‘How PD Made Me Stronger Person ~ …and changed my life, for the better

**If you haven’t read Part 1 I recommend scrolling back on the blog to read it.

These are small samples taken from the reports I would send to friends and family while I spent many weeks in the hospital this past winter, and the result, both emotionally and physically.

Warrior princesses aren’t invincible.

I’m in the hospital due to “Complications” with my Parkinson’s. No worries! I’ll lick my wounds; dust myself off; put on my favorite combat boots, and stride gracefully into battle…after they find out what’s wrong with me.

I am very sick.

Mid-night conversation with my nurse.

“I knew what kind of person you are the second I saw you,” he says “Yep, this is your breath between battles.”
“But I’m tired,” I say “I don’t want another battle”.
He turns and looks at me sitting on my bed, “Yeah, right now you’re tiny, and defeated, but YOU ARE supposed to do great things. So, rest up; a storm is coming and I have this really cool feeling that you’ll be right in the middle of it…..now go to sleep!”

I’m sitting in the dark on a balcony overlooking the atrium. The lights cast a calming shadow…this could be peaceful.

I’m remembering how many times today I’ve sat alone; doctors in front of me; my eyes on the ground; refusing to let tears out. Thinking “it wasn’t supposed to be like this.”

Like what?
What a pointless question!

The question that matters is “Meg, what are you going to do with it?”

SILLINESS

They came to take my blood before my first dose of PD meds. Asked me to straighten my arm. Seriously? She tried, causing a poorly contained scream of pain. Poor woman. No meds = painful rigidity. Fact.

I have a tube up my nose, and I decorated my IV pole like a Christmas tree. Does life get any better?

ROOMMATES

Through this whole experience so far, I haven’t lost my smile, but my new roommate Meghann (That’s right “Meg with 2 N’s”) brought back my ‘giggle’. I believe I’ve been sent an angel. We’ve bonded over toothpaste; and been serenaded by our nurse.

I thought of that quote about being a blessing to others in the midst of your storm. It’s something as simple as remembering a name; saying hello; smiling; telling the nurses they “so totally rock”. ‘Meg with 2 N’s’ is my blessing as she goes through her own storm.

Melissa and I are a “give and give” pair.

Midnight; the “blood taker” comes for 20 vials of Melissa’s blood.
In my half asleep state, I hear distress coming from her direction so I shout the first thing I think of…”ICE CREAM!” For 20 vials, we discuss the concept of “birthday cake” ice cream. 2-in-1. Brilliant.
Next morning brought a new tube up my nose and much sickness. I collapse; eyes closed; tremors from PD overwhelming. Suddenly a warm blanket, then another and another. I open my eyes. Melissa. Sweet service.

THE NEWS

I know it has been hard to watch. I hear “it’s not right, you’re too young”; witness tears of frustration; proud tears for my courage. They have amazing empathy. “How have you endured this,” they ask. Easy answer. I know I MUST be healthy and strong for 3 children. My strength and courage leave me in awe. I couldn’t have done it alone. Angels everywhere.

I now own a Gastro-Jejunostomy feeding tube (J-tube). It bypasses my stomach ending in the jejunum of my small intestine. This means food (which consists of only formula), water, and medication (crushed and made into solutions) all go into the tube. Nothing by mouth. I’m an inexpensive date.

I wish I had eaten more pie at Thanksgiving

CONFESSION

Today I hid…under my blankets.

I’m a bright woman, I was aware they knew where I was. It was more of a ‘hint’ thing. Slightly more subtle than yelling “Shhhhhh!”

Then I hear Annie having a spinal tap; I feel her pain and wish it were my own. I then hold her hand when just moments before I had been hiding. How does this happen? The change from thinking of our own trials, to being willing to take on another’s pain?

GOING HOME

Physically I’m not the same as I was, but I have gratitude for each day I live. But mostly I’m not the same person I was. I wouldn’t want to go back to who I was before, these experiences have made me a better and stronger person. A person I am grateful to have become.

Wherever we go, we plant seeds. Seeds of kindness, sunshine and mutual support; seeds that will grow into something strong, beautiful and nurturing, so that even in the most difficult of circumstances beautiful flowers will bloom. These flowers are what help us remember what is really important in life, the real purpose of our journey.

I am an unusual, and somewhat entertaining, dinner companion. For example, about a month ago I was at a conference and met with a group afterward for dinner. The waitress took orders, and when coming to me I said “May I have a glass of lukewarm water, please?” Now, I’ve ordered this, and only this, in every restaurant since December; I never get tired of the look of utter confusion that comes to my servers face; they typically shrug, mutter “okay…” and walk away. But this particular incident was different. This waitress said, “Why?” I was surprised but happy to reply “I have a feeding tube going to my intestines, I don’t take anything by mouth, and I’ll put the water I order in my tube”. This answer wasn’t good enough for her. She came beside me and said “Explain, please!” Thus followed an enjoyable conversation about PD and feeding tubes, I enjoyed educating her, but I also enjoyed sharing a bit about my unique story.

I then realized I have not shared my “not so secret ‘secret’ with almost all of you.

So in PART 1 of this blog I will do a bit of educating, and explaining. In PART 2 I get to share some important things that I learned from my experience; things that have changed my life.

DISCLAIMER: I AM NOT A DOCTOR…HONEST!

When it comes to my Parkinson disease, I’m an oddity, anomaly, special, strange, unique, and, my favorite, ‘beautifully misunderstood’. Our bodies have a vagus nerve which regulates our digestion. All people with Parkinson’s have some degree of damage to this nerve, causing varying challenges with digestion. Extreme damage is called gastroparesis, a condition in which the spontaneous movement of muscles in your stomach don’t function normally or, more rarely, NOT AT ALL. There are medications and therapies that help in most cases. The cause is often unknown, but a known cause is Parkinson disease.

My ‘beautifully misunderstood’ body chose ‘NOT AT ALL’. Over a period of time, the muscles in my stomach began to slowly stop working. I had no appetite; gradually felt sick every time I ate. My PD medication started working erratically with spontaneous ON/OFF periods. The time intervals between medication doses increased and I assumed that to be the reason for the increased nausea. I ignored my weight loss; my focus was keeping down medication, and so I relied on injections to combat nausea. Eating food was a luxury. My energy was such that sometimes after taking kids to school I would lie down on the floor because the thought of climbing the stairs was too hard. I was slowly starving to death without realizing it. This ‘small girl’ became ‘tiny girl’

One evening I felt something odd in my heart. It had a strange rhythm. NOW Meg becomes concerned (rolling of eyes). So an awesome friend agreed to spend the evening having a party in the emergency department with me!

This was the beginning of my journey. One of fear, laughter, disbelief, tears, joy, blessings, love, pain, sorrow, and miracles.

While at the hospital for many weeks, I wrote a report for my friends and family as often as I could.

“This is Meg reporting from the UofA hospital, 5^th floor, room 6”

I share the physical happenings but more so share what I was learning and how it was changing me as a person.

Part 2 is a collection of a VERY small portion of what I learned about life I invite you to join me on my walk down memory lane in, ‘Wherever we go we Plant Seeds ~ the small girl becomes totally tubular…and a better person.

Thunderstorms and I go way back. From babyhood on I’ve been a rain lover. I would open my window in the middle of the night, listen to the thunder and breathe in the smell of the storm. As a teenager, I would silently climb onto the kitchen counter, open the window and sit with my feet in the sink, enjoying the view. Interestingly, I still do the exact same thing as an adult. You’re never too old to sit in the dark with your feet in the sink.

Some favorite childhood memories, are running into the yard during a storm; bare feet; t-shirt; shorts; looking straight up at the sky and instantly the rain became my dancing partner, the thunder was music to harmonize with as I sang. It always ended with me lying on the grass; hands reaching to catch the water as it poured down my arms. I would hear the occasional “come inside or you’re going to get pneumonia”, which I would ignore and then giggle. I wanted to stay in my spot until the sky cleared and the last drops fell. Then, if I listened closely, I would hear the earth beneath me give a sigh of pleasure.

Not a summer has gone by without a dance in the rain. It’s not something a person grows out of. I have a memory of when my children were small. A storm began and I called out “let’s go dance!” They looked terrified. I heard mumblings of ‘scary thunder’. Oh dear; my children? Hmm. I ran into the storm, glancing over my shoulder and laughing when I saw my oldest with her arms crossed, shaking her head. Over the years, my neighbours have become used to my ways and I receive applause from windows and the occasional precious photo.

Life changes. Helen Keller said, “A bend in the road is not the end of the road…Unless you fail to make the turn.” But will we turn?

I’m 37 now; in spirit, much younger; physically, in some ways, much older. My body has been through a mini-series worth of experiences. I will never understand, and neither will countless doctors, the miracle of how this little body continues to run, and now, for the past 5 years, Parkinson disease has tagged along to further pester those insisting I wear a dress created from bubble wrap and duct tape. Less than a year ago I finally admitted that my balance had become such that a cane was needed as a constant companion; we have grown fond of each other. Much has changed; adaptations have been necessary; some things have been put away completely and are now only memories.

BUT, early every summer; the wind starts to blow; I close my eyes, breath in, and am certain that I am remembering the smell of a storm. My now teenaged children, taking the cane I put into their hands, teasingly cross their arms and shake their heads; but then beam as I wink and whisper “don’t rain on my parade!”

Two evenings ago, I had my first dance in the rain of the season. I felt a smile run through me as, without my cane, my body fell into movements from another time; muscle memory that hasn’t been forgotten. The rain was my partner; the thunder sang harmony; we danced together until bare feet, sundress and dripping wet hair all collapsed on the grass; arms reaching for the sky as the last drops came down. Then the earth sighed.

Life doesn’t go how we plan; the road turns and we either find ourselves at the end or we choose to turn with it. I have noticed during my life that some people feel the rain, like I do, while others just feel wet; that some people think only sunshine can be happiness, and then miss out on the beauty of a storm. But I can say with certainty, that life isn’t about surviving a storm, life is about dancing with the rain.

By Meg Bernard

“There is a place. Like no place on Earth.

A land full of wonder, mystery, and danger!

Some say to survive it; you need to be as mad as a hatter…

Which luckily I am”

~The Mad Hatter

I find silence challenging. When I’m alone I will sing, play music or put on a movie as background noise while I work on other things. I think, perhaps, it comes from growing up in a family of 6 children.

My background movie of choice very shortly after my diagnosis of PD was Tim Burton’s version of “Alice in Wonderland”. As a quick summary, it’s based on the story by Lewis Carroll but takes place later in Alice’s life. She is overwhelmed to discover that the purpose of her return to Wonderland is to become a warrior and slay the fierce Jabberwocky.

The scene I wish to share is a discussion between Alice and the Mad Hatter. After contemplating things that begin with the letter ‘M’, he speaks to Alice about slaying the Jabberwocky, to which she replies that she is incapable of doing so. The Hatter; confused; stops to look at her and says…

Hatter: You’re not the same as you were before. You were much more…muchier. You’ve lost your muchness.

Alice: My muchness?

Hatter: In there (he points to her heart), something is missing.

As I heard those words my heart froze. I stopped the movie and played back the conversation again and again. Finally, I had found it! The words to explain what I had been feeling inside for months. You see, the day I was diagnosed with Parkinson Disease, was the day I lost my muchness. Before that, I had been much more…muchier. Something WAS missing, my Muchness.

Gone was the extroverted, audacious, singing in the rain, pre-PD Meg (This might be hard to believe, but once; I was actually accused of excessive cheerfulness). Now I was introverted, quiet, no rain, no dance, hide from the world, post- PD Meg.

Outwardly I acted “normal”, pretending I was the same while gradually my lack of muchness pulled me down. I didn’t know how to explain why I was feeling this way or what to do about it. There were no words, just feelings. But NOW I had a name for it and NOTHING was going to take it away! So began my quest to regain my muchness!

Tell me if this sound familiar to you. Throughout the movie, Alice faces many challenges but has to carry on as giving up is not an option. By trusting herself and her friends, she finds strength and courage. She won’t let her fear of the Jabberwocky (PD) keep her from doing what she is capable of.

And then, in a moment of great danger, when fear threatens to overwhelm her, she squares her shoulders, lifts up her chin and makes a statement that has become a mantra in my life “Lost my muchness have I!”

Just as Alice had to fight to find herself, we too have to fight to find ourselves again. It won’t be quick; some days are easier; some days much harder; but since I realized my muchness was missing, I’ve never stopped working to get it back. I will admit that I am still not quite as ‘muchier’ as I once was, but my muchness is alive and well, and getting stronger all the time. Who knows, I could be accused of excessive cheerfulness any day now!

“When she transformed into a butterfly, the caterpillars spoke not of her beauty, but of her weirdness. They wanted her to change back into what she had always been…But she had wings.” ~ Dean Jackson

To my dear friends,

It may come as a surprise to you all, but this small girl has three small children. And so far throughout their amazing existence, I have created stories to help them and teach them. Each one has already faced down dangerous dragons and climbed monstrous mountains. And even though somehow in their short lives they have all grown taller than me (without asking!!!) they still climb up on my bed, cuddle in close, and ask for their story. This story belongs to my eldest warrior daughter, who is in the midst of a battle few adults could imagine; I stand in awe of her strength;  and she requested that I share her story with you because, in her words, “Mom, everyone needs to know they can fly”…and so we begin as I have always begun…

I have a story for you….

Once upon a time there was a caterpillar. She was a good little caterpillar, eating her leaf day after day, just like all the other caterpillars.

Until one day she realized that she didn’t want to eat her leaf anymore, something inside of her told her that she was meant to do more than just eat leaves. All the other caterpillars laughed at what she told them as they continued to crunch away, “what makes you think that you’ll ever be anything more than what you are? And why would you want to be?” they mocked “You’ll always be the same”. Our little caterpillar didn’t know how to answer their questions, she just knew what she felt inside, and so she ignored them and went her own way.

As she began her journey; searching, yet not knowing exactly what she was searching for; she began to feel tired. Finding a quiet place, our dear little caterpillar closed her eyes to rest, but as she began to drift off she felt something inside of her begin to change. A warmth deep down that was so strong it could not be ignored. Then in that moment, as sleep overcame her, that she knew she had found it, what she had been searching for. As she slept, our little caterpillar formed herself into a chrysalis.

One beautiful morning, our dear little friend began to wake up. She instantly knew something important had happened. As she slowly stirred, the chrysalis fell from her body. She felt something soft folded around her as the world came into view. She felt a little afraid, yet knew it was right, so with great effort she took a deep breath, spread her wings, and bursting forward she took flight.

She was no longer like the others; those who said she was different and strange; the caterpillars who now stared up at her from the ground, calling her wings ugly; saying she had wasted her time and should come back to her leaf. But as she looked down at them, she only smiled. She knew she wasn’t weird or ugly, she had finally completed her journey, finding who she really was, and what she was always meant to be. A butterfly.

She was never meant to stay a caterpillar sitting on the ground, this potential had always been inside of her. She had wings. She had always been meant to fly.

Dearest friends, in those moments when someone looks at you; seeing you as strange or different simply because you are different from them; stop; breathe; and take a moment to feel what is inside of you. Listen closely to your heart. Do you know who you are; do you see how much you are worth; that you have amazing potential; what you can become? I see it. If you haven’t yet then it may be time to start on a journey of your own.

It’s okay to be afraid, I was. But never doubt your strength. And always remember…

This could be your butterfly moment. You have wings. You were born to fly.

Much love,

~ Meg

~ A memory by Meg Bernard; sgWpd

 

My name is Meg; I’m a 39 year old mother of three and I have Parkinson disease.

I have been trying to think of a way to describe what it’s like to have such a disease; the best idea I came up with is to immerse you all in an experience a person with PD, who is attempting to do something many  see as an “everyday task”, might have, thereby giving you a small taste of what living with PD is all about. So without further ado; I bring you the true life story; not in the slightest bit exaggerated; of a visit to the mall….

**I will set the stage…3 1/2 years ago…a 10 minute drive from my house**

My son needed jeans; kids grow, darn it; and as he has autism he has a tendency to be very specific about what he wears; it’s Old Navy jeans or nothing. But this actually worked out well because I had to go to “The Mall” anyway to visit the Disney store…you see, this was the first year ever that I was purchasing my kids Halloween costumes; once upon a time, pre-Parkinson’s, my hands could easily create a dozen costumes in the month of October; it was my fun; my joy! Alas no more…in an attempt to find a bright side; the employees at the Disney store did wish me “a magical day”. They don’t do that at the fabric store.

But this visit to the mall had another ‘first’ to it. This would be my first public attempt at getting around with my latest accessory, a cane, to which my kids gave the name Jim. I was curious to see how that would go. So I set out to the mall; ready for an adventure.

Store #1 was the Disney store; I quickly made my purchases and, with ‘Jim the cane’ in one hand, my purse slung across my body, and two bags in the other hand, my initial assessment was “Awkward yet doable”.

**FREEZE FRAME** It seemed to appear out of nowhere, with a ‘dreamy haze’ around it, kind of like in an old movie…THE DRESS…a stunningly beautiful, elegant dress that was EXACTLY my taste and style!  I could picture myself in it…with the addition of my black, ripped leather jacket, fishnet stockings and black combat boots (to know me is to understand my wardrobe choices).

I entered the store and discovered that THE DRESS was out of reach even for a normal human being; let alone one of my ‘vertically challenged’ stature; so I asked a clerk to use her ‘magic pole that you can only use if you work there’ to get one down for me. She asked for sizes, assuming that I would be trying on a few in order to find the perfect fit…

**FLASHBACK** I’m standing in a change room, ‘frozen’ (Parkinson term that means exactly what the word says); having to ask a clerk to come in and help me take off the dress I was trying on (I’m still waiting on the invention of a time machine to erase that special moment).

…”Umm, give me an extra small. I’m not trying it on, I’ll just take it” I say. With a look of horror on her face, she announces to the entire store, “YOU’RE NOT TRYING IT ON??” With great self control I managed to keep my thoughts to myself as I continued to try and maneuver to the counter with “Jim the cane”, two bags, a purse and now a dress.

While all this was occurring, the PD dragon had begun to sneak his way onto the scene and my temor had increased to the point where I was unable to insert my debit card into the machine. Many frowning and disapproving faces were beginning to stare; after a deep cleansing breath and with a genuine smile, I asked,”perhaps you could help me?”

Then came THE ESCALATOR…Four words…“moving stairs of death”.

I finally reach Old Navy where I discover that the jeans I need are on the bottom shelf; which requires bending; which I could not do safely. I ask five clerks to help me, but each was too busy…After 20 minutes of attempting to get get assistance ‘Meg, warrior princess’ took over and before I can regain control I find myself announcing, in an extremely loud, yet very pleasant voice, “excuse me everyone, but if don’t receive help in the next 2 minutes I will have no choice but to perform a rousing rendition of “The Star Spangled Banner”…I don’t know why I choose that song, I’m patriotic and very proudly Canadian; but when ‘the warrior’ has been released there is no telling what will come out of my mouth…I had clerks by my side in a minute flat; apparently they weren’t interested in having a concert in the middle of the store.

Enter THE LINE. 25 minutes of leaning on “Jim the cane’ while balancing 3 shopping bags, a stack of jeans to purchase, my purse…when suddenly the unthinkable happens, MY MEDS WEAR OFF!!! The Dragon floods my body with a vengeance; rigidity kicks in; I lose my balance and bump into the lady in front of me; she turns and glares. I feel a panic attack building so I use every calming strategy I have ever been taught or heard of. When it’s finally my turn it is with small shuffling steps that I make it to the checkout; once I arrive, my arms are so rigid that I can’t actually put the jeans on the counter. The lady looks at me expectantly; with the dragon holding my tongue I manage to stutter out that she will have to take them from me…

…I see the way she looks at me, I’ve seen that look before. What she sees a hunched, crumpled, rigid and shaky old woman trapped in the body of a 36 year old. She sees a woman whose hands have become claws; I have to ask her to go into my purse, take out my wallet, remove my debit card, have her side it into the machine as I announce my PIN to the world so that she can punch it in for me. Yes, I’ve seen that look a thousand times…PITY.

I shuffle out of store #3 with “Jim the cane” being heavily leaned on, 5 shopping bags, and my purse, once again, slung across my body.

A lady, in a hurry, runs into me and sends all my things toppling…including me. Everything is everywhere. No one stops to help. I’m so exhausted and emotional by that point, that I would have offered money…or my first born (sorry sweetheart)…for someone to show some kindness; but it seems that everyone has someplace better to be that day.

I feel the hot tears burning in my eyes; but I stop; I breathe; I carefully get to my feet; then I begin to pick my things up one item at a time.

Once I’m loaded up and moving toward the door, I feel a moment of accomplishment. It is in the next moment that I hear a voice say “cripples shouldn’t go to the mall“…my heart feels like it’s being ripped from my chest; I can’t catch my breath; I stumble and lightly bump into someone who looks at me rudely and mutters “watch where you’re walking b****” I feel the burning sting of tears aching to fall, but instead lift my chin and keep walking.

My armload of bags, my purse, “Jim the cane” and the rest of me shuffle slowly toward the exit, wanting more than anything to be in my car and on my way home. I reach the doors and find that the buttons that should open them automatically aren’t working, causing my graceful exit to be less than graceful; but still, thankfully, an exit.

I head toward my car, which is not parked close because all the handicap spots were taken (almost half by cars without handicap placards) and I breathe a sigh of relief as I make my final approach.

KEYS!! Yes! I actually planned for this! I had them set in my pocket so that I could easily grab them and press the button that opens the hatch aaaaaand…I drop them.

That’s when it happened; I give warning that this may shock many of you; I swore. I did. Right there in the parking lot “DAMN THE MALL AND EVERYONE IN IT!!” Followed by a scream so loud that my children back at home probably heard it. “Ohhh am I going to be scolded by my son when I get home” is my next thought.

But then something else happens, I start to laugh. The hilarity of it all hits me and I laugh until tears pour down my face. I recalled my ‘glory days’ as the ‘expert teenaged shopper’ who lived to try on clothes, and loved the feel of shopping bags in her hands; and in the midst of my laughter I took an honest look at myself and I realized, I wouldn’t trade who I am now for anything.

Bruce Lee said, “Don’t pray for an easy life. Pray for the strength to endure a difficult one“. Now I know why. This is the woman who I want to be, “for no matter how hard the world pushes against me, within me, there is something stronger, something better, pushing right back” (Albert Camus)

As I stood there laughing, I intentionally dropped all my bags on the disgustingly dirty ground, worked at and succeeded in picking up my keys, put all the bags in the back of my car and drove home smiling. Why was I smiling, you may ask? Well, at least I hadn’t needed to use the bathroom!

~ by Meg Bernard

As you read this title, I imagine some of you thinking “Why Meg? Do YOU hide in YOUR closet?” and you’re quite possibly questioning my sanity, once again. But my question is real, and my answer comes with a confession. Charles Dickens said, “We need never be ashamed of our tears.”  and William Shakespeare said, “To weep is to make less the depth of grief.”

There are times I feel sad, there are many times that I feel joy, and there are times that I struggle with painful challenges, I feel positive that you also experience all of these emotions. What does this mean? An example of my own is that I have Parkinson Disease and a feeding tube, both of which have made me a better and stronger person, for which I am grateful, BUT as optimistic and life-loving as I am, I am also human and therefore sometimes I really hate these things!  Sometimes I feel sad, and sometimes I cry. Carl Sandburg said something that I find very profound; “Life (Parkinson disease) is like an onion; you peel it off one layer at a time, and sometimes you weep”. Parkinson disease is a progressive disease, so with each new development I do literally feel that I am peeling off one layer of myself at a time, and with it can come the need to grieve a loss before I am ready to grow into the new person I have become. As each one of us experiences new challenges, we will peel off layers of our lives, and sometimes we will weep. I strongly believe in the healing qualities of doing so.

I imagine within myself a crystal vase. If an experience occurs in my life that provokes the feelings of tears of joy or tears of sorrow I have a choice. I can choose to let the tears come at that very moment, or I can choose to save my unshed tears, collecting them inside of this imaginary vase. There are times in life that my vase fills slowly and other times when it fills with great speed. At either rate my crystal vase continues to fill until the moment when that one final tear drops into it, causing it to overflow, releasing with it all the emotions and memories that have been saved inside each unshed tear.

It is often, in these moments, that I take a pillow; several blankets; a box of tissues; and my cat; and I climb inside my bedroom closet. This is a place where I can curl up and gently pour out the overflowing contents of my crystal vase. I like the closet because it gives me a small dark space to be alone. No one interrupts me there. It is not a hiding place, my tears are not something to be ashamed of, but there are some moments that I need to experience alone. There are also moments that can and sometimes should be shared. In my family, we have all seen each other cry, and the experience of sharing joy and grief have created a solid bond of support and understanding. We have also become experts at the whole ‘group hug’ thing. I have also been blessed to find people who respect and care enough for me, to sit beside me even when they don’t fully understand my pain. I feel extreme love and gratitude for those who have done so for me and I am honoured when I am given the opportunity to do the same for them and others.

We all collect tears; whether visualized in a crystal vase or felt as emotions left buildings inside a heart; but there comes a time, for all of us, when we need to be empty, so that we can take a deep breath, stand up tall, and begin to fill the vase again.

As Washington Irving said “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition and of unspeakable love.”

“Circle the Wagons”

As a child, in my home, there was a particular saying that my siblings and I were taught from a very young age. We knew where it came from, and we knew its importance. Now as a mother, I have taught the saying and the urgency of it to my own children.

In 1843, the first major wagon train to the northwest departed from Missouri, on the Oregon Trail. Over the next century, thousands more would do the same. The wagons were typically covered, pulled by oxen or horses and held all of people’s worldly possessions.

When it started getting late in the day, the wagon master would send instructions down the line to “circle the wagons”. This call was to signal the travelers to move their wagons into a large circle and it was inside this circle that the families spent the night. During times of danger, this afforded them protection from attacks that came from outside the circle and allowed them their best chance of protecting those things which they held most dear.

I remember times when my parents would call us together as a family and say “It’s time to circle the wagons”. We instantly knew what that meant, as my own children do now. It meant that someone in our family needed saving. That one of us was in danger, scared, hurt, struggling, or simply feeling alone and friendless. The call to “Circle the wagons” is a call to each family member to come to the aid of that person. To stop thinking about ourselves and our own needs and join together as a group, surrounding what is most precious, and take care of each other.

Very recently I found cause to “circle the wagons” in my own family on behalf of a sweet daughter, and as I did so it brought to mind my other family, my Parkinson family, and I found myself wondering, do we need to “circle the wagons”?

My answer is yes, I believe we do. We all have our good days and bad days. We have happy days and lonely days. Doesn’t each one of us feel at some point that we are being attacked and need a circle of love and support surrounding us? How can we help each other?

If we are having a good day can we take a meal to a friend who is struggling? Can we make a phone call just to tell someone we are thinking of them? Can we drop off a book? Give a compliment? Write a letter? Invite someone for a walk or to support group meeting? I invite you to think of ways in which people within our Parkinson community can “circle the wagons”?

I like to think of the quote by Vera Nazarian “Was it you or I who stumbled first? It does not matter. The one of us who finds the strength to get up first must help the other”.

I invite each of you to help each other, support each other, find each other, and mostly, love each other. “Circle the Wagons” and we can through this together.

~An experience by Meg Bernard~

I woke up one morning last week with a song in my head “I’m not crazy; I’m just a little unwell. I know, right now you can’t tell (by Matchbox 20)”. With it came that awful feeling that comes when you are in the midst of fighting off an infection. I could also hear my PD in the midst of what I can only compare to a sinister laugh…something like “Mwahahahahaha…”

I don’t know about you, but my PD LOVES it when I’m sick!! As my body becomes distracted, working to fight off whatever germs have invaded, my PD decides that it is all powerful and gets to reign as supreme ruler! So I not only feel disgusting from the virus/flu/infection/plague, I also get the royal treat of a PD day!!

At one point after helping my children with a few things, I made it up to my room and collapsed on the floor next to my bed and just stared at the ceiling…for about an hour until I finally realized that I would probably be more comfortable if I got ON the bed instead of lying BESIDE it. I felt proud of myself for figuring that out after only an hour.

Sometimes strange things happen to me when I’m sick. This confession may shock those of you who know me! I recommend sitting down before reading it. Sometimes when I’m sick I get crabby.

It doesn’t always happen. It has nothing to do with normal PD anxiety. I just feel down right crabby, grouchy, stomp around the house, glare at the pictures on the walls (since I feel bad glaring at real people), slam the door and give a mighty roar, crabby!! I feel a need to find anyone who has ever been unkind to anyone I know and invite them over to my house, where I will force them to walk across a floor that is covered in Lego blocks…with BARE FEET!!!! Have you ever stepped on a Lego block with bare feet? If not I can say with firsthand knowledge that it really hurts!!!

It has been pointed out to me that when I’m crabby it’s almost like I’ve been possessed by a tiny grouchy fairy; which I find to be a strange comparison; but being crabby is not my best talent. In fact, people have had the nerve to say “Aww, you’re so cute when you’re crabby!” In fact my very tall 15-year-old will sometimes even pat me on the head and tell me I’m adorable, which only makes me crabbier, and then makes her giggle even more. I can’t win. Apparently I need crabby lessons because if the worst I can come up with is making people walk over Lego with bare feet then I have no chance of being hired as an interrogator…

In my pre-PD days, I was one of those people who would ‘power through’ illness. No way was that cold/flu/infection/plague going to slow me down! But I’ll share with you a story that taught me a serious lesson. It was that first big year of H1N1 where the line up for vaccinations were miles long. It was a frightening time for many.

It was October, which for me was costume making month! I love designing and making costumes! It had been decided by the family that we would go with a medieval theme that year! I designed ball gowns for myself and my 2 daughters. I turned my son into a daring knight, including armor. I lived on about 3 hours of sleep, but that was normal for that time in my life.

Halfway through the month I got a cold, but I was busy, so I powered through. The cold got worse, I powered through. It moved into my lungs, I powered through. I had to sleep in a recliner because I couldn’t lie down because of the congestion in my head and lungs, but I powered through…can you guess where this is going? By the time I finally dragged myself to the doctor it was found that I had H1N1 and by that point, terrible pneumonia. My doctor looked at me with concern and said “Meg, how did you miss this? Look at yourself!” I looked in the mirror and realized just how sick I was. I was ashamed. People were dying and I was so consumed with something as trivial as making costumes that I put myself and those around me in danger. I feel eternally grateful that no one else in my family got sick. Needless to say the sewing machine was put away…the costumes saved for another year.

It took a moment that serious for it to finally hit me that I only have one body and that I needed to take better care of it. That people were counting on me, not to make costumes; not to run all the school fundraisers; not to be super mom; they needed me to BE THERE, with them and for them, for many years to come.

I wish I could say that I didn’t have to learn this lesson a few more times, and that I don’t still need regular reminders, but I’m grateful for the wake-up call that I received that day. It was the beginning of a lifelong journey. I’m not invincible and I need to “put on my own oxygen mask first before helping others”. I’m grateful for those who continue to patiently remind me.

** Hint, Hint…this is my patient reminder to all of you!

It’s years later now and, as previously discussed, I have PD, which brings with it, its own extra special kind of exhaustion on top of the everyday exhaustion; add to that the ongoing recovery of the strength I lost before receiving my feeding tube; mixed with three awesome kids who need a mom to nurture them, love them, and take them to the orthodontist; I have to keep this message in mind constantly. Lives literally do depend on this.

Which reminds me, since everything and everyone is calm and quiet, this crabby fairy is heading for a nap.

~ by Meg Urquhart

In Japan there is an art form known as Kintsugi, which, when translated to English means “To repair with gold”. When a piece of pottery has been cracked or broken, instead of seeing it as imperfect and throwing it out, these artists ‘fix’ the broken parts of the pottery with a special powdered gold and turn what was once regarded by others as flawed into something seen as beautiful. There is an understanding that the piece is MORE beautiful for having been broken.

Not only is there no attempt to hide the damage, this art form embraces the flaw. The people who create these pieces feel that a crack is simply an event in the life of an object rather than the end of its usefulness.

Now realizing that every person is susceptible to the challenges that come with living in an imperfect world, what if we compare our challenges with the breaks, the cracks and the shattering of a piece of pottery? I am confident that there have been times in each of our lives when we have felt broken.

After my diagnosis of PD, there was a period of time that whenever I looked in a mirror all I could see were the cracks that were now part of me, and all I wanted was for those broken pieces to disappear and to be able to hide them from the world. I grieved. I mourned the loss of my perceived wholeness.

Then there came a day when I finally felt strong enough to pull my head out of the sand; to take my blinders off and rejoin the world around me. I began to meet and associate with others who had the same diagnosis, as well as so many others who were dealing with other situations in their lives that made them feel less than whole. Each one had been broken and yet, as I looked closely, each one had a distinct glow surrounding them. As I listened to their stories, attempting to discover where this aura had come from, I came to the understanding that we all have this potential and by sharing it with others we allow them to gain the insight into who they are capable of becoming as well. This gave me courage and hope because whatever I am going through, I am never doing it alone. It also compelled me to share it with as many people as I could because such joy should never be hidden.

So please, take a moment to visualize with me; imagine that, like a broken piece of pottery lying on the floor, you are internally shattered by whatever challenge you are facing; by whatever trauma has forced itself upon you. What would happen if you decided to see yourself as those artists see their treasured pieces of pottery? What if each one of us were to decide that we are no longer going to attempt to hide or define ourselves by what some might call damage or imperfections? What if we take those cracked and broken pieces scattered inside of our hearts, fill them with gold and then, not only use our newly strengthened, repaired and restored hearts to bless our own lives, but also allow the gold to shine for the uplifting and betterment of all those around us.

I believe that if we do this; if we look at the diseases, heartbreaks and challenges we are facing as events, as PART of our story, as a new beginning rather than the end of our usefulness, if we continue to fill our lives with hope, courage and fight; we can take what was once viewed as broken, and turn it into something that is not only beautiful, but MORE beautiful for having been broken.

As I have incorporated this concept into my life I have found that everywhere I look, I see streaks of gold shining through….and I know that I am not alone.

Much love ~ Meg,

#smallgirlwithparkinsons

#morebeautifulforhavingbeenbroken