My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Turning Diagnosis Into Mission: The Birth of Lori Health
Ever Googled your symptoms only to fall down a rabbit hole of doom and gloom? You're not alone. When Asmaa was diagnosed with multiple sclerosis in 2022, she desperately searched for someone who could tell her life wasn't over—someone who looked like her, talked like her, had a career, was getting married, but was 10 years ahead in their journey who could say, "Don't worry, you'll be fine." Instead, she found fear, anger, and non-acceptance online that affected her mental health more than the disease itself.
This pivotal moment became the spark for Lori Health, a groundbreaking platform connecting chronically ill patients with peer wisdom and evidence-based hacks. As Asmaa shares her journey from diagnosis to building the world's largest library of verified habits for chronic illness, we explore the profound gap in healthcare that leaves newly diagnosed patients feeling adrift and alone. With 500 million people worldwide living with autoimmune conditions—one in ten people in the UK—this isn't a small problem.
What sets this conversation apart is Asmaa's remarkable perspective on illness as opportunity. After leaving her high-profile career in luxury brands, moving countries, and dedicating herself to healing, she achieved a reduction in her MS lesions. Rather than keeping her discoveries to herself, she built a platform making this wisdom accessible to everyone—regardless of their ability to take time off work or relocate. Through Lori Health and the newly launched Lori Peers video matching service, she's creating the resource she needed most in her darkest hour: stories of hope.
Whether you're navigating a new diagnosis or supporting someone who is, this episode illuminates how community wisdom can transform the chronic illness experience from isolation to empowerment. As Asmaa beautifully puts it: "So many people would not change a thing... It's completely unrelated from how bad you are physically. It's all here—you decide how things are going to unfold."
Delivering Happy Mail around the world!
We have sent thousands of cards to isolated illness warriors, facilitated hundreds of pen pal relationships, and reached countless family members, caregivers, and medical professionals with messages of hope and acknowledgment.
Join our mission to send 100,000 cards of support to patients with long-term illnesses.
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Welcome back to my Spoonie Sisters. Today, we're sitting down with someone who turned a life-altering diagnosis into a life-challenging mission Meet Asma. She was diagnosed with multiple sclerosis in 2022, and, like so many of us, she faced a wave of isolation, fear and endless googling that left her feeling overwhelmed and alone. But instead of staying stuck in the chaos, she co-founded Lori Health, a groundbreaking platform and the world's largest library of verified habits, life hacks and, of course, tools shared by real people living with chronic illness. And who better to tell us all about herself than Asma? Hello and welcome to the show.
Speaker 2:Hi Jen, I love the introduction. Thank you so much. You know what I felt like. I went back in time in my journey, feeling all the emotions, feeling all the vibes, and it's really a pleasure to have this conversation. So thank you for having me.
Speaker 1:Oh, of course, it is such my pleasure, thrilled, to dive into all of this with you, but let's start a little bit back with your story. What led up to your MS diagnosis in 2022? And how did that impact your life emotionally and physically?
Speaker 2:Yeah, I mean, you know, it feels like forever because so many things have changed since I was diagnosed. I'm sure you know many people can relate to that. I wasn't like. I never really had any health issues in the past, so I must say I was not so connected with, you know, with my body or things that I would feel.
Speaker 2:I remember very clearly in August 2022, I started feeling tingling and numbness in my legs. I was, I was still able to move and to walk, but I had this like constant tingling sensation. I was like it's weird, you know, like after sometimes you get a few things like for 10 minutes, half an hour, and then it, you know, it disappears and you move on. But that stayed over about two weeks, the numbness as well. Then it disappeared. Then I had a burning sensation in my legs, my entire legs, like such a weird feeling that I never experienced. I thought I burnt myself in the sauna because I went to the sauna at that stage as I was traveling. So that was it so tingling, burning sensation, numbness, and then I had vertigo at some point. So this is all August, September, October, so it would be for like two weeks, then disappears another week and on and off, and I started tracking my symptoms because I was like this is weird. Now there's some kind of patterns that I'm observing and I think when you get something the first time, that feeling you're like, okay, it's going to disappear, you don't really track, it Comes back, it comes back, it comes back. And then you start trying to look at the patterns and I started connecting with my body.
Speaker 2:I would say after a month and a half I called my GP and I was like okay, this is what's happening. And my GP is like the best thing you can do is to see a neurologist. However, if you go through the NHS, which is the public health care system in the UK because I live in London if you go through the NHS, it's going to take a few months for you to be able to see a neurologist, like up to two to three months. And he's like the best thing you can do is to show up at the A&E, possibly in the morning, because it's quiet, there's a change of shift, so show up at 8am and you might be able to see a neurologist who is on on on site. So I was like, okay, I remember feeling like what's happening? What am I getting into here? Like it felt like a whole. It felt like a little project that I was not really interested in getting involved. But at the same time I was feeling things and I was like, no, I need to be responsible.
Speaker 2:So I went to the a&e first time. I didn't I remember waiting for like four hours, which is the average time, the average waiting time in the in London, in a, in a hospital, in the public hospital. I saw first team of doctors. I didn't do an, I was not able to do an MRI or anything, I was just like examined and then you know, it can be a nerve sprain, it can be many things. The MS symptoms are a bit weird in that way. It's not obviously MS, it can be many, many other things. So I wasn't able to do an MRI or see a neurologist on that day, but I ended up going back to the A&E about three or four times until I was able to actually have an MRI done. And then I was seen by the professor of neurology at the hospital who diagnosed me.
Speaker 1:Wow, that is a lot and a long time to wait, which I'm pretty sure a lot of listeners are used to experiencing this.
Speaker 2:That's actually not so long, to be honest, compared to for UK benchmark. So I was diagnosed in about four months in total, and some people get diagnosed in years because their neurologist asked them to really be able. So they need to observe a lot of time between each episodes, between each flare. There needs to be a clear separation between flare one, flare two, flare three and then you can be diagnosed. So in a way, I think I was lucky to be diagnosed quite fast for UK.
Speaker 1:Yeah, yeah, absolutely Forgive me. I may be wrong, but I think it's the same here in the United States as well. Have you had any experience with health systems in any other countries?
Speaker 2:I did actually because I'm French I'm sure you can hear from my accent who won't leave, even after living abroad for 13 years. But yeah, so when that happened I was like, okay, I need to have a second opinion in my home country. Somehow, also having the conversation in French about my symptoms felt like it was more real in a way. It's weird. Obviously, your mother language is your emotional language. So I went back to Paris privately, did a few MRIs as well and they confirmed my diagnosis. But because I went the private way in Paris, it took about a week for me to get my diagnosis.
Speaker 1:Wow, that's incredible. And through all of this, what was it like? Did you feel a level of isolation, like you couldn't talk to people about what you were going through.
Speaker 2:Oh my God absolutely Because you know what. You don't know what you're going through yourself. That is the worst thing. You yourself, you don't understand what's happening in your body. There's some kind of a separation between you, your mind, your emotions, and what's happening in your body. There's some kind of a separation between you, your mind, your emotions and what's happening in your body because you've never experienced that. So it's so hard to kind of even explain. It's hard to explain something you can't explain to yourself right.
Speaker 2:Then you start panicking and the fear takes over and it's a really complicated road. So you end up basically Googling things. You end up searching for someone who's been through what you're going through online. Like you know, you just want to kind of self-diagnose because at this stage you're not diagnosed right. So you're really trying to find answers worst behavior ever. But we do that because we are afraid. So before the diagnosis I would try to understand, like, what is this? And then, after the diagnosis, you still feel really isolated because, like, I'm very lucky to have a very strong support system.
Speaker 2:However, I wanted to speak with someone with MS because, even with an understanding of my symptoms, even with a label, like nurses, I could read about it on the website of the NHS.
Speaker 2:I could read about it on the millions of articles and charity websites and medical papers. There's a lot of information out with someone who's been there, someone who looks like me, who talks like me, who has a career, who's getting married which was my case when I was diagnosed but who's 10 years ahead of me in the journey and who's like, don't worry. Like I know you're panicking right now Like this is all the alert, the serum alerts are on. However, you will be fine. You'll be fine because there's a lot you can do. You'll be fine because medication has advanced. Even though that wasn't my choice I didn't take medication eventually, but I wanted a reassurance and all I could find on social media, on Facebook groups, was a lot of fear, a lot of fear, a lot of anger, non-acceptance. It was very violent what I could see online and actually that affected my mental health more than the disease itself, I must say.
Speaker 1:I happen to agree with you and even though we're part of different groups because I have RA and you have MS, it's so similar. And you get all these Facebook groups and when you're first diagnosed, okay, I want to go check this out, I want to hear from people that are like me and get it, and I'm hoping they'll ease some of what I'm feeling. And then you get into these groups and you hear a lot of complaining, like you said, fear, there's a lot of emotional reactions and a lot of bashing on doctors and medications and woe is me. My life is over. That's not always what we're looking for. Good, no, absolutely. I don't know about you, but when I was diagnosed, I was only 32. I wanted comfort. I wanted someone to say your life is not over, you still have a beautiful life ahead of you.
Speaker 2:Oh, no, no, I mean I so relate to you honestly, that's all you. Thank you, oh la la, I mean, I so relate to you honestly, that's all you exactly. You just want someone who's going to tell you listen, right now it feels like hell, it looks like hell, it's very uncertain, it's very messy. However, if you stay hopeful, if you stay positive, you are going to be okay. And I must say, being three years down the line now, I will talk about all the things I've done to manage my condition, but the one thing that has made the biggest difference in how I turn out is how I felt mentally, is the belief that I'm going to be okay, and I could not find that online.
Speaker 2:When you've never heard about multiple sclerosis, your algorithm is not showing you the right types of profiles that are positive, hopeful, strong, which they are now I can see, and like you're the proof of that, like you're the proof of positivity, we can do it. Let's do it together, community sharing, love, hope. But when you're first looking for multiple sclerosis on Instagram or on Facebook, you don't find positivity. Oh my God, absolutely no. Yeah, that was the toughest. More than the illness, more than the symptoms. It's like you're looking at those stories and you're like okay, so that's it. This is my life now. This is what's ahead Brilliant, amazing and you even have started fighting. You're at the beginning of the journey and you already want to give up.
Speaker 1:Absolutely, and that's not encouraging. That's not what we need and it's like you said, emotionally. We need that comfort. We need those words of wisdom of people, even if they're just a few years down the road. I mean, look at what you are today and what you've built. You are that for other people and we need to spread it like wildfire. I love that we're seeing more of it, but I want it to keep going. We need more people like that.
Speaker 2:We absolutely need the collective effort to change the narrative around the diagnosis because at the end of the day, there's 500 million people living with an autoimmune condition in the world. This is not a small group. 500 million people is not a small group. It's one person in 10 in the UK and that's just the diagnosed people. And, as we know the way those conditions manifest, you don't necessarily force a diagnosis. You just live with the stomach pain, you live with the diarrhea, you live with the tingling, you know, and you just get used to the pain.
Speaker 2:I forced my diagnosis by showing up to the A&E week after week. I took the Eurostar to Paris. I got my diagnosis in France. So like I really forced it and I know like many people obviously don't do that or they cannot do that. So that moment of being diagnosed and you're in a crossroad and you have to choose which outlook are you going to adopt when you don't have a role model, is so, so, so isolating. I must say, just to wrap up on your question, I felt like that was the end. I felt like my fian the end. I felt like my fiance would leave me. I felt like, you know, I would be on my own, I would lose my job. I had all those nightmares because and it's all fantasies, right but when you see those negative stories and no positive stories, of course you're going to think that 100%.
Speaker 1:It's hard not to go there? Yeah, because you start to, in a way, feel what is around you, and if everything around you is negativity, it's hard to stay positive. Now, what gap did you notice in the chronic illness space that sparked your idea to begin Lorry Help?
Speaker 2:Thank you for that question and it's exactly what I was talking about in lowering health. Thank you for that question and it's exactly what I was talking about my experience in not being able to find positive, action-orientated content and information when I was diagnosed, the fact that I had to become a detective or an investigator to track down people who created videos on YouTube 12 years ago about how they've been living symptoms-free for 10 years and I would be like, okay, this is the person I want to talk to. How can I talk to this person? Then I would go into the comments. How can I talk to you? Try to find them on Instagram. Try to send them an email, do they?
Speaker 1:have a book.
Speaker 2:Obviously people don't respond because they moved on from that video. They're not waiting for your comment. 12 years later, and I was like buying every book, listening to every podcast, I'm like, yeah, surely there must be another way. So I actually left my job. I left my job, I moved to South Africa, which is where my fiance back then used to live, and I have done research for like three months Every single day. That was my job. I would wake up, I would research, okay, and then I would start seeing patterns between all the information. I would see vitamin D, meditation, gluten, alcohol, dairy sugar and I'm like, okay, there's some kind of thread between what positive actions orientated people are doing. Somehow they're all doing the same thing. So there must be something for me there. And then, as soon as I started building, as soon as I was able to build, my protocol in a way, I just applied it like religiously every single day for six months.
Speaker 2:And I must say that I was in a very privileged position because I was able to leave my job, move to a different country. That has a huge impact on your finances, on your career choices, but I was willing to take that risk because you realize I love the saying you have 1 million problems until you have a health problem and then you realize you only have one problem, which is your health, and you have to fix it. So I gave up my job. I was working for luxury brands in a very high profile luxury brands in London. I had an amazing job, an amazing career profile for the future, and I just gave it all up because I'm like, well, if I don't have my health, I might as well, you know, like what's the point of all this? So it took me yeah, it took me six months of really practicing this new life, this new protocol, building new habits and we know how difficult that is to get to a point where my MRI actually showed a reduction of my lesions in my brain and in my spinal cord, so my inflammation reduced and I no longer had symptoms. Oh, that's wonderful. Yeah, I remember I was so emotional. Today I got that letter and I realized first, I'm extremely happy and grateful. Second, how unfair is that? How unfair is that that I can take time off, I can move to a country where there is sun, where it's slow pace of life, I can take the time to recover, to connect with my body, take care of myself and do all the research that I did when most people can't. Because if you have kids to feed, how are you going to drop everything and move across the world? If you have a mortgage to pay or if your partner is not working, you have to provide for your family how can you do that? So that's how Lorry started.
Speaker 2:So, with my now husband, who's building Lorry with me, we really want to make it easier for people to first of all, find peer support. But I mean actual peer support, positive actions, orientated peer support, without having to harass or hack down people on Instagram or on Facebook or on charity forums to find them. It should be easier. There's no reason why peer support is not organized and structured in a way that you can easily find someone who's relevant to you as well, Like I'm a woman, I'm 37. I want to connect with a woman with MS who's you know, who was able to have kids with MS, for example, because I'm thinking of starting a family.
Speaker 2:So there is that social layer that needs to be taken into account in peer support.
Speaker 2:There's that lifestyle kind of environment as well that needs to be taken.
Speaker 2:Like there's a lot of, there's a big social element in how we want to connect with someone with our condition. Our condition is not the only connector between us. Because we are human beings, we need to be able to have something beyond that, to kind of connect and learn from each other and then making people's stories and the things that they've done to get to their point of being in control of their illness or in remission more accessible. Like if I'm about to take a medication, a specific medication, knowing that, let's say, I have three other autoimmune conditions. I want to be able to speak to someone who's exactly in my case and I want them to tell me how did they compare the medication, between all the choices that they had, what the doctor said to them, what made them decide for that medication instead of this other? Like it's so specific and we know how specific those choices are and we always have to make decisions for our health. So that's why we came to really wanting to build that platform for people.
Speaker 1:It's all about community and wisdom also, right. Can you explain how it works and why real life hacks from fellow patients can be so powerful?
Speaker 2:Yeah. So right now, the way it works, we have an app that gathers in a very structured way the habits and the hacks that worked for people, based on their condition and on their symptoms. So it works with the profiles. So if you go in there, you go on, lorry, you're going to find my profile as asthma, with my illness, all my symptoms and then the list of every single habit and hack that I've developed to manage my condition. Now, of course, we know that every condition is different and it manifests differently in every body.
Speaker 2:However, we know and there is an increasing number of research that there are some common threads between the different people and, beyond nutrition or physical activity or mindfulness, there are things like how do you prep for your GP appointment, how do you prep for urologist appointment when you have 15 minutes with one person that basically holds all your dreams and your hopes in life in their hand and you see them once a year and you know you're on the clock? You better show up ready for that chat and how do you prep for that, for example? So how do you talk about your illness to your family to bring them with you in the journey so that they can champion you. They can encourage you. The day you have your MIs, the day you have your neurologist appointment, we're with you. Let's do it Because people don't talk about it, because it's still so mysterious those illnesses, they are still so unknown.
Speaker 2:Therefore, people don't dare ask those questions.
Speaker 2:But you need to educate everyone around you so that they can make you stronger, and that's the full cycle, right?
Speaker 2:So right now, you can find habits and hacks for every person that is in the community. You can decide to try things, you can track your symptoms and what we are launching as we speak we launched three days ago is Laurie Pierce, which is a way for people to connect via video call with someone that we match them with. So that's completely new, because we realize again that social layer is very important, right? So if you come to me and you tell me I have ulcerative colitis, I'm a mother of two kids, I'm planning on changing medication, I live in Ireland, I have ulcerative colitis, I'm a mother of two kids, I'm planning on changing medication, I live in Ireland, I know exactly who to connect you with, because we've built that community from scratch. We know every single person who is in the community and if we can fast track that process, for you to find your friend, your autoimmune friend, that you can have a chat with and check in on. Then we're winning.
Speaker 1:I'm excited for this. I can't wait. What role has mindset played in your journey? Did your relationship with your body or identity shift after your diagnosis?
Speaker 2:I love that. And you know what? I actually never reflected on that. How did it shift between before the diagnosis and after the diagnosis? So mindset, you're right. We did like touch upon that before.
Speaker 2:Mindset is the one thing that kept me standing. It's the only reason why I'm here and having this conversation and building this company, because I believe I always believe that everything happens for a reason. I'm a very spiritual person. I have a religion that I'm born with and I practice, and the pillars of my religion are influencing the way I see life. So when I got the diagnosis, as much as I suffered mentally and physically and emotionally, I found a way to be grateful because I knew that everything happens for a reason and if I'm sick, there's a bigger reason why I'm sick and that I should accept that this is a bigger organization and that something good is going to happen out of this. So I really really practice that gratefulness, behavior and habit every single day, like journaling, meditation. All of that helps and that really, really helped me.
Speaker 2:Now, in terms of the change between before and after the diagnosis, I would say that I'm more resilient because you realize again, until you have a health problem, you never had a problem. I would stress out for anything. I would stress out for work. I would stress out for being late. I'm late to a dinner 10 minutes. I'm running like a maniac. Why so? This has changed. You just see life differently once you go through such a traumatic experience. You're less fazed by things like things happen and you realize there's a cycle. If I've managed to get over my diagnosis and accept that maybe at some point I will not be able to walk or to see, then surely I can be okay if someone is late for dinner or if I'm late for dinner, so more resilient.
Speaker 1:I love that. I think I can echo that. I see that shift in so many of us. I think it makes us more not only aware of ourselves, but more compassionate to other people, and I think that's why I wouldn't change aware of ourselves, but more compassionate to other people and I think that's why I wouldn't change a thing, because I love knowing that I'm more compassionate and I've surrounded myself with people like you that are more compassionate. We need more of that in the world. Yeah, compassion is a beautiful one as well. Thank you for sharing what's one message that you'd share with someone who just received their diagnosis of MS or any kind of chronic illness diagnosis, and they're feeling completely lost.
Speaker 2:Yeah. So compassion comes to mind because you know, no matter what anyone tells you, you know that it's very tough. It's very tough and it's very lonely. However, what I would say is I understand what you're feeling. I understand that everything feels very, very dark now, very, very dark. I understand that you don't see a positive outcome from this, and I'm here to say that there are millions of stories of people who are doing so well and who are so grateful for their diagnosis so grateful.
Speaker 2:So many people would not change a thing. I'm not. It's completely unrelated from how bad you are physically. It's completely unrelated. It's all here. It means you decide. Basically, you know how things are going to unfold. I would tell them to join LORI 100%, basically, because this is it. This is the one mission that we have. The one mission that we have is to be the first touch point for every single person who gets through a diagnosis. Just seeing one story, two stories, three stories, what people do, how they feel, and that's it, because there's nothing like a story to change behaviors. Stories are the most powerful thing we can ever convey, and that's what you're doing with the podcast.
Speaker 1:Thank you. How can people in our community get involved with Lory Health, either to explore tools or to share their own?
Speaker 2:So you can find us on loryhealth, the website. If you type loryhealth on your phone or on your laptop, you can join the early access to get access to the app, because we're still early in the launch. You can't get it just by looking for it on the website. So you'll get an email. As soon as you share your email, you'll get an email back from us with the process to download the app, which is available on the Play Store and on Apple Store and in there.
Speaker 2:Once you download the app, you can create your profile, you can start sharing habits and hacks, and if you don't feel like you're in a place to share habits and hacks which is totally understandable you can still discover everyone else's habits and hacks. So there's a search tool in the app where you can Google or you can search for people. You can search for turmeric, because you've heard about turmeric. You can search for tingling, if that's what you're going through, and it's very easy to navigate. For lorry peers, there's also a link to get access to the peers that we currently have available in the community. So right now we're covering ulcerative colitis, crohn's and multiple sclerosis only because we are looking at how best can we support the community, and so we want to achieve a few peer sessions before we expand it to more conditions and to more peers. So you can also find Laurie Pierce on the website and, of course, on Instagram. We are Laurie, which is the most yeah, it's the center of all the updates that concerns Laurie.
Speaker 1:Perfect. Finally, what gives you hope right now, personally or in the broader chronic illness community?
Speaker 2:Love that there's a few things that come to mind. The first one is when I see the result of big study papers that finally link some bacterias in the gut and multiple sclerosis in people, I'm like because there's a first one that was shared about a month ago and it was quite groundbreaking. I was celebrating that day because I'm like finally we're having the conversation around the gut, which is what we eat and more, and the condition. What does that mean? It means that if you change the way you eat, potentially you can change the way your symptoms show up, which is such a big step because most often when you say that you're not taking medication or you're managing your condition a different way, it can be a lot of questioning and fear and woo that comes with that. When, in reality, like my dream and that's one of the reasons why we're gathering data through LORI is that I want to be able to run the biggest survey that's been done in terms of, like, day-to-day behaviors of people and be like, look, there's 1 million people who are not eating gluten, who stopped eating gluten, and they are all reporting a decrease of tingling or numbness. Like maybe there is a link in there. So that gives me hope because it's one step forward in understanding better how those conditions show up and why.
Speaker 2:And the second is when we receive messages on the Instagram account of people and I'm sure you can relate to that of people who are like I saw your meditation. I had one this morning actually. I saw your meditation, the meditation that you share in your habits and hacks in your profile, and I've done it for a few weeks and I'm feeling much better. I'm back to therapy and I just want to say thank you. I mean, that's it. That's it. If I can turn what happened to me into that, what else do I want? And we know the silent majority is there, which means most people will never tell you if that impacted you, but if one person says it, it means there's a lot who were impacted and who are not saying it, which is okay, and that makes me feel so hopeful.
Speaker 1:That is such a beacon of hope, which is okay and that makes me feel so hopeful. That is such a beacon of hope. I love your example. Well, thank you for taking the time to share your story and everything that you've been working on.
Speaker 2:Thank, you so much. Thank you for having me. It was really a pleasure.
Speaker 1:It was my pleasure too. Well, thank you, Listeners. Until next time, don't forget your spoon.
