It’s my Tube-iversary ~ Memories

~ Meg Bernard; Small Girl with Parkinson’s

Happy “tube-iversay” everyone!
November 28, 2015 marked the one year anniversary of the absence of all things swallowed; the insertion of my Jejunostomy feeding tube (it bypasses my stomach feeding directly into the second part of my small intestines). It feels like only weeks ago, yet also a lifetime ago.

**Sidebar** I have chosen not to mention; the green grape and red jujube that I, without thinking, popped into my mouth; as well as the 2 pieces of grape Bubblicious gum, which were accidentally swallowed. For, although it lead to the writing of highly amusing quips for my headstone should said incident bring about my demise; the winner being “she really blew it”; these incidents add so little to my reminiscence.

For your reading enjoyment/education, I will share this year’s top Q&A.

Q. Do you miss food?
A. No

Q. What are the BEST things about having a feeding tube?
A.
1. I can eat while I sleep.
2. I’m never accused of talking with my mouth full.
3. Consuming the same thing every day (Peptamen 1.5) makes meal planning easy.
4. My nieces and nephews think that it’s either; super cool, or, it freaks them out. Both of which I find highly entertaining.
5. I am an inexpensive dining companion.

Q. What are the most challenging things about having a feeding tube?
A.
1. The ‘social’ aspect of eating (I kinda stand out at dinner parties lol).
2. Regularly scheduled tube replacements (there is a ‘regular’ way for things to happen, and there is a ‘Meg’ way for things to happen; whole different ballgame)
3. Being attached to a ‘leash’ (aka my body being attached to a bag full of formula or water via tube) for up to 22 hours a day gets tedious YET also inspires creativity in all things ‘wardrobe’ related!!!

In trying to find the right words to tell you what this life changing thing has taught me and who it has helped me become, I found there were too many; therefore I leave you with this;

~366 days ago, I was ‘meg’.
~365 days ago I began the journey, the battle and the collecting of joy, which make me; the ‘work in progress’; woman you know today, ‘Meg’.

“It is in the fight for life, that I continue to discover my true value; and it was in the realization of my own insignificance, that I learned my true worth.” (~SGwPD)

 

 

Introducing ‘Meg, Warrior Princess’

By ~ Meg Urquhart~ 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 be 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 lost, confused and bewildered. Who was I?

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.

Meg and her kids, 6 months later at the Parkinson’s Walk.