mid twenties now
D= “Your heart is bad, I hid that
well, but more hospital for you and heart medications a go go. You'll
find out you're only 6 stone in weight and skeletal looking. You'll
need that ventilator more during the day.”
Me= “I found pureed food so stick
that silver lining to ya forehead. Plus I'm over 8 stone now.”
(Stone=14 pounds)
Present day around 32 years old.
D= “small hand movement draining away
– check”
Me= “Using eye gaze mouse.”
D= “ I know you're scared of losing
the ability to make art, so I'll toy with your head. Suctioning will take an hour every time well nearly every time, there's leeway. Also you'll be craving tracheotomy changes every month and get frustrated about your chest filling up. You'll need that
ventilator 23 hours through nasal pillows and full face mask, possible feeding
tube and full tracheotomy ventilator needed in near future.”
Me= “I will fight that all the way.
Hopefully I'll adapt better than a borg :)”
D= “You'll look like one too”
Me= “Hey, I'm not that pallid. :P”
D= “Eventually you'll expire and
death will strike.”
Me= “You'll expire someday soon.
Sooner than you think.”
This is how vindictive DMD is and it's
relentless. It's constantly chipping away either covertly or overtly.
It's a different variation to the spoon theory of disability, because those affected
constantly lose spoons with DMD. Those affected don't know how many spoons they'll get tomorrow. I hope you can understand its constant
progressive nature. Thankfully faith and hope gets me through along
with wonderful friends and a beautiful family.
P.S.
Don't feel guilty for laughing at the
funny bits, I'm not all doom and gloom.
