Episode 19 - Matt Brown: Adaptive Gaming, Beating Cancer, and Streaming for Good

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Maddy: This podcast is recorded on the lands of the Wurundjeri people of the Kulin Nations. We pay our respects to the traditional custodians of this country and elders past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Larissa: Welcome to today's episode of No Spoons to Give, a podcast where we explore life's ups and downs with neurodivergence, chronic illness and disability. And we chat with the wonderful voices that make our community so vibrant. I'm Larissa, head of community at Spoony. And I've got the lovely Maddy here, our Spoony community manager. How are you, Maddy?

Maddy: I'm doing well. I'm feeling fueled by coffee and just general excitement about the wonderful guest that we've got today. How are you going?

Larissa: I'm good. I've just had a double shot coffee. I'm glad you enjoyed yours. I wasn't sure about if you had chocolate in your cappuccino or not, but I'm glad we're learning this in real time. And I'm glad to hear you enjoyed the coffee.

Maddy: I did very much. Thank you.

Larissa: I'm so excited for our guest today. But before we head off into that, I want to share my recommendation for the week.

Maddy: Please.

Larissa: So, mine is actually a book. And I just finished it probably two or three days ago. It's called So Thrilled for You, and it is by Holly Bourne. It's a fiction book and it's based on the lives of a group of best friends from university. However, they're now in their thirties. And they're navigating a lot of the things that women in their thirties can navigate. And it all comes to a head at a baby shower, when somehow someone causes a wildfire from one of those... You know the gender reveal bomb things?

Maddy: Oh, yes.

Larissa: That sort of a wildfire.

Maddy: Oh, my goodness.

Larissa: And there's like an investigation. It's quite wild. But the book explores some really important topics, particularly for women as we approach that age of 30. It talks about relationships, motherhood, fertility issues, choosing to be childless. And then also topics like raising children with wealth, raising children without wealth. I just found it was super interesting. And the way they explored it was just really measured. And it wasn't just a little thing they touched on. They explored it really. Well and it was just one of those books that was put together really well and just got me thinking a lot. So, yeah, I definitely recommend that.

Maddy: Thank you. I'm definitely going to have to read that. It sounds so interesting. I really love a book that does a deep dive into these issues that aren't really talked about so much.

Larissa: Yeah. I also learned, I didn't know this, but babies wake up every two hours, something like that too.

Maddy: Oh, my goodness. Poor Nick - Nick has a baby. My recommendation for today is surprisingly not a book. It is a film. I do love films, I just want to put it out there. I don't only read books. But this film is called 'Then Barbara Met Alan'. And it's a film that tells the story of two disabled cabaret performers who meet at a gig. They fall in love and start campaigning for disability rights across the UK. It's this hugely big-hearted film that's based on a true story. And it stars the incredible Ruth Madeley, who is one of my favourite actors. And she absolutely just shines in this film.

I love it. I think it's on Netflix, at least in Australia. But I totally recommend it. It's really nice to see a story that is centering disabled people and is actually portrayed by people who are disabled. And tells the story of some disability activists who... I mean, come on, we need more films, and TV shows, and stories about them, because they have really been the people to change how disability is perceived. And we need to give our thanks to them and to celebrate their stories.

Larissa: Absolutely. I'll definitely check that one out. That sounds incredible. And seeing disabled people get the representation they deserve in media is so powerful. Thank you for sharing that.

Maddy: My pleasure. Today, we'll be chatting with Matt Brown all the way from Canada. Matt is a Spoony user and also wears many entrepreneurial hats. He shares some of his life online with chronic regional pain syndrome (CRPS) and also his cancer journey. And we're really looking forward to this chat.

Larissa: Welcome, Matt.

Matt: Hi, ladies. How are you today?

Larissa: We're great. It's quite early here in Australia. What time is it over there at the moment?

Matt: It's 7:15 PM.

Larissa: Okay. That's a nice time.

Matt: Yeah, it's downtime now.

Maddy: That's good. Downtime is good. So, Matt, could you kick us off by telling us a little bit about yourself?

Matt: So, I have many different hats, like you've said, that I've worn across my life. Essentially, my last 10 years of my life have really been where I've flourished and advocated based on really events that have happened in my own life. So, at the age of 33, through a sports injury, I ended up breaking my leg in a pretty nasty fashion, which ended up leading unfortunately to what was a non-union break, which led to a plate and screws and surgeries. And literally, after a year and a half of fighting, I was still living in an air cast, and a boot, and crutches, and trying to figure out what the heck was going on. I was finally put down a path where we were able to determine obviously that something, yes, had occurred. And its big, ugly breath was the word CRPS or complex regional pain syndrome.

So, along the way with my injury, I had done enough soft tissue damage and nerve damage that I actually ended up severing my sciatic nerve in my foot itself. And through the chronic pain loop that your brain ends up creating when you have essentially a nerve cut, the way that I had. The easiest way my doctors could explain it to me was it was like having phantom limb pain, but with still having your limb attached. So, all of that constant brain feedback loop of your brain saying, "I'm in pain," but your body is saying, "Wait a second, but I've healed, but how am I still in pain?" And it just keeps going back and forth. So, you're left essentially with the spasms, the atrophy, the constant chronic daily living of pain within the affected limb itself.

And then as time goes on, that brain loop, what we've learned through I guess the first five years of my diagnosis, was things spread, unfortunately. So, with it being essentially diagnosed as a central nervous system disorder, the condition itself can spread through the central nervous system, travelling through the spine, travelling across sciatic nerves. So, I now have what's actually termed referral pain. So, my left side of my body now mimics the pain in my right side, but I'm left primarily with the atrophy on my right side of my body. So, through all of that chaos and trying to live in my thirties, trying to understand how I was no longer an athlete to a certain degree. Trying to figure out and still be a young dad, how to try and be a career professional, how to still just be a friend to everyone.

I was fighting a lot of my own battles, which unfortunately through, like I had led in our precursor, sometimes things get swept under the rug. And unfortunately, with my CRPS journey, because of the way pain had presented itself, and was affecting my lower back and other problems during I guess a good one-year battle, halfway through my CRPS journey, I ended up developing something that we didn't ever expect. And to be diagnosed essentially at 38 years old with testicular cancer, it rocked my world more than I could've ever imagined. CRPS, while it's something that really focuses on the negative side of things in the health world, doctors refer to it as the suicide disease.

You're oftentimes left with not a lot of hope left. Living in the chronic pain world, you're kind of left to your own devices of everything. And then on top of it, to be diagnosed with cancer, it literally rocked me to my core. Part of that, at 38 years old, I was ready for in a mindset that I had already fought myself so hard to get back uphill again to regain a life. So, I knew that mentally I was going to be okay through a cancer battle. I just physically didn't know if my body was going to be able to handle it. Going through what I had already gone through with my atrophy and severe muscle wasting over a five-year period, I really didn't know what was going to be next and how much worse things could be.

There were things along the way that when I really introspectively look back. Things like in 2019, being able to get a spinal cord stimulator installed, that absolutely changed my life. It helped me in a chronic pain setting, where I could control my pain a little bit better. I could take myself off of Percocet and opioids. I could live more comfortably with technology at my side. So, I knew I had devices to me. I just really didn't know what the next step was going to be, because there's the question always of what happens if chemo comes into play. What happens if radiation comes into play? How much worse does that make it on an already frail and chronically riddled body, essentially in itself?

And it raised a lot of questions, things I didn't touch in our email when I responded back to you guys. But it ended up creating scenarios where I'm thinking back to opportunities that I had within my doctors at the learning hospital, having my spinal cord stimulator, and then all of a sudden having testicular cancer thrown at me. The very first thing that they said is I was actually a candidate that would never qualify for radiation, simply because of having a stimulator in my spine. So, when you're already afraid, and you've already been diagnosed with cancer, and then you have literally one of the first two forms of treatment immediately taken off the plate, you're then left to, okay, how the hell is this really going to happen?

So, luckily, along the way, while I was very rare in my diagnosis with the seminoma tumours. So, I had what was called a dual node seminoma. I had a testicle tumour at the top of my testicle and at the bottom. But what was found during my surgery... We were expecting 45 minutes of a surgery, kind of like an in and out chop, get yourself out, kind of almost like farm animal perspective, is easiest way they explained it to me. But while they were in there, they ended up actually finding out that I had five lymph nodes affected. And essentially, on the spot, I was also diagnosed with lymphoma. So, I had five lymph nodes that ended up needing to be removed, which essentially took all connective tissue directly up to my belly button. So, it was almost all connective tissue, muscle, nerves, everything that would come into play with those lymph nodes itself were removed. And that ended up being about a four and a half hour surgery.

Larissa: That's a major surgery.

Matt: Absolutely.

Maddy: It's huge.

Matt: So, you go in expecting the easiest, because of what's showing up on an MRI. And then between having to wait from my MRI to then the surgery itself, literally lymphoma snuck in, in a split second itself.

Larissa: And then are you being told that information after you wake up from surgery and they're telling you that? You're just finding that out?

Matt: Absolutely.

Maddy: Oh, my goodness. And when you're-

Matt: Absolutely.

Maddy: ... a bit not with it from literally being in surgery to finding that out, I mean, there's no easy way to get that news, but I can't imagine that that is an easy way at all.

Matt: For my wife, I will give her the absolute words towards this - it created PTSD for her, essentially for the rest of her life. To be in a scenario where we walk in and we say our goodbyes, we say, "I love you." So, we don't know what is going to happen, because anything can unfortunately happen during surgery. And for her then to be sitting in the waiting room and time to just keep clicking, and ticking, and ticking, and ticking, and her asking questions. And everything literally went as good as gold could be for my surgery. So, there was no worries and concerns from there, but when they told her we found more cancer and we're taking it out, that is when it finally hit her like, holy crap, this is actually happening.

For whatever reason, we were able to deflect, and defend, and protect ourselves to a certain degree because it seemed like testicular cancer should've been such a simple surgery. And then, essentially, to come out of everything and me to wake up hours later. And literally, I have no idea what's happening, other than now my stomach's hurting. I wake up from surgery and I'm like, "But I didn't have surgery on my stomach." And they're like, "Oh, but you did." I'm like, "But what?" You're waking up, you're talking with doctors, you're talking with nurses. You are a little hallucinating to a certain degree. They're throwing this new information at you. You're trying to process it all. Your spouse beside you is in absolute tears, learning essentially everything that happened at the surgery same time as you.

And it was a scenario where I'm glad I can talk through it. So, much came out of it. There's so many side stories that led to other things. But it's really given me the strength and courage that when I am meeting other people who are diagnosed with cancer, I'm able to really walk family through the mental health perspective of things ahead of time to have themselves prepared and ready. And using every single tool and available resource to them. And don't be like Matt. And it's stupid to use myself in a verb, but just don't play the stupid thing like we did and laugh it off, assuming that everything was just going to be okay. Because at the end of the day, you really don't know. And I had to learn it the hard way.

And it was a very large wake up call for me. Post-surgery, really recognising how severe my case could've been, because essentially where the lymph nodes in the cancer had stopped itself, I'm literally centimetres away from my lungs. So, unfortunately, most people in the dual cancer scenario, lymphoma tends to lead to larger things in the male body. And like I've learned along the way, a lot of males like myself push things off to the side. And they're like, "Oh, it's fine. I'll get to it. I'll get to the doctor when I can. It's okay. I have other things going on." It literally changed every single thing about me that day, every single aspect of me, the way I speak about that to other people. And essentially, how we have to take care of ourselves at the end of the day, because you never know how much time we really have kicking.

Larissa: Thank you so much for sharing that. And the way you also just shared it in so much detail, and bringing your spouse's experience into it, and just encompassing that whole family experience and all the things you go through. I've never been through a cancer diagnosis or had anyone close to me experience that. But I feel like the way you painted it is just really showing how devastating it is and all of the different things that can happen when you go in for what they say is a straightforward surgery, then to come out with another diagnosis and a more severe diagnosis. Thank you so much for being vulnerable with us and sharing that.

Maddy: Yeah, thank you.

Matt: Years ago, it came with tears. Years ago, it came with a lot of immediate and urgent therapy sessions needed after talking about. It came with a lot of, I guess, understanding from now the work that I've done, hearing other people's cancer stories, and how the trauma defines who we are moving forward and we choose what we want to do with it. And it literally created an entirely new version of me that took everything I had ever learned in business, through friends, through family, through everything, to essentially just create a network of human beings that care and matter at the end of the day.

Larissa: So, you do a lot of work in the community space. And do you connect with a lot of other cancer survivors or cancer patients? Can you tell us a bit about what you do in that space?

Matt: Yeah. So, essentially, with the work that I do, it's twofold. The first part being the cancer focus. So, what I've primarily done with this organisation is through the charitable streaming efforts that I've done and through the community of other streamers who have joined our organisation, we charitably stream and talk about our daily lives. We do our thing on Kick and Twitch. And at the end of the day, we end up obviously talking about a charitable message or drive, or an overall organisation, or cause, or mission. And for myself, essentially, the funds that we create as streamers through the organisation, end up turning and paying for what we essentially just term it's a personal care bag.

So, we have two leading partnerships with cancer hospitals in the Toronto area. And essentially, any new cancer patient that walks through their doors the very first time, they're introduced, obviously to a cancer ward, a hospital setting, everything. The first thing that they're met with is actually a support bag from our organisation-

Larissa: That's incredible.

Matt: ... which has super small memorable things in it. You're going into a hospital, sometimes you're going to forget a toothbrush, you're going to forget ChapStick, you're going to forget hand lotion, you're going to forget antiseptic wipes. All of those smaller things we put together with an activity book, reading book, for the children's, bags that we create. We're actually partnered with a dear friend of mine who's a children's author. And we put in her books into the bag as well. So, we give something for the parents to read to their kids, if it's a longer hospital stay. Or if it's adults or young teens, they get appropriate bags to them as well. And essentially, it's to really offset and give them really...

If they're about to be entered into the hospital for a stay itself, most of the times it's those small things that people forget and we just want to really let people know I've been there, I was that person, other people have got your back, too. And it doesn't always have to be about your everyday support perspective of having a group come together, sit in a group setting, talk about what they need, they want, life, everything. It's not really in that perspective. We do the personal care bags behind the scenes. And that all comes from the charitable streaming that we do. And then the second aspect that I do as the CEO, and I guess the face of the company itself, is I've travelled across the United States and Canada.

I've held now eight different public events across New Jersey, Los Angeles, Kansas City and Toronto, and then up where our cottage is located. I've partnered with smaller organisations that are LGBTQ forward, to be able to essentially bring gaming to their network of people. I've never cast anyone off to the side in any way, shape or form in my entire life. And there are people that equally needed as much happiness through gaming as I did through my cancer career. So, I started to branch out and offer support to other essentially factions of life that I see, in different guilds of life that I get to operate in. And the second piece, really outside of the LGBTQ front of me operating gaming for them, is working within the chronic pain space.

People within the Spoony world may actually know a company called Abilities Expo. And I've partnered with them in the past and been able to run gaming events at their expos, which really focus primarily on adaptive gaming. So, what I've experienced along the way through the cancer battle and the LGBTQ front is, like most, I'm an adaptive wheelchair user in the Spoony world. I understand what it's like sometimes to have the invisible illness. And most kids are so endearing and so open about things, but their parents are the ones sometimes holding them back and are shy, because they themselves have a special need in regards to adaptive controllers. So, it's something I know we had talked a little bit again through the email itself and really what the adaptive setting is, so I'm sure we'll get into that a little bit later on itself.

Outside of the two cancer hospitals itself, it's allowed me through social media to create personal one-on-one connections with other cancer, essentially warriors and survivors. And last year, we took it upon ourselves to actually start creating larger postal boxes that we could actually ship from my space, my gaming space to direct to home to them. So, instead of being able to provide a small little personalised bag at a hospital setting, we were able to actually send out another cancer survivor last year our largest box. Went out weighing almost 17 pounds of goods. And that was donation from businesses, hotels, small independent craft owners. And then on top of everything else, my mom, knitting her a blanket to give her something warm while she was going through chemotherapy.

It's really grown in its scope and what it can be. And the biggest thing that it really gave me the opportunity was to be able to obviously champion my cause to the bigger population of people with cancer. But then be able to really mould my own voice in the gaming community to understand and show other gamers what a charitable organisation can truly be in a gaming scenario, and what it gives back to the end user. So, each of the people that essentially make a donation through when I'm streaming online, if they know it's going to a specific person in the end, essentially my sign-off to the public is really showing the receipts of every single last dollar value of what gets spent to go into that personal care bag back to the patient itself.

So, I then usually take a plain white T-shirt with our company logo on it. And then on behalf of all the streamers and all of the public members that make a donation, I actually write off on the back of the shirt itself. And then when it goes to that cancer warrior, they know that these are all the people that are now... Sure, it's my business's army of people, but it's now individualised to that person. And they know that all of those people at the end of the day made a donation to this person for them to have essentially worth and need within life itself, just showing that they matter.

Larissa: That is so beautiful. And I love the idea of those personal care bags. I imagine going into hospital is such a scary time. And having a confronting diagnosis to have something like that, but not only from people with lived experience and making it so personalised. Just having that knowledge that, hey, we've been through what you're about to go through. We've got your back. And I love what you just said about personalising those packages and knowing these are the names of the people that have your back. That is so powerful.

Maddy: So powerful. That's literally having it on the back. That is someone has your back.

Larissa: Yeah. God, that gives my goosebumps.

Maddy: Yeah, that's so beautiful.

Matt: I'm going to break protocol for one second. I'm going to stand up.

Larissa: Go for it.

Matt: Turn around. I'm going to figure this out real quick.

Larissa: Yeah, of course.

Matt: So, obviously, I always wear by company's business logo itself when I'm doing things. But this is actually where we flourished into last year, was being able to create... Hopefully, you can see it.

Larissa: Oh, wow.

Maddy: Oh yeah, wow. That is beautiful.

Matt: So, being able to really identify out what the actual person is itself for our organisation. So, we have our survivors, we have our caregivers, we have our supporters, and then essentially the active warriors itself. So, it's been really amazing to see what we were able to create in a really short period of time. Being able to create a clothing line for individuals with cancer, I never expected in my life. That wasn't a thing four years ago. That was just like, okay, it would be nice to have eventually kind of thing. But being able to actually create a clothing line that makes sense to our community, and then being able to work with a clothing company and manufacturer that was willing to embrace our vision.

So, this is the thing that blows a lot of people's minds sometimes. Our clothing company literally makes my organisation $0. And you're going to understand the what, but why? So, here's where I get to explain a little bit more. Essentially, through the clothing line and the partnership that we've created, the margin dollars that are made on the actual individual items of clothing itself, we make about a 35% margin. That 35% margin, so on a $1 clothing, that's your 35 cents that we make. That 35 cents we collect quarterly with our clothing manufacturer. They put it into an affiliate stipend fund. We then take that money out quarterly. That funds is then donated to another cancer nonprofit charity on behalf of ourselves and the clothing manufacturer. So, it's called the Game Over, Cancer line.

And essentially, we create our partnerships towards other cancer organisations through this. So, we have a very low operating budget. We don't always need these funds ourselves. It's very hit and miss sometimes. But this quarterly funding that we've been able to do now for almost 18 months, so we've been able to do in total, I think four donations over that time. And each of those donations have always had some meaningful story behind them. So, the owner of the clothing company, when I first approached him and we started trying to figure out a business plan or model and how is this going to work and everything, I found out his mom passed away in 2021 from brain cancer or glioblastoma. It was instantly, okay, we're like, that's where our first quarterly check goes.

You've never thought about it as a business before, being able to give back to a cancer nonprofit. I'm just the conduit to help you, essentially. Sure, it gets my business name out there, and I have clothing, and we have an awesome network of people wearing it, and rocking it and doing it. But at the end of the day, our organisation, and our clothing supplier, and sponsor actually ends up giving back to other cancer nonprofits. And I couldn't find myself more happy being able to obviously operate and run my own cancer nonprofit. But then being able to partner in such in amazing and giving back way. And we don't ask for anything in return for it. It's just like a note. Here, we know you need it just as much as we do, and we spread the love through the campaign.

Larissa: That's incredible.

Maddy: That's so wonderful to hear. I love how you're able to help different businesses realise that they can achieve this and that it isn't so hard, because I feel like there's always barriers in the way. You've spoken a little bit about how community has been really important to you. And shaping a community of survivors and people who understand what it's like is so important. I know personally that navigating chronic illnesses or a new diagnosis can be a really isolating period of time for a lot of people. What has this period been like for you? And how have you managed to realise that you needed community to help you process this?

Matt: So, I had my cancer surgery of all the days on February the 14th of 2020. The first available surgery date, and I took it. Valentine's Day out the window. I didn't care. It was like, okay, mine. That's the day we're having the surgery. One month later on March 14th, 2020 is when COVID essentially impacted Toronto and all of our university health network programmes. The very first day I met my oncologist was the day COVID shut down the hospital.

Maddy: Oh, my goodness.

Matt: I was his first patient at 1:30 in the afternoon, post him having his business meeting essentially with the hospital, locking and shutting everything down. I was in tears. Obviously, receiving a cancer diagnosis, there's a lot to go with it. And he's on the other side of the table crying as well, and that's just making me cry even more. But I didn't even think to ask, what are you crying about? And then he tells me, "I don't know how I'm going to be able to treat you. We don't know how we're going to be able to treat patients. We don't know what's next. There's something that's happening that's bigger than what this hospital can currently handle."

Larissa: That's terrifying.

Matt: And literally, if I look right now, I'm terrified, like I'm looking a deer in the headlights. That was the look I gave the doctor. I'm like, "What do you mean?" It's Canada, we have healthcare, we have all these. I'm like, "What are you talking about?" And then for him and I to sit there. And literally, there was no bubble, there was no anything at that time. It was just him and I hugged and cried. I'm crying because I have cancer. He's crying because he's like, "I don't know how I'm going to treat my patients." So, next piece right after that, I get in the car, I sit down. I'm like, shit, I'm going to need support. I don't know how this is going to happen. I'm not prepared for this right now.

Finally, when emotions hit me, everything came into play. And I start making my phone calls. And that shutdown was so immediate and so sudden in our province. When our lockdown came into place, essentially that afternoon, it shuttered all cancer support centres. Cancer support in the province of Ontario didn't exist for 777 days in person. That was the length of our lockdown. So, if you had cancer during that time and you needed support, hopefully you found something online, like I did. I found an online community. My local cancer support centre was able to move to an online perspective, was able to create these things. And I'm like, okay, I guess this is my new life. Just like everyone else living through COVID, you had to turn online. You had to become... to essentially thrive and just be a human.

Obviously, I'm very open, I'm very social, I'm very extroverted in nature. To hear that our province is on lockdown, I don't know how I'm getting essentially support from my doctor. I don't know what my healthcare is going to be next. I was a mess. Because of the chronic pain world of coming out of already being in a community-driven perspective with CRPS, I knew that there was a cancer side of my life that had to exist. But I was young. I was 38. I had testicular cancer, but I also had lymphoma. I was stuck in that weird in-between again. I didn't know where I fit in. I knew I was a gamer. I knew I was a streamer. I knew I was all these things, but I never put it all together in one hat to be like, this is what I'm going to be moving forward.

And literally, cancer somehow magically tied all those hats together for me and literally gave me my best version of myself coming out of it. And the community were the ones that kept me going. I've had my ups, I've had my downs. I'm very open on social media. I talk about mental health. I talk about all the different avenues of everything that comes within the two lives I've lived within the chronic pain world and the cancer world. And at the end of the day, my closest friends I now have today are friendships I've forged over the last essentially four years. That really stemmed out of COVID and driving the world digitally. And it allowed me to realise that, sure, I could have a smaller business, but I could impact North America. I could impact globally.

I could do all these things still from the comfort of my own home. And I never realised how much that was going to actually have a key play in my own life living with my disabilities, because when I'm tired, I'm tired. I'm sorry. It is what it is. There's a level as a spoonie that we hit that we know we just need quiet. We need downtime. We need our comfort of our own space. Essentially, the social battery is done. And I hit that spot every once in a while, but my community are the ones that always recharge my batteries. They're the ones who wake me up in the morning. They're the ones who send me a random message when I didn't even realise I needed it the most. They're the ones who give me the smiles on my face.

And at the beginning, when I thought of what an army was, and what a community could be, and what these people would be, I didn't realise I'd be able to call every single one of them at the end of the day, either their governmental full name, being literally one of my best friends or whatever their online streamer moniker handle happened to be. Also, having the best of both worlds, of being able to support them in their small careers, and life, and streaming and content creation. But then at the same time, having idea of content and what it could be and all these different things. People send to me on a regular basis, so when I go quiet, my community knows something's up, just like most.

You revert a little bit online and all of a sudden the world's like, "Hey, where'd they go? Wait a second." And you're like, "Hey, I'm still here. I just need a second. I'm human too. I can't always keep it going and stuff." But at the end of the day, I would say the biggest piece of the community, what it's meant to me is every morning to wake up and literally have an inbox of friends messaging you before you're even awake. Or having someone when you're fighting insomnia 2:00 in the morning, 4:00 in the morning, and you literally know your other insomnia warriors out there that you can message. And you can do it without having, I guess a fear of like, should I be messaging them? You're like, yeah, they're awake. They're going to write me back.

And you just know instinctively, because you've been through it all together. You've talked so openly about things and it's really allowed me to just operate as a better person, I would say. The community aspect has allowed me to understand what other people's wants and needs are. And it's really let me listen to what their wishes are. And then I just try ,and adapt and tailor to myself to help everyone at the end of the day.

Larissa: Hey, Maddy, I want to talk about something that's been a total game changer for the neurodivergent chronically ill and disabled community.

Maddy: Oh, you mean Spoony?

Larissa: I do. But today, I want to focus on one of their standout features, the journal for symptom tracking. Whether you're managing flareups, trying to spot patterns, or just need a space to unload your thoughts, Spoony's journal is a tool you didn't know you needed.

Maddy: And it's so easy to use. You can track how you're feeling day-to-day, jot down notes about your symptoms, and even tag triggers or treatments to see what's working and what's not. Over time, it helps you make sense of what might otherwise feel totally random.

Larissa: Plus, you don't have to worry about ever feeling judged. It's private, secure, and designed with empathy in mind. It's like having a health diary that gets you.

Maddy: Honestly, it's perfect if you're looking to take charge of your health while staying in tune with yourself.

Larissa: So, if you're ready to track your symptoms, find patterns, and gain some real insight into your health, download Spoony now and check out their journal feature. It's a little extra support in your pocket right when you need it most.

Maddy: Spoony, it's more than just an app. It's your safe stigma-free space for friends, support, and now powerful tools like symptom tracking.

Larissa: You can download it in the App Store or Google Play and try it for free today.

I feel like you just described the Spoony community so well. It's so true. The Spoony community is just not just on Spoony, but the wider Spoony community. It's such a beautiful community. Especially that whole thing about insomnia and being up with pain or just being up because you're up. We see that so much in our community, too. People just being like, "Hey, is anyone up?" And you don't feel awkward messaging people, as you said.

Matt: Never.

Larissa: You know they're up and you know they get it. And it's just a really beautiful community. I want to ask you a question about gaming. So, Maddy and I are not gamers.

Maddy: No yet, maybe.

Larissa: We have so many gamers on Spoony, though. When I say so many, there's a lot. And I feel like they'll really love to hear from you. For the non-gamers out here, like Maddy and I, when you talk about adaptive gaming, what does that mean?

Matt: So, adaptive gaming to myself is gaming outside of using your traditional mouse and keyboard on a computer, or using a controller setting on a console system. There are controllers that have been manufactured by third party and by first party developers. So, Microsoft and Sony both have their adaptive gaming controllers that link directly to the actual gaming console itself. But those adaptive controllers then allow you to network in your adaptive pieces that you may have within a chronic setting and need. So, someone who may be operating life based on a huff and puff, essentially the strawed system itself, that can be tethered through a third party adapter to a Microsoft gaming board, which then connects then to your system or to your console, sorry, your PC or your console, and you're essentially now operating your front, back, left, right based on simple breath controls and movements.

There are other adaptive gaming equipment out there that can work within like an iPad scenario, that's actually eye monitor tracking. So, you're able to actually do inputs on the screen itself based on your visual representation and where you're moving your pupils itself within the eye tracking. And then it comes down to things through third party companies. There's a few out there that actually do independent 3D moulding, and modelling, and printing of actual conformed controllers. So, if you're a player that can't actually do your thumbstick controls itself, but you're able to operate from a powered wheelchair perspective, if you have a joystick where you can still actually have wrist dexterity and movement, that controller, that's essentially your left, and right, and forward and back.

Essentially, if you can control that on a powered wheelchair, it's the same adaptive controls to a video game setting itself. So, it's essentially still you're creating movement of the character in the game or responding to the game's prompts, or whatever, with actual technology that's built for our community. So, we have things like the adaptive gaming controller. It's actually about the size of a standard keyboard. It's flat, but it has two very, very large buttons on the front of it. So, for individuals who are smaller dexterity or may not be able to actually operate smaller buttons on a controller anymore, Microsoft specifically created a controller where it's very... looks like a 1980s Nintendo controller, just exploded really big. So, you got really big buttons on the front of it. It can't be missed.

Generally, gaming itself, when I'm operating in an adaptive setting, I'm usually using Sony's controllers or Microsoft's controllers. And then I'm using a slew of third party adaptive equipment to be able to tailor the experience, losing an earbud, sorry, to the actual gamer itself. So, I'll sit with the gamer or I'll sit with the parents, and I'll identify what their movement need is or what their capacity is for being able to function in like a regular gaming setting. And then I use a website that's partnered to us called Taming Gaming. And they have a list of over 2,000 video games that have actually been tested by parents in the community who are adaptive gamers or living with a disability itself.

So, you can actually narrow it down to if you're a one arm amputee, if you operate and play with your feet, if you're a huff and puff system user. Whatever your actual physical input is, you put into the website itself. You put in your age, and then essentially what genre of game you're looking to play in. And it'll actually spit back out what the top recommended games are for adaptive gamers.

Larissa: Wow.

Maddy: That is fantastic.

Larissa: Yeah.

Matt: I use tools that are already in the network of people. And I'm just kind of like the conduit to the families to be like, "Okay, I know you want to get back into gaming. This is where you need to go. This is what you need to do. This is how you do it. This is where you buy it from." So, I essentially became a spokesperson to adaptive gaming out of my own physical need itself. So, I've got a messed up hand, thumb. This little guy right here, you can see how screwed up that thumb is. 40 years of gaming, essentially crushing my thumb, I can't play long-term anymore, controller gaming. I had to move to a joystick. I had to move to something that was more comfortable and ergonomic to my everyday life, because if I wanted to still continue streaming and gaming, doing all those things, I couldn't just do it for 45 minutes. I'd have to do it for multiple hours, multiple sit down hours.

So, I had to create, actually, my original intention was just something so I could game and make income. Not to the fact that I was now going to be a spokesperson for other companies talking about their equipment, how to actually partner, and get 3D printed equipment into their hands, who they need to talk to, what other gaming organisations exist, how to be able to apply for grants and funding, to be able to sometimes to offset. I've even gone as far as having conversations with occupational therapists at the Abilities Expo, because that's their first thing when they see gaming. They want to know how do I bring it to my patients. Because while you may not be a standard console gamer, if you can go back at least 15 years and go back to Wii Bowling from Nintendo.

Larissa: I remember that. Yeah.

Maddy: That was a good game.

Matt: That is literally the number one game that I generally tell people, physical therapists and occupational therapists, to start with. It's low impact, it's fun, it gets you moving. I've had 88-year-old women learn how to pick up Wii Bowling simply because of their occupational therapist. So, it's fun that I get to explain gaming in a different light than your everyday basis and how it can be used as tools in a career, how it can be used as tools within a patient setting. And then at the end of the day, video gaming, to me, it drops down barriers that never existed before. When you have someone who may be a quadriplegic, and I'll go back to the huff and puff system again, to put them in a video game system now where they can comfortably and confidently control themselves based on technology that they're already using. There's not a big learning curve to it, because they have it already in their life. But it gives them a scenario of freedom in a video game world.

The freedom of feeling what it's like to run again, to jump again, to swim again, to be part of an environment, and to interact on an everyday basis. While there's an escape aspect to it and enjoyment of a video game life, there's so much more that I've learned from other adaptive gamers about what video gaming truly means to them and what it gives them back in their life. And I just try my best now to be able to give that same sort of aspect towards everything. So, to think back, my last public event last July was in LA itself. And it was for an exclusive event to younger individuals that are wheelchair-bound, exclusively full-time basis. It's put on by an absolutely amazing community of people with the Rollettes Experience. And I was able to provide gaming to the families and to the girls last year.

And that was my biggest, I would say, confident growth aspect of it. Because, A, it's hard enough to be a video gamer. B, it's extremely difficult when you're a disabled video gamer. And now layer on top of it, the sexism within, unfortunately, the video game industry. And to be a woman gamer on top of that, it's like, holy, how many Xes can you throw in front of a barrier to a gamer wanting to enter the world? And I, last year, sat and spent five days with families inside and out in LA, absolutely beautiful setting, wonderful hotel. But the families made that event through and through, because they wanted to change it for their eight-year-old daughter, their 10-year-old daughter. They wanted to play Mario Kart with them again. They realised that there's already in Mario Kart 8, there's adaptive gameplay already in the game. It's in the pause setting. No one tells you.

Maddy: Wow, that is so valuable.

Matt: Right? So, just small little call-outs in everyday life. I'm like, "Hey, do you guys have a Switch at home?" They're like, "Yeah." I'm like, "Do you have Mario Kart?" They're like, "Yeah." I'm like, "Hey, did you know?" And they're like, "What?" And then within 30 seconds, I have a motion-controlled controller in a girl's hand who's able to left-hand control, and is able to do this with the motion controls on the Switch, and is now all of a sudden steering the controller left and right. Motion controls exist in our everyday world for absolutely amazing feats. And it seems really like video gaming on a forefront, that no one actually expected this untapped market of people just wanting to game again. And finally, the market is actually standing up. And PlayStation was the last one on the market last year to actually come out with their adaptive gaming controller.

Larissa: That is so interesting. And giving so many people access to a world that there's so many barriers in the real world and in the gaming world, but to be able to give someone that access and also I'd imagine in certain gaming situations, be able to connect with community, and integrate and be part of that world is so special. I want to ask you one last question, Matt. If you had one piece of advice that you wish someone would've told you when you were first diagnosed with cancer, what would it be?

Matt: I'm going to say this without crying. I hope, at least. It's know when to ask for help, and knowing what your limitations are. And knowing when and how tough things are going to be, that you have people around you. And just be truthful. The sugarcoating, I guess, sometimes that comes in regards to certain things. And like I said in the past about almost laughing it off to a certain degree, I don't know why I didn't take it seriously. And that's the question that will personally haunt me the rest of my life. I don't know why I didn't take it seriously. And every single individual, since that day, that has been my entire focus. Being able to work with other organisations, and being able to make small written pieces, and being able to create speeches, and talks and different things I've done in my life, one of the hardest pieces I ever did was talking about my hidden secret. And it was about living with something called survivor's guilt.

And again, it's a term you're not going to understand unless you've been through it and what that really means. And the survivor's guilt aspect for me in the cancer world was almost like me releasing my anger on past relationships that I had with people that I had lost along the way. I had close family that had a really bad bout with rectal cancer and lung cancer, and told us for the better part of a year that his treatments were going good, he was going good, life was going good, everything was great, and then he's dead. I don't know if it was true. I had a friend do the same thing. I had a mentor who I looked up to for my first two years of my cancer battle, who ended up actually passing away from a rare case of male breast cancer itself.

So, being able to call these people, and still know their phone numbers, and have a recorded voicemail from them on my own, all of these different things, I had no idea how impactful they would've been. And what I say to literally every person that I've met since that's diagnosed with cancer is never give up and you got this. And don't be afraid to call. The call could be me. It could be a mental help hotline. It could be the hospital, it could be family, it could be friends, it could be a coworker. I'm like, but in a moment of crisis, you need to make that call, because it will eat you up alive otherwise.

And I try very, very hard in my life to remain positive, to be upbeat, to bring a great message of survival along the way. And that's all I want anyone else to be able to have is that same opportunity and just live comfortably. A diagnosis sucks. Things can suck when the terminal comes into play. Having lived with CRPS and being part of that life with the suicide disease, always kind of being thrown around and knowing that, and hearing it, and losing people along the way to CRPS has been hard. But cancer was harder, because cancer, there's a stat that sucks. It's one in two people are going to be diagnosed with cancer in their life. And if you haven't been diagnosed with cancer, you're going to know that other 50% and you're going to know someone in the room who has.

My voice now is about just trying to get other people's stories to the forefront and to give them something comfortable at the end of the day. If it's a drive to the hospital that I need to give them, if it's me dropping off a donut or a coffee to the parents, if it's me gaming with a kid for an hour, whatever it happens to be. I know there's so many hidden things in the closet of the moment of breakdown, of meltdown, of needing quiet, of needing to rebuild yourself, of doing all of those things. And it literally came from my cancer diagnosis. I didn't realise the day I was diagnosed that all the rest of that crap was going to come with it. I had no clue. I was young, I was naive, I was dumb. It's unfortunate the way I personally took it. And that's all I want anyone else at the end of the day is to really understand that you can change it in a split second. It just took me a lot longer to get there.

Maddy: Thank you so much for sharing that. That was such valuable, beautiful advice.

Larissa: That was amazing. I'm sure that will help so many people. And it's a lot to hear, just the way you articulate it so well. And I don't even have the right words to say. I'm sorry. But that was just really beautiful.

Maddy: Really powerful.

Larissa: I can't articulate it as well as you just did. And we really thank you for sharing your experience today, Matt, and all of the incredible work you're doing. If people want to connect with you, where can they find you?

Matt: The easiest way is with our Canadian website, which is wsegl.ca, which stands for the Warriors Survivors eSports Gaming Lounge. You can also find me on Instagram, which is through the lens of a warrior, which is in ode to my life, living behind the scenes as a content creator with a chronic illness. And then on Instagram as well, it's WSEJL Canada.

Larissa: Awesome. We'll pop that in the show notes as well so people can connect with you.

Matt: Perfect.

Larissa: And thank you so much for being part of the Spoony community and for chatting with Maddy and I today.

Matt: Thanks, ladies.

Larissa: It's been fantastic. Thank you.

Maddy: Thank you so much. We're so glad that you're part of Spoony and sharing your beautiful energy with everyone. Thank you so much, Matt.

Matt: I will tell you, ladies, both for me to end it, the Spoony community has been absolutely fantastic. Behind the scenes, the personal messages I get from people, literally having the app, it is the icebreaker. Any other social media app, you have to try and figure out your voice, who you are, what you are, blah, blah. It takes forever. And God, it's tiring sometimes. All of a sudden the Spoony app comes out, I'm like, "Hey, wait, what? I don't have to explain any of that anymore? I can just be me? Wait, what?" Holy crap, this is kind of cool. So, the limited posts that I have been able to make, but the impact I'm getting back from people and the private messages on the daily basis, these are people literally that I met two months ago online, out of nowhere, I don't have a profile, out of everything. And I'm learning all about other people's gaming styles, what they're into, what they live streamed. They're giving me gaming styles that I should be playing. And apparently, Animal Crossing is apparently where I should be focusing my time on.

Maddy: I have heard that too.

Larissa: [inaudible 00:55:12] Animal Crossing.

Matt:So, the Spoony app is full of Animal Crossing members.

Maddy: It's pretty good advertising.

Matt: Just to let you know.

Larissa: Thank you so much for those words. It's so beautiful. It's so nice to hear, too, that the work we're doing at Spoony. It's feels very full circle for Maddy and I to see someone who's discovered Spoony, and been part of our community and enjoyed it. And we're so happy you're part of the community. It means a world to us. So, yeah, thank you so much.

Maddy: Yeah, thank you so much.

Matt: Honestly, I appreciate it through and through.

Maddy: This podcast is brought to you by Spoony, a safe space for neurodivergent chronically ill and disabled people, to make friends and find support. Spoony is the world's very first social app designed with accessibility at its core. If you liked this episode, it would mean the absolute world to us, if you could hit subscribe or share it with a friend. If you'd like to join our Spoony community, you can download the app on the App Store or via Google Play. And if you'd like to keep up to date with us on social media, you can follow us via the links in the show notes.