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Julia's Journey

Parkinson’s as an opportunity

I spent 25 years working at an insurance company. I didn’t have a life-long passion for insurance, but that’s how life turned out for me. Not once did I stop and ask myself: am I happy there? I said to myself: there are mouths to feed, got to make a living. And then Parkinson’s came along and that was my opportunity to stop.

Getting my diagnosis was a formative moment for me. Clearly something was going on there. This isn’t to say that I was delighted with it, but it didn’t feel like the world was coming to an end, either. There was an inner voice that said to me: there’s something good for you in it, you’re going to make it work for you. I didn’t feel like a victim, I felt powerful. I can’t explain it. So I made a conscious decision to shrug off the small stuff.

I started asking myself some existential questions. What is my calling in this world? What can I do that’s helpful? And soon enough I had my hands full. I became very active and outgoing, running from one meeting to the next, doing things that matter. Who has time to be sick? Who has time to feel miserable?

Early symptoms and late diagnosis

I was 50 years old when I was diagnosed. In hindsight I realize that I had had many symptoms, such as digestive tract problems, and all kinds of small issues that were each treated separately. Nobody took a step back to look at the full picture, and so it took time to put all the pieces together.

Even when my motor symptoms began my doctor didn’t immediately refer me to see a neurologist. He probably thought I was too young to have Parkinson’s. But when I look back at pictures from when I was 40 and I see my posture, I know the early signs were there.

Maybe first-line doctors aren’t sufficiently informed on Parkinson’s or they don’t always know what to look for. Or maybe that was the case when I was diagnosed 16 years ago, and things have come a long way since. Either way, it took very little time for my neurologist to diagnose me with Parkinson’s, and by then, I wasn’t surprised in the least. I guess deep down inside I knew that was a possibility even before any doctor could tell.

Going with the flow

My diagnosis has led me to be more attentive to myself and my surroundings. Before I was diagnosed I had to understand everything before I did it; now I don’t ask as many questions. As soon as an idea pops in my head I just go with it, see where it leads me.

I feel like I’m on a journey, following something inside me that I can’t fully understand. It sounds a little poetic, I know, but that’s how I think of the way I now look at things. I’m not going to figure everything out using my mind, some things are beyond me. But that doesn’t mean I can’t go with the flow, and who knows? Maybe there’ll be something for me to gain.

I’ve also found myself acting more intuitively than before. There’s less planning, less “dry runs”. To me it has been a blessing. I am really curious to see where things lead me in life. I form my actions as I go along, not necessarily knowing in advance how things will turn out. This was a real personality change from how I was before.

Arts and crafts

I was a professional office manager for most of my career and had nothing to do with arts and crafts. Sure, I was creative, even as an office manager (if you can believe it), but not crafty. As I was waiting for my appointment with the neurologist, which was a few weeks ahead, I found myself doodling and I just let my hand do whatever it wanted to whatever piece of paper was before me. I realized something was happening to me.

Doodling, then drawing, gradually turned from a skill to an irresistible urge. I couldn’t not draw. I spent entire nights drawing, somehow feeling that my doodles and my drawings were talking to me, that they had a message for me. I was overwhelmed with curiosity. For example, when I discovered that my watercolors faded over time I started to investigate ways to prevent this, and this led me deeper into the world of arts and crafts.

Sure, when I’m down, my art shows it. If you look at some of my earlier drawings you can see that a couple of them are very dark, with lots of black. But there’s always at least a sliver of optimism, even in my darkest works.

Family and help from others

It turns out my husband took my diagnosis a lot harder than I did. I later found out that he spent days crying on his brother’s shoulder. He was certain that life as he knew it was gone forever. My children at the time were in their 30’s and it was quite a shock for them, too. You see, I am a bit of a pillar in our family, and when that pillar was shaken everybody felt like they had lost their footing.

But I didn’t feel that way. I used my energy to calm everybody down. It worked at the time, but today my strength can be a two-edged sword: I don’t always know how to ask for help, even when I really should. And with this disease you need more and more help as time goes by, so every once in a while you need to re-evaluate your situation and communicate your changing needs to the people around you. My family are so used to thinking of me as the strong, independent person I am inside, that it’s hard for them to think that I might need help, and I need to learn to ask.

Also there’s a fine line between getting help from family, and people derailing their lives for no good reason. For example, my mother-in-law had planned to move into a retirement home, and when I was diagnosed she thought she should cancel her move and stick around. It took some convincing to make everybody realize that I really was doing fine and that they should carry on with their business. When I need them to change their plans, they know I’ll tell them.

Message to others with PD

Sometimes when someone gets sick they find that many people around them disappear. For me it was the opposite: so many doors opened up. I want people to know that there is such a thing as living with Parkinson’s. There is light in all this darkness and sometimes you need to help people find it.

Before my diagnosis I was bored out of my mind at work, but I told myself I couldn’t quit, so I decided to study to become a group therapist. Now that I’ve been diagnosed I use this skill to lead groups at my local Parkinson’s association, working with patients usually through art. I see this as proof that I’ve always been in touch with my inner needs, even when I didn’t realize I was.

People are almost appalled when I say I feel I’ve been blessed. They often ask: how can you say this when you’re dealing with this disease? But when I sit with them in group and offer them an opportunity to discover something about themselves that they didn’t know before, I feel blessed. Making a positive change in others is empowering.

 

 

The individual(s) pictured are not the contributor of the story. Names have been changed to protect anonymity.

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