There is Life Beyond Stage Three Parkinson’s ~ Live like we are living!

~ By Meg Bernard ~

*An apology to my regular readers; a sidetrack in the ongoing series of “Small Girl’s Souvenirs” just HAD to happen*

EMERGENCY FEEDING TUBE CHANGE #3

No joke! On Thursday, February 25, 2016, I received my 3rd PEGJ feeding tube in 3 weeks…my 8th tube during this past year (ideally I should just be receiving my third right now). But let me back up a little…

For those of you who don’t know her, this is my co-anomaly Jasmine! She has Parkinson’s disease, which has resulted in a paralyzed stomach, JUST LIKE ME! As much as I wouldn’t wish this upon anyone, I’ve got to admit that having a ‘partner in crime’ rocks.

PD tends to be measured in stages of 1-5, with 5 being the most severe; I’m sitting, centre stage, at a 4…(I would bow to the applause but it hurts to bend my back)

Thursday morning, I was feeling some concern caused by the realization that there is fear, sometimes terror, in the hearts of those living with PD in regard to the inevitable arrival of…well, anything higher then a 3. I agree that it is a frightening thought; I’m living it, so I can say that with authority! Stage 4 robs us of our independence; it takes away the ability to walk without assistance…but what caused my concern is that many consider it to be the beginning of the end; that some look to this future and see it as a life not worth living; where as Jasmine and I have made the decision to never stop living.

It was in the midst of this frustration that I hurled out the words;

“There is Life Beyond Stage 3 Parkinson’s!!”

I suddenly realized that I have reached a new place in the middle of my ‘story’ with PD; two paths have converged. Not only am I raising awareness that there are young people with this wicked, cruel and debilitating disease but also; due to the rapid progression of my particular version as well as the unexpected symptom of a paralyzed stomach; I am also raising awareness to those who do have PD; that there is life after stage 3. We are not going to give up; nor will we to give in to the primal anger, rage and fear in order to fight this; instead we are stepping forward, with primal hope and love, and we are going to live this! We have decided to…

Live like we are living; not like we’re dying!

…a few hours later, I rushed to the hospital to get an emergency feeding tube change; my third in 3 weeks; my feeding tube had, once again, ended up leaving my intestines and landing in my stomach, where it does nothing but cause debilitating nausea instead of allowing my body to absorb nutrients and hydration. It also, frighteningly, does not allow my body to absorb my medication; my lifeline in this disease.

Yes, my tube had (for the third time) left it’s happy home in my intestines, for an inhospitable place in my stomach, because the peristaltic waves that our intestines need to move food through our digestive system; the ‘pull’ of which being a huge part of what holds my feeding tube in place; are now almost non-existent. The surgeon added 3″ onto the length of my tube in the hope that it will sit far enough into my intestines that it will stay in place. I will now be eating almost 24 hours a day in the hope of maintaining my, already too low, body weight.

Jasmine and I are living proof that life doesn’t end when your nervous system stops working. We are living proof that happiness and love can overcome the darkest days, the toughest illness can bring.
We refuse to sit on the curb and give up; we choose to stand tall and face whatever comes at us head on!

As we do so, we invite you all to join us as we

“LIVE LIKE WE ARE LIVING, NOT LIKE WE’RE DYING!” ~ (Jasmine and Meg)

Much love ~ Meg; SGwP

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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 the Souvenirs of a Small Girl with Parkinson’s ~ What legacy will you leave?

By Meg Bernard ~ SGwP

I want to leave a legacy; a piece of myself; a souvenir of my life; something that will remain on this earth long after I do. A legacy that will; with huge smiles, arms spread wide, and an open heart say, “Meg was here and she loved each and every one of you!”

My desire to do this is hard to explain, but there is something inside of me that has, with great determination, been telling me to do something about this desire RIGHT NOW! (I can be rather bossy and impatient with myself on occasion)

My greatest legacy is, and will always be, my 3 gorgeous children; each one a flower; the rarest and most beautiful of all flowers; that has both bloomed and thrived in the midst of adversity. I will be forever grateful to have been their mother; that I was given the gift of helping them discover who they truly are.

I have had, what some might call, a strange life. I know that all of us have had our own unique challenges and experiences; some happy, some sad; but I’m just brave enough to admit that my life has been seriously?-‘no way!’-crazy-unique. These experiences, and the way in which they have influenced, molded, and shaped my life; have been nothing short of a long walk through a refiners fire.

So while pondering what my legacy might be, I realized that sharing my experiences; my treasures, and the person that I have become because of them; could be an amazing legacy if it helps even one person through a challenging time.

STOP!!!
Now don’t go all freaking out on me; thinking that I’m doing this now because my hand is on the doorknob of death’s door!!! So put that out of your mind right now! None of us knows how long we will be given; none of us knows what tomorrow will hold; and I do not want to have missed the opportunity to have shared some of my pearls…my treasures.

So, over the next few months I will, at random moments, (to be Meg is to be random) share with you some stories about the small girl’s Souvenirs of Life’.

For today, I shall leave you with this…

Looking toward the future can be a hard thing. Sometimes, just to stand it, I need to view life a week at a time; a day at a time; an hour at a time and yes, sometimes it comes down to a breath at a time. But then there are those days when, like a breath of fresh air, I look into the future and stand tall. Instead of a veil of darkness and unknowns, I see a sunlit field full of life and possibilities, and I smile! My life will never be what I planned it to be; whose life is really; but instead of wasting time dwelling on what I am and will miss, I’m going to rejoice in what could be.
When My time comes to sing my death song, I will do so with a smile, knowing with confidence that I have not lived like I’m dying; I have lived like I’m living.” (SGwP)

Much love ~ Meg

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“Keep your face to the sunshine…”

 

Small Girl with Parkinson’s writes a poem, then wonders ~ How do you survive your storms?

~ Meg Bernard; SGwP

Do you have a storm?

It may sound like rhetorical question; and now that I stop and think about it, you’re absolutely right, it is; so feel free not to answer that one as I am confident that we all have what could, metaphorically, be called ‘a storm’ as not one of us is immune to the pressures and plot twists of life. I shall therefore change my question slightly…

How do you survive your storms?

*Sidenote* It’s quite possible that some of you are thinking “umm…Small Girl…wasn’t it just this past spring that you went on and on about your love for thunderstorms and how you dance with the rain etc etc…so what’s with this ‘surviving a storm’ thing?” A very good question dear friends and with it a very good answer; I like REAL thunderstorms, you know, the ones that actually get me wet; the ones that live in my head? Well…not quite so much.

So here we all sit, facing our storms. Can’t go over them, can’t go under them, can’t go around them…straight through them it is.

To answer to my own question; as a singer, a songwriter, a lyricist, a writer and a lover of words; there are times when I find that some of my thoughts are best expressed in the form of a poem. I ask for your indulgence as I do just that.

STORM

“Where once was light, in darkness, gone
What once I knew, forgotten, wrong
That place, with soaring wings once flown
Now lay concealed, a thing unknown

“With every heartbeat torn and tossed
With every effort given, lost
When misery enslaved my mind
In that dark moment I did find

“A spark, from embers deep inside
Behind the broken parts did hide
And with each breath I felt begin
That single spark catch fire within

“When all around me shattered; broke
The fire inside, new life awoke
Then, fueled on by the fight I give
It’s in my storm I learned to live

“Courage in my veins; it flows
The strength inside, like lightening, grows
With whispered prayer, I face my fight
My fire, glowing, stronger, bright

“Moving forward; leave my past
What fire creates is built to last
The life I lost, I will not mourn
Bring on the rain, I’ll take the storm”

How do you survive your storms?

Much love ~ Meg

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Are your doctor’s scared of you yet?

By Meg Bernard, SGwP

IT’S OFFICIAL! As of this past Monday I have had 7 emergency J-tube exchanges in 10 weeks; 4 of these took place just a day apart. This realization has me skipping down supermarket isles, giving high-fives to all the shoppers I pass who are, of course, just as thrilled as I am; the supermarket, most definitely, being the first place you would expect find a girl, who can’t eat food, when she’s celebrating.

So, while singing along to Lesley Gore’s “Sunshine, Lollipops and Rainbows”; shaking pom-poms; and doing high kicks; I’ve let my mind wander to hospital visits gone by….whether the visit is planned, or I’m racing full speed to the emergency room, there is a vision that never fails to lazily swim to the forefront of my mind….

It begins with Dr. Joe (I couldn’t use Dr. Smith, as natural reflex would demand, because he exists in the form of my brother-in-law). Dr. Joe; straightening a sparkling white lab coat and pouring that first cup of coffee; greets colleagues with a Colgate smile and a casual ‘hey there’ as they walk by.

Having had a decent nights sleep; with The Carpenters ‘Top of the World’, number one hit from 1973, playing on that ‘continuous repeat’ cycle in the back of his mind; with a distinct ‘spring’ in each step and a decidedly ‘can do’ feeling in the air; Dr. Joe is certain that nothing could ruin this ‘feel good’ moment!

*Enter Nurse Jenny*

Biting her bottom lip, and with a quivering hand, she gives Dr. Joe a tentative tap on the shoulder, “Dr. Joe?” she says in a quiet voice, “I need to talk to you about a change in today’s schedule”. With smile intact, ready to wish nurse Jenny a cheerful “good morning!!” Dr. Joe spins around. Upon seeing the look of terror in nurse Jenny’s eyes, said smile is immediately replaced with a wild look; one which bears a remarkable resemblance to ‘deer caught in headlights’; Dr. Joe’s cheerful words are immediately replaced by,”please don’t tell me….” to which nurse Jenny replies “Yes, Dr. Joe, it’s Meg…”

The scene that follows this moment in my mind cannot be put into words, so for your enjoyment I will let pictures “do the talking”.

First there is…

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Followed closely by…

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And likely ending with…

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Despite the image this ‘witty dramatization” may bring to your mind  regarding my history as a patient, I would like to point out “IT’S NOT MY FAULT!” Nor is it the fault of any of my doctors who; if all else failed; would go so far as to hold my Jtube in with Duct Tape or super glue if possible. I’m certain I would have been given the world’s largest ‘gold star’ if these things were based solely on effort. But many, many, moons ago we all came to the realization, that if something CAN go wrong; when it comes MEG; it typically WILL go wrong (no ‘ish’ about it). Hey, a body doesn’t earn the title of anomaly, enigma, and beautifully misunderstood by being super easy to work with; this takes natural talent!

But with all this ‘talent’; the pain, nausea, frustration, tired eyes, sleepless nights, and very tear stained cheeks; comes the question “will this be my last time?” And whether it is or isn’t “how will I choose to live today?” After countless days of intense pain from both Parkinson’s and a feeding tube that refuses to stay put; after countless days of wretched, constant nausea and dry heaving; after countless days of forcing medication  via J-tube, knowing that this particular tube could last me a day or (I can only pray) a few weeks; I ask myself again “how will I choose to live today?” The beauty of the answer? This is the one thing, the ONLY thing that I actually get to decide.

It’s on days like this that I often recall these famous words, written by Robert Frost…

“Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.”

Remember my dear friends; live with no regrets; have courage and be kind; refuse to live each day like it could be your last, live like you are living and enjoy each breath!

Much love from The Small Girl ~ Meg

~ Sending eternal gratitude to those doctors who I owe every day of my life to; thank you for the gift of borrowed time ~

Questions from the Small Girl ~ How are you feeling?

~ by Meg Bernard ~ Small Girl with Parkinson’s

I have a station set up in my bathroom where I have all the tools I need in order to sit and crush up all of the various medications I take to help treat the symptoms of my Parkinson’s disease; or any other medications I may be needing to take at any given time. I mix these crushed medications with water, turning them into suspensions which can then, via syringe, be injected into my intestinal feeding tube. It has to be done carefully and properly and it has a tendency to be slightly time consuming, yet I am grateful for this life-saving gift.

I keep the area I work in tidy, clean and organized; it reduces the risk of a mistake and it makes my job a lot easier; BUT there is one thing that I always do that tends to make my space look slightly more chaotic than functional…

You see, I learned early on in my ‘tube feeding career’ that spills happen often, and I discovered that blue dry-back dental bibs work as a perfect cover for my workspace! Each day I pull out a new one and place my tools on top of it, tidy and ready for use. BUT, I also learned something else about the blue dry-back dental bibs; they are PERFECT for writing on!! It is on these dental bibs that my chaos is created; I can’t help but write down my thoughts, appointment reminders, items that need to be purchased, questions that come to mind or things I simply want to learn more about. As each bib becomes covered in words, it also becomes my version of a masterpiece.

A few days ago, as I was letting my mind wander, I scribbled down a thought; a combination of questions actually; on my dental bib, and as I stared at the words in front of me I realized that I wasn’t sure of the answer. Perhaps I could make up an answer or two; something generic and ‘all purpose’; but ultimately, seeing as I couldn’t genuinely answer the questions when I asked them of myself, how could I, in honesty, answer them if they were asked of me by a friend or acquaintance. These are questions that have plagued me for years and I have a feeling that many of you may feel the same way.

I took a picture of the words on this particular ‘dental bib’ and decided to share the photo with you. Perhaps if we work together we can come up with an answer; or perhaps there is no answer; in which case at least we have the comfort of remembering that we are not alone…we’re all in this together…

Much Love ~ Meg; SGwPD

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Rantings of a Small girl with Parkinson’s ~ Hospital Edition

~ Meg Bernard; Small girl with Parkinson’s.

Allow me to set the stage for the telling of my ‘true life’ story ~ October 26, 2015; the early hours before dawn; a 4th floor room, on a Neurology unit, in a hospital; my hospital; BUT, it could, just as easily, be a hospital in your city….

~

It is 4 o’clock in the morning, I’m in the hospital…again. It’s impossible to doubt; this has been one of the most challenging experiences of my life; I can’t wait for it to end. This isn’t my first hospital stay; not by a long shot; but I’m determined it will be my last.

Today brought a new comer to the room I currently call home. She is 28 and living with MS, while I am 38 and living with YO Parkinson’s. Though our diseases are different, we have much in common; one thing being the frustration that comes from living with a disease that has so many invisible and ever changing pieces; easily overlooked and misunderstood by an uneducated observer; as well, our motor symptoms make us an easy target for those who live in ignorance of the world around them.

It was sad to discover that we have both experienced the largest degree of unkindness; judgement; criticism; disbelief and poor care; at the hands of people we thought we could trust the most…the nurses on the neurology units in the hospital.

** It is important that I immediately clarify that not all nurses and healthcare professionals fall into this category. I live in awe of the skill and empathy of so many in this profession. For those whom I owe my life; and for those who have; past, present and future; cared for myself and those I love, you have my eternal gratitude**

When admitted to a general neurology unit, it is common that I, at age 38, am the youngest patient. The majority of beds are filed with elderly stroke victims or those with serious head injuries; often making them incapable of being an advocate for their treatment, as well as their day to day needs .

ENTER MEG:  A young, cheerful, incurable optimist; who has a passion for life that cannot be dimmed. BUTshe is also a young woman trapped in a body that will not cooperate; living with a disease most expect to see in elderly people; a young woman who appears so small and harmless….

When suddenly, out of nowhere, WHOA! “JUMP BACK!” (shout out to ‘Footloose’)  

…”Are you telling me that this woman, with no medical background, actually expects; even demands; that she be an active participant in the ‘decision making process’ regarding her care? Who does she think she is?! It’s not like she has any experience”…

Oh, the stories I could tell you, my friends….

Pardon me? What’s that? You’re saying that you WANT me to share some of my “real life” with you? Well…since you asked so kindly…

My first story begins with something both mysterious and elusive; they call “Bedside rounds”. No no! It’s true! Just because you haven’t experienced it doesn’t mean it’s not there!

Legend tells us that “Bedside Rounds is a time for the nursing staff, coming on duty, AND for the patient to receive and share information regarding our care. Bedside Rounds can sometimes be a time for teaching residents and students. Bedside Rounds is a time of learning for everyone. And please be assured that your personal information will be kept strictly confidential.” So, you ask me, which part is elusive? BEDSIDE!! Please DO NOT stand outside my room, completely excluding me from the opportunity to learn and contribute to my care; which part is mysterious? Why are the rest of the patients on the unit hear all my private information while you discuss it in the hallway?…..B-E-D-S-I-D-E-!-! 

Now I will share with you the mythical tale of the “Parkinson ‘ON/OFF’ cycle”…apparently not proven and considered to be highly suspicious.

ON = meds working = improved control and mobility.

OFF = meds have reached the point of losing their effectiveness = loss of control over movement and often loss of independent mobility.

(yeah…right…)

As a person with Young Onset with PD, it disgusts me to have overheard this conversation between nurses in regard to me,”She was moving fine and didn’t need assistance getting to the bathroom half an hour ago, so why does she need help now? She must be faking it”. I sat with clenched teeth desperately wanting to dare someone to say that to my face. Yet I brush it off…I had been warned that people wouldn’t understand; I just hadn’t thought it would be these people. This is why I brought a cane, a walker and a wheelchair with me when I came to the hospital. As my mobility varies, my method of transportation varies.

Which leads me to the time honored tale of “PARKINSON’S MEDS ON TIME”  which, apparently, got lost in translation. WHY can’t you accept that when I say that I can’t wait an extra 30 minutes for my medication that I mean  it? WHY don’t you see that I know what I’m talking about? WHY when I ‘heaven forbid’ take my own medication; this being the medication that I brought from home, the medication you don’t want me to have control over, the medication you will have to pry from my cold dead fingers to get your hands on so don’t even bother trying because I tend to bite; do you get so upset?  Would you want your ability to either move, or become a living statue, left at the mercy of a pushing red button; a call for help so often ignored? I can’t imagine you would.

Five years into my diagnosis I have grown a thicker skin; not caring  what is thought or said about me by people in everyday settings. But it is incredibly disheartening when the cruelest remarks come from ‘health care professionals’ who, instead of criticizing what they do not understand, should instead take a few minutes to look in a book (or google it!) so that a patient can be properly treated.

Even better suggestion; ask me to tell you about my disease; learn a bit about me instead of standing, within earshot of my door, complaining. My message for those of you who feel threatened because I know more about the disease that I live with everyday then you do, “be prepared, because I will “rain on your parade”.

Now, onto the thank you’s….

Thank you for adding to my stress; thereby making my symptoms worse.

Thank you for making light of the disease I am forced to fight every day by treating me, on occasion actually telling me, that I am the least important person on the unit and you will do your best to ‘get around to helping me’.

Thank you for putting into question my value as a human being by not assisting me in having the shower that I have been requesting for 4 days, thereby making it necessary for me to find a friend who was willing to drive to the hospital, pay for parking and then do your job…

…your job…the job you chose…the one you get paid to do…

After four days of asking, not one of you showed enough respect, enough decency, enough empathy or compassion to give what is considered a basic necessity. How sad.

Thank you for explaining to me that dry heaving isn’t vomiting; which means that it doesn’t hurt, isn’t anything of interest, isn’t a sign of any problem and therefore isn’t necessary to record…pause…this feels like the appropriate time to throw out a reminder; I have a feeding tube that goes straight into my intestines, bypassing my stomach; one cannot throw up what is not there. As a potential point of interest, I would rather throw up something than nothing. Dry heaving is incredibly painful and does not give any relief afterward, as ‘traditional’ vomiting would.

Thank you for standing right outside my door, laughing and gossiping about patients…

… She is alone; on her bed; pain wracking through her body, like a silent scream, as she attempts to mask the sound of her sobs. A river of, what could only be, never ending tears pour from her eyes as the reality of the news slowly begins to seep through the cracks in her mind; the ones she couldn’t seal quickly enough. Words play over and over in her head; shredding her heart as she grieves the loss of herself…myself…

…shamefully forgetting that you are surrounded by silent suffering. Surely there is a more suitable place for your fun.

More than once I have imagined what would happen if you agreed to step into my body for a mere 5 minutes. I can assure you, with full confidence, that in under a minute you would be begging and pleading to be released from the cage…

…cage…this cage…this cage which is my body…this body which is mine…the one I live in…everyday.

It is because this; no vacation, no weekends off, no leaving work to go home at the end of each day; that we, people with Parkinson’s, have been forced to become resilient; often silent; warriors. We have also learned a kind of empathy and compassion that we wouldn’t have discovered in any other way. Please let us show you and teach you what we have had to fight to learn, in order to become who we are.

It is now 5 o’clock. I’m feeling thankful for a sense of humour which is quietly giggling with glee as it plans some mischief to leave in its wake…every flashlight on the unit being hidden in an obscure location…. I wish you could see me smiling as I lie here imagining the mayhem; while I close my eyes and pray for sleep to find me.

~

I suppose I could end the scene there; allow you to draw your own conclusions; but what kind of advocate would I be if I didn’t clearly point out the moral of my story; the hard facts of my reality.

What it comes down to is this; I’m here to get well, not to win the ‘miss congeniality’ award. If that means that, by insisting on proper care, the staff don’t like me; I am willing to accept this.

The moral of my, true life, story turns out to be the opposite of a frequently used phrase; one that I despise and will never use; so listen closely. When it comes down to my life or my death; to being your friend or getting the care that I need; remember this…

“It’s NOT just business, it IS personal”.

~ Meg

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