My PD ‘Mind over Matter’ ~ Seriously? Another software update?

The ‘Small Girl’s souvenirs of life’ part 2 ~ by Meg Bernard

“NO WAY! THAT WAS AWESOME!” Closely followed by a look of ‘freakish awe’ and the words, “you’re really weird!” To which I reply “yes, I am” because I’m not about to argue with the obvious. I’m often asked “how did you do it?”…ohhh if you only knew how badly I want to casually reply, “oh, because I’m a witch”; I think the reaction could possibly be ‘YouTube worthy’…so I explain the methods I actually use, and by the end of the conversation, the look on their faces often tell me that I might was well have said that I am a witch. A girl just can’t win sometimes.

To bring you up to speed, this conversation takes place in a hospital, or more accurately in many hospitals and on many occasions. The script varies slightly (this particular example took place after a nurse spent 30 minutes poking and digging; attempting to start an IV in my arm (eventually, with guidance, the impossible was achieved); but the look of freakish awe remains the same. The ‘how do you do it? ‘ of this situation is the fact that during the whole 30 minutes I hadn’t flinched once; “how do you do it?’ refers to my ability to separate myself from pain. Yep. Weird.

For as long as I can remember my body has been “beautifully misunderstood” (the words I use to replace odd or strange), with what appeared to be a never ending onslaught of physical challenges requiring visits to an onslaught of specialists who would treat symptoms, sometimes finding answers; therefore pain became a natural part of my existence. Over the years I started to experiment with different coping strategies for pain until, one day, I discovered that a skill I use in other areas of my life applied perfectly to this one also. I learned how to separate my mind from physical pain. Oh, I am perfectly aware that the pain is occurring; that my body does like it; and that the stress from pain added to the stress from the cause of the pain takes a huge toll on my well-being; I just chose not to acknowledge it.

The skill of self-mastery; or mind over matter; is something I have spent my whole life working on. There is so much of life that is not within my control; so it became important for me to know that my mind; my spirit; the ‘Princess’ inside of my warrior; had the ability to make decisions for what I do have control over.

It is in using this skill that I have, in the past, been able to push beyond what others, sometimes myself, saw as my physical or emotional capacity. Some examples could be; learning how to physically defend myself against a person three times my size and strength (which, unfortunately I had to use, but fortunately was prepared for), or to prepare myself and then accomplish my dream of climbing a mountain, which I had been told I would never be capable of.

Of course those are pre-PD examples, so I will also include; learning how to sit up in bed in the morning followed by getting myself into a standing position and then, to prevent falling, using a walker to reach the washroom. There is also my virtual mountain; climbing a flight of stairs; which, with my specific PD symptoms, takes more energy, burns more calories and gives me ten times the feeling of accomplishment than climbing my ‘true life’ mountains ever did.

Mind over matter, spirit over body; princess over warrior; this has allowed me to accomplish things I never thought I could. Then came the discovery that I could apply a slightly modified version of this same skill set in order to handle the discomfort of pain…not to cure it, not to make it disappear, certainly not to pretend it isn’t there…but to live with it, and not allow it to possess me and control more of me than the physical limitations of my body already did.

I have experienced some amazingly far fetched physical challenges in my life, but have decided to focus on the past 5 years; a time period in which ‘mind over matter’ became the weapon of choice in my ‘zombie apocalypse’ arsenal; the time period which followed my diagnosis of Parkinson’s disease.

I’ll make this VERY CLEAR straight off:
1. YES, I believe in taking medication for my Parkinson’s disease and receiving all of the benefits they can bring to my life. I am so grateful for my medication. 
2. NO, the ‘survival skill’ I have developed for dealing with my PD does not stop tremors, it doesn’t keep me from falling down, it didn’t stop my stomach paralysis and keep me from needing a feeding tube; it doesn’t stop the nasty non motor symptoms; it doesn’t cure nausea and it has not eliminated my severe rigidity and the tremendous pain that accompanies it. I DO NOT have a cure for Parkinson’s. I only have the experiences of one small girl, and how she has managed to stay sane…feel free to debate that last statement.

Since  Parkinson’s disease is a progressive disease; for those who are unfamiliar, I will compare it’s progressive nature to the installation of software on a computer.

Often when I have installed new software on my computer, I figure out how it works, and think that it’s smooth sailing from there. BUT,  every now and then, at random intervals, I’ll get a ‘pop-up’ on my screen letting me know that a ‘new and improved’ update is available to install with just the click of a button; so I click the button and often discover that this update requires me to learn  a ton of different things in order to make the software perform as I would like it to. After being diagnosed with PD, I spent time figuring out how this new body worked; but I have found that just when I think I’ve got it figured out, a random ‘pop-up’ will appear, installing an ‘update’ that requires me to learn, all over again, how to get my body to work as I would like it to. One unfortunate difference between ‘software updates’ and ‘PD progression’ is that we don’t have the luxury of hitting that awesome “remind me later” button; our ‘new and improved’ version downloads without consent. This is where the discovery of using my mind to separate itself from PD pain became so vitally important; as  PD progresses, my ability to adapt to it needs just as progressive.

We all have different ways and different motivations for handling the challenges PD brings into our lives; I wish I was capable of finding “THE ONE TRUE WAY”, thereby bringing some relief to all of you; What I DO have are the experiences and stories that have helped me become my own PD expert.

So, in my next ‘Small Girl’s Souvenirs of life’ I’ll tell you a bit about the day ‘needles stopped hurting’; the day that my fierce love for my children overcame the pain of a life saving, emergency abdominal incision (WIDE AWAKE…NO PAIN MEDS…NO JOKE); as well as “Small Girl’s ‘PD pain’ survival guide” otherwise know as “Zeroing the Scale”.

Much love ~ Meg; SGwP

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Introducing ‘Meg, Warrior Princess’

By ~ Meg Bernard ~ SGWPD

Warrior Princess; February 28, 2013

“Never be ashamed of a scar.

It simply means that you were stronger

Than whatever tried to hurt you”

~Unknown

 I enjoy all things girl. Yes, yes, I realize that I wear an ‘interesting array of clothing’ with only MAYBE 1/8th being truly definable as ‘girly’, BUT, trust me, if it’s pink; if it’s sparkly; Meg’s gonna love it! It’s the princess inside of me that never grew up.

For example, I spent my 34th birthday having dinner with Cinderella in Disneyworld. It had been a dream of mine. I almost fell over myself to dance with Prince Charming.

But when I think of a REAL princess, I don’t think of a frivolous, pampered girl who gets whatever she wants. I think of a woman who is charitable and kind. A woman who spends her time giving service to others and helping those who are less fortunate than herself. Someone who loves people and life and finds joy in sharing it.

When someone says ‘Warrior’ what picture comes and to mind? I can say with confidence that it wouldn’t me an image of me. I’m one of those ‘compact’ (aka ‘smallish’) people that others feel the urge to protect. But the definition of ‘warrior’ is; a person who is engaged in or experienced in battle. One who shows great vigor, courage; who will never give up. Who, against all odds, will fight for what they believe. I love the synonyms of warrior. They are champion, fighter, and hero.

Right now each one of us lives in a battle zone, with the battle being unique to each individual. A few years ago, when I walked out of my neurologist’s office, I wasn’t fully aware that in being diagnosed with Parkinson disease, I was beginning the battle of a life time.

Now I will sidetrack and explain to you how I receiving my unusual nickname…Due to an error made by a surgeon during a simple procedure, I spent the majority of the first 3 months of 2013 in various hospitals. I ended up needing many surgeries, several blood transfusions, and almost losing my life on multiple occasions. There was constant worrying and waiting. Praying that this wasn’t the end of my journey. I experienced incredible, almost unendurable physical pain that will be forever etched in my memory.

After my last surgery of that time period, I received a visit from a friend. She asked if she could see my most recent incision. As I moved the hospital gown aside to show her my latest scar, all the air squeezed out of my lungs. I couldn’t breathe. I didn’t recognize myself.

I was aware that my body had become tiny and weak but it was a different sight that shocked me. What had once been the smooth, unblemished abdomen that I was familiar with, was now unrecognizable. I saw my new 8” vertical scar (the third such lifesaving incision made in a matter of only few weeks), a lower horizontal scar, and many, many holes and scars from drains and incisions.

I remember suddenly feeling very confused. All I could think was, why did this happen? How did this happen? Who does this body belong to? I remember feeling like I had lost and I was afraid. But my friend saw it differently.

She looked at my abdomen, and then looked up at me. And with tears sparkling in her eyes she smiled and said “Meg! Look at your beautiful war wounds!” Confused by her words, I looked again at my scars as she said “My dear friend, you have been through a long and frightening battle, and you fought it like a warrior, never giving up and refusing to quit.” I looked back into her eyes as she said “I know that sometimes you were scared that you weren’t going to make it, but look!” and she pointed at my scars “You won Meg! You HAVE BECOME a mighty warrior!!” Then she put her hand on my wet cheek and looked into my eyes and said “and yet you are still the same Meg I have always known and loved, sweet princess Meg.” Which got a genuine, yet tear filled, smile and a from me. Then she made her pronouncement “So, from this day and forever you shall be known as ‘Meg, Warrior Princess’.”

That was a few years ago, now, each day I fight a different battle. Who is my mighty foe? The dreaded dragon Parkinson Disease. I battle each day to move, to stand tall and not fall, to take big steps, to make my voice loud and clear, to brush my teeth, to tie my shoes, to feel confident in public, to write my name legibly, to feed myself, to endure the sometimes overwhelming anxiety, to managing fatigue, to endure the pain of rigidity…the list goes on and on it feels endless as the disease progresses.

Each morning I sit on the edge of my bed and I ask myself ‘who will I be today?’ It is often in those few minutes that I think back to the day that I received my new name. I think of my war wounds; my battle scars; both seen and unseen. I can’t help but acknowledge that this is a long and frightening fight, but I decided that day in my hospital room that I AM a warrior and I will never give up. Does this mean that I am never tired? That I never cry? That I never feel angry? No, I admit that I experience all of those emotions. What my decision means is that I will never stop fighting.

Whether you have Parkinson disease or not, each day you are fighting your own battle which means that each day you also have to ask yourself this same question “Who will I be today?” I wonder what your answer will be. Will you be a Warrior or a Champion? Will you be a Fighter or a Hero? What word or description resonates within you? Which word fills you with the courage and strength that I know you have inside of you as you fight your daily battle?

As for me? I am Meg, Warrior Princess.

6 months later

6 months later at WPC in Montreal