Parkinson Awareness Month 2017 vs. the small girl ~ MASSIVE communication breakdown

~ by Meg Bernard, small girl with parkinson’s



This is how it began…I can still picture it so clearly in my mind…allow me to reminisce…

It was April 1st, 2017, 12:01am…the dragon, who had been lurking in a corner all night, suddenly sprang onto the end of my bed; giggling excitedly like a 5 year old on Christmas morning; waiting for me to wake up…

I should explain…

You see, it appears that there was some sort of a mix up. April is Parkinson AWARENESS month; not PARKINSON month. This is a month where we get to advocate, educate and raise awareness; unfortunately the ‘dragon’ (my unique version of PD) chose to completely misunderstand this fact. I can only assume that he forgot to read the fine print because somehow he had come to the conclusion that this was a month long celebration; a birthday party of sorts; meant JUST FOR HIM!

So it was, just a few days ago, the morning of April 1st, that I opened my eyes. I immediately saw the giggling shadow at the end of my bed and only had time to think “oh no” before, at a rapid and excited pace, he started to list off the ‘most excellent’ plans he had made for HIS month; all of which, of course, included me. Sigh.

He began:

“You know the incredibly vivid and terrifying nightmare you just woke up from?! That was me! Wasn’t it brilliant?! I’m planning an even nastier one for tonight!!” The look in his eyes made me shudder.

“Have you noticed yet that you can’t move your legs?! That’s me too!”

“Are you feeling the awful, all consuming pain running through your whole body? You guessed it! I did that!”

Giggles and more giggles, unable to contain his glee, he continued:

“Oh you’re gonna love this one; later today, when you try to stand up, I’m going to make you over balance which will cause you to…wait for it…FALL! It’s reeeeally going to hurt!”

“Then, just wait until you try brushing your teeth (giggle) and; oh my yes; tying your shoes!!!” He cackles “I can’t wait to see the look on your face!!!”

I groan as he pauses to carefully examine the items on his list; he wouldn’t want to miss anything; then I slowly try to shift my body so that I’m facing the right way to get out of bed.

“STOP! WAIT! IT GET’S BETTER!!” He explodes, “as soon as you put your medication; the ones that are supposed to make me behave; into the feeding tube in your abdomen, I’ve carefully planned for severe nausea to overwhelm you, causing massive spasms so that every time you move, during the following 3 hours, you’ll start to vomit up stomach acid…”

He takes a quick breath…

“…which will make it impossible for you to hook your central line up to your TPN (**reminder: I am fed intravenously through a tube in my chest that goes to my heart**) which means your body won’t get fed and you’ll have no energy reserves to battle what I have planned for the rest of the month!!”

“You see, in a few days…I’m not going to ruin the surprise by telling you which day…the bright shiny industrial sized feeding tube (he takes a bow as he speaks; taking credit for that nightmare insertion) that was so ‘brilliantly’ (air quotes) clamped to the wall of your intestines is going to come unattached and coil up in your stomach! It’s going to be so much fun seeing you scramble to get that sorted out!” (This is how I’ve spent my day today)

“THEN, FOR MY GRAND FINALE” he is practically screaming with excitement by this point “YOU’RE GOING TO NEED SURGERY TO FIX THE NEUROSTIMULATOR PORTION OF YOUR DEEP BRAIN STIMULATOR BECAUSE I’M GOING TO TWIST IT AROUND AND AROUND A BUNCH OF TIMES AND THEN LEAVE THE BACK SIDE FACING OUT!!” (that surgery is set for April 24th)Β He ends with a flourish of his arms and a big “TADA!!”

I stare at him in silence for a full 5 minutes; no sign of emotion on my face; then one at a time I put my hands over my ears, making a statement by blocking out his voice.

“Hey!” He creates a sharp spasm of frustration in my leg “why aren’t you listening to me?” He sticks out his lower lip and pouts.

“Dragon” I say, my voice exhausted, “why don’t we just do this like we do everyday…surprise me.” He looks slightly disappointed; explaining that telling me was half the fun; but reluctantly nods his head in agreement. As I continue to try and sit up he throws in his parting shot “but don’t think this gets you off the hook; this is MY special month and I won’t be happy until I’ve completed my WHOLE list!”.

‘Of course you won’t’ I say. That’s when we made eye contact; I stared him down; and in that moment I’m convinced I saw him shrink a little. Then it hit me; “Dragon” my voice coming out quiet but strong “do your worst because I will NEVER. EVER. GIVE. UP.”

On that note I leave you with a “Happy Parkinson Awareness Month my friends”. Let’s hold our breaths, cross our fingers, and say a prayer that we will come out the victor in this month long battle!! I know that I could never do this without you.

Have Courage and Be Kind.

Much love ~ Meg

small girl with Parkinson’s; warrior princess; slayer of dragons; wolf among sheep; and lover of life!

3 thoughts on “Parkinson Awareness Month 2017 vs. the small girl ~ MASSIVE communication breakdown

  1. MEG, you are one awsome articulate surprise package of absolutely immedurable value to everyone who has had, does have, or ever will have the thing called PD! Many thanks again and again my special SISTER WARRIOR who will NEVER GIVE UP ! ! ! πŸ™‚ πŸ™‚ πŸ™‚

    On Apr 11, 2017 6:07 PM, “small girl with parkinson’s” wrote:

    > Meg Bernard posted: “~ by Meg Bernard, small girl with parkinson’s YOU > HAVE GOT TO BE KIDDING ME! This is how it began…I can still picture it so > clearly in my mind…allow me to reminisce… It was April 1st, 2017, > 12:01am…the dragon, who had been lurking in a corner” >


  2. Meg, your blog again is extremly well written. I don’t know of one single person that has experienced a fuller gauntlet of the tortures that Parkinson’s so generously provides. Your giving it a personality is so effective you are educating the masses, while entertaining them. Never stop sharing your stories. They need to be heard.
    Meg, the dragon got off to a quick start on you this “Awareness” month. Meg, you are not a quitter. You don’t have it in to to give up. You will chip away and claw your way back. Fighting to regain that beach head the dragon stole from you. Meg, you have educated yourself, feeding on the information on the internet. You are a brilliant strategist picking your battles. You have an army of soldiers to support and love you. I am expecting the dragon at the end of April to go out like a lamb. Know you are loved by so many.


  3. Wow, Meg, I am in awe….this is so powerful and engaging….your strength and your creative gifts are formidable…much respect, much respect! I continue to include you in my thoughts and prayers πŸ™‚


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