Parkinson’s makes me prioritize where I spend my energy

I’ve been thinking a lot about energy lately, as many of us have, with the high costs of electricity, gasoline, and oil right now. But I am not thinking only about the energy that runs the things in our lives — cars, heat, the very computer you’re reading this on — I’m also thinking about the energy we use to power ourselves. That energy comes at a cost, too.

Several years ago, before my life-changing (in all the good ways) deep brain stimulation surgery, I was truly a mess. At the time, I was still traveling 30 or more times a year and trying to keep going as if nothing had changed. I was in a job and an industry where I had lots of industry friends who traveled as much as — and more than — I did, and we often wound up at the same conferences and events. I had “outed” myself publicly as having Parkinson’s disease, and everyone was kind and tried to help. I needed it, too, as I was having a lot of obvious and weird symptoms.

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Where I spend my energy

It’s amazing how hard you can try to convince yourself everything is normal when everything is so obviously not. One of my most prominent and strangest symptoms was not being able to lift my feet when I walked. I would get stuck by a pattern in the flooring, a change in lighting, or nothing at all. I was experiencing freezing of gait, where I’d be unable to move and had to “reset” myself to be able to walk again. One way I learned to do this was by reaching out and touching someone, just a tap on the shoulder with my pointer finger, which would help get my attention off my feet and make them go again. Other times, I would “steal” a person’s momentum by having them walk past me from behind, and when they entered my peripheral vision, I could start walking again.

It is objectively weird to ask a work colleague — or a stranger on the streets of New York, as I did one rainy fall evening when I’d been stuck on a curb for three light cycles — to walk past you so you can “unstick” yourself from what to any healthy person is a completely clear path ahead.

I would come home from these trips simply broken from exhaustion, but proud of myself for pushing so hard. I would stumble into the house, drop my suitcase and computer at the door, and collapse into bed. It was messy, but I was doing it, bravely being a poster girl for how Parkinson’s wouldn’t change me.

But one day my husband said something I’ll never forget. He said: “To you, coming home exhausted and broken is an accomplishment. But all I get is the wreckage in the wake of the hurricane.”

I was spending all my energy on these other things, giving the best of my time, attention, and energy to everything but him, me, our friends, and our family. I was withdrawing and putting on a “show” that drained me of all of my energy. I realized I wanted to spend my energy where it really matters.

This wasn’t an entirely new concept to me, but sometimes you have to be smacked upside the head with a lesson until it sticks. My mother passed away from pancreatic cancer when I was 17, and while she was dying, she talked about how we all have a box of energy each day. We don’t always know day to day whether it will be a big box or a little box, but we can decide where to spend it.

I still struggle with my “energy crisis” all the time. How do I find the balance of using up every drop of my energy on the important things? But I believe this: Life is short. Human energy is nonrenewable. And everyone around you feels that energy. So be cautious where you spend it. Figure out how to balance the calm — and the storm.

And I know now that I don’t have to be the poster girl for anything. Things are different now. I have Parkinson’s. It takes things from me with every passing day, week, and month. And it takes some of my energy, but that just makes it even more important to prioritize where I spend it.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.