I have always thought of myself as a fairly empathetic person.
Knowing that empathy could be learned, and that empathy is also more common in readers, as books offer us a chance to view the world through someone else’s eyes, it seemed I was on top of it.
As a girl who grew up with a mother who often repeated the idea of ‘walking a mile in someone else’s shoes’ combined with the fact that I spent a lot of my childhood under the quilt with a flashlight and the latest Trixie Belden, and, as I still read a large amount of fiction albeit without the flashlight, I was pretty confident I had the empathy thing pretty much dialled in.
However.
Let me back this truck up.
In the last couple of weeks, my ‘off periods’ between pill doses was getting longer. This meant that in the hour or two prior to my next dose, I would find myself feeling more jittery, increasingly anxious and my usual feeling of being vaguely unwell would amplify into feeling pretty darned shitty.
Luckily my appointment with my neurologist was scheduled for this past Friday, exactly at the time when I was truly ‘off’. I was shaking, walking stiff and close to tears when I explained to him, that this is NOT who I am. I confessed too, that I’d been reluctant to tell him about these periods, because I was pretty sure he would recommend increasing my dosage.
He looked slightly bemused at my confession. And, as I suspected, he advised me to increase my meds from my current dosage of two pills three times a day (six pills total) to two pills four times a day (eight pills total).
I was very reluctant to implement this plan. In my mind, it meant owning the fact that more of my dopamine-producing neurons had died and that this was the beginning of the slide to more and more pills. I knew this was mostly inevitable but I was not willing to admit I was already at this point.
The real fear, of course, was that the more pills I take and the longer I take them, the more likely it is that I will end up with dyskinesia.
I suggested an alternative. What if I switched to 1 1/2 pills four times a day? It would still cap me at my current dose of six pills but there’d be less time between doses so perhaps that could minimize the off periods?
“You can certainly try that,” he said, “But remember, if it’s not working, please move up to the eight pills/day.”
I saw him Friday morning and by Friday afternoon I was snapping pills in half like a pro. This was bound to work, right??
Turns out the reason he had that dubious look, was that I, once again, was delusional.
Still, I persevered, but it was definitely getting harder to function. By Monday, when I dropped off our car to have the summer tires switched to the winter ones, I had slowed to a bit of a crawl. It was becoming increasingly painful to stand, never mind walk. Still, the car was going to take 90 minutes and it’s not far from the tire shop to the mall…I would simply do a few errands and come back. But as I shuffled toward the highway crosswalk, I wondered if I would have enough time to even make it.
I focused on moving as well as I could as I watched the crosswalk seconds tick down. Made it! Now I had to navigate the mall’s parking lot which suddenly looked ridiculously huge. I thought of all our amazing walking trips, like the one in Wales, clocking over 25 kms/day up hills and through the tail end of a hurricane.
And now here I was. This. This was now my life.
I made it into the mall and immediately sat down on the bench in the entrance: the very same bench where you often see old people.
Yes. THAT bench.
And it was here where I began thinking about empathy or maybe it’s not even so much empathy I’m talking about but more of a humbling realization of why people might be moving slowly.
From my bench I watched a woman struggle past me with her cane. A little later an old man, hunched over his walker, pushed and skidded his way along the tiles. It occurred to me, that they weren’t just slow and doddering. Maybe, like me, they were slow because they were in pain. Why had that so rarely occurred to me?
I sat with the burning muscle in my left leg, tried to ignore that my knees felt like broken glass, and that my ankles…well I swear an X-ray would have shown that they must have recently been broken.
I took a deep breath, a very humbling breath.
It seemed all I could manage was to get from one bench to the next and the biggest factor was the pain.
And this is the lesson that most of you probably already know but I feel compelled to share just in case you don’t…that is, my mother knew what she was talking about when she suggested walking in someone else’s shoes.
Sometimes we (in this case, I), really need to feel what it might be like to be that old person who is taking too long to make the right change or seems to be taking forever to move ahead in the line. It isn’t always just a matter of slowness, they might be going slow because every movement hurts.
I am now dutifully taking eight pills a day. The 56 pills that make up a week is an impressive pile. I have mixed emotions with every pill I ingest. First off, I’m grateful to live in Canada and have access to medicines and health care that can help me but I also can’t seem to shake the scary thought of how, with every pill, I’m increasing my chances of dyskinesia.
You would think that having this same infernal back-and-forth conversation with myself (four times every day!) would mean I could eventually resolve the issue and quit thinking about it. You would think that. And yet…well, clearly you have never been stuck in my looping brain.
Still, my failed experiment with the lower dose served a bigger purpose. First off, it has profoundly deepened my empathy for others who are struggling. This disease continues to humble me and blow out all my assumptions about who I am and how I move through the world.
It seems I’ve always needed to be hit over the head to really understand something. I’m not saying I ‘needed’ this disease to learn a lesson because, seriously, that is such a punitive and bullshit view of the world. Instead, it’s like a new friend with PD recently said to me, “We may as well do something positive with this shitty disease.”
And that is what I’m trying to do with this post and that’s what I’ve done with my new PD friends. We’ve started a Parkinson’s group and are building community through support.
The takeaway for me, is this: faced with a crappy situation, what’s the best thing you can do with it?
Do I get this right every day?
Seriously?! Have you met me?
Still. Am I continuing to try? Most definitely.
Here’s the thing…I was a fool as a teenager and rarely thought of consequences until I’d literally put my head through a windshield or two. I’m offering you the chance to go to school on me.
So, next time you feel yourself wanting to tap your foot in irritation at the ridiculously slow person ahead of you…I hope you remember my story.
Take a long and deep breath, gather up all your most empathetic responses, and remember one of my mom’s other favourite sayings, “There, but for the grace of God, go I.”
Now more than ever, our world needs empathy and kindness. Let it start with us.
Your words and messages resonate on so many levels, Colleen: looping thoughts, epiphanies, resistance born from visualizing PD and its many varied pathways.
Woman, your contemplative nature, your insights, your compassion meet us in the depths of our hearts, minds and souls.
You are resounding.
Thank you, with core love.
Teresa, thank you for such a kind and thoughtful comment.
I’m trying my hardest to look for the best in the worst. Some days I’m more successful than others.
There are days that are simply ones to push through, carrying a fatigue so profound, it seems impossible to ever move again. And then, miraculously, the next day I will be entirely different and energized. Life and how it manifests is an incredible mystery.
Thanks again for your encouraging words. I’m so grateful that we spent that wonderful day with you.
It is so true no one knows what someone is going thru , always be kind! It is so wonderful to have a support group helping one another.
Laurie, isn’t it so true? We cannot begin to possibly guess what anyone might be dealing with.
And yes, being in a support group is so incredibly helpful.
I can’t express my thoughts like you, Colleen.
However, having lived with my mother in law who had PD , I come a little closer to understanding. And empathizing.
You are a model for all of us who are ,and will be facing challenges, physical and mental.
Thank you my friend ❤️
Colleen, I felt very touched by your latest blog on empathy and you recalled your walk in Wales, a journey which we partly shared with you, it reminded me of you then and knowing of your difficulties now I certainly feel a lot of empathy towards you.
It is so important to seize the opportunity when you can and to remember that everyone has difficulties at some point. You should not make quick judgments as you never know what a person is going through in their life.
I wish you good luck with the support group. Take care.
Colleen,
This is hard to read, but at the same time, your expression is at once wonderful, heartbreaking, and beautiful in a way that resonates with us all.
As always, my friend, you eloquently share your insights. It is a good lesson for us all…empathy.
I would sit on a bench with you anytime. Just sayin’
Another excellent blog – thought-provoking and perfect! I have similar thoughts. With two hip replacements, one only a week new, I have become so much slower. My ephiphany came about two years ago while stopped at a stop sign – a four-way stop. I was waiting for someone – a pedestrian to cross when they frantically signalled me to go first. Car versus human. I’m sure we’ve all had that. “You go, no you go, no you go…” Now I get it. I want to stand on a soapbox and holler from a mountain, “Can we all PLEASE be more empathetic and kind!”
It is just past midnight, and I couldn’t sleep, so got up and watched the moon light on the water for a while, and then read this. Thank you.
I recently had a conversation with Vanessa about the importance of finding the balance that is right for her between her need for autonomy and her limits of capacity. There is a sweet spot, but finding it ain’t always easy. Rock on, gal.
Oh Colleen I recently had this same conversation about “old slow people” with my sister who is also my travel partner.
I am now one of the “slow people” and my Sis never complains when I say I need to stop or rest or pop into a shop so I don’t have to walk for a few minutes to get the blood flowing back in my legs.
I look at how much you are continuing to travel and that inspired me so much a trip to Paris has been booked for my up coming birthday this winter. No more mountain climbing for me but goodness there are quite a lot of flat countries out there. Cant wait to see where you get to next
Colleen ~ Thank you. For most of us, it is difficult (if not impossible) to imagine the physical and emotional pain that PD delivers but there it is, you have captured and delivered it so eloquently. We are then left to sit on the bench and be humbled by what we do not know.
Thanks Anami. It’s so true that it’s almost impossible to imagine anyone else’s world. So many are struggling for so many different reasons. I think the best we can do is just be kind to each other and hope that it’s felt.
Thanks for sharing your insights and struggles. I’m feeling a newly discovered respect for my Dad and his struggle with this disease. He never really articulated the difficulty and pain he was experiencing. We just knew he didn’t want to use a scooter and we weren’t sure why. I’d guess now he just couldn’t imagine getting on it or off of it. I’m absolutely positive the support group is a gift to all of you. So great to find blessings in the little joys! Sending ???? hugs! Stay warm as we move into fall. Davina
Thanks Davina. I’m sorry to hear about your dad.
You’re so right that the support group is feeling like a true gift. We are definitely stronger together, something that is so true for so many situations.
It is certainly getting cooler out there. I plan on staying very cozy as the winter weather approaches.
Thanks Colleen. Ironically I am reading this while sitting on a bench watching people walk by. I’ll now have emotion my mind..
Jim, it turns out that we can learn a lot just by sitting on a bench.
Thank you for your reflections. You are a very brave woman. ♥️????????☀️
Thank you Kelly. I don’t feel very brave but I do find writing really helps me process so much of what I’m learning.
Such a wonderful reflection of our need to be patient and kind. I hope that you are also showing that empathy and compassion towards yourself. ❤️ You deserve it too.
Thank you Bev. That is good advice. I am learning to treat myself with more care.
Wise words my friend. ???????????? Thinking of you.
Thanks Janyce. I really appreciate your thoughts. Trust me, when I say it truly helps.
Every time you make me think deeply. I appreciate you and your inspiring message❤️
Thank you Zena.
Thanks Colleen. We can all use a lesson in empathy . Im sorry that you have been dealt this shitty disease , but in true Colleen style you are turning a bad situation into a positive one. I applaud you for starting this group and working towards supporting each other. I would expect nothing less from you. ❤️❤️❤️????????????????????????????????????????????????
Thank you Kathy. Because of this ridiculous disease, I have new friends that I would never met any other way. It is so good to be with others who completely ‘get’ it. At the same time, it is also true that hearing from a long-time friend like you, means the world.