Welcome to my blog!

Hi there!

This blog is related to my autobiography DMD Life art and me plus there will be non related posts. I have the disease Duchenne Muscular Dystrophy and that has left me in a near paralyzed state, I wrote this book in 10 months using one finger clicking one mouse button on one on screen keyboard! Be a follower by clicking in the box on the right and you'll get every new post I make. Feel free to join in with your comments and enjoy!

Ian,

Author and Digital Artist

Monday 26 September 2016

Introducing the relentless Mr DMD








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.

2 comments:

  1. Nice post. I also have duchenne and I can relate to a bit of this, though some of the later stuff concerns me.

    ReplyDelete
  2. Love this, Ian! And, can so relate

    ReplyDelete