Her ALS Story Retreat 2025
Day One: A Gathering of Unbroken Wills
After a bumpy two-hour drive from the Boston airport, we pulled up to the crisp white and blue facade of the Seacrest Resort in Cape Cod. The conglomerate of passengers I rode with in the behemoth raised shuttle a preview of what awaited us. Myself and two other young women with ALS and our partners, ranging in disease progression from being able to walk and speak to neither, had arrived at the fourth annual Her ALS Story retreat.
After picking up equipment generously provided by CCALS, my husband and I walk and roll into the ocean side courtyard for the welcome dinner. Entering this scene, this world is like coming home for the holidays even though most of these people I’ve only known for a couple years and others I’ve never met. Each new arrival into the courtyard is greeted with smiles and hoots of joy, instantly embraced by understanding, loving eyes. Young women, mostly in wheelchairs, mill about, the breezy ocean air full of laughter and chatter. Finally, a group of friends who are always eye-level. Sitting around white-clothed tables, we dig into bbq. Some, like me, are fed like babies while others who have the strength and dexterity feed themselves, and still others bypass the food altogether and have a liquid meal via feeding tube. For once, we are not stared at or the proverbial sore thumb sticking out. Regardless of if you need your mouth wiped, food cut into choke resistant sizes, or take your shots of tequila in a feeding tube, it’s unnotable. In the case of the inevitable equipment malfunction or physical barrier, no less than four people’s ears have perked up like a dog who heard “walk” and they begin problem solving.
As the evening comes to a close, several members take to the front to lead a remembrance in which our sisters who have died since the last retreat are honored through memories to be written on dissolving paper and cast into the ocean. Sobs and sniffles burble through the crowd, lightened by the occasional inappropriate wheezing laughter, a wild card symptom of ALS.
Day Two: High Tide, Low Mobility
Enlivened by the previous night, we awake to a classic beach day with a twist. The twist is when you have 35 women in various stages of paralysis, navigating sand and water is not a carefree frolic but a Sisyphean slog. Enter the amphibious wheelchair. A long swath of blue-and white-striped taut cloth forms a seat and footrest, held together by a metal skeleton and buoyed by enormous, bulbous yellow wheels and armrests. Once caregivers transfer their bathing beauties to these low-rider chariots they are hooked up to an off road vehicle to trek down the sandy hill to a section reserved for the happiest dying people you will ever meet. We relax in the wind-tempered sun, consume liberally, and are at ease in each other’s presence. While the water has a chilly bite, it’s worth it for many of us to get in, as being surrounded by water has become a special treat of sorts since it’s incredibly difficult. It’s clear by now that I will forever look back at this trip wistfully, like when you realize fifteen minutes into a movie that you’re viewing something special that will be cemented in your mind for years to come.
The four hours on the beach with paralyzed partiers combined with the previous night’s love bubble has had a surprising side effect. Walking around the resort, it is startling, jarring even, to come across healthy, walking people that seemingly pop out of nowhere. Being around people with ALS nonstop has made it seem like this place is just for us, and we are the normal ones. When I see these able-bodied people and their families I just stare at them aghast before realizing this is what it must be like for healthy people when they come across us.
Day Three: Terminally Fabulous
The morning is a sizzling pan of excitement. Some of the husbands go golfing, giving them a well deserved reprieve from caregiving. Meanwhile the ladies are treated to a glam day in preparation for a drag show later that night. Volunteers do hair, makeup, lashes, and nails. I get my makeup done for the first time in over five years. All around me women are aglow, eyes closed, relaxing in the comfort of knowing that when they open their eyes they will feel upgraded physically and mentally. Hours later we meet up decked out in sequins and glitter to go to a little rustic open-air venue in the woods, each of us drinking up each other’s looks. A 6’4” drag queen with flaming red hair and curvaceous padding hypes up the crowd, shouting, “Everyone’s looking gorgiiiina tonight!” Three queens rotate lip syncing, gyrating, and doing jump splits that hit the wooden floor planks with a bang so loud you think all of us might fall through the floor in a tangle of wheels and rhinestones. We offer up dollar bills to the queens however we can — our teeth, stuffed in our shirts, even between our desperately outstretched toes. The drag show is only outshone by an interlude dance party where HAS members and their caregivers take turns wheelchair dancing in the center of a circle of hulking metal and plastic containing women who are positively losing it with love and admiration for their fellow sisters.
Day Four: Sunset on the Seacrest
With most of us exhausted and hungover from the night before, another chill beach day is on today’s menu. We reminisce about last night while someone makes the rounds spraying psilocybin spray in people’s mouths and people dance in the sand to blasting hip-hop. Women periodically leave to get a tattoo onsite, choosing from four meaningful options: two different HAS logos, a disco ball in remembrance of a late member who had her remains put in a disco ball, and an ampersand representing that we can grieve ALS and find joy in life. Later that night, the main event is the wheelchair races. In a ballroom lined with windows overlooking the ocean, we weave around tables individually for time. Next pairs of ladies race in a straight line, each racer smiling like they are six again, delight bursting out of them. We cheer for all racers as though it holds great importance. And it does, for we’re cheering our hearts out for us collectively being brave enough to be joyous in the face of ALS. As we say our goodbyes at the end of the night it seems impossible that any one of us wouldn’t be here next year. In a way it doesn’t matter though, because after the richness and depth of the past few days each one of us is immortalized in the minds and hearts of our fellow HAS sisters.
