One Foot in Front of the Other: Navigating Anger

I have never been angry about Jules’ life-altering diagnosis. From the moment our neurologist told me Jules’ symptoms were caused by a case of bad luck, a one-letter change on one allele of her CSNK2A1 gene not inherited from either Jason or me, my first response was one of sheer relief; at last, we had an answer and resounding confirmation that it wasn’t something I had “caused.”  My second response, however, was a question: “So how do we move forward from here?

"One foot in front of the other." That's been my mantra for tackling any problem or obstacle for as long as I can remember. I'm usually an action-taking person, an administrative lover who does all things administrative that I can for the people I care about. I always put one foot in front of the other, never stopping for anything, until now. 

Recently, I felt a storm of anger and rage like never before that stopped me in my tracks. I was so angry at Okur-Chung Neurodevelopmental Syndrome (OCNDS).  It has stolen so much from my girl.  Jules is extraordinary, however, most of the time, our sweet Jules is locked away by OCNDS, like Rapunzel in her tower.  Jules is clever, spicy, naughty, a first-rate shit disturber like her father, a budding chef, loves the ocean and has an adventurous spirit. Jules’ spirit animal is the dolphin. Her favorite food is octopus. Her favorite treat is Peeps.  She loves living in an RV or on a cruise ship.  Her favorite activity is cooking. If you know our Jules, you know that she never stops moving, she keeps you on your toes, and you never have to guess when she is happy (or furious).

OCNDS has imposed significant challenges upon Jules. While most 15-year-olds possess a vocabulary of 50,000+ words, she's limited to about 200. Her symptoms include severe speech delay, autism, global developmental delay, cognitive impairment, self-injurious behavior, and a sleep pattern that's constantly disrupted. Her self-injury is so severe that it leaves her bleeding through her clothes. There have been moments when the wounds were dangerously close to her rib bones, striking fear into the hearts of doctors about the potential for deadly infections. On some days, she can cry for 9 hours a day and in a complete panic state which renders her immobile, unable to engage in any daily activities or communicate.  During those times, I try all the things. I try to problem-solve it, one foot in front of the other - Check if she is hungry or tired - Try to cuddle her - Try to ignore it - Try to pray it won’t last 9 hours - Try to give her my phone (she always wants mine and not her own) - Try to play calm music – try self-compassion.  And then the moment that feels like an eternity ends. 

When Jules is clear, calm, and focused, it is magic.  It is a unicorn moment.  In these moments, you can see a glimpse into what she is capable of and the amazing things she would do but for OCNDS.  Besides grocery shopping, Jules’ favorite pastime is cooking.  She is like a Michelin 1-star chef.  She can’t write her name, but her knife skills rival a decorated sushi chef’s. In a unicorn moment, she heads to the kitchen.  She transforms into Remy from Ratatouille, the young rat with heightened senses of taste and smell who dreams of becoming a chef like his human idol. She washes her hands and dries them.  She opens the cabinets, and bowls begin clanking like an atonal orchestra as she finds a home for each of her ingredients.  She gathers meticulously, from memory, her ingredients and will create her mise en place.  She smells every ingredient to ensure its freshness and that it is up to her standards. She begins a symphony of washing, chopping, measuring, mixing, and sauteing.  She even cleans up “her station” along the way.   She creates culinary delights from scratch, like jambalaya, guacamole, or frosting for a cake. During these moments, her talker, an Ipad with a communication picture app, becomes her voice, sharing her dreams, desires, and thoughts: her enthusiasm for “Hawaii,” her longing to “swim with dolphins,” and the anticipation of “Thanksgiving” (Jules loves holidays), replete with “turkey,” “caviar” and “crab” (Jules is a foodie, a fancy girl at heart.).  This is a brief window into her soul, a testament to how much is going on that we don’t know about.  Recently, I sat in the kitchen and watched her do this for 3 hours, and suddenly, she stopped and began to weep.  The moment was shattered.  She was now fully back in the clutches of OCNDS.  She was now in a ball, crying, not able to communicate, her body trembling and inconsolable.   

And in that moment, I felt an overwhelming surge of anger, the likes of which I'd never experienced before. I was filled with rage.  Vengeful tears streamed down my face. I've never been angry about her having OCNDS before because I was always putting one foot in front of the other by working tirelessly to start a foundation, connecting OCNDS families across the globe, fundraising, supporting OCNDS research, advocating for the services she needs at school, and secretly shielding Jules from all the ugly stares from people at the market. Jules is not OCNDS.  OCNDS is something that is happening to her body.  But on this day, I fiercely and unapologetically hated OCNDS.  Actually, I fucking hated OCNDS.  No other way to put it.  I know it is so vulgar.  I hate OCNDS for all it prevents her from experiencing.  The list of missed opportunities and dreams is too painful to enumerate.

Jules deserves to live her dreams, and all she gets are fleeting glimpses. I don't know why it took me seven years to get angry. Anger doesn't change anything, but maybe it's part of the rare disease grief process. In the end, I'm left with my two feet, continuing to put one foot in front of the other, striving to find a treatment to unlock my sweet girl from the clutches of OCNDS.  Left foot, right foot, left foot - my journey continues, knowing we are living in a science revolution, and I will unlock my Rapunzel from her tower.