Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
It is hard to believe that it’s been four years since masks became a common accessory and the words pandemic and quarantine entered our daily vocabulary. Those mid-March days were a delineating event, etched in our memory not unlike where we were on 9/11. Even if our world now more closely resembles our maskless and activity-packed lives of before I hope the lessons of those uncertain days are not forgotten. So, this week I’m resharing a post I wrote on March 27, 2020, to remind us.
Today is International Women’s Day and please forgive me, but I’m feeling a touch jaded at the moment. Unfortunately, in the fight ahead of us, we don’t have the luxury of being jaded. So, this week I went looking for inspiration and fortification and realized I didn’t need to look very far.
Logically, I know that our bodies hold on to grief. I’ve read about it in various books, researched it for my own, as well as had personal experiences. However, my knowledge revolved around episodic symptoms. What I didn’t understand were the long-term effects.
Today is Anessa’s 5th birthday! There is not a day that goes by that I am not enterally grateful to call her my daughter. Her addition to our family has been nothing short of transformative. There are also days where I wonder how she has managed to transform every ounce of my patience into bone-tingling frustration.
One of my favorite things about writing this blog is continuously being reminded how many of us are struggling with the exact same things. While I never want other people to struggle it is comforting to know that we have shared demons. Kind of like how Anessa and her friends share a love of the color purple, unicorns, and a difficulty transitioning from one activity to the next. We share anxiety, trauma, and crippling ambition. Same-same.
Normal Broken has been out in the world for three months. In the beginning, I was motivated to get the word out because, holy hell, I wrote a book! It was celebratory and exciting. Lately, though, it’s felt like one of those dreams where you are trying to run but your legs aren’t working and everyone and their grandmother is passing you but your feet just won’t go any faster. On that note, who could use a little Friday morning pep talk?
Recently, the dogs and I have been on the same wavelength: couch cuddles for the win! To be fair, this is Tabasco’s wavelength most of the time. Which is fair, he turned 15 this week. Yes, you read that right, 15. Tabasco has been my very best boy for a long time. He has been by my side through the most challenging years of my life. But what if there is more to it than just a loyal dog…
Through the marketing of Normal Broken, I’ve had the opportunity to listen, relate, and connect with person after person who is facing their unique grief while craving a sense of community and understanding. One of these people, is Tasha Firoza Faruqui, a pediatrician and mother of three, whose middle child, Soraya, has an unknown neurodegenerative condition with no cure. Today, I ask you to sit in the dark with Tasha, Soraya, and their family. To witness their journey and send them the love and strength they need, as they survive with tears on their faces and laughter in their hearts.
Well, it’s been nearly two weeks since Miguel took his final bow as Hamilton… and he’s been sick for nearly all of it. Only Miguel seems to be surprised by this turn in his health. To which I asked him, did you read my book? Specifically, the part about how our emotional health affects our physical health? I digress.
What do I even say about the magic that occurred on Sunday evening? I was so caught up in the logistics –family and friends coming in from out of town, making sure everyone’s tickets were squared away, that they knew how to get to the after-party – I hadn’t given much thought to the main event. That was admittedly on purpose though. One of my favorite coping mechanisms is to focus on what I can control so I don’t dwell on what I can’t.
I asked Miguel if he wanted to write this week’s blog post in honor of his final performance as Alexander Hamilton this Sunday. He kindly obliged. I don’t believe that either of us has been brave enough to sit down and process what this show has meant to our family and how complicated this goodbye is.
