Being Present and Other Impossible Tasks
I am an event planner, which by definition means I don’t know how to live in the moment. I spend my days fixated on an imaginary red circle on a future date, working diligently towards a day that is usually months away. My personal life is not that different - I gleefully plan our family calendar a year in advance, dreaming of far off vacations and family get-togethers while slogging through “regular life” to get there.
I am not sure if I fell into my career because of my dreamer tendencies or if I have developed this obsession with the future after years of getting paid to plan, but either way, I love what I do. And what is that exactly, you ask? Well as the title implies, I plan events - nonprofit fundraising events that come together over months and months, sometimes years of planning. Someday I’ll write a book with stories I have from this crazy job (including the time a VERY famous singer tried to take my intern home with him like she was a parting gift. Or the time when I was summoned to our chairwoman’s hotel suite for an urgent “seating issue” only to find her very old self very much naked and in need of help getting dressed. And apparently, with setting boundaries). I know, I know…this was before the world changed and yes, I am traumatized. I’ve signed several NDAs so there will never really be a book sadly, but despite the insanity, I have had an incredible career getting to work with First Ladies, A-list celebs and some of the most enjoyable characters in philanthropy. Click to enjoy this little montage I made a few weeks ago when I was on a post-event high. You can read more about what I do on my work page.
It probably won’t come as much of a surprise to learn that on the day we left Dr. T’s office with our shiny new PD diagnosis in hand, that I immediately started searching for answers online about what my future would look like. I wanted concrete facts: how quickly does it progress? What will my 60s look like? My 70s…80s? Will it kill me? If so, when? When those answers weren’t easy to find, I started searching for examples of people who had been living with Parkinson’s for many years to see what their symptoms looked like well into progression. I was desperate to find positive role models, which of course, led me to Michael J. Fox.
As everyone on the planet knows, Michael was diagnosed with young onset at 29 years old and has arguably been the face of Parkinson’s for the last three decades. Brave and open about his struggles, he is a true inspiration to millions including me, and was so well before I was a member of this terrible club. But as much as I revere my fellow Canuck, I will be honest and say that seeing the current manifestation of his progression is very, very hard for me to watch. He is the visual representation of what my future could be and that sends me to a very dark place. For those that didn’t see it, Michael was interviewed on CBS Sunday Morning this weekend and because I promised to be transparent on this blog, I’ll tell you that watching it left me in a puddle of tears.
I won’t give you too many details of my expensive therapy sessions, but during a recent one, I shared that I was considering hosting a screening of Michael’s new movie called Still as a fundraiser for his foundation. I’m nothing if not consistent in my approach to life: when in doubt, plan something. Without missing a beat, she (kind of) told me that was a terrible idea. It is rare for her to be blunt or directive and I sort of blacked out when she started talking about the downsides of planning this event (blasphemy!), but I think if I had to paraphrase what she said, it would be something along the lines of “we don’t have any insight into how your disease will progress and seeing others who are suffering the worst possible symptoms after having it for 30+ years isn’t helpful to you right now. You aren’t him and you may never be, and watching an entire movie of his life with a room full of people could be the recipe for an emotional breakdown.”
Oh man, that sounded so rational, but I like to argue so I protested. Knowledge is power, I said, and I need to face reality, and I have to plan for the worst, even if I am hoping for the best. She started talking really slowly and calmly and said the words “Right now, Allie. It’s not helpful, right now”. Ok point well made. As I said last week, my emotions are on overdrive right now so let’s not invite more of them into existence right? I get it. No more superfluous event planning! That’s it right? I won the therapy! YAY!
Spoiler alert, I did not in fact win the therapy. There was apparently a much bigger lesson to be had here, as there always is with this person who I pay to outsmart me. The takeaway is this: despite every ounce of my being telling me otherwise, I need to learn to live in the moment. To learn to be, gulp, present. My instant reaction was that I could never change from being a dreamer. What would that even mean? Don’t spend my days on Trulia looking at houses I will someday buy? Don’t plan the next vacation the moment I arrive at our current one? Don’t wish away the hard and boring days just to get to the fictional fabulous ones? Well, sorry, but that may be a bridge too far for me. I mean, I am who I am, and I love to dream about the good stuff that lies ahead. I think what she was telling me though, is that it’s not about taking away the fun parts of being a hopeful dreamer. It’s about learning to enjoy today as much as you enjoy the idea of tomorrow. And perhaps more importantly, to avoid the mental doom scrolling that comes with something like a Parkinson’s diagnosis. To find a way to turn off the forecasting when it comes to disease progression at least until I find myself on firmer ground. Ok, got it. But, like, HOW do I do that? I found this article on Headspace and here is a bit of what they say:
“On the most basic level, being present means being focused on one thing — a conversation, a project, a task in hand — without distraction, without wanting to be somewhere else, without being in your head and lost in thought. Learning to anchor yourself to the present moment is easier said than done, especially when most people have a tendency to dwell on yesterday or worry about tomorrow. Meditation can help bridge the gap between emotions from the past and eagerness of the future ... and that’s why it teaches us how to be more present in life.”
Honestly of all the things I’ve had to adjust to since December - eating better, exercising consistently, sleeping more, working less - the idea of becoming more present or meditating is the hardest one for me to grasp and the last of the brain health habits that I have embraced. I’ve tried before and without exception, at about 10 seconds in, I’m antsy, bored and thinking of the list of things I need to do that day, the food I want to eat, the food I shouldn’t have eaten, the true meaning of Scandoval, why cicadas live in the ground for 17 years - like what do they do down there?, how planes fly and why they don’t just fall out of the sky and a million other things that end up making more stressed than when I started. I imagine that a practitioner would say that it takes practice and to just stick to it but so does riding a unicycle and I think we all know I’ll never be able to do that. But I’ll try meditation again and let you guys know how it goes.
In the meantime, I am working on just being present and happy to do the things I still get to do at this point in my life. Working, writing, running, cooking, trying new workouts (I did Pilates last week!), spending time with friends, driving with Bobby, Facetiming with Ava, taking walks with Mike and watching Buddy sleep (he’s old). I am not doing it perfectly all the time and I do tend to slide backwards down the hill of fear about what is to come, but for the most part I am nailing it lately. The tears come less and less frequently and the laughs more easily.
Here’s a few pics of us at the DC United soccer game Saturday that I booked about two hours before it started. Live for today is my new mantra and that includes less time on our couch and more time out in the world. Side note: despite being a voice major in college with a strong desire for my kids to be theatre nerds, they instead both fell in love with the beautiful game and it has become a huge part of our lives and now I love it (and not just because Ryan Reynolds owns a team).
During his interview with Jane Pauley, Michael shared this about how he reflects on his life::
"Very good life...it's perverse to say it, but kind of a 'charmed' life. I recognize how hard this is for people, and I recognize how hard it is for me. But I have a certain set of skills that allow me to deal with this stuff. And I realized, with gratitude, optimism is sustainable. And if you can find something to be grateful for, then you can find something to look forward to, and you carry on."
To be able to say this after all he’s been through could be seen as a miracle to some, but I understand it deeply. For all the sadness I have felt since finding out about my Parkinson’s, I have also seen it as a gift. I am reconnecting with friends I haven’t seen in years, I am not sweating the small stuff, I’m getting to write more which I love, and most importantly, people are afraid to be mean to me. Let’s just hope that part lasts.
I will watch Still, at home, with my family. I will let the tears fall if they come and I will allow myself to be worried of what this disease will bring. But I will pick myself up, get back to being in the present, and I’ll never be scared to be like Michael J. Fox. I can only hope to be as centered, grateful and hopeful as he is 30 years into this disease.