~ 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. BUT, she 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.
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”.