If you’ve been following us on social media, you might have seen that there’s a crowdfunding campaign to help Sassy Outwater. Sassy’s got ongoing medical craptitude, with seizures and medication changes and brain cancer “afterparty” as she calls it, all sorts of stuff that interferes with everything, including her ability to work. Setting up crowdfunding was a very difficult decision for her, and I wanted to give her the opportunity to explain in her own words what’s going on, and why it’s happening. Special warning: you might cry if you’re a sympathy crier. I am and I totally did. We also talk about our next dream form of support currency (hint: it involves some nobility) and the heroes that are getting her through all the bleak moments.
The Helping Sassy campaign is going on now at bit.ly/helpsassy, and any support is much appreciated. She also mentions WECHope.org, or or World Eye Cancer Hope, dedicated to helping children worldwide who are diagnosed with retinoblastoma.
As Sassy mentioned, if you read, listen, share, talk about or support her campaign, she is deeply thankful, and has unlimited love for you and for the romance community.
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Transcript
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Smart Podcast, Trashy Books, May 24, 2016
Sarah Wendell: Hey, there! I usually don’t release podcasts in the middle of the week, but I have a special edition to share with you today. If you follow me on social media, if you follow the site, you’ve noticed that we’ve been talking about Sassy Outwater and a crowdfunding page that we’ve set up to help her. Asking people for money is so difficult and uncomfortable and awkward, and I wanted to give Sassy a chance to explain what’s going on and explain why we’re helping her with this process, so this is a short and very honest interview about what’s going on with her, why we’re setting this up, and why this option was necessary for her. I should probably warn you that if you’re a sympathy crier you’ll probably cry, ‘cause I am, and I did. We also talk a little bit about the romance heroes who are getting her through really bleak moments right now.
The music you’re listening to is Sassy Outwater. That’s Sassy on her fiddle with “Fiddler on the Loose,” which as you’ll hear is our music for this episode by her request.
I do not take for granted how intimate and powerful it is to be in someone’s eardrums, so if you are listening to this and you take a look at Sassy’s page or you share it with someone or you donate or you tell someone about it, thank you so much for that. This is not an easy thing for any of us to do, but we believe that is necessary.
Sarah: First question: If you have a seizure while we’re recording, what do you need me to do?
Sassy Outwater: I should be okay for right now, since they just totally doped me up with medication. [Laughs]
Sarah: Ooh!
Sassy: Yeah.
Sarah: You’ll be fun!
Sassy: You have my address, right? Yeah.
Sarah: I think so? Hang on, let me write it down so I have it right in front of me.
Sassy: Yeah, you would just call 911, or I have my other phone right here next to me, so I can always just grab it and do it. Usually I have a pretty good aura, so I know when it’s going to happen. And I have a, like, a lifeline on, so they would know if my heart rate drops.
Sarah: Okay. And I can’t call 911 where I am, ‘cause they’ll be like, you want us to drive to Massachusetts?
Sassy: [Laughs] Right.
Sarah: Like, like, no. Let me see –
Sassy: Cambridge PD, that would, that would – I can take care of it. I’m not too worried about it. Should be fine.
Sarah: Yeah, I’m worried about it!
Sassy: I would call Cambridge PD. That would be what I would do.
Sarah: Got it! That’s, I’m pulling up the number right now in case I need it. So let’s talk very quickly. What, what’s going on with you?
Sassy: What isn’t? Cancer is incredibly disruptive. They got the tumor last June, so the cancer is –
Sarah: Yeah, we talked about it! You were cancer free!
Sassy: Yeah. I am.
Sarah: What the fuck happened?
Sassy: I’m still cancer free, but it leaves quite the after party when it comes out of your brain, just like if you took, you know, part of your bone out of your thigh?
Sarah: Mm-hmm.
Sassy: Things happen in there. You mess with brain tissue, stuff happens, and what happened for me, unfortunately, is that epilepsy or something very similar happened. So it’s just kind of knocked me on my ass. I can’t work right now, because I’m so busy going to doctors’ appointments or being sick or –
Sarah: And you have a seizure, you –
Sassy: – trying to deal with that.
Sarah: – you have a seizure, you bounce back into the hospital for a day or two, and you don’t know when –
Sassy: Yep.
Sarah: – you’re going to be in, and you don’t know when you’re going to be out?
Sassy: Exactly. So –
Sarah: So –
Sassy: – if, if I make an, a meeting for an appointment for work or something like that? Oh, sorry, have to cancel. Got, you know, shoved back in the, the hospital. And then the medicine that they put you on, they, they keep switching up medicines to try to find the things that will help, and they’re not finding anything, so it, they’re, at this point, looking at possible neurosurgery to try to help. They’re looking at every option they can, and until we figure out what’s going to get my seizures under control, there’s just no kind of rhyme or reason to my life, other than keep taking the med prescription, or the med cocktails that they’re recommending, keep trying different dosages, keep trying different hospital treatments, keep trying different things, and a lot of it is testing. A lot of it is, you know, lying in a hospital bed for a week or two waiting for seizures to happen so they can map out exactly how they’re moving through my brain, what they’re doing to my brain, and what the best approach would be surgically or medicinally to try to control that. And then on top of that, it’s what is it doing to my family and my personal life? How is it affecting the people who love me and whom I love who are trying to cope with this? And it’s incredibly disruptive and painful for all of us to go through this, so that’s causing a lot of problems.
Sarah: So why, why a GoFundMe? Because I know it’s super easy and not at all uncomfortable to ask total strangers for financial help. Everyone does it all the time; it’s super easy and not a problem. Except all of the opposite of that.
[Laughter]
Sassy: I’m a really, really, really private person. I may be an advocate online all over the place about, you know, disability rights, author rights, whatever, but I’ve just reached a point where I cannot keep – literally, turning over in bed feels like I just ran a marathon right now, because I am so heavily medicated and so sick.
Sarah: Yeah, I described it online as, as it being the most expensive full-time job that no one wants.
Sassy: Yeah. [Laughs] Basically, that’s exactly what it is. If I’m not doing that, I’m dealing with doctors, I’m dealing with insurance, I’m dealing with, you know, going through the, the treatments, going through, even just side stuff. Even just, you know, figuring out what kind of IV or port or line they’re going to put in me next to try to make life as easy as possible for my medical caregivers and for myself. It’s dealing with social workers; it’s dealing with pretty different things. If you have a regular organ, it’s just go in and cut out what is wrong or go in and fix what is wrong, but with the brain, there are so many facets to it that you have a team of eight or nine doctors. Anything from a neuropsychologist to measure what is this doing to your intellect and, you know, what kind of deficits is it creating in your ability? For me, it’s language processing. For me, it’s following linguistics, following conversations, whether it be on TV, whether it be in person. If there’re multiple conversations with multiple facets to them and overtones, it becomes incredibly hard for me to, to follow that sometimes. And then there’re, you know, neurosurgeons, there’re neurologists, there’s different specialty of neurology, there’re different neuro-oncologists who deal with the cancer aspect, and there’re different neuropsychiatrists who measure what are the seizures doing to your emotional side? And there’re social workers who just kind of check on you to go, how is this affecting you and your family? What is this doing to you personally? Because while this is afflicting your brain physically, it’s also affecting your mind, and you cannot separate your brain from your mind. They’re, they’re so interconnected that you can’t take one out of the other, and going through something that is going to have big neurological effects on you is also going to have big psychological effects on you. And just going through cancer in general, or the after, I call it the after party, any of that is going to have tremendous side effects on you emotionally, mentally, and physically. So you have to stay as strong and as – I don’t want to say positive, because you can’t always be positive, but you need to stay as realistic and aware as possible and be ready to cope with it while still balancing – your regular life does not stop, just because you’re going through cancer. I still have family issues. I still have bills to pay. I still have work that somebody needs to do, even if I can’t. I still have day-to-day needs that need to be met. I still have to, you know, the groceries are in the fridge and that there’s food on the table, and that does not stop.
Sarah: I realize that it’s much more comfortable to talk about the effects of what’s happening to you through the language of, of, of doctors who are dealing with what happens, because what you’re doing is, is so painful and invasive, and it is very uncomfortable to talk about yourself, but what I want to do is share with people who might be listening why we’re doing a crowdfund. Why is this important right now, and –
Sassy: We just got a perfect linguistic example. I realized right after I finished talking, I know what the question was, and I went somewhere else because my brain got kind of sidetracked? [Laughs]
Sarah: Oh, just a little bit. I’m kind of used to it, ‘cause we’ve done a bunch of interviews.
[Laughter]
Sarah: And I’m also tenacious and really nosy, so this is a good role for me. [Laughs]
Sassy: No, it’s, it’s good, because I, it’s, yeah.
Sarah: Why, why is this –
Sassy: I mean, I get sidetracked anyway, as a person, but yeah.
Sarah: Yeah.
Sassy: So –
Sarah: So why, why is this happening? Because what I want people to understand is that this is not a decision that you have made lightly, and it’s not a decision that is comfortable to make, to ask for help.
Sassy: No, it’s not.
Sarah: So –
Sassy: I –
Sarah: What can you tell us, my friend?
Sassy: My friends and family have, have done all they can. My family is trying to cope with the emotional burden of this. I have done all I can after two-plus years of knowing there’s a brain tumor in my head that needed to come out and supporting myself and my family through that. I can get into all the pride side of it. I work a really good job. I, you know, I’m okay, and then you get into the point of, but I physically cannot get up. Someti-, some days I physically cannot take care of my family right now, and a lot of authors, I think, and musicians and artists can relate. When you are a consultant or you are an independent contractor or you are self-employed in a small business, our financial system is not set up to support that, so you get questions: when are you going to return back to work? What about paid medical leave? That kind of stuff. If I don’t work, you know, there’s no money come in, and there are a lot of people relying on me. There’s me relying on me, and there’s a family and things that I – I don’t have room to have pride at this point in time. I have a tumor and what it left behind, and that takes up more space than pride, and I think there is pride in sometimes reaching out and saying, I love my community so much, and I believe that they love me so much because of who I am and what we’ve accomplished together that sometimes you have to ask. Sometimes, in order to live, you just have to put it all out there and give it all you’ve got, and I need to put everything I have right now into figuring out what’s going on with my brain, and that doesn’t leave a space left over for anything else right now.
Sarah: And there’s no way, like you said, for musicians, authors, artists, entrepreneurs, self-employed people, consultants, there’s no real easy disability insurance. There’s no, it’s not like if you work for a company and they have a disability coverage program, if you become disabled, you have short-term and long-term disability. There’s none of that.
Sassy: There’s none of that, and then it at some point runs out. You can save all you want, and I did. Like I said –
Sarah: Are you trying to tell me that cancer is expensive?
Sassy: Oh, my God.
[Laughter]
Sarah: Even with insurance, I think that one, one thing that a lot of people don’t realize, and Carrie wrote something about this on the site recently, and it really hit me that, you know, I’m, I am forty, I’ll be forty-one next month, and I am reaching a phase in my life where people I know have cancer, and they’re my age or younger, and – or older – and the, the, sort of the changes that come as you age happen to the people that are around you who are your family and your friends and the people that you love, and I have learned from, from experiencing that with, with you and with other people that cancer is a motherfucking expensive process! I mean, like, even with insurance, it’s huge!
Sassy: I’m sitting here looking at medical bills that are paid or being appealed, and throughout my care, just in the past couple years, we’ve well reached into the, the millions.
Sarah: And that’s for –
Sassy: Covered by insurance, and then cov-, you know, stuff that I have to cover, and prescriptions – you know, generic pills are pretty easy to, to pay; you pay a co-pay, you’re done, but when they have a pill that’s just reached market or a medicine that, you know, needs special authorization or things like that, those can run into the thousands. $8,000 a month sometimes, to pay for, to pay for medicine to keep you functioning. You know, and because I have such a rare set of diseases and because I am so young – I’m just thirty three. Cancer isn’t supposed to strike you when you’re young. Cancer is supposed to be something that hap-, happens, according to the way our medical system is built, to older people who are well-established and who, you know, can put up plenty of money to deal with it, or at that point, they’ve lived through most of their life, and there’s not much to do, and when it hits people between the ages of twenty and thirty-five – and this is totally documented – that’s the time when you’re supposed to be, you know, building up your credit, buying a house, starting to have a family or raising a family, you know, finding the right job for you, moving up in your job. You’re not in the corner office yet, you’re not established yet, you’re getting there, and when cancer strikes at that point, and for me, mine started when I was twenty-five – well, it started for me when I was six months, but it came back when I was twenty-five – so right in the middle of, of my prime of life, and I’ve worked around it for eight years, and I’ve just reached a point in the past couple months where I need to know that if I get sick that the people who rely on the services that I provide are going to be okay. The people who need me to make sure that the bills are paid are going to be okay. I’m going to be okay if I need to say, I need to stop work. Or right now: I cannot work.
Sarah: Hence –
Sassy: And, yeah.
Sarah: – crowdfunding.
Sassy: Hence crowdfunding and hence – if I don’t need it, I will make sure that it gets donated to WECHope or another organization that helps young children and young adults who are facing the exact same disease and the exact same circumstances, because I’ve been beside people, four to six people who have this exact same cancer have developed brain tumors or similar neurological things in their thirties. This is becoming a huge problem for the retinoblastoma community, and we need help because it’s such a rare disease and no one knows about it. Nobody has known that this would be a problem until all of are getting into our thirties and the radiation that we received as children is now starting to take these kinds of effects on us and cause secondary cancers and cause problems in our brains, and there’re some horrific things happening, and there’s just no research. There’re just no studies. There’s just no money for it.
Sarah: And so the response at present is, okay, you’re having seizures. They are incredibly strong, they are incredibly debilitating, you have one, and you wake up some time later in the hospital, and you have no idea what’s going on.
Sassy: Right.
Sarah: And this is happening regularly. Like –
Sassy: Right.
Sarah: – couple times a week at this point –
Sassy: Yep.
Sarah: – and so the response, because there’s no research, is sort of like pouring motor oil on the entire engine, to quote a doctor I heard on The Hidden Brain, on an NPR podcast – that you just sort of pour motor oil on the whole engine and hope some of it gets where it needs to go.
Sassy: Exactly.
Sarah: Which is generally –
Sassy: They just –
Sarah: His, his analo-
Sassy: – throw darts at the wall.
Sarah: Exactly. His analogy was, this is how we treat mental illness: pour oil on the engine, hope it gets where it needs to be, because –
Sassy: Anything mental illness and neurological right now, we would love to say we know more about the brain than we do, but we don’t.
Sarah: We don’t.
Sassy: We just don’t, especially when it comes to things like radiation treatments. I had radiation when I was one and two years old, and your brain is still growing, and they weren’t exactly targeting on the cellular level at that point, in the early ‘80s. They were just shooting a giant beam of radiation through my head and hoping to hit the tumors in my, the back of my eyes on the way.
Sarah: Right.
Sassy: You know, scatter. Some of it’s going to hit my brain, and it’s causing some pretty major things. You know, but doctors really don’t know what to do at this point. It’s, there’s that whole medical idea of point at the horse until you know for sure that it’s a zebra. The horse and the zebra, they call it. The zebra is the rare thing; the horse is the most common thing. Always look for the most common cause until you can’t. I’ve been a zebra since I was born. [Laughs] But they continue to either want to or only have the option to treat it as a horse because they don’t have anything else to go on at this point. We don’t know. That’s just where we’re sitting right now. We don’t know, and between that and family emergencies that have come up for me for the past three months, it’s, we’ve just reached a point where we have to plan for any eventuality, and I can’t plan alone. I can’t – I have a family. I have a huge internet family of Smart Bitches who have come and stopped by my bed in the hospital –
Sarah: Who beg you for music and make you do podcasts.
[Laughter]
Sassy: Totally, and I think that cancer is never a battle you fight alone. I’ve seen people fight it alone, and that, to me, looks harder than any chemotherapy or medicine I’ve ever been on. And I’ve reached a point where I don’t want to, I cannot do this alone. I need help.
Sarah: So I’m going to post this this week. I’m going to try to edit this and post it this afternoon if I can get it done in time.
Sassy: Yeah.
Sarah: I don’t know if you know this, but as of right now it’s been eleven hours since we put up your GoFundMe, and you’ve raised $635.00.
Sassy: I’m crying right now, sorry.
Sarah: It’s okay, you can cry. I’m going to cry too!
Sassy: I have been so amazed at – and I shouldn’t be, because I know the power of the, the romance community. But I am so in awe of what this community does for one another and how strong we are as a community and as a group of people. Thank you. I don’t know what else to say, and I promise that any portion that I don’t absolutely 100% need will go to WECHope and other – I will donate it to WECHope, which is the world retinoblastoma organization that helps children survive this cancer and adults who are facing what I’m going through survive this cancer. Thank you so much. This has been a really intense few weeks, and it just doesn’t stop coming right now, the being in and out of the hospital. Right now I’m trying to deal with separating from my partner and trying to figure out how to get through that, and I don’t want to get into how cancer affects people around me, because that’s their story to tell, not mine, but I know that any help will help them too, and right now they need to be devoting 100% of their love and their emotional energy into caring for themselves so that they can help care for me and care for us as a family, and that will help tremendously.
Sarah: Like I said, it, it is, it is really, really hard to ask for help, but I’m, I’m really glad you did.
Sassy: How many texts did you send saying that we, that this would be okay, and I, I resisted and I resisted?
Sarah: I said I was tenacious and nosy! It’s not like that’s news! [Laughs]
Sassy: Well, I tried everything, and at this point, I just want to know that myself and my family are going to be okay, no matter how long it takes me to deal with this. No matter how long I’m down, I need to know that myself and my family and those I love are supported and cared for and – that’s my job usually, and right now I just, I need to take time off and kick this cancer head-on, or its ghost, whatever you want to call it. I need to fight this head-on and be able to say, whatever the doctors tell me, I need to be able to say, okay, let’s do it. If it means I’m out of work for two months or twelve, I need to be able to know that I can say, okay, let’s do it and give it all I’ve got, because there are people counting on me, there’s work I need to do, there are things I need to do, and maybe this is pride talking, but I have a lot of work I want to finish, and I’m only going to be able to do it if I give this all I’ve got and I get better. [Laughs] Total pride moment, but you have to give yourself something to keep going through this for. You have to give yourself something to live for, to be quite blunt.
Sarah: I am going to use a piece of your music for this.
Sassy: Sure.
Sarah: Do you have a request?
Sassy: Oh, wow. “Fiddler on the Loose.” I need to get out of this. I need to get on the loose again. I need to run around and cause mayhem. That’s what I do.
Sarah: All right, no problem. I’m on it.
Sassy: Thank you so much, Sarah. I really appreciate it. And to all of the people helping me out right now. There are many people who will be helped by what you’re doing. Thank you so much.
Sarah: Thank you! And thank you for agreeing and making, making yourself vulnerable and talking about being scared.
Sassy: You know what? If I get to get up and show up at another RT or when I get to RWA – thank you, Ferdie, for knocking over the whole basket of toys – when I get to do that –
Sarah: He’s pissed! He wants you to get off the damn phone!
[Laughter]
Sassy: – it’ll be all worth it. If I can get better and get back to doing what I love and taking care of the people that I love, then being vulnerable and asking for help, there is no shame in doing that if you are taking care of yourself and those you love. If you’re taking care of yourself so that you can take care of people you love, there’s no shame in – there’s no shame in love. I think romance novels teach that, probably better than anything else on earth. Maybe I’m taking all those romance novels from all those authors I love and actually living it out or something.
Sarah: There’re worse things that could happen!
Sassy: [Laughs]
Sarah: Unless, unless, of course, you’re a, a virgin widow and there’s a serial killer, possibly also a duke who’s secretly a pirate or a pirate who’s secretly a duke. I mean, that could be a lot to deal with on top of everything else, but you know, stranger things have happened.
Sassy: Anybody who wants to donate me a duke or two or a Dom duke or anything else –
Sarah: You’re down?
Sassy: – now accept-, now accepting ducal donations.
[Laughter]
Sarah: I used to joke, like, the currency is yachts, and I require four, but I think dukes are a good currency. I, yeah, totally, absolutely, no question.
Sassy: Kate Noble, I can think of a particular one; Tessa Dare, I have two; Lisa, Wallflowers, point, point, point –
Sarah: Yep, yep, yep.
Sassy: And I’m not usually historical! Shannon, Shannon Stacey, a firefighter would be great. Then I, you know, have a built-in medical rescue system.
Sarah: Yeah, right?
Sassy: I mean, I could just keep going down my list of romance heroes you can donate to me right now that would –
Sarah: [Laughs]
Sassy: – help. You know.
Sarah: All right. And baring romance heroes, every small amount helps.
Sassy: True. [Laughs]
[music]
Sarah: Thank you for letting me hang out in your eardrums in the middle of the week. If you would like more information about Sassy’s crowdfunding, and if you want to see a picture of some really cute guide dogs, the show notes for this episode are at smartbitchestrashybooks.com/podcast. And if you’re thinking, I would like the link right now, well, of course you can have it. You can go to bit.ly/HelpSassy. You can find Sassy on Twitter @SassyOutwater.
If you have any questions for me, you can email me at [email protected]. I’ve posted about this on Facebook and Twitter and on the site. Any sharing or talking about or donating that you do is so deeply, deeply appreciated. Thank you for letting me interrupt your week in the middle. I hope you are reading an excellent book, and we will see you on Friday with our next episode.
[awesome Sassy music]
This podcast transcript was handcrafted with meticulous skill by Garlic Knitter. Many thanks.
God bless her. I said when I first heard of her here years ago, that ‘Sassy Outwater’ is STILL an awesome name for a romance heroine.
Sending good thoughts to Sassy. I don’t have any Dukes to send her, but I was able to donate.
Thanks so much for putting this on the blog, I don’t really follow the community on social media and had no idea. Glad I was able to donate. I love the podcasts with Sassy, and of course that’s all of them because of the awesome music she chooses.
Thank you, thank you, and thank you, x1000.
I hope everyone who is able donates. Feel better Sassy!
Please tell me how to contribute to Sassy’s campaign.
You can make a donation right here: https://www.gofundme.com/25rd5t64/
Thank you very, very much for any consideration!