Episode 148: Twist Out Cancer's August Spree
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Transcript
Today I have August Spree with me as a guest to talk about an organization called Twist Out Cancer. In 2003, August received a cancer diagnosis that changed the direction of her life. Following her battle with cancer, her grandmother, who raised her, was diagnosed with stomach cancer. Ten months later, she was gone, and August began taking steps to change her personal and professional life. Ten years later, August stumbled onto an art exhibition by Twist Out Cancer that showcased the art created on behalf of those who had been affected by cancer. So moved by the stories and the process itself, she began volunteering immediately and eventually became the Director of Programs, enabling her to produce the Brushes with Cancer program for countless others to have this meaningful experience. August also went through the program and was paired with an artist who became her partner in life and in love. They are still together now, 8 years later.
I have August with me today because Twist Out Cancer has some resources for people affected by cancer that I am really excited about and that you can participate in this year.
Here’s our conversation.
Charlotte Bayala: August. Thanks for joining me today.
August Spree: Hi. Thanks for having me.
Charlotte Bayala: We are here to talk about Twist Out Cancer, and the programs that they have. So why don't you give me a little bit of a background on what the organization's mission is and, and what they do in the community
August Spree: Sure, so Twist Out Cancer was founded by Jenna Shersher, who went through Grey Zone Lymphoma as a young adult. She had a background in dance and, during her treatment, she found it to be very isolating socially and emotionally. At one point, and I know this really dates us, but at one point, she threw out a YouTube video and this was like pre-Facebook, pre-Instagram, all of them, and YouTube was still pretty new.
[00:01:00] And she just threw a video out there of herself doing the Twist to Chubby Checker’s, song because it was easy enough movement that she felt she could do.
Charlotte Bayala: Mm-hmm.
August Spree: And she just sort of threw it out there and said, who wants to join me on the dance floor? Thinking that, you know, maybe her friends or people that she knew might do that. And pretty quickly she had an overwhelming response of people taking videos of themselves and doing the twist
Charlotte Bayala: Nice.
August Spree: …sort of joining her on the dance floor in solidarity, and letting her know that she wasn't alone. And she really realized, oh wait, there's something to this, you know?
Charlotte Bayala: Mm-hmm.
August Spree: This online thing here, and then fast forward and there was a friend of hers, whose name was Anna, who was going through treatment and put out a call, after this thing with Jenna, put out a call for people to, encouraging people to create a work of art that did not include the color gray because she felt that her world had turned gray.
[00:02:00]
And people. They took to creating these incredible works of art that were very vibrant and colorful. And that is sort of how Twist out cancer, which is what gets named after that. Then the program brushes with cancer was started.
Charlotte Bayala: Nice. So with the Twist Out Cancer and Brushes With Cancer, are programs that you do with cancer survivors, previvors, their caregivers, the whole community. What is available to them, through that organization?
August Spree: Oh, that's a good question. so I think it's important for us to say that we focus on social and emotional support and wellbeing because there are so many organizations that do focus on other aspects of the cancer experience.
[00:03:00].
So that being said, we use creative arts because that's how we started to provide a community. Some of that social support that people are missing oftentimes when they've been involved, you know, in one way or another, with cancer. And then that emotional support through creative arts, whether it's what we call twist shops. which are workshops that are art therapy based, and that's more focused on each individual creating on their own behalf. I know there are other organizations that do that too.
Then the Brushes with Cancer event, which is very unique in the fact that it calls to someone outside of the individual to create a work of art that reflects their experience with cancer. So, that would be the brushes with cancer program.
[00:04:00]
That matches people with artists, those that we call inspirations, as you mentioned, the caregivers, survivors, and previvors, and they tell their story to someone who's sort of outside of their normal circle, we like to call it, creating unexpected intersections.
Charlotte Bayala: Nice.
August Spree: Because you meet someone that you may not have met in your life. Both parties are willing to be open and vulnerable, and the artist really is a listening ear and an open heart to hear that person's experience. Then they reflect it back to them through their art, which can be a really beautiful, a beautiful thing to see because sometimes when we're in it, we don't see the beauty that can come out of it.
Charlotte Bayala: So as an inspiration in the brushes with cancer, program, you, the person literally spends time just talking about themselves and their story with an artist.
[00:05:00]
August Spree: Pretty much.
Charlotte Bayala: So it's all about them. Without any judgment. Speaking to someone that doesn't know their backstory, doesn't know them as a person. So it, I mean, as a caregiver, that sounds pretty awesome, to be able to. Talk to a person about, to tell their story. Because sometimes when you hear your story being said by you it causes some realizations that you might not have come across just living it.
August Spree: I think it's really beautiful.
I mean, we encourage the artists there, there's an exchange of information I feel you know, oftentimes there are long-term friendships that are born out of these connections so it's not, you know, like a therapist couch,
[00:06:00]
Charlotte Bayala: Yeah. Necessarily.
August Spree: So I wanna make sure people understand that it is hopefully expanding the caregiver or, you know, the inspirations’ network. Hopefully it's expanding their support system in that it would extended beyond the program, you know? To be an additional person that they can connect with.
Charlotte Bayala: The benefit of sharing your story with someone who's outside of your immediate circle is that, you know, you don't have to filter as much, right.
August Spree: Yeah. You can talk about the things that maybe your family or loved ones, have a difficult time hearing or you just don't feel comfortable saying.
Charlotte Bayala: For things that you didn’t know you needed to say until they were said. So I can imagine. You're working with an artist, they are, are artists. They're not, art therapists.
[00:07:00]
That's a, a different type of program, right? This is you telling your story to an artist, whether your experience is being the person who's had cancer or the person who's cared for someone who's had that. Right, and, you're just telling your story. Then the artist takes that story and makes art out of it, correct?
August Spree: Yeah. We do prepare the artists. So that should be known too. You know, we prepare them and, their application process does include, very direct questions about being prepared to hear, you know, people's stories. We just make sure that it's not someone who's being really flippant about holding space for their inspiration. So, while it isn't a therapy relationship, it can be very cathartic.
[00:08:00]
Charlotte Bayala: Exactly. Yeah, and I think that just the prospect of someone bringing beauty to what you're living and have lived… It’s not a form of a resource of any kind that I’ve come across yet. You know, yes, I've seen art therapy, but this is specifically for whoever the inspiration is. They're not getting a collective group of caregivers or collective group of cancer survivors or previvors and saying, all right, as a group, tell me what you think. Right? It's just you and this other person.
So what they do is they apply first, correct?
August Spree: Yes. Both the artists and the, the inspiration. We use that information to help match them. We've had our clinical director and, and another, licensed art therapist provide input for the applications.
[00:09:00]
So there are some questions that are a little bit more communication related, like what your communication style might be. Then there are other questions specific to the experience. So as an inspiration applying, you will be asked what your experience was, how you identify if you're a caregiver or survivor or which role that you may have played. Some are more than one, you know? Then there are some inspirations who are artistic and maybe feel like, you know what, I'd rather hold on to my story and participate as an artist, and be there and listen to someone else's story. So obviously we allow, you know, all versions of that, and we utilize that information to help match people in the best way possible.
Charlotte Bayala: And, then once they apply, so let's go through the process, because I know that me personally as a caregiver if it feels complicated or you know… if there's any thing that can get in my way on a day that I'd really like the idea of someone listening to my story just having someone listen to my story and me be able to tell it.
[00:10:00]
It's, just me, of course, I'm a little selfish because that's what I do on my podcast, right. But to tell someone else and then they create art out of it sounds beautiful and awesome. But then, I know there's some people out there that are listening and they're like, so what's the catch?
I'm pretty sure from all the conversations that I've had with you and just looking through everything there isn't one. Which is, amazing. But I still know there are people that are like, there's a catch, there's something. The application for the inspirations is fairly straightforward.
I mean, you fill out the application and then after that what happens? You wait and hear if you've been matched with someone, right?
[00:11:00]
August Spree: Yes, that’s a good question. So, we obviously collect, all the data from the applications and lay it out. We do send out acceptance letters. Most of the communication is via email. We do send out a note to those who have been accepted to say, okay, you've been accepted, and then we have a participation agreement. Which is basically just agreeing to what the program is, you know? That it lasts for this amount of time, that here are the deadlines, and this is when you know the program ends and you are committing to connect with your match x amount of times throughout the course of the program.
[00:12:00]
Sort of a reminder. Then there's of course more reminders for the artists because they have to get their art to us and things like that. So we send all of that out prior to you actually meeting your match. We get that sort of stuff out of the way and say, okay, you've been accepted.
Timing on when you might hear is dependent on how long the applications are open. So if you've applied now and applications are open until the end of the month, then you may not hear until then. I do try to send down a note just to say, we see you, we know you're here.
Look out for a note from us after the applications have closed and we get everyone. Then occasionally there are people who aren't able to match. Honestly, we try to match everyone, especially on the inspiration side. We have a really robust database of artists at this point.
[00:13:00]
That's pretty much it, honestly, because most of the time we can, even if we don't have enough artists at first the program's been going for 10 years now, so most of the time we can just send a note out to past artists and say, Hey, is anyone in?
Charlotte Bayala: Oh, that's awesome. Good. So they apply, and the application's only open for the month of February this year. Okay, so they apply in February, and then by around March they'll know if they've been accepted and, if they're matched with an artist.
And then the program really continues throughout the year, doesn't it? Where the big chunk of the middle of the year, they're working with the artist. Is that how it works?
[00:14:00]
August Spree: Yes. After the introduction is made, they figure out on their own how they'd like to meet and connect. So it could be video chat, it could be on the phone, or it could be in person. We do encourage actual conversations. You can definitely text, email and things like that between them. We have an orientation call for everyone, one of my favorites because you get to see everyone's face on Zoom and people are kind of saying hello to each other and you can find the face of the person that you're matched with.
So if you haven't met in person, that's usually like a week or two after the matches are made. So a lot of them haven't met yet and that's a really fun time. A lot of energy. In that call we, go over the details and how it's going to work. Then from then on, it's up to them.
[00:15:00]
We encourage to meet a minimum of six times or try to connect, once a month. But many times they connect more often than that. Maybe they connect once a month and they text in between and just catch up. It is entirely up to the artist what they create. We have artists in all different mediums.
We've had ball downs in fashion. Music and obviously a lot of like canvas art and sculpture and mm-hmm. everything. So we leave it up to the artist Sometimes the artist loves to, you know, get input from the inspiration and sometimes yeah, they wanna keep it a surprise and sort of do a reveal. So it's, each relationship kind of works on its own and they figure it out.
Charlotte Bayala: Okay. And then at the end, the artist has some time to work on their piece. Then at the end it seems like everyone gets together. There's this huge at the end of the year party, all the artists and the inspirations are invited. What I understand is that then there's an auction for the art.
[00:16:00]
August Spree: Yes. We create a beautiful online gallery that you can kind of walk through to see all of the art. So those who aren't able to attend or see the art in person can see it that way. For the inspirations and the artists and their plus ones, we do give them everything free of charge.
I mean, the artists obviously donate their time and talent and materials. We try and offer support for them in whatever way that we can. But no one is being, charged anything and you don't buy a ticket for the event. You know, we sell tickets separately, but all the participants are given two tickets each.
[00:17:00]
We have a reception and opening reception that is only open to participants. Prior to the gala, so they get a preview of the art both online because they get access to that gallery for 10 days before we open it to the public, and then they also get access in person prior to the event.
Then of course the art is auctioned off. I love watching and talking to whoever gets the art because my story then continues on and they get to tell other people that story. I just think it's a really beautiful way to cause this ripple effect out into, the wider community.
[00:18:00]
Sometimes people who may not be comfortable telling their story themselves bid on a piece that really resonates with them and you know, it helps them get more in touch with their own story in a beautiful way. So it, it's just, it's so amazing all the stories that we have heard through the years of how it affects people.
It's, I just love it.
Charlotte Bayala: So you've done this yourself. What would you tell someone who, no matter what side of cancer they're coming from, they're listening to this and they're like, it sounds good. I mean, for me, I'm like, I get to talk to someone for a year and work with them on a creative project, all the pressure isn't even on me, and then get to go to maybe the only party that I would go to in a year depending on how the year is.
[00:19:00]
August Spree: It's very fun. Yeah, it’s a big celebration, which is hard. Because cancer is a difficult topic, but we use this to celebrate all the beauty.
Charlotte Bayala: So what would you tell someone who's, on kind of the edge. You know, we all know the excuses we make for not doing things that seem like a no-brainer, right? Why, wouldn't a million people apply for the brushes with cancer program? Right? Because it's, so, it's so awesome. So what would you tell that person? Because we know what those things are and usually it comes down to… it's just, it's not my time.
What would you tell someone, since you've personally, you're not only involved with the organization and working with, putting together these programs, you've also been an inspiration yourself. So you know everything there is from both sides of it. What would you tell someone who's just kind of on the edge or maybe kind of just hesitant to even think that they could do something like this?
[00:20:00]
August Spree: Yeah. I will say, so I am a cancer survivor and also I lost my grandmother, who raised me, to cancer. She was diagnosed and passed away 10 months later. It went so quickly and as a caregiver on that side, I know that when I participated in the Brushes With Cancer program it gave me the opportunity to, as I mentioned earlier, to say things that I wasn't able to say to my loved ones, you know? To talk about the fear and to, and the anger and,, and to talk about things that I, like you said too, I didn't realize I needed to say out loud. And again, then to have someone turn that around and make something beautiful out of it was just, I mean, I'm getting choked up again…
[00:21:00]
…because that's so meaningful. Because I think we get stuck sometimes. Yes. I would say to someone, especially with your audience being caregivers, when you're in that mode, or even after you, you may be out of that mode. You may be in remission or wherever you might be that time period is marked by survival.
[00:22:00]
Such an extreme lack of self. I don't mean that in a negative way, I just mean you're just giving, you're giving, giving, giving because you have to. Sometimes life requires that of us, and I think that participating in something like this might provide that little pocket of, for lack of a better term, of self-care.
It might provide a little pocket of that where you have to set aside an hour once a month. You know, to go and have coffee with this artist who's, the whole purpose is just to listen and to be there for you. Sometimes, I mean I know when I connected with mine, sometimes we went and got a bite to eat and laughed and talked about other things.
Sometimes we dug into the cancer experience and talked about that, you know? Both interactions were needed, for me. So I think in that regard, I would say that to someone who's hesitant and, if you don't I wanna also leave space for people who don't feel they're ready to share
[00:23:00]
their story because that is valid. But when you are, the program is here and all sorts of personalities participate. So you don't have to be a super outgoing person who loves to stand up in front of people and, and talk.
Charlotte Bayala: That's not a requirement. Right. An inspiration never has to…
August Spree: Not at all. I mean, we give opportunities. We do ask if people are open to being in an article for the blog. Or if they're open to doing one of our podcasts, and they are definitely, they have opportunity to share their story more widely. Yeah. But they do not have to. We have had people participate who say, look I'm loving this program but I don't want my name or anything published.
And that's totally fine because this experience is really, truly at the base, it's about that one-on-one connection.
[00:24:00]
Charlotte Bayala: That's awesome, and you do have programs that are available for people who may think that this isn't the year for Brushes With Cancer, you have Twist Shops.
August Spree: Yes We do those at least once a month. and we have free, we have some that are paid, mainly just because of materials or other things that we can’t get around. But we do always have something that's free on the calendar as well. Those are more group sessions, right, but no one is required to share, you know what I mean?
So yeah, they are welcome to join in and, and be there. A lot of them are virtual as well, so it's really easy to join in and chat with people and meet people and maybe feel connected or dip your toe, you know?
[00:25:00]
Charlotte Bayala: Yeah. Well, and those are, those are facilitated by art therapists, is that right?
August Spree: Yes.
Charlotte Bayala: So they're, they're able to, I'm assuming, kind of navigate with everyone's stories and they're the ones who can facilitate something that feels really good. I know sometimes caregivers fall into online activities with other caregivers that aren't facilitated by therapists that kind of go wrong. So if, if that's a concern of theirs, you know, the Twist Shops are run by art therapists. So there is kind of this group where everyone's doing something fun, but they're also processing and there's just someone to kind of help them move down the process, and answer questions and be there to hold space and know how to do that in a appropriate manner.
[00:26:00]
I love, look, I live in a place where I'm not really close to craft shops anymore. So, you know, I, I saw some of the ones that you guys send the art supplies to the person, those are the paid ones. When I looked at one, I was like, oh, thank goodness, becauseI don't have the time to go find supplies.
August Spree: That's true. But you know what I've participated with, like literally digging out of my son's room some colored pencils and a piece of paper. You know. Obviously our art therapist, like our Jackie Carmody runs the Twist Shop programs, and schedules all of them. She is incredible and always has like, all of these art supplies and she's just like, oh, I was just doodling over here. You know, it's amazing and beautiful but you definitely could, sometimes I've actually done it before where I've just had my journal and instead of creating art, because that’s my sweet spot… writing and words. So I just wanna make sure people know that like it is open to whatever you have on hand.
[00:27:00]
Charlotte Bayala: Right. And you don't have to be an artist to do it. It's all about just do you, I, I find that when I'm doing something that requires me to be uncomfortable, and causes stress or anxiety, if I can write or doodle or just draw circles on a piece of paper, that connection to doing something with my hands brings me out of whatever I'm stuck in when I'm in main caregiver mode.
[00:28:00]
So, you know, scheduling something for yourself, it's not a long period of time that. A Twist Shop class doesn't run for forever. Right? It's like this container that you have where you're with other people, but not necessarily committing to, socialize. In any way that you don't, you can still wear your pajamas.
August Spree: Yeah. Yeah. Like get a cup of tea or a glass of wine. Exactly. Or whatever it is for you. And, and then it's definitely, they open it up for people who wanna share if they wanna talk about what they created or what they wrote, but no requirement. No one's gonna call on you.
Charlotte Bayala: Then you put it on, you schedule yourself and register for the class. You put it on your calendar. You tell everyone, I am unavailable this one time, this month to do this one thing. You know, just start with one thing that you can do for yourself . A lot of people don't know how art or expressing themselves in that manner can feel because they haven't given themselves time to play with that because
[00:29:00]
when you're caregiving or you're sick, that's the last thing you wanna do. Or maybe it's something you did when you were younger or pre-caregiver, pre-cancer, and you just know that you love it. It just takes that little thing to get you to jump into it. So I think that that is really awesome.
If you're listening to this or you find out about the Brushes With Cancer program after the February deadline, and you're like, oh, well I really wanna, like now I wanna do art and I don't know how I can be a part of it… this is an awesome way to kind of dip your toes, get to know the organization a little bit more, get to know the people who are running the Twist Shops, because even though you and I are in Chicago, this is not just for Chicago based people, correct.
[00:30:00]
August Spree: Yeah. It's grown so much. Programs in Austin, Detroit, Philadelphia, Tel Aviv, Montreal, Toronto. Gosh, I'm trying to think, we’ve had, I think last year we finally calculated we've had people participate from six countries.
Six other countries and then 28 different states. So it's really cool. We even had one artist who traveled from Detroit to California to meet her inspiration. I mean, you know, not everyone has the resources, time or ability to do that, but she combined it with wanting to go visit some other people that she knew out there and was able to go and meet her inspiration.
[00:31:00]
Now she has a friend on the opposite coast. Just, it's so crazy. We've had India and England and you know, people from all over the place find out and participate and it’s been amazing to watch.
Charlotte Bayala: That's awesome. And it's, it's so good that now we have the capability of doing things virtually so that we can make those connections with other people and, distance and money don't get in the way anymore.
August Spree: and that's how the organization started, you know what I mean? So it's really important to us to make sure things are accessible in that. So, aside from the actual gala, that's the only thing that's in person. Even when, you know, the 2020, 2021, we didn't do anything in person. We had everything virtually and we produced a virtual gala that people could join in. Even with that being said, like I said, we do an online art gallery and I mean, we do our best. I’ve worked out before where there were inspirations who were a few hours away and introduced them to someone else that they weren't matched with, but were in the program
[00:32:00]
who I knew was driving. Asked if that was okay and they were able to carpool to the Gala. So it's just a really cool community to be a part of. It's also up to you how much you wanna be… because I know that that's a thing too. It's like, oh, I wanted, I'm interested in this thing, but now like I'm getting inundated with too many things, but it's not like that.
It's like we have these things happening and it's up to you what you'd like to be involved with.
Charlotte Bayala: It feels like it's a space where It's so easy for you to say, I really don't have the capacity to do that right now, and it not be, any kind of an issue.
[00:33:00]
So it's easy to be as involved as you want to and not being involved very much. I mean, you could do the bare minimum that you need to, to work with your artist if you're in the Brushes With Cancer program. You don't have to speak the whole time you're in a Twist Shop and then, I think sometimes just not having to converse or talk, but just be with other people.
You know, and especially in terms of the Twist Shop, to be able to hear other people, and you're with others that are focused on the same project, but in the end, just being quiet and being. People who know what that means. They don't need to be entertained by you speaking and there's nothing wrong with that. You know, no one's gonna say, are you okay? You haven't said much. No, because they know. So tell me, and everybody else, if they're interested this year in the Brushes With Cancer program, what do they need to do?
[00:34:00]
August Spree: Our applications for inspirations and for artists are open for the month of February. So February 1st through February 28th. That would be the first step is to go there. We do outline in the application process a general overview of what's required. You know, when you're in the program, so you're not blindsided and like, oh, I have to connect how many times.
[00:35:00]
It's in the application. As you're going through the application, you'll see what the program entails for the most part. Then, be sure that you go all the way through until you get the confirmation that it was submitted. Sometimes I'll get an email that'll say, oh wait, I sent mine in, and we didn't get it.
Charlotte Bayala: What website should they go to?
August Spree: www.twistoutcancer.org Is the website and then. The email if you have any questions about the brushes with cancer program is [email protected]. I'm the person who answers those emails, so I'll be there.
Charlotte Bayala: Well, August, thank you so much, for sitting down with me. I can't wait to see how this program goes through. I'm excited about a possible party at the end of the year.
[00:36:00]
I'm already thinking, well, I need to shop for something. You know, it's always good to have something to look forward to no matter where you are in life, but especially, if your world is involved with cancer or caring for someone with cancer. So, I love that all of you put together something that's very special at the end. That is something to get excited about because sometimes people just, they need, even though it's at the end of the year, they just need to have that.
August Spree: Yeah, and you know what I love about that is, I mean, we always tell people dress, however you're comfortable. We love to dance, obviously, this whole thing started with a dance so we always do the twist and it kinda kicks off our dance time.
[00:37:00]
So we, we recommend some comfortable shoes or bringing some with you. I love seeing, participants, specifically inspirations, from all different walks, you know. Whether it's caregiver or survivor or whatever it might be, just get all dressed up. You know what I mean? And show up and go into the photo booth area and just like, take tons of photos because it is really special. It makes you feel special. And the participants, the inspirations and the artists are our guests of honor for that night.You know? It's, it's just really amazing. I can't tell you how high we all feel for weeks afterwards after being in the room with everyone and just experiencing that all together.
Charlotte Bayala: That's awesome. Well, I can't wait to go through this year just, learning more about it and I'm, I'm joining Twist Shops too. Like, I want to do art now. So thank you so much for coming on to explain everything, and to share a little bit about your story and Twist Out Cancer.
[00:38:00]
I will put all of that information online as well so anyone listening can go to the show notes of the website, of the podcast and check it out.
Thanks so much for being here with me.
August Spree: Yeah, thanks for having me.
If you have been touched by cancer I really hope you consider looking into the programs twist out cancer offers. I plan on participating in Twist Shops throughout the year and have applied to be an inspiration in the Brushes with Cancer program. If you have any questions for August her contact information will be in the show notes of this episode at loveyourcaregivinglife.com If you decide to participate in any of the programs this year let me know via email or message me on Instagram and I’ll look for you! You can simply respond to my newsletter if you subscribe or contact me through the website at www. loveyourcaregivinglife.com
Thanks for listening
