NEVER SAY NEVER! ~ and fill out your personal directive

By ~ Meg Bernard; small girl with parkinson’s

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Time for a serious talk

I came across this quote the other day while helping my daughter with her homework..

“What you reject today, you could accept tomorrow. And what you accept today, you could reject tomorrow. Never say never unless you can predict the future.”
~Suzy Kassem

Upon reading it, my brain immediately went into ‘chaos mode’ as thoughts and memories came rushing in; like water bursting through a dam; causing me to tread water while I attempted to organize all the information into something that actually made sense. Why had this quote hit me so hard? Why had it triggered so many thoughts and feelings that didn’t seem to be related to each other? I continued to dig and sort; searching for the starting point of the tangent; and finally was able to pinpoint it with two words…Personal Directive.

*Side note* A personal directive is a legal document that allows you to name the person(s) you trust to make decisions on your behalf should you lose mental capacity and list the areas in which they have decision-making authority. In this document you can indicate your own wishes for treatment when it comes to life saving measures and end of life care. Anyone over the age of 18 is encouraged to have one; it should be reviewed and updated regularly.

Let’s go back about 6 years…
I have a tendency toward ‘oddness’ when it comes to all things medical; so at the encouragement of family and doctors I completed a personal directive. I chose a member of my family to be the person with decision-making authority, then went through the pre-designed form, checking off the boxes of things I wanted…like I was ordering off a menu…it was so simple. It should have set off warning sirens in my head that it took me all of 5 minutes to make some of the most important decisions of my life; you don’t get a second chance to rethink things when your heart stops beating. I put the completed directive in an envelope and pretty much forgot about it.

As some of you will be aware, I am the recipient of many miracles. I have recently completed over a year of life that I was told I would never see. I have had a years worth of joy, frustration, pain and indescribable happiness that I understood to be improbable if not impossible. I have had a year of personal growth and renewed understanding of the world around me that is far beyond priceless. It hasn’t been easy; miracles sometimes require great effort on our part; but I’ve survived through things that never in a million years would I have imagined I would face, let alone make it through.

One of those things is Digestive Tract Paralysis caused by Parkinson disease. When the paralysis began I was originally fed through a GJ tube and have now had to progress to intravenous feeding through a central line that goes to my heart. This is how I eat. Without it I will die; yet with it I am still capable of living a beautiful and productive life. I hook myself up to my food (TPN) every day, put the TPN and the pump it requires in a bag over my shoulder, and off I go on my day. Yes, it’s awkward at times being attached by a “leash” to a bag; yes, it can be inconvenient and the pump is noisy and YES! I would love to sit down to a steak dinner with all the sides and then eat a whole cheesecake for dessert; BUT I’M ALIVE and, more important than any of those things, I’m happy.

Parkinson’s disease is an incurable, progressive neurological disorder and I confess that it sucks! I might be putting it mildly by saying that it hurts, I don’t like it, and I don’t want it anymore…yet the whole ‘incurable’ part doesn’t really give me a say. Regardless of any of those points, my life is most definitely still worth living!

(I promise that I’m getting to my point soon)

This past October I had deep brain stimulation surgery which is like having a pacemaker in your brain and it improves (not cures) some of the motor symptoms caused by PD. As it is a very substantial and potentially dangerous operation I was encouraged to review my Personal Directive so that if any emergencies occurred we would be ready. I pulled out the one I had filled out six years ago, brushed the dust off and started to read; as I did so my mouth gradually opened and by the time I had finished reading my jaw was on the floor. I put it down beside me, took a deep breath, and said; out loud, to no one in particular; “I SHOULD BE DEAD!” The thing is, I wasn’t referring to all the life threatening situations I had made it through, I was referring to the fact that, had I followed my own instructions checked off in my personal directive, I should have ALLOWED myself to die years ago.

WHAT?!?! (I know right?!)

I’ll explain…
There were SEVERAL, dare I call them ‘flaws’ and ‘was I drunk when I filled this in???’ moments in my personal directive, but I’m just going to focus on one small portion…

3. If I have an incurable, progressive disease in which life-sustaining treatments have been started and are keeping me alive, I want them stopped. I specifically REFUSE the following life support treatments:
a) Artificial feeding such as G-tube, J-tube or central line intravenous feeding.
d) Artificial hydration by intravenous line.
c) …..

Beside (a) and (b) I found a big ol’ check marks! In permanent marker no less!

I sat there shaking my head; reliving the past few years in my mind. When I filled out that form I couldn’t imagine that living with an incurable, progressive disease; being in almost constant pain, and requiring the need to be fed and watered by tubes could lead to a joyful and productive life!!!

Don’t feed me ✅
Don’t water me ✅

Ladies and gentlemen of the jury, forgive the ignorance of a woman who couldn’t see a person behind the disease, who couldn’t see beauty behind the tubes, and a life beyond the pain; for I live a most beautiful and rewarding life and I wouldn’t trade what I have suffered physically over what I have learned for anything; what could have dragged me down has only enhanced my life.

I have, on numerous occasions, had people say to me “I don’t ever want to be fed by tubes; I don’t want to live in constant pain; I could NEVER do what you do”. From now on when I hear those words I will reply with a quote:

“What you reject today, you could accept tomorrow. And what you accept today, you could reject tomorrow. Never say never unless you can predict the future.”

Have Courage and Be Kind

~Meg