EPISODE 37: Creative Sex + Disability
Guest: Mariah Power
Lauren: So, welcome Mariah.
Mariah: Thank you. I'm excited to be here.
L: It's really great to have you here. And I'd love to hear a summary of what your health journey has been.
M: Sure. So about 18 years ago I started having kind of weird symptoms and none of it quite made sense, you know, I have multiple sclerosis and the first symptom I had was two months of blurry vision or double vision while I was in college. And I think the doctor decided that I'd probably just fatigued my eyes with all the studying I was doing.
M: And it was random weird symptoms throughout time that ended up just building and building and building. And it wasn't until about three years ago that I um, was oddly having symptoms. I have a pituitary tumor that's benign, but I was having symptoms of that and they went to do a brain scan to just check and see if that's what it was. And they found the lesions when they did the brain scan. And so I had had symptoms for about 15 years and then three years ago I got diagnosed and my life has been better health wise, but it has been a rough struggle since I found out as well.
L: Thank you for sharing that. And I just, I wanted to say because you and I know this, but the listeners don't know this, that I have this form that I ask people to fill out before the episode and for whatever reason the technology gods didn't send yours to me. So I actually didn't know that you have MS until this moment when you just shared it with me…
M: Oh, wow.
L: And I’m feeling kind of emotional about it, you know, like I just, it's very special to me that we both have the same disease.
M: I know.
L: Because I don't know a lot of people with MS. I appreciate that I get to sit with you right now and kind of talk about it. And actually you and I were diagnosed around the same time. So we've been living with that knowledge for about the same amount of time. But you've been living with symptoms for almost two decades now. Is that right?
M: Yeah, yeah, that's right. And in the beginning, well let me say I am thrilled to be here talking with you too. I also don't know many people with MS and the ones that I do know are significantly older and so it's kind of thrilling to…. I have listened to your podcast and I admire what you're doing. I think it's so needed and it's so special that, you know, I've been able to listen. Being able to like heal and grow in ways from, from the podcast and then to actually get to talk with you is really awesome. So…
L: Aww, that's so cool.
M: Yeah. Yeah.
L: It's like we're kind of, I feel like we're all healing and growing together and you know, there's different ways to get involved in the podcast community, but I know that the majority of people who listen to it, I've never met you, but I know that you're out there and Mariah, you're one of the people who it's like you're bringing to life. You're kind of representing the listenership of the show and I feel you, you know, like every time I make an episode it's like I feel that sense of we're doing this together, we're in this together.
M: Yeah. Totally. What a special place.
L: Yeah, and I wonder if you could tell me a little bit about your transformation on a personal, emotional, spiritual level as you've gone through this series of kind of investigations and finally getting a diagnosis and living with the diagnosis.
M: So about 15 years ago I was...No, I'm sorry, 18 years now. I was 19 or 20 and I was studying at Georgia Tech and I developed just overnight. I woke up and my eyes wouldn't focus on pretty much anything. It felt like double vision and eventually I ended up going into the doctor and he said it was probably eye strain, but now that I have the MS diagnosis, I realized that that's actually one of the, can be one of the earliest symptoms of MS. And it lasted for I think close to two months and I ended up having to wear glasses at that point in time that helped my eyes focus because we were thinking it was muscle fatigue, but you know, once that went away the glasses were terrible, you know, they didn't work anymore.
M: And I started....The biggest and hardest symptom I think of MS for me has been chronic pain. I'm sorry, fatigue. Then chronic pain. So fatigue hit me first. Just devastating fatigue. I kept going to the doctor telling the doctor no, it's like I've never slept, you know, when I wake up in the morning it feels like I've never slept. And I think throughout for the first 15 years of the symptoms of this, because it would come and go, it would be like, oh I have the flu or oh I have blah blah blah. And like eventually it just came and stayed and I was having trouble walking. I had joint pain that was so bad. Like just moving was super painful.
M: And I have always been like a go getter, you know, from the get go if I could be up and doing, I was up and doing and would have to like cut myself off at night and make sure that I slowed down so that I would be able to sleep, that type thing and I am not that person anymore. And so as time went by it kept getting worse and worse and I was diagnosed with like 15 different things and eventually got encouraged by a boss I have that...she encouraged me to go to the Mayo Clinic and I went and because so much emotion was built up over this journey of kind of being dismissed. I, you know, I had the experience where I think rather than telling me they didn't know what was going on, doctors would dismiss it as me being depressed and I'm a licensed professional counselor and a certified sex therapist. I know what depression is, you know, and I wasn't feeling the emotional parts of depression except for the fact that when I was in pain and fatigued, then it was like, oh, I wish I could figure out what this was, you know, and so I ended up going to the Mayo Clinic and just cried like...from the second the doctor called me back and was manipulating my painful joints and I just started crying and I think I got lumped into that category of depressed woman. Um, and so they didn't do a ton of investigative work. I was having, I had a rash on my face, so I got sent to dermatology and they ended up labeling me with chronic fatigue syndrome, which here in Georgia, I'm not sure how the landscape has throughout the US, but here in Georgia, chronic fatigue syndrome is perceived as, “Oh, okay, you're a whiny, depressed woman. Wah, wah.” And so I really fought to have validation that it was more than I'm just too lazy or I'm just tired.
L: Right. And that it's so interesting. The name of, of CFS, chronic fatigue syndrome. The other name is Myalgic Encephalomyelitis and I feel like people hear “chronic fatigue syndrome” and do often just culturally write it off as not real and I just want to validate that it is very real. It is very life altering.
M: Absolutely. Yeah. I went into, I'm kind of a science nerd and so I went into like, looking up all the research and charting all the different, um, like trials that they were going through and what they were finding and you know, I had like a daily feed of things that they were discovering about chronic fatigue syndrome, you know, and trying all the different suggestions that I was finding online. I was married. I think my ex just thought that I complained too much and it got to the point where I was so exhausted I was having a hard time getting out of bed. And when I did get up it was like I can make it to the couch and then that's all the energy I have and on a lucky day, I can shower.
M: And I would try desperately to talk to him because I felt so lonely and so isolated. And I would start in on it and he would break eye contact and kind of look away and like literally just become completely unavailable and he would talk to me, I've always been a very creative person and he would talk to me about how I lost my passion and how all I wanted to do anymore was lay on the couch and watch TV and you know, his mom had passed away so he had been in a pretty bad state since then. But it ended up becoming kind of like blaming and eventually got to the point of emotional abuse and a month and a half after I got my MS diagnosis, that funny enough happened because I was lactating but not pregnant, and found out that I had a pituitary tumor.
L: Oh, wow.
M: Yeah, it's, I think it's called a micro prolactinoma. And I went to the endocrinologist and he wanted to be thorough, so he scanned my brain and it showed a ton of lesions. And so I got the feedback that yeah, I had a microadenoma, which was no big deal. I just took some medicine to shrink it over time, but he was pretty sure I had MS...and during this time my ex had been having an affair for the past year and I had suspected it, but I was too tired to like really, really investigate and about a month and a half after I got diagnosed, I found out that he had been, you know, basically leading a double life for this other person and I'm getting a little bit emotional. This is probably the hardest part of my journey.
L: Yeah, yeah.
M: Um, and so I didn't feel capable of doing much to be functional as a person and suddenly my marriage was a disaster. It has been so wonderfully educational coming out of that. And I'm sure we'll talk about that a little bit more, but I made it out of that relationship and I was able to finally get treatment for MS and started feeling so much better. You know, even though I have really rough days and I always have symptoms, sometimes there are some symptoms I have that don't go away. I am so much better off than I was, you know, five years ago.
L: Yeah. So that is a huge shift. I can see how the story of your relationship and the story of your experience with MS are so intertwined that there was...at some point the stars aligned in such a way that the information you needed showed up.
M: Totally. Yeah. I have thought so many times since then how lucky I was to, you know, at the time I couldn't process the MS diagnosis because my heart was shattered, you know?
M: But since then I have looked back and thought you know, what to be able to find all that out. I know I could have made it through, but it would have been so much more difficult to make it through the marriage falling apart if I weren't receiving proper treatment for the MS. So I've been so grateful that it came when it did.
L: Yeah. And, and we are looking back at it now and able to say that and at the time I imagine it probably felt like one of the darkest things that you've had to go through.
M: Yeah, and I have a very different, like my life does not feel like that anymore, you know. Throughout this process I really got through something that was incredibly emotionally turbulent and physically hard and I know I have the strength that I never would have had if I didn't go through this experience, and I think relationship wise he was not the person I was meant to be with, you know, and definitely specifically with having a chronic illness, he just...he was not.
M: And it taught me what to look for in a relationship to pick something really healthy that is a type of partner that I want to be with, you know, and indefinitely.
M: And I've found that, you know, I listened to that voice saying find somebody who loves you with illness. And I did. And I have an amazing partner now.
L: Yes. Beautiful.
M: I know. Yay!
L: I did my victory pose or put my arms up in the air. Success. That's so lovely.
L: And, and so tell me a little bit about that voice in you that said, find someone who loves you with chronic illness.
M: Well, am I allowed to cuss please?
L: Oh, please!
M: Oh good. I have a foul mouth.
M: I'll try not to let it fully go, but I am definitely foul mouthed. Um, I'm stubborn as hell. I have always been stubborn as hell and I think that's part of what kept me searching for answers after 15 years of dismissal and it's part of, just what I am. It's part of who I am. And so even at the point where I felt hopeless and I felt like this is it, you know, I, I won't last much longer...after getting a divorce, you know, for a long time I was crushed and I felt unworthy because I was quote unquote broken and who would want to take on a chronic, a partner with a chronic illness forever? And I think a lot of it where these voices of fear and guilt and, and you know, some of the things that my ex told me was incorporated into my internal dialogue and I think that stereotypically in life when I hit something like that, I have this little voice that screams, fuck that. Let's figure out how to make this work. Um, and I'm so grateful that that has been there.
L: I love that. I just feel like that that story is reminding me, and I hope everybody listening, that like I think we all have a voice in us whether it says fuck that or I know what's really important or I don't have to spend my time worrying about that thing...that we have that part of us. For some people it's really developed, some people not so much, but it's such a helpful kind of like a discernment tool.
M: Yeah. Yeah. It's this little piece of I'm going to go counselor here. Um, if we're looking at internal family systems, it's that person inside me that protects me always.
M: And it was that person that was like, are you kidding me? Who cares if you have a chronic illness, you deserve a great partner.
L: Yes, yes!
M: And I picked one.
L: I love that.
M: And told him from the get go.
L: Sometimes when we talk about relationships and there's a partner who has a chronic illness or a health challenge, sometimes we say, Oh, I'm so lucky that this person picked me. And that's true because I think all of us are lucky when we have great partnerships and I love that you said I picked him because you did! Like, that's part of your choice and your brilliance that you found it in yourself to say I deserve this. And then you found, when you found and met him, you were like, Yep, this is for me too. And it’s awesome.
M: And it's an oversimplification to say, “When I found him I was like, yes, this is it.” I definitely had a lot of, I don't know, can I trust you? I doubt it, you know, back and forth until it just…yeah.
L: And that makes sense because you were going through such a challenging time where I imagine you probably had to protect your heart fiercely moving forward.
M: Absolutely. So there was definitely a lot of genuine struggle and genuine struggle of daily reminding myself. The voice that said “Fuck this, pick a good partner” is the voice that I listened to instead of the voice that says, “How can you date with a chronic illness?” And you know, you used to be this person that you admired so much and now you're somebody different.
M: And you know, my partner from the very get go. Um, I'll, I'll give you a little bit of background on this. I joined Okcupid and um, I read his profile and at the end of his profile, one of the questions is, “What's something most people don't know about you” or something like that. And he put on there, my favorite ink is glitter ink. And I was like, I have to know.
L: I love that.
M: So we ended up science fiction novels and glitter ink and it turns out he does gorgeous calligraphy.
L: Oh, wow.
M: It was that glitter ink. And I imagine that like part inside me that is my protector is this little girl in a dress, defiant and sparkly.
L: I love that. So cool.
M: Yeah, I’ve always had a little flair for...yeah. I almost envision, you know the statue that was put up against the bull, the charging bull?
L: Yes, in New York City.
M: That is my little protective person because she's been there my entire life and I so value and celebrate her at this point.
L: Yes. Now when you were mentioning that part of you, the part that is able to say fuck this and the fierce protective little girl part of you, you mentioned the phrase internal family systems and this is one that for, for us therapists is a familiar term and I wonder if you can share what it is to give a little idea to listeners if they're interested in learning more about this concept.
M: Yeah. So when we're looking at internal family systems, we basically are looking within a person and determining what parts make up you as a being, and through internal families systems. We kind of personified the different characteristics that make up your whole structure. And in doing so sometimes we can separate out from, from uh, I don't want to say separate out. I can't think of a better term. Maybe you can help me, Lauren, as I go, but like objectively look at the different characteristics of who you are so that you can know is one of them functioning, you know, in a helpful way or an unhelpful way? And when are they helpful and when are they not? So that you can kind of change your patterns to understand how best to help you in situations and the things that you can thank and let them know that at this point they're not needed, maybe tomorrow. Does that make sense?
L: Mmhmm, yes.
L: And also it's almost like thinking about different muscle groups in the body, like there are some muscles that we use often and can get very developed and that we become very familiar with using. So similarly, internally we have certain parts of ourselves that we're very familiar with that we kind of like we are using, for example, the let's say my internal host, my internal, um, provider that wants to create a safe environment for people that wants to help people feel comfortable and open. That part of me is a part that can be really helpful. And then it can, if I use it too much, it can take away from my ability to receive or my ability to allow love in and I can become, I could get to the point where I'm like hyper vigilant and I'm only worrying about other people's needs. So if I'm only worried about other people's needs, then I'm kind of like, I've got part of my emotional system that has atrophied, which is I need to build the muscle of receiving. So this is an example, but I mean there are so many different parts of us, and I've said this before, we are so many things all at once. Oftentimes they seem like they may be conflicted. Like we have a part of us that's scared and a part of us that's excited and it's happening at the same time and does one of those cancel each other out? Nope, it doesn't work that way. We are multifaceted being so what you're talking about is identifying, really acknowledging that we are complex and that there are specific parts and those parts are informed by the world, by our parents, by our upbringing, and that we, when, when we bring them into consciousness, we have more choices. We have more ability to choose who is, I call it, who's driving the bus. If you think about like a bus full of different parts of us to be able to say, okay, I'm going to let my, my fierce protector drive the bus instead of my scared part that it's gonna make me never come out of my house because I'm afraid of everything. So…
M: What a beautiful description. You really nailed it and I think I'm going to steal it to use with clients.
L: Do it. You know, I probably stole it from somebody that driving the bus thing is definitely not mine. I love that.
M: I love the idea of viewing it as muscle groups. You know that…
M: Some you build, some are very strong and maybe you need to let relax sometimes. I really love that metaphor.
L: Yeah. You need a massage.
M: Yeah, that's exactly right.
L: Yeah, and for me, I forget who told me about the bus analogy, but it really helps me to understand that it's okay to let myself feel all of my feelings and that whoever's driving the bus is often who's informing my action because we don't usually have options when it comes to emotions. They just show up when they do, but we do have choice around how we proceed and what action we take. So it's sort of like, okay, who's going to be the bus driver in this moment. Is it going to be the reactive part of me that wants to call someone a bad word or is it going to be the part of me that knows that I'm going to get my needs met better if I can take a deep breath and pause before I say something.
M: Absolutely. Absolutely.
L: So, you know, what I really want to talk about with you, Mariah, is sex.
M: Yes! That’s my favorite topic.
L: Yay. We're so lucky to have you on the show today because, you know, this is one of the topics that we...I just think all of us probably need and want to talk about it more. And so, um, you are, you specialize in working with sex and chronic illness and I just would love to hear about where that passion came from and what you love about it.
M: Yeah. So I didn't originally go to school to be a counselor. I went for other things and um, took a psych course so it's an easy a, and ended up loving it and before I knew it, like I had stacked my schedule with psych courses and realized, oh my gosh, this is, I have a passion for counseling and for wanting to help people and just learning more about, you know, psychology and our inner workings and all that business. So I ended up switching majors. I transferred schools and when I started out I had a rough first couple years of college with different health issues happening and I had an apartment that burned down and it had just been a really intense, stressful period. And I have always been one of those like duty bound people. So, you know, I do this because this is the right thing to do and I am slightly less that, I still have that. But I'm definitely a bit of a rebel too. Um, and so when I changed to psych, I thought what would be the most fun thing I could do? Sex.
L: I love it.
M: So I took a psych of human sexuality course and was just enthralled and I've always been one of those people that are open to talk about it and friends have always come to me and asked to, you know, different sexual questions which can be challenging in Georgia. I grew up in a small town in Georgia and a female sex therapist, it's rebellion right there when it comes to our lovely a conservative state.
M: And so yeah, I ended up taking that road and graduated to pursue a degree in a community counseling is what they called it at my school. I was at UGA, but knew all along I wanted to be a sex therapist. So I started pretty early trying to get stuff together to get a certification, which is actually pretty...A lot of people don't know, but it's pretty rigorous to get a sex therapy certification and you know, worked and worked and worked and it happened and it is….I love my job. Every day I love my job and I think it's such, it's an area that goes so dismissed or unspoken, you know, a lot of times when people, or at least my experience here in Georgia and I think for a good number of states in the south, it's a topic you don't talk about. We don't get sex education really. I remember my sex ed class was repeating the words vagina and penis until we quit giggling and then we learned how babies were made and that was it.
M: You know, there was no discussion of pleasure. There was no discussion of really acceptance and sexuality being part of who a lot of us are and no discussion about how fun it can be. That is not how I'm going to view sex. And so, you know, I, I kind of crafted throughout my own life that sex can be this fun, pleasurable bonding thing and it was just a natural fit to incorporate it, you know, work wise. And then as I started struggling health wise, you know, sex is impacted by so many different things and I've always loved sex and I still love sex. That has never changed.
M: Right? But you know, as you deal with difficulties, your sex life gets impacted and so I started realizing how frequently we take people with different abilities and make them kind of asexual in the general population. We don't think about people with disabilities having sex. There's no way I was going to have a disability and be sexless.
L: Yes, yes.
M: Yeah. I think a lot of my own experience with chronic illness and chronic pain is what really pushed me to start talking about these things with clients, you know, and bringing it up and now I've got a reputation so I keep getting clients with differences with chronic illness and it is so rewarding that I can help them go from a place of not feeling sexy or not knowing how, you know, because maybe our leg muscles are not very strong or arm muscles are not very strong and do we actually have sex that accommodates our strengths and you know, or accommodates our weaknesses and plays to our strengths. And so it has been so fun and creative to come up with, you know, different ways to have sex that work.
L: I love that and I, I, I, I think the word creative is what pops up for me when I think about having sex when there are limitations and like you said, there's so many different types of limitations. Disability is one of them that, you know, probably it's probably pretty clear at this point that part of my life philosophy is, you know, okay, this is not what I ordered. Now what? So it's like, okay, there's a limitation...Now let's get busy. Right? Like let's get busy coming up with solutions, with ideas, with trial and error, with having some downtime to not come up with solutions. But then coming back to the table, I think about how sex is in fact, I think one of the most creative things we do on this earth with the bodies that we have. And so…
L: And I do believe like a lot of the best art comes from limitation. And so I love that you look at the creative side of how can we approach sex in a way that allows us to have weak arms or weak legs and still have a connected experience. And I'm curious like what your, some of your favorite creative solutions have been that you have found.
M: So one of my favorites that, well, I'm stalling.... I have too many favorites and I can't come up with the right one. Right?
L: I know. It's like you'll, you'll fall asleep tonight and be like, why didn't I say that one?
M: Exactly. Oh, that's a favorite. Oh wait, that's a favorite. So early on I was talking with somebody who does have leg weakness and I kept thinking, Gosh, if we could get a trampoline that would somehow fit then your partner, you could be on top, which is, I know a lot of women who really, really love being on top. And this person was a woman and it was just it for her. That's what she loved. And she mourned that the most. And I just kept thinking, if we could get a trampoline and allow you to sit on it but it accommodate your partner underneath and then your partner could kind of bounce you or you know, let you...what I call a ride or glide instead of bouncing. How much would that improve your sexual experience? And so I helped this person get, you know, basically go to home depot and build a frame and then get very stretchy, you know, but supportive elastic and have two little runners of elastic and they could do it. And the delight she, when she walked into my office, like made my career, you know. It, it jumped off, it was so wonderful. And now I have actually looked recently and there is a product that like, this trampoline exists in real life now, you know, not just created.
M: So yeah.
L: Oh my gosh.
M: You know, think of how, how many times do I go to leg fatigue because that's one of the main symptoms for me is when I have a flare of MS. I have a lot of muscle weakness in my right side. Then it goes through my legs but also through my arms and sometimes I can't. I have foot drop which is a symptom of MS where you can't fully lift your foot. But I also sometimes I just can't use that leg, but I can still have sex.
M: With a sex trampoline!
L: That is so fantastic.
M: Yeah. And another one that, a lovely friend of mine that lives out in San Francisco talked to me about last time I was in town and I thought, how did I not like, how was this never on my radar? She takes a, uh, she's a sex educator and one of those automatic soap dispensers or hand sanitizer dispensers, she actually fills it up with lube and puts it beside the bed. So how, and for her it's just, Oh, this is convenient and I don't have to touch the lube bottle when my hands are already slick and blah blah blah. But it has been really helpful for me to talk about using that type of method with people who have hand pain, arthritis, low grip strength so that when the sex...to me lube is all the time. Everyday, all day.
L: Oh, that's so great.
M: Yeah. And they can easily get to it without having to, you know, like, oh, stop and is my hand working and you know.
L: Yes, yes. Oh that's so fantastic. And so important. And it seems like such a simple fix, right? We can all use.
M: Right? Yeah. You know, and I do a lot of talking about repurposing sex toys and different ways.
M: To be able to use if you have difficulty with pain or getting it in the right spot or a lot of times chronic pain people are on different types of painkillers that can deaden out pleasure sensations in the pelvic floor. And so we talk about, all right, let's get one of my favorite toys as a Hitachi magic wand and I call it the Jack Hammer. Um, because if you're not feeling like a regular sex toy’s intensity, the Hitachi is like blow your clit off and then blow off your entire body. It's got two speeds. And so, you know, I talk about differences in sensation and what type of toys might work in different ways. It's also been, I have seen a fair number of people who are on the autism spectrum and with sensory integration difficulties, their experience of pleasure might be very different than what...there is no really normal sex. So I don't like that word, but what we might think of as a go-to on how to get arousal going and physical sensation going can be very different for people who experienced differences in sensation and so I do a lot of work with discovering what is pleasurable sensation for those clients and how do we find real world changes that will get them experiencing it on a consistent basis.
L: You know what I want to do right now because I'm just feeling so much pride about having a chronic illness and the fact that we're talking about sex and that there are so many wonderful creative solutions and I'm sure we're only brushing the surface.
L: I just feel like I want to brag about the fact that when you have chronic illness and you are working on sex or you're working on your relationship with yourself or your spirit or whatever, I think you're winding up doing work that we all need to be doing anyway. It's just that you're doing it sooner because you're trying to tackle this very immediate issue and I'm thinking about how much sex is something that we've been told. What feels good, we've been told what we're supposed to do, what we're supposed to like, and the reality is that you're doing work with folks that we all deserve to do, which is to survey what do I really want and how can I get there regardless of whether it's because of a disability, but it's so wonderful and liberating to know that people are taking their own sex lives into their control so that they can create what they really want. Um, and I think of this as an invitation to all of us to do that.
M: Yeah. I think that is one of the gifts that I have gotten throughout time from having a chronic illness. It's not just do I feel like I can conquer really, really, really hard situations, but learning how to function in a world that is not necessarily created for different illnesses. I have to be creative and adapt in all aspects of life. And sex is one of the most fun. So yeah, why wouldn't I be creative and adapt in that way too? And then help everybody I can think of experience pleasure and really like recategorize what sex is. A lot of people, um, that I've worked with. Sex for them is heteronormative and its penile-vaginal intercourse and oh, there's so much more to sex than that. And so many different ways to explore it and adapt to what feels amazing without the constraint of, oh well it's not sex if it's not this or I'm not having pleasure if I'm not doing it this way.
L: Yes. Yeah. And that's such a...Yeah, it's such a, a starting point when we start to realize, oh, wait a second...maybe what I've been told about what sex is directly and indirectly is, is not the whole picture. And once we realized that, I think a whole world opens up of options.
M: Totally. And I think that because we have such a view of, you know, we're, we're limited and our perspectives in the US around sex, you know. So many people are creeped out by old people sex. I think the best way to go out of this world is having sex. Right?
M: So if I get lucky, I'll be very old and I will be doing it.
L: Oh yeah.
M: That's how I'll kick it.
L: I love that vision.
M: So we kind of make different populations a sexual and cultural norms. Right? And so people that are old people who have chronic illness, people who have different mobility issues, all kinds of things like that. We just immediately take sex off the table and I can't imagine, you know, I had a life before chronic illness and I have a life after chronic illness and it would be one of the most devastating losses for me not to have sex at, you know, I'm 38. But when I first started experiencing symptoms, I was 19, you know, like how could sex become a non-issue in my life after chronic illness. So yeah.
L: Ugh. You know, there's this theme in your story that you've told today, the different parts of your life that you've shared where there's this external factor that isn't working for you and then your internal sense of what you actually need kicks in and you listened to it and you change things in your life. You reorganize, rearrange, and start getting what you need intentionally and I just love that theme. It's such a, a wonderful, I think of this as like your victory story.
M: Totally. Yeah. I, it has been really interesting the growth that has happened through the period and you know, I don't want to sugarcoat it. It has been hard as hell to have a chronic illness, to have to really change my identity, you know, in, in different ways. I used to have a very, very strong body and I, you know, I danced and I did a lot of martial and you know, that changed. Suddenly my body through quicker muscle atrophy in different areas and through fatigue I'm not as strong as I used to be physically. I'm way stronger mentally I think than I used to be and I'm certainly way healthier mental health wise. You know, it kind of chronic illness can make you face rock bottom and then figure out what am I going to do. And I think that that process is so important. And I also, we, I, I grew up fairly poor and you know, you have to learn and adapt to accommodate needs when you're poor. And my mom is an incredibly strong and very creative person and I think she was really good at instilling aright, well how do you learn this and do it.
L: That really laid some groundwork for you.
M: Yeah, totally. My sister was going to move home one summer during college and we didn't have an extra bedroom so in one weekend we converted the garage into a bedroom. We, you know, hung drywall and carpeted it and hung doors and blew in insulation in the walls and you know, opened up a way for an air duct to come in. Like, and this is what I'm doing when I'm like 16 over the weekend. Of course, at that point I was pissed that I had to give up my weekend, but such adaptive skills that I've been able to take into adulthood.
L: Absolutely. And you have that attitude of it is possible to create what I need to create because you needed to growing up and now you send your clients to Home Depot when they need to and you say to them, you can create what you need to create, you just gotta stick to it because it's worth putting in the effort so that you can get your needs met and and like you said, that limitation growing up poor of having to build what you could with what you had and to see your mother's attitude towards life and towards...All right, let's, let's do this. It sounds like a really strong foundation for that inner sassy little girl protector. What did you call her glitter? Wearing glitter?
M: Yes, sparkly. She's super sparkly.
M: Yeah. One of the things that has been super beneficial and I try to instill in other people is approach challenges with curiosity. If you can go into it with curiosity, then you listen to what you might actually need without judging where you're at. Mindfulness has been so incredibly helpful to me throughout this journey and I think it continues to be helpful in teaching me to approach things in a curious way and learning how to fix them rather than going in with a preconceived notion of how it has to or a judgment around what something is or isn't.
L: Oh, I love that. Yes. The curiosity is the ingredient that can really transform a situation that we, like you said, with mindfulness, we can bring our curiosity and it changes things. There's a quote that it's reminding me of what you're talking about right now and I used to have it on my refrigerator. This is part of a poem by Hafiz and it says “God only knows four words and keeps repeating them saying, “Come dance with me. Come dance.”
M: I love that. There is a poem that I stumbled on, you know recently that I just...something about it just touches my soul. Right, and it doesn't list the author other than saying the initials A.A, but the poem is “I wrote poems inside of her with my fingers. Our story began with her scream and ended with her soul on my lips.”
L: Oh Wow. What a sensual poem.
M: Right? I love the notion of thinking that when my partner and I are intimate at the end of it, he has my soul on his lips.
L: There’s such intimacy.
M: And the thought that I know myself well enough that during sex I can show my soul.
L: This poem you just read is such a beautiful transition into the spiritual, emotional aspects of sex when you have a disability or a chronic illness where it could impact our identity and it can impact how we relate to our partners.
M: Yeah. I think, um, it's easy when your body stops working and the ways that you've known it to work or if you've always been struggling with your body working differently than maybe your peers or who you know, there can be this little voice that starts talking about how maybe you're not sexy or maybe because you can't do sex in the way that other people talk about doing sex, that that's just not part of you. You know? And for me going through this journey, I have always felt like a sexy and sexual person until I started having so little energy that, you know, some days I didn't shower and for me not showering was kind of gross. Yeah. I don't want to let anybody close because maybe I smell or maybe you know, whatever. And it has really taken going through that and breaking down what that view is have sex to allow me to reconnect in really emotional ways. One of the things I use with a lot of clients when we're trying to figure out sensation and whatnot is really a mindful approach to experiencing pleasure. You know, rather than focus on orgasm or rather than focus on style or technique, I want you to focus on how your body registers sensation and being able to bring your awareness down to your body to have curiosity about it, to remove judgment can really open up the spiritual and emotional connection to this experience of pleasure, but you have to be willing to except what's there. I think in order to be able to like go into this erotic, euphoric type of place.
L: Yeah, it can be so vulnerable for anyone to really begin to ask those questions of how can I tune in to what I'm experiencing, what my sensations are, how I'm receiving, what pleasure feels like for me emotionally and physically and it's vulnerable because we're unveiling ourselves to another when we're, when, when it's in the context of partner sex, we're unveiling ourselves spiritually, emotionally to ourselves as well. And, and that's a vulnerable endeavor.
M: And even if it's solo sex, you know, even if you're masturbating. I really hated my body when it wouldn't function well. And when I started feeling less strong and you know, my limitations, fatigue wise, I ended up gaining weight that I didn't expect to be there. And shifting my idea that sexy could also be plump. Like I replaced my internal language about myself as, Huh, what is this body I don't know? with Oh my God, I am juicy and hot. Right?
L: I love that. That's such a great turnaround. What you just. That language reminds me of the author Sark, who wrote the book “Succulent Wild Woman”, and that juicy, just that all kind of wraps up together of like owning our bodies, owning our power and our brilliance as, as being. We are all worthy of being sexual beings and brilliant and sensual and feeling and we are allowed to have preferences and we can be attractive way beyond what we've been taught is attractive.
M: Mmhmm. I do. Um, I know your audience is pretty broad. Um, but I do also work with people in the kink community and kink...It can be so wonderfully helpful, particularly if you are experiencing pain because you can learn to experience pain as pleasure versus as just a pain. And so for people who are having chronic pain, being able to make a shift like that in perspective can be really liberating and a lot of kink, you know, focuses on honesty and trust and trusting someone else to handle you and the way that you need to be handled or want to be handled.
L: Yes, yes.
M: And also providing that same thing. There are so many different, you know, like if we look at rope like a bdsm bondage and um, also like the beautiful rope work, people who have difficulty with strength can actually create supports in some of the beauty that comes with rope work that allow you to do it in like a super sensual intimate, trusting way.
L: Oh, I love that. And it is true collaboration and co-creation. And one of the things about kink that I think is so special is that it requires exquisite communication and attention perhaps more so than like the average sex. Because you need to be really clear that you're on the same page, that you are, that you have a vision that you're sharing, that you've got your communication techniques down and then you build a world together for a period of time or a long period of time and that is so special. I think it's a true creative endeavor.
L: I just love talking about this with you and if folks are interested in exploring some of these themes and topics, what I'm going to do is ask you for some recommendations that we can put in the show notes for folks who are just kind of getting started or want to keep, keep going with their sexual self understanding and expression, but if you have any that you want to mention right now out loud, you can certainly mention them.
M: Totally. I would say every human in existence should read Emily Nagasaki's book “Come As You Are”. You know, we've done a disservice in that. A lot of our sexual research early on was based on male sexual response and it became kind of the notion that if you differentiated from the majority of male sexual response, then something was wrong with you and what research actually shows is stereotypical, like cis men and cis women have very different sexual arousal cycles and desire and how you actually get there and it certainly most of those categories, but not all, you know, there, there are certainly exceptions to the rule and of course you have the wonderful variations that can come with, uh, having intersex or being trans or anything within the category where you don't necessarily align biologically with who you actually are.
M: But yeah, her book is wonderful. It talks about a lot of the differences and gives you a really good case studies that show how some of those dynamics can play out in real life relationships. And I think knowledge is power in so many areas. And I would say in sex, knowledge is pleasure.
L: Oh, that is so cool. Fantastic. Okay. What does it mean to you to have a fulfilling life and has that definition changed because of your health journey?
M: Absolutely it has changed. So I think having a fulfilling life for me is being absolutely true to who I am and accepting that and the negatives of life, but also the positives, you know, being loving to myself and being open to experiencing who I really am, including chronic illness.
M: I also have found a wonderful partner that is just amazing. He has helped me learn how to accept my chronic illness in ways that I couldn't do by myself and so setting the stage where I share my life with friends, with family and with partners and share exactly who I am without making mistakes or feeling embarrassed or apologizing for whatever limitations I am...I have. I'm sorry. I think that for me is fulfillment.
L: Oh, that is so cool.
M: And it has definitely changed because I have been forced to face a lot of those things that I really didn't have to look at before chronic illness. One example is I'm limited with how much I can work. I work part time because otherwise I over fatigue and have more difficulty with my limbs, but in working part time I've also been forced to really go back to my creative roots and find nourishing, creative, artistic things that are really who I am and now I have so much time for those.
L: Oh, that's great. Yeah.
L: Do you have any funny stories from your health journey that you can share?
M: Yes, probably way too many. I really, really value humor when it comes to life in general, but specifically when it comes to pain, I think humor is important. When I first started having difficulty with, uh, my legs working, I would be walking around and suddenly my leg would buckle. I couldn't support myself and I just fall over wherever it was and I don't get embarrassed very easily. That's probably a known since I'm a sex therapist.
M: But, uh, I went to Dillard's department store here and was looking at like orthotic orthopedic shoes that had the really good supportive foot beds and I was standing in front of this huge display trying to figure out what to look at first, my leg gave out. I fell onto the table, I shot shoes everywhere and my immediate response was just to laugh hysterically. I know I looked insane. There was a woman beside me asking if I was all right and I couldn't quit laughing in order to say okay. And I also couldn't get up because my leg wasn't working, so the salesperson came over and, uh, was totally willing to just bring me shoes to try on until my leg could work again to get up and leave.
L: Oh my gosh.
M: I felt like I was being catered to.
L: Oh my gosh. You're like, well, I'm here. I'd like to try on a size seven please.
M: Exactly. The shoe that I shot over into the men's department. Can I see that in an eight? I would like that. I appreciate it. We're going to play hide and go seek with all your shoes today.
L: There's something about the...there is a surrender to me that happens when we laugh. We surrender to this new moment. We are, we are allowing something into our hearts and souls. It's almost like you're allowing the universe to tickle you. You know, you're allowing yourself to be tickled by a situation. And to me it is, it is one of the most divine things about being alive is being able to really laugh and that is such a beautiful story, a classic, This Is Not What I Ordered moment and yet you can share it with us today and we can laugh with you as though we were there. What do you have now that you might not have had without your multiple sclerosis?
M: I have a more balanced life. I really truly have a work life balance. I have a job that I come home loving every day. I have a creative outlet and a reconnection with my creative self in a way that I might have just brushed off as not necessary and I have a relationship where I am 100 percent myself and I'm accepted for that and loved for that and they know how much my friends and family love me and you know, I had a friend that when I found out that my ex was having an affair, I called him and he picked me up and he and his wife let me live there in their house for a year for free just to support me kind of getting back on my feet and figuring out what I needed to do. So I, I experience love and kindness from people in a way that I probably wouldn't have before.
L: Wow. Balanced support, authenticity, love community, all of those things, that is so beautiful.
M: Yeah. I'm very lucky.
L: Finish this sentence. This is not what I ordered...
M: This is not what I ordered, but it turns out I got delivered dessert instead of something that I thought I wouldn't like.
L: Oh, I got dessert instead. I love that.
L: Thank you so much for this conversation. I just really appreciate sitting with you today.
M: Same. Here I am. I am so thrilled that I got to be on the podcast. Your podcast has really been part of my growth and acceptance around chronic illness and being able to just feel validated in some of the experiences I've had and here are other people independent of what they're struggling with, knowing that it's, you know, that some of my experiences are normal and other people are feeling them too.
L: That is so cool and I'm so grateful that we get to create this community together. That it's up to all of us to build these conversations into our lives so that it's normal to talk about this stuff. It's normal to know your own brilliance when you get through difficult things, including illness. Uh, and it's normal to lift each other up because that's what we're doing through this. It's giving permission to have all the doubts, all the fears, all the excitement, all the joy, all the relief, all of it is welcome. And, um, I just really appreciate you reflecting that to me, that this podcast has meant a lot to you.
M: Yeah. Thanks Lauren.
L: Yes, you're welcome.