Grief and the Golden State
Leaving Southern California has always been a difficult task for me. My soul belongs there, among the sand and sun. It’s my heart’s truest place of embodiment. I’ve known it since I was six years old and craned my face skyward to see the top of my first palm tree out of the window of our rented minivan. We were on a family road trip to Disneyland. The biggest and fanciest vacation we’d ever had. Los Angeles was a world away from my small pacific northwest town, seemingly full of magic and possibility. We drove down Rodeo Drive. My mom took a picture of my feet next to Tom Selleck’s handprints. My dad and brothers caught beaded necklaces for me at Disney's Partygras parade and we watched the fireworks at night.
My idealized version of perfection was squarely found in the economic lust of the nineteen-eighties and the opulence of southern California itself, thanks in part to the likes of Barbie, Bayside High, and Troop Beverly Hills. Whenever I fly in, I still look out the window to catch a glimpse of the first palm tree I can find. A ping of nostalgia resonates in my mind. A long-held breath releases from my chest, and my heart feels like it’s come home again. These days I visit for California for work as much as pleasure.
I was in San Diego to attend the Global Genes’ Patient Advocacy Summit. This annual event is one of the world’s largest gatherings of rare disease patients, caregivers, advocates, researchers, and more. I was attending as a speaker in a panel focused on grieving as a community. My youngest daughter, Miss Elliott was diagnosed with Tay-Sachs disease, an ultra-rare, recessive genetic, degenerative, terminal illness. She died thirteen years ago, at just three years old. This year she would have been, should have been, sixteen. I lay in bed most of the morning of her birthday thinking about what a bittersweet sixteen it was. How I wished I was presenting her the keys to her very own car. Making a birthday cake. Watching her blow out the candles.
These were some of the simple luxuries we, blissfully unaware of our fate, hoped for when she was conceived, yet sadly, were not afforded to us. Since her diagnosis I have been entrenched in the rare disease world, and more specifically in grief support from that point forward. Working for the National Tay-Sachs & Allied Diseases Association (NTSAD) as their Family Support and Engagement Manager and a Peer Support Specialist, I see families through their journey from diagnosis, until inevitably, as there is still no treatment or cure, bereavement.
Tay-Sachs disease brings a relentless regression of abilities unto death to the infants and children who are afflicted by it. What may first seem to parents to be a lack of meeting milestones at the prescribed rate, quickly becomes a living nightmare with a steep downturn when children begin to suffer seizures, lose their ability to see, swallow, and have any control whatsoever over their physical functioning or mental cognition. These children will require highly specialized, twenty-four-hour care for the duration of their very short lives.
I’ve been the mother crying in a heap on her kitchen floor. I’ve experienced the heartache and anticipatory grief of loving someone living with a debilitating condition. And I know all too well the overwhelming reality of losing your child. As a grief writer and speaker, much of what I do is centered on the idea of community. Support for each other is a way to rally against the inevitable loneliness and isolation a rare diagnosis brings. Nurturing connection also facilitates understanding.
It’s what saved me as I was circling the drain in those early days after our daughter’s diagnosis. And it’s what’s carried me through more than a decade after her death. Being held by the rare disease community and my fellow rare parents gave me the strength to get through each new downturn. This community became my family, and they were my touchstone. They gave me a place where I was free to laugh or cry, to scream or sob, and no one questioned my sanity or the validity of my feelings. It was a circle of unconditional acceptance and support. It was the intimacy created through understanding and shared grief. One of the most important lessons I’ve learned through this is that, at our core, all of us want to be seen, heard, and understood. We want to be validated and accepted, no matter how we feel.
After this uniquely protective bubble of a weekend of inclusivity and support was ending, I sat on a bench outside my hotel watching the sun-bathed palm trees sway in the warm southern California breeze. I was savoring my last few moments with them, soaking it all in, but feeling my chest being to tighten as I waited for my Uber. I listened to two fellow conference attendees talking to each other on the bench next to mine. They were both crying. Thanks to the weekend of wall-shattering vulnerability we had all just had, I felt particularly connected to them and uncharacteristically asked if I could give her a hug. Nodding her head while wiping away her tears, she reached out and squeezed me long and tight.
“It’s just that I don’t know when I’m going to see him again,” she said, the pain clear through her cracking voice. The breaking of the circle on the horizon. The loss of support and connection an all-too real possibility.
“I live in England,” he added in an accented tone, as he too dabbed at his watering eyes.
“I’m so sorry,” was all I could muster, because at times like these there just isn’t anything better, grander, or more profound to say. Sometimes there are no words to fix the heartache. Merely witnessing it and providing a listening ear or shoulder to cry on is all you can offer.
They thanked me for my talk on grief in my session earlier that day and I wished there was more I could do, but my Uber pulled up at that very moment to whisk me away to the airport and back to the reality of everyday life. I left them there on that bench as I climbed inside the car and blotted the tears forming in the corners of my own eyes. I don’t know their names, their story, or what will become of their connection once they’re so physically far apart. One thing I do know about this couple is their souls belong here too, in this heart place, with each other.
After I boarded the plane, I looked out the window for as long as I could. The swaying palms grew smaller and smaller until, suddenly, enveloped by the mist, we were above the clouds, and they were gone. Left to another dimension. Just like the couple at the hotel, I don’t know when I will see them again. Grief is an expression of the heart that takes many forms. While these emotions can be so unique and individual, they’re connective, too. One thing is certain, grief touches us all in varying ways at varying times as we walk through this life. Let us all have the compassion to recognize each other’s pain and to offer connection when we do.
