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Welcome to Connecting ALS. On today's episode we welcome members of Her ALS Story.
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Leah S.:
Part of the magic of our group is looking forward. And constantly fighting and living, not looking back and not regretting or worrying about what our future entails.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. In April, 2021, Leah Stavenhagen launched Her ALS Story. A network of young women living with ALS who were forced to reimagine their futures and who didn't always see themselves reflected in the public perception of a person living with ALS. The network now counts more than 30 women who come together to support each other, to advocate and to raise awareness of what it's like to face ALS as young women. I recently sat down with Leah, Alex Cavalry and Kate Neese for an inside look into their network. Well, I want to thank all of you for being with us this week to talk about Her ALS Story on connecting ALS.
Alex:
Thank you for having us.
Jeremy Holden:
Leah, I want to start with you. This is kind of your brainchild. Back in 2021, you launched Her ALS Story. Tell me a little bit about the impetus behind starting it, the problem that you saw and the space and the role that Her ALS Story plays in kind of filling that void.
Leah S.:
Definitely. So in 2021, I had been living with ALS for two to three years, I think two years realizing that I had it. Yet at the beginning. I wasn't somebody who was able to jump right into advocacy. I was continuing to live my life and try to pretend that I didn't have ALS. But little by little, of course, it is such a debilitating disease that it becomes difficult to ignore it. And at that point, I did want to get involved in advocacy. I was ready to kind of face the ALS landscape a little bit more, but looking out at it, I didn't see too many other young women going through the same struggles and I wanted to find people that I could connect with. So it was a really kind of organic foundation. I think that led to Her ALS Story because I got in touch with a few different people at I Am ALS.
And together, they helped launch an initiative to collect stories of young women who were diagnosed. And from that I was like, "Hey, could I have the emails of everybody that submitted their story so that I could connect with them?" I sent out an email, we started meeting regularly, so it was super organic and it's a group I think that has grown to over 50 people that are on our mailing list today. So I suggest about 18 months, which is really incredible. And then on top of that, it's all of us who are living the day-to-day with ALS, doing the work together. So it's really special, it's a really incredible group of women.
Jeremy Holden:
Alex, I want to bring you in. How did you get involved and how did you become part of this community?
Alex:
Now actually, [inaudible 00:03:13] I was working with other women and she was like, "Hey, what are you doing?" And she was the best [inaudible 00:03:21] I ever need. And like Leah, I wasn't ready to advocate [inaudible 00:03:21] and then once I got both, I feel like I would like a boy [inaudible 00:03:43], trying to help but I can't. And this has been one of the most amazing groups of women I can ever need. I call all of them my very close friends.
Jeremy Holden:
Kate, I see you nodding along in agreement. Jump in and talk to me a little bit about your experience with the community.
Kate Neese:
Yeah. Actually, ironically, Gwen is the same friend that brought me in, was constantly nudging me to get involved, to have a voice, to participate. And this was the first group that I was like, "You know what? I will! I'd be happy to join." And I had done a ton locally. Here in Boston, we have probably five different groups for ALS.
You have compassionate care ALS, who provides equipment and things to help you remain at home. ALS one, trying to unite in the fight against ALS. You have the ALS Association, local chapters, you have ALS TDI focusing on research. So I had done things locally for the smaller groups. None of it was for me. This group is the first time I engage and get something from my journey. And most of that's by giving my experience, my process, my different things I'm facing on a day-to-day. Our husbands engage with each other to support themselves through the crap all three of us go through on a day-to-day basis. I think getting together and being with my sisters and allowing our husbands to be together, the social aspect and support has been unprecedented in the field.
Jeremy Holden:
Yeah, yeah. I was just scrolling through the site a little bit earlier today and I was struck by the life hacks that are on there. So talk to me a little bit about the shared experience within a subpopulation or in a group of people who are experiencing something similar but is maybe not universal to everybody who is living with ALS, but that there are unique things of being, that you all are going through that you can come together and share and talk about.
Alex:
Yes, I'll answer to that. I know the whole page actually said it. Because I have so many tricks that I used, and so I talked to Leah and asked her if I could make that page. And so I put it with everything that I used. And then we put it out to the wider group. Then everyone has something. And they're all really specific, like not everyone with ALS needs help with their periods. Not everyone needs access to clothing. And so a lot of it was specific to women our age and you we're talking about things like how do I have sex and do it and be comfortable and make tiny miracles? You know there's someone [inaudible 00:07:46] needs in their 70s. And so we have like thing that are so specific to us.
Leah S.:
It was such a great idea on Alex's part and we did it probably about a year ago. We put it live and then a few months later already I was at my clinic visit and the nurse practitioner brought it up to me and I was like, "Yeah, I know Alex. I know that we have this on the website." And so I love that we were able to just have this idea and a lot of things with Her ALS Story, like it's not revolutionary, but for whatever reason it didn't exist before and that we're able to go out and help even just one person find a toothbrush that's going to be make their lives a little bit easier or period panties or a hairbrush, whatever. I mean, that could help your daily life so much when you're struggling with dexterity issues. So it's really cool.
Jeremy Holden:
So I saw that there was an in person gathering in Madison recently, and it strikes me that this organization launched at the dawn of or right in the midst of a global pandemic where those in-person gatherings were very difficult. It speaks a little bit to the power of the internet to allow us to come together from a distance, but I would imagine those in-person gatherings are equally important. Talk to me a little bit about that.
Kate Neese:
The virtual aspect allowed us to expand. We have people joining from around the world. We have people active in Sweden, Portugal, I think Leah just added someone from Russia maybe. So the virtual is huge. The in person that I spontaneously burst into tears or laughter, and I don't have to apologize, I don't have to explain it, I'm met with laughter or tears as well. We exchanged equipment and tried out new things and it was the first time I had used a wheelchair and instead of being ashamed, embarrassed, afraid, nervous, I was excited. And meeting with my sisters to be able to have that moment was huge. And it really tackles some of the major issues we face on the day-to-day basis.
Leah S.:
You say that Kate makes me feel like you almost needed a wheelchair to fit in with a group is just so far from the abnormal reality.
Kate Neese:
Right? I couldn't show up with just a cane, I would've been such a loser.
Jeremy Holden:
One of the things that strikes me from the site is there's a nod to kind of changing the perception of ALS or the understanding of who is fighting ALS, what that person looks like. And from my experience in this community, there is no average person with ALS, there is no average progression and journey with ALS. But talk to me about just changing that perception and foregrounding the experiences of young women who are diagnosed with and now fighting this disease.
Leah S.:
Well, I think it's kind of two part because first off, on the one hand we call it Lou Gehrig's Disease, right? So right off the bat people are going to associate it with the male baseball player. The most famous person was probably Steven Hawking, so also somebody who was male. And it's a disease that we know is very heterogeneous, is not rare, but it still has the perception that it's rare. So I think if that's all people know about it, they just know Lou Gehrig, then obviously they're going to think maybe it's affecting males more often, even though that's not the case. And then on top of that, I think seeing young women, I mean we're powerhouses. And we can really pull at people's heartstrings because society dictates that normally a 30 year old woman should still have years and years ahead of her, right?
Jeremy Holden:
Yeah.
Leah S.:
Should be able to think about having kids or starting a family or taking that next step in her career or whatever. And so to see somebody with such a difficult disease is really surprising. So that means that our voices can really be amplified and I think they make a pretty big difference.
Jeremy Holden:
A word that's come up a couple times from several of you is this notion of my sisters and sisterhood. Talk to me a little bit about the power of sisterhood and in this community and whether it's someone to lean on, someone to share your struggles with someone to just be there and support, whether it's online or in person.
Alex:
I think they just have a plan to get it. I think other women will build you up. Where you say when you want to be said. There is [inaudible 00:13:11] everything. Our husbands, our friends, they kind of get it, they live with us, they see us, but you never know what it's like [inaudible 00:13:29]. And there's so many things that we go through and having sisters that understand and can say like "I hated that too." I feel like that's so important.
Kate Neese:
I'll add too that each of us have biological sisters, but they are processing our disease on their own. When I am with Her ALS Story, I'm with another human who is going through it and there's no sense of pity or whatever other emotions I experienced from my sisters who are trying to love and support me and be present as they always have in my 37 years. But these girls just, "Yeah, that fucking sucks." Or, "Hey, have you thought about it this way or tried this?" Our entire group, even at the worst of times, remains a tone of optimism. And I think that's key for me. You can come to the group and say, "I fell today and it was mortifying and I'm injured and I'm broken." And they're there to pick me up or sit with me for a moment and then remind me, "Okay, now we move forward." Because I think part of the magic of our group is looking forward. And constantly fighting and living and not looking back and not regretting or worrying about what our future entails.
Leah S.:
Both Alex and Kate have just had perfect responses. But maybe I'll just add to highlight this, the feeling of isolation that exists I think with so many things in life, but especially a disease like ALS. And that really helps to minimize those feelings, right? Because we have our HAS sisters that get it. Because it's so, so special and I do hope it's something we've been talking about a little bit for the group's future, maybe there's a way that we could help other groups depending on age or gender or whatever, get together because it's something that's become really important to us and we would love people who maybe don't quite fit into our criteria, also have something similar that they could lead into.
Jeremy Holden:
Beautiful. Yeah, I think that's so important and something that really kind of drew me to want to share this story is this idea that within a broader community, the importance of finding people who are going through something similar to you or have a similar background and can kind of share that experience in a meaningful way. Incredibly powerful. I really want to thank you all for your time today and bringing Her ALS Story to connecting ALS listeners.
Alex:
Thank you so much.
Kate Neese:
Thanks for having us.
Leah S.:
Yes, take you Jeremy.
Jeremy Holden:
I want to thank my guests this week, Leah, Alex and Kate. We will share links to Her ALS Story in the show notes so you can learn more about them and the other women in their network. If you like this episode, share it with a friend. And while you're at it, rate and review connecting ALS, wherever you listen to podcasts. It's a great way for us to connect with more listeners. As a quick programming note, we will be off next week for Thanksgiving, but we will return the following week with very special coverage from San Diego where the International Alliance of ALS MND associations will be holding their annual meeting. We'll be dropping an episode every day that week with some updates about what we're learning on the ground in San Diego. So please check out those episodes, we're very excited to bring those to you. Our production partner for this series is Citizen Race Car, Post Production by Alex Bauer, production Management by Gabriel Lamonte-King, supervised by David Hoffman. That's going to do it for this week, thanks for tuning in. We'll connect with you again soon.