The best is yet to come

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…

Followed closely by…

And likely ending with…

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 ~

~ Meg Bernard; Small Girl with Parkinson’s.

Wednesday, December 2nd, 2015 was my 5th PD-versary; the 5th anniversary of the day I received my official diagnosis of Parkinson disease. Although I was 33 at the time, now that we know what we are looking for, my symptoms can be traced back as far as age 19.

My PD-versary is a special day that I celebrate, in private, every year…though, can I really call something private when I excitedly proclaim it to my children the moment I see them (or anyone else for that matter); while also making and wearing a glitter glue “announcement”; pinning to myself like a badge of honour?…perhaps the best I can do is call it “mostly private” (thank you “Princess Bride”).

Last year, one of my small/tall daughters asked me a very insightful question, “Mom, why do you celebrate sad things?” My explanation was simple…I am not celebrating the fact that I HAVE Parkinson’s; I am celebrating the fact that I LIVE with Parkinson’s.

By celebrating the passing of another year, I am choosing to celebrate the beautiful life I have decided to live…Parkinson’s just comes along for the ride. As I reflect on the year behind me; though, without doubt, one of the most challenging of my life; I can truly say that I have never been more grateful or felt so blessed.

“WE ARE ALL given the gift of a new day simply by waking up. It’s up to us to find a way to celebrate it, share it, and enhance it.
“Lift hearts, lift spirits, rise above, find joy and live! In many cases things haven’t turned out the way we planned…but I can’t get rid of this feeling that the best is yet to come!” ~ SGwPD

~ With much love….