This swing, this Tarzan swing, was a fixture in our back bush for my entire childhood. Apparently I learned to hang from it early. My dad doesn’t look overly concerned. My older sister Diane seems a little more excited than he does.

As for me, well, it looks like I’m learning the thrill of adventure.

 

 

 

The image is dated May 1963.

I would’ve turned three in June of that year. Considering that back-in-the-day film was developed after a long period of slowly filling a roll, and if they only finally developed it in May, I’m going to assume I’m just over two-years old.

We had a few acres of bush behind our house at 33152 Cherry Street in Mission City, British Columbia.  There were tree forts and an A-frame cabin and a tower and a playhouse, all built by my dad and his daughters and scattered throughout the trees.

It also included a pond that provided me with a million hours of paddling around in the flat-bottomed boat that dad and I made in the garage. I remember mom wringing her hands and pleading with dad that I was too young to use a skill saw. He won the argument. Actually, there was no argument. He just nodded at me to keep the blade steady as I sliced through the plywood.

It was in the garage that I learned how to pound in a nail, make a screw out of a nail with the handy little winder kept in the flat Players box. It never occurred to me to ask why my non-smoking church-going dad had a Player’s tin box modified with its own little wire closure.

With a paddle, a little stump to sit on and a big chain to throw over to anchor, I was set. The photo shows me seated but I often stood. My gumboots slid a little on the wet plywood but with a long branch I poled my way around our swamp always at the ready to solve any mystery that would surely present itself.

One only had to pay strict attention and look for the signs.

 

 

I think I was ten when I got one of my best Christmas presents. It was a large wood handled hunting knife in a leather sheath that looped through my belt. Along with a magnifying glass in its own leather case, I was set for any adventure.

If I could have just one more conversation with my parents, I would thank them for all of this…for knowing me well enough to realize that letting me run feral in the woods with a rather imposing knife and a magnifying glass was one of the best gifts of my childhood.

Lately, I’ve been mulling these things over as one does as one gets closer to the exit side of the stage. Okay. Enough with the formal English. I’m talking about me. Obviously. It’s me that’s getting further from the entrance and closer to the exit side of our imagined stage.

It’s a funny thing about Parkinson’s disease, well, really it’s not funny in the usual sense…let’s call it interesting instead.

Yes, an interesting thing about PD is that though I have always been a pondering-reflecting-contemplating kind of person, PD has given me a lot more time to do so. Because, when the wind is taken out of my sails, which happens on a very regular basis, it provides a ton more time for the aforementioned pondering-reflecting-contemplating.

It’s hard to explain. If you’ve seen me riding my e-bike into town which is a round trip of 20+ kms, or you’ve seen me walking the trails in the morning, you might think I’ve got this all sorted. What you don’t see is when it all goes to hell. And go to hell it does.

And that is when you will find me back in bed at noon or staring at the sky while lying out on our deck. Sometimes, as much as I’d wish otherwise, this won’t include reading a book because another fun fact about PD is that often my vision is just blurry enough to make reading too tiring. Parkinson’s affects the ability to swallow (which also affects the voice) and it even slows blinking which leads to those blurry eyes.

The whole point of Parkinson’s is to grind me to a halt.  It’s not just the slower walking. It’s all those things that run in the background, those things you never consider, like swallowing and blinking…they are all s-l-o-o-o-w-e-d down.

Another fun fact. The fatigue is not fixed by more sleep. As well, the feeling of always feeling some version of unwell is not fixed by anything I’ve tried so far.

I never know when or what will trigger an ‘off’ period. But often, it’s about an hour or less before taking my next dose.

During the day, I live in four-hour intervals. 7 am is the first two pills. I wait one hour before eating any food as it interferes with the uptake of the drugs.

11 am is the next two pills. Most days I don’t have to look at my watch to know I’m somewhere between ten and 11 because the ‘off’ feeling ramps up. Michael J. Fox, the PD hero of us all, described it as, ‘waiting for the bus’ . That is accurate. Once the 11 am meds are doing their dopamine work, I board that bus and slowly return to a more accurate version of what I think of as myself. I can then eat at noon.

The next two pills are at 3 pm. Some days coming up to three is a painful minute-by-minute watch. I fervently will the time to come a little faster, wishing the pain that is making my neck more and more rigid to just leave me the hell alone.

But guess what? It doesn’t let up. Unless, like today, it suddenly does and I’m stunned to find my neck has mobility, and though stiff, is not trying to tear my head off. Which is why, dear friends, I feel like I can sit here and write this post. Right now, my neck doesn’t hurt!

This is a welcome bonus. It would be even more lovely if I could have some control over the timing. But that would make it too predictable and then presumably, I could even, perhaps (gasp!) work around those off-periods. But the most humbling aspect of this disease is that there is no rhyme nor reason to when any of this happens.

And finally, there is the 7 pm dose. We’re now trying to eat at 6 pm so that I have an hour before I take the pills. We could wait and eat at 8 but that is when my energy is most often at its lowest so that doesn’t really work.

Here’s what every PD site tells me…it’s important to keep moving. The disease wants to slow me down, grind me to a halt. The key is exercise, exercise, exercise. What they fail to talk about is that it is often the exercise that is the very thing that makes me bail on the rest of the day.

And so, here we are, back to sitting and staring at the sky and pondering my childhood and my life …as one does (sorry, couldn’t resist).

Besides sending thoughts of gratitude to my parents for my wonderful nature-filled childhood, I am ever-so-grateful that I found a man who, like me, knew that though money was important and ever-so-handy, the most important thing was identifying when we had enough.

I love that we both agreed we wanted time more than more money.  I am so so grateful that we did things contrary to what was expected. If I had retired at 65 last year, it would have been with a diagnosis of Parkinson’s. Instead, we’ve enjoyed decades of adventures.

I am not saying all our adventures are over. I hope they’re not. But now, as one friend said recently (she also has PD), “Every other adventure is a bonus now.”

But man, oh man, am I glad I got on that Tarzan rope as a kid.

I’m glad that I survived jumping into the Oribi Gorge.

 

 

I’m glad we trundled across Canada with our little trailer. I’m glad we drove all over Mexico in our van. I’m grateful for all those long European walking trips.

I’m grateful for this life.

I’m grateful for the time I’ve been given.

I’m grateful for the trees and the mountains and the ocean and all the other places we’ve lived and traveled.

Am I grateful for Parkinson’s?

Well, no, I won’t go that far.

But I am grateful for the people I’ve met as a result, for the honest conversations, for my increased empathy, for a larger awareness of invisible disabilities, for access to Canadian health care, for friends who accept what they cannot see, for my responsibility and purpose in helping to  promote understanding about this disease that affects so many…and most especially…for the man I married.

I am ever so grateful that my twenty-three year old self identified Kevin Redl as the right man for me.

Turns out, he has been the best adventure of them all.

 

 

“Love does not consist of gazing at each other, but in looking outward together in the same direction.”

– Antoine de Saint-Exupéry