ALS isn't (just) an old man's game. After receiving an ALS diagnosis in her early 30s, Brooke Eby did what was natural: crawled into bed with a party-size bag of M&Ms. For months, all she could focus on was survival. Then, after attending a wedding with the same walker as the bride's grandmother, she started to rekindle her sense of joy. Instead of feeling ashamed for her mobility aid, Eby found herself offering guests rides on the back of it. There was still life to be lived, and she intended to give it her all. Over the next few years, she documented her medical journey, wonderfully dark humor, and fierce advocacy up until her death on Oct. 1.
ALS - or amyotrophic lateral sclerosis - is a pretty equal-opportunity party pooper. Although it's sometimes thought of as being reserved for older white men, the progressive neurodegenerative disease can affect anyone, ultimately destroying motor neurons in the brain and spinal cord. "Guys! If I've taught you anything, it's that ALS affects hot people, too," Eby famously joked. And with 90 percent of cases occurring without any known family history or genetic cause, there's nothing you can do to prevent it.
For some, a terminal diagnosis would be a complete stop. But people like Eby know there's still a lot you can do on a shorter timeline. Take the women of Her ALS Story, for example. This year, they held the largest-ever gathering of young women with ALS . . . and they celebrated accordingly. Think: wheelchair races, drag shows, beach days, and late-night dance parties. Ahead, we asked Her ALS Story members what the community means to them, how they find levity amid the grief, and how they're cultivating joy alongside one another.
The Power of Connection
It was Her ALS Story vice president Kate Nycz who decided to bring the retreat to Cape Cod. This being the group's fifth annual gathering, Nycz says she already had an idea of what to expect. "Local guests and staff are staring, but it's in a good way. They're seeing disability having fun," Nycz tells Popsugar. "Not that look of pity and, 'Oh, poor thing, she's so young.' I fucking hate that."
This year, a whopping 41 women with ALS came to the Warrior Weekend retreat for comfort, joy, and community. But of course, it takes time for genuine connections to form. Her ALS Story celebrations lead, Monique Green, remembers feeling a bit reserved herself in the beginning. "I always say, 'No new friends,' because I don't like to have to explain what happened to me or what my life was like before I had ALS," Green says. Not having to constantly explain herself felt like a gift. "Being at the retreat, it's not like you're on display because everyone surrounding you is going through the same thing."
Image Source: Liz Linder Photography
This rare sense of normalcy was also a highlight for Her ALS Story community lead Kim Trautman. "Being at the retreat together with such a large group means that, for once in my life, I don't have to explain why I have a tracheostomy and cannot speak, or why I have a feeding tube and cannot swallow well," Trautman tells Popsugar. "If you need help eating, if you can't find your reusable plastic straw, if you lost your feeding tube extension piece, or need someone to turn on your suction machine, someone is always there to help, no questions asked."
"It was just awesome to feel like I was a part of the celebration."Being surrounded by people who deeply understand your needs and see you for who you are is already a major win. But the levity integrated into the programming is another part of makes the Her ALS Story weekend so unforgettable. This year, the itinerary included wheelchair races, glam sessions, and a full-on drag show. "Everyone was dancing and partying, [but] I really can't move my arms," Green says. "At least three people came up to me and grabbed my arms and waved them in the air and helped me dance. It was just awesome to feel like I was a part of the celebration."
Following the death of her close friend, Katie, Trautman says the party also brought her a surprising amount of solace. At one point, she even got to dance alongside Katie's young daughter. "The amount of grief that I have felt since Katie's passing has been difficult to manage," Trautman says. "Dancing with my late friend's daughter and being able to see her at the retreat brought me some of the comfort, peace, and healing that I so desperately needed."
Re-Framing the Narrative
For, Trautman, Her ALS Story has been an integral part of re-writing the narrative of the disease being frequently associated with old white men. She credits much of this work to the group's founder, Leah Stavenhagen, who died in February of this year. Nycz explains why it was so important for young women, specifically, to have support along their ALS journey.
"It was everything looking up and moving forward."Nycz says most ALS support groups are made up of older people who have already lived long, full lives. It's completely different for the women at Her ALS Story, many of whom were diagnosed much younger. "I [had] three months before my wedding, I was five years into a career as a nurse practitioner. It was everything looking up and moving forward," Nycz says. It's a lonely feeling when everyone else in the room is wondering, "Will my kids be OK?" and you're just wondering if you'll ever be able to reach a milestone like that at all.
The women of Her ALS Story have all dealt with the anger of an early diagnosis - the grief of losing a friend. But they also have a unique perspective on how to get through it. "It brings me joy when I think about a group of badass, young women empowering and supporting one another in the fight," Trautman says. "We may not have been able to choose the cards that we were dealt, but we will definitely choose how we will be playing them."
Remembering Loved Ones
For all the fun found at the retreat, the women of Her ALS Story know you can't move forward in joy without taking a moment to honor the grief. "There is a moment that we take at every retreat to remember those we've lost throughout the year," Green says. This year, at the end of their beach day, the group honored the members they had lost, writing out their favorite memories on dissolvable paper and sending them out into the ocean. "We lost 13 members from the last retreat to this one," Nycz says. "Feeling like they're a small part of the big ocean is how I feel about them in the group. Heavy shit, but it feels like I put them into an ebbing and a flowing of grief and joy."
Nycz admits it's hard to look around and know that a member of her community might not be there to celebrate next year. But while the years are peppered with loss, they're also overflowing with love, laughter, and friendship. What better way to spend the time? "They are there to pick me up when I'm sad, celebrate with me when I'm happy, rage with me when I'm fed up," Nycz says. "These women deserve all my fight."
Related: Cancer Patients Are Finding Joy in Treatment, Thanks to "Chemo Hobbies" Chandler Plante (she/her) is a staff writer and PS Fit Producer. She has over six years of industry experience, previously working as an editorial assistant for People magazine, a social media manager for Millie magazine, and a contributor for Bustle Digital Group. She has a degree in magazine journalism from Syracuse University and is based in Los Angeles.Hence then, the article about how women with als support each other through a terminal diagnosis was published today ( ) and is available on popsugar ( Middle East ) The editorial team at PressBee has edited and verified it, and it may have been modified, fully republished, or quoted. You can read and follow the updates of this news or article from its original source.
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