HAS Retreat 2024 Recap
Have you ever met someone who emits sunlight? Someone who you gravitate to because they make you feel warm and full of energy? They seem to make all your dark clouds and cold rainy days subside when you are around them. It is quite amazing, these people. And I am blessed to have been in a room full of them.
Early September, Her ALS Story hosted their third annual retreat, and I had the gift of attending. It is a feeling quite unlike anything else I have experienced. We all arrived in a glowing ball of anticipation, energy, anxiety, and joy that we have made it happen yet again–the months of waiting and “what ifs” diminished. Smiles and squeals (tires and vocal types) filled the halls of the Sea Crest Resort who hosted us. We were greeted by our friends and supporters from ALS One and Compassionate Care ALS who among many things, had been the airport shuttles and medical equipment loan closet. It was like the sun had risen over all of us in an enveloping hug to erase all the struggle of ALS for the time being.
We spent the first night hugging and loving each other. It is a pure kind of love with an inclusive and radiant acceptance, a mutual and unspoken understanding. It is a beautiful thing to not have to explain anything and to be free of the curious minds scanning your differences. The chance to put down the umbrella and soak up some genuine compassion. At dinner, we ate together under the colorful sunset and laughed to our hearts content. Tequila shots were had even through feeding tubes, food flew from mouths who burst with excitement, Tobii Dynavox devices filled the courtyard with chatter, and stories of camaraderie were shared over dinner.
The following morning, the VIP treatment began. Through the generous hands of volunteers, our members had a glam day. Massages and facials, makeup, nails, and hair blowouts lead to a full day of pampering. We were all prepping for our disco party dinner to honor and celebrate the lives of several of our very own. You could feel the energy vibrating through each of us as we revealed our sequins and sparkles. A chance to take time to do the extra glow up that so often gets put on the back burner. Our dear friend Macey, requested to be cremated and placed in a disco ball so that her light continued to shine, and her presence was felt in the technicolor and shimmering lights we produced. Our friend Elena, wild and young hearted, loved a good drag show and her presence was felt in the laughing and dancing that followed dinner. It was a celebration of life. It was full of overwhelming joy and wheelchair dancing. A swelling ember of light filled the empty space where they should have been and connected us all with our friends we ached for.
Friday was a beach day for some and pampering for others. Volunteers came for massages and facials, and an artist offered on site tattoos. The day was cool but sunny as we enjoyed the presence of each other. No words necessary to feel the thoughts and company of someone experiencing the same. Rest and peaceful bliss of true friendship. We all gathered for dinner and in matching shirts. There was no denying that we were family now. As a host and large contributor to the event, leaders of CCALS, Ron, and ALS One, Jen addressed the crowd. In true HAS fashion, a poorly timed chat message about poop entered the chat during their beginning of speaking a fit of uncontrollable pseudo bulbar donkey laughing fell over the room like dominoes. Sorry Ron and Jen, we blame ALS and our inner school-age boy reaction to poop references. And the childish games ensued in obligatory wheelchair racing. And of course, when no chair was left, you better believe we paired our walking members in a walk off. Apologies to the neurologist and physical therapist who might be panicked about this. But truthfully, all is fair in the game of ALS. No warrior backs out of a competition.
The weather continued to give us the most incredible days. With just about every beach wheelchair CCALS could get in the state, one by one, we headed to the beach. There’s a magic that occurs when accessibility needs are met in a place you would least expect it. So many of us imagined our diagnosis would eliminate us from swimming or enjoying the beach, and yet, there we were lined up soaking up the rays. It was like a mix of a family reunion and college spring breakers, but with an entourage of nursing home equipment. Music played, friends and families bonded, drugs and alcohol were consumed and yet, we had about twenty wheelchairs on the boardwalk and beach equipment filled the area we gathered. Those daring enough to take the plunge, floated together in the water.
The dinner this evening kicked off with a selfie bingo game and settled into the familiar laughter and chatter over our meal. It was our last dinner together. The sun was closing down on our time together. A true bittersweet feeling of leaving your heart sprinkled through the country with each of your new family members. And truthfully, it is an unspoken agreement between each of us that we are not saying goodbye, it is a see you later. And then when we are not ready to leave we soak up the last minutes on the boardwalk.
This week is simply full of so much love, you can’t help but feel your heart crack open and be pumped full of love and light, in a place where we’re connected for a reason that involves illness. In a situation where you would assume the opposite, we chose to celebrate life. More than most, we understand the urgency to soak up every moment. ALS doesn’t mean the end of living, and our community of women in Her ALS Story does just that. The light people we are is what makes us warriors. It keeps us going and fuels the tanks when energy is low, builds us up when we’re down, and makes us brave when we feel weak. It is a sisterhood.