Diversability Amplified Podcast: Body Grief, Disability Pride, and Finding Healing with Jayne Mattingly [S2:E11]
In this episode, host Tiffany Yu sits down with Jayne Mattingly, author of This Body is Grief: Making Peace with the Loss that Comes with Living in a Body. They dive into the concept of body grief, its intersection with disability, and Jayne's personal journey of navigating her genetic disorder, Ehlers-Danlos syndrome. Together, they discuss the importance of grief literacy, self-compassion, and building community, while also celebrating disability pride and the resilience that comes with it. This episode is for anyone who has experienced body changes, grief, or is seeking guidance on healing and acceptance.
Jayne Mattingly is a disability advocate and eating disorder recovery coach. She is the CEO of Recovery Love and Care, a global virtual eating disorder recovery coaching curriculum and training program. She is also the Founder of the non-for-profit The AND Initiative, which aims to provide inspiration, advocacy, resources, support, and the gifting mobility aids to those with chronic illness and physical disabilities. Jayne lives in South Carolina with her husband and pets.
Show Notes
Jayne's Journey and Body Grief Concept
Exploring Body Grief and Disability
Jayne's Journey With Disability and Weddings
Body Grief, Community, and Healing
Building Relationships Beyond in-Person
Grief, Joy, and Mind-Body-Spirit Connection
Jayne's Journey and Disability Pride
Summary
Quick recap
Jayne and Tiffany discussed the upcoming publication of Jayne's book "This is Body Grief" and explored the concept of body grief, its relationship to disability, and strategies for coping with it. They shared personal experiences and insights on living with disabilities, emphasizing the importance of community, self-compassion, and finding joy amidst grief.
Summary
Book Publication and Podcast Discussion
Jayne and Tiffany discussed the upcoming publication of Jayne's book, "This is Body Grief: Making Peace with the Loss that Comes with Living in a Body", scheduled for March 18th. They also talked about the podcast "Diversability Amplified", which aims to share disability pride stories of community members. Tiffany mentioned that she and Jayne are both newly published authors. The conversation then shifted to Jayne's origin story, which she agreed to share, providing context for her perspective on the topic of grief and disability.
Jayne's Journey and Body Grief Concept
Jayne shared her personal journey of self-discovery and transformation, from identifying as non-disabled to becoming newly disabled due to a genetic disorder called Ehlers-Danlos syndrome. She discussed her experiences with an eating disorder, her passion for mental health advocacy, and the challenges she faced after losing her sight and experiencing paralysis. Jayne also introduced the concept of "body grief," a term she coined to describe the grief people experience when their bodies change or no longer function as they once did. She mentioned her book, "This is Body Grief," which explores this concept and delves into systems of oppression and the importance of joy and gratitude.
Exploring Body Grief and Disability
Tiffany and Jayne discussed the concept of body grief, which Jayne described as a universal experience that everyone goes through. They differentiated body grief from disability grief, which is compounded by systems of oppression. Jayne introduced the seven phases of grief, which she had studied in her master's program, and explained that these phases are not linear but rather multicyclical. Tiffany expressed interest in understanding these phases further, and Jayne clarified that they differ from the stages of grief associated with death. The conversation also touched on the topic of navigating disability in relationships and partnerships.
Jayne's Journey With Disability and Weddings
Jayne shared her personal journey of living with a disability and the challenges she faced in her relationship and wedding planning. She discussed her surgeries, the rejection of hardware, and the subsequent need for immune suppressants. Jayne also talked about her struggle with inner ableism and ageism, and how she had to accept her disability and adapt to it. She expressed regret over not enjoying her wedding day more due to her physical limitations and the lack of accessibility at the venue. Jayne emphasized the importance of healing and self-compassion in dealing with body grief and disability.
Body Grief, Community, and Healing
Jayne discussed her journey with body grief, emphasizing the importance of community and reconnecting the mind, body, and spirit. She shared her experience of writing a book on the topic, which was a three-year process, and how it was well-received by publishers. Jayne expressed her hope that the book would help people understand the need for healing and relate to the stories shared, which she believes will resonate with a wide audience.
Building Relationships Beyond in-Person
Tiffany and Jayne discussed the importance of community and how to find and build relationships, particularly for those with disabilities. Jayne shared her experiences living in an inaccessible area and how she has found community through social media, virtual relationships, and shared hobbies like painting. They also discussed the importance of not limiting relationships to in-person interactions, as virtual meetings can also be considered 'in real life'. Jayne emphasized the value of building relationships through commenting on posts, sending direct messages, and engaging in shared activities. The conversation ended with a discussion on the importance of getting out of the house and engaging in activities like going to parks and bringing music.
Grief, Joy, and Mind-Body-Spirit Connection
Jayne and Tiffany discussed the concept of grief and its connection to joy. Jayne suggested that grief and joy can coexist, as seen in moments of mourning and celebration, and emphasized the importance of grief literacy in Western culture. She also highlighted the need for people to connect their mind, body, and spirit to experience healing. Tiffany asked for clarification on the term 'mind, body, spirit', and Jayne explained it as thoughts, beliefs, and physical body. Jayne also advised someone in the fight phase of body grief to take deep breaths, validate their emotions, and find compassion for their situation.
Jayne's Journey and Disability Pride
Tiffany and Jayne discussed Jayne's personal journey and her views on disability pride. Jayne emphasized the importance of focusing on connections and memories rather than physical abilities. She also shared her recent experience of moving a mirror in her bathroom to better see her hair, which she saw as a small victory. Tiffany then asked Jayne about her book, "This is Body Grief: Making Peace with the Loss that Comes with Living in a Body," which is available in all places books are sold and also in audiobook format. Tiffany also suggested that people could request the book in different formats at their local library for free.
Transcript
12:35:55 Hi, everyone. You've got Tiffany Yu here and I guess for this episode, I am the host of diversity amplified. Sometimes we have other team members or other community members interview people. And a part of why we started DiversAbility Amplified was to be a space to
12:36:14 Kind of share the disability pride stories of our community members. And so we're actually going to be spending this time talking about grief and maybe how it coincides with pride i have Jane Mattingly here and her book, This Body is Grief.
12:36:29 Making peace with the loss that comes with living in a body is out March 18th.
12:36:35 And this episode may be before then or after then. We'll see. And she has her book displayed And I don't even know how that's going to get recorded. So I was pointing because we'll publish the video too. Both of us are newly published authors.
12:36:50 And I actually think we met because you saw that my book was coming out. Is that how we originally connected?
12:36:56 Yes, I'm really good friends with Cassidy. She and I are besties. Cassidy.
12:37:03 And… she at one point was like, oh my gosh, you have to follow Tiffany and then I was like so excited about your book coming out And then, yeah.
12:37:14 I think from there on out.
12:37:22 Yes. Yep.
12:37:16 Yeah. And I think it was, it had to be about a year ago, because I think I had just shared my pre-order link. And then I got a message from you And you had submitted the draft or were in edits
12:37:28 Yeah. Yes, I think, because gosh, it's been three years now since I three years almost to the day since I got the deal.
12:37:42 So for the book. And then, yeah, so I think I've been following you for over a year now.
12:37:50 Okay. I do want to get into that. So why don't we start? I always love starting with origin stories, however much you feel comfortable sharing.
12:37:58 Please.
12:37:58 And part of why we start with origin stories is they provide context They also provide the lens through which you are coming into this conversation. Some people are born with their disabilities. Some people acquire them.
12:38:14 Yes, of course.
12:38:09 And we don't owe anyone our stories, but it's a podcast so And you wrote a book. So yeah, would love to learn more about your origin story, whatever that means to you.
12:38:21 Yes, thank you. So yeah, my origin story is I do identify as newly disabled, which because I am. Granted, I was born with a genetic disorder.
12:38:34 Disorder, which causes my disability, Ehlers-Danlos syndrome, which I'm sure a lot of people are familiar with. Some might not be. It is the genetic illness that's called rare, but it really isn't.
12:38:50 You know, I… Once I was diagnosed with it, when I was 27 years old, everything started to make sense.
12:38:59 But to kind of narrow everything down, I identified as non-disabled, quote unquote healthy I had an eating disorder when I was not, it started when I was nine years old.
12:39:12 And it went undiagnosed until I was in my 20s. And I went and got my master's in clinical mental health counseling because I really felt passionately about mental health.
12:39:23 And representing and advocating those that were like myself and like many other, I was not marginalized, but other marginalized people that did not have access and resources to mental health care and were going undiagnosed and dismissed for their body size because eating disorders
12:39:45 Are not visible to the eye. I think right now the statistics are like 95% of people are, it's not visible to the eye.
12:39:52 And it's very, very misunderstood. So I started my business recovery loving care which is which is pretty much no longer, but I was working with people with eating disorders and body image concerns. And ironically, I would do events and I would say like work out for what your body can do, not what it looks like.
12:40:16 And little did I know how ableist that was. And then I was in a bar class when I was 27 years old, about six and a half years ago.
12:40:26 And I lost my sight completely. And the top bottom half of my body just like stopped working and went paralyzed And I was, you know, I went to the ER and about They said I was fine, which I obviously wasn't. I was dismissed many times. And it turned out I had a rare neurological disorder called intracranial hypertension. I underwent two brain surgeries and from there on out, my Ehlers-Danlos was pushed out. And I've had 19 brain and spine surgeries and a total hysterectomy in the past
12:40:58 Six years time, I'm now in a wheelchair. I have my service dog.
12:41:02 And my life has completely changed. I've really had to face my internalized ableism. I mean, look at that. Like once my body stopped doing I was like.
12:41:15 How am I supposed to love my body now? And as I worked with clients through eating disorder recovery and I started to realize, you know, this is Grief. This is, you know, we're all experiencing body grief and i came up with this term body grief and I started to talk to people from all walks of life through different ages, through all different experiences, whether that be through menopause, through aging, through gender dysphoria. And it was an experience of grieving
12:41:50 Their body and their body and that's where I came about with the book this is body grief and um Yeah, and it's been quite the experience. And I think a lot of people are like, well, what do you mean? It's, you know, you're trying to fix it. And this book is not a fix it. It's really just learning how to tap into ways to mitigate the maladaptive ways in which we grieve.
12:42:14 And it's really turned into a book about systems of oppression.
12:42:21 And… Yeah, a book about joy and gratitude, but it interviews people from all walks of life. And yeah, it's my baby.
12:42:31 Thank you. And actually, I think when I introed you, I didn't say the title of the book correctly.
12:42:35 That's okay. Yeah. This is body cream. Yes.
12:42:37 This is body grief. Although I would be excited about a book called This Body Is Grief, but the book is called This Is Body Grief.
12:42:43 Yes.
12:42:45 And Jane coined this term body grief. And one of the things, this is probably one of the things I want to say the fourth This may be the fourth conversation that we are actually having around grief with regard to a disability experience.
12:43:00 And so I talk a lot about disability grief. And so I was wondering if you could share if that phrase resonates with you and what what and dig into a little bit more about like what body grief is. Can only disabled people experience it
12:43:16 Is it different? Is it similar to it? How some of us understand disability grief.
12:43:22 Yeah, so basically body grief is truly universal. It's something that everyone experiences if you have a body.
12:43:31 And it's not something that i think I think you talk about this in your book, The Anti-Ableist Manifesto, where, you know.
12:43:39 With like lateral ableism and things like that where we, you know, it's so easy to kind of compare hierarchy of suffering and things of that nature.
12:43:47 But there's not. I think when I kind of mentioned sometimes my story, people are like, well, mine's not that bad. You know, I didn't have 19 brain surgeries and And it's like, no, no, no, no, let's not do that. Because when it comes down to grief and needs, our bodies, we were sometimes promised this life and we were given this
12:44:08 This idea of what our bodies were meant to do and we're grieving this life of what we were promised or we were grieving this life of our past life. And that is loss. That is change, that is grief.
12:44:22 And these seven phases of grief in this book are things that I've studied professionally and personally of natural phases that we go through.
12:44:33 Not phases that we will go through if you follow the book. And so I'm really like.
12:44:41 Kind of averse to like self-help at times because it can feel like almost a little capitalist, like almost like here, let me help you. Let me fix you.
12:44:54 This is instead like these are the phases that you're going to naturally go through if you're experiencing grief in your body.
12:45:00 Whether it be disability grief, whether it be aging or whatnot. So it's it's like you're going to be in dismissal and here's how it's going to look What if you used these skills and tools.
12:45:16 And you burnt out of your maladaptive tools. A little bit easier. And then you went into the next phase a little quicker.
12:45:26 And then body trust is the last phase. And then we might just dip our toe into body trust every once in a while. And then we're just going to go right back to another phase another time.
12:45:39 And so… It's not linear. It's multicyclical, and there's no fix it solution but i think it's compounded and the more we go through body grievances, the more resilient we become, which kind of sucks.
12:45:54 But it's also like it is what it is and it's life. And some of us experience more, some of us experience less. But when it comes to disability grief.
12:46:04 That is body grief. And I talk about in the book with systems of oppression, I think a lot of disability grief and a lot of body grief has to do with that because If the world were more accessible, I don't know how much body grief would be present.
12:46:24 You know, the same we talk about racial inequity. We talk about gender dysphoria, we talk about queer grief. We talk about all of these things.
12:46:32 How much of that loss of body autonomy would be present if it wasn't for systems of oppression.
12:46:41 Yeah. I'm like, which part of that do I dig into?
12:46:45 I want to talk about, what do you call them? Do you call them stages or phases of grief?
12:46:51 Couple of phases. Yeah.
12:47:02 Yes. Yes.
12:46:53 Do they um And this is me looking at Cliff Notes version of the book. We're waiting. We're waiting for my copy in the mail somewhere Do these mirror the stages of grief that some of us may understand? No, they're different?
12:47:09 Yes. So basically Kubler-Ross came out with the stages of grief and those were actually meant for the dying.
12:47:17 So, you know, which are beautiful. Those are meant for the people that are dying.
12:47:22 When you study, you know, I studied grief in my master's program And it's meant for people that are dying.
12:47:28 And unfortunately, we kind of took that on in pop culture and pop psychology as people that are, you know, living.
12:47:35 But this is kind of one of the first frameworks truly that It's for the living that are like our body is slowly dying But it's for the living. And we can say like, okay, we're grieving something that is slowly changing and decomposing.
12:47:56 If we're just going to be real about it, right? And I laugh because I have dark sense of humor and I just, you just have to.
12:48:05 So it's very different. We have dismissal, shock, apology, fault, fight, hope slash hopelessness.
12:48:15 And trust. And those are the seven phases and you can be in all of them all at once and or you can you know, it's nonlinear and it's non-linear It's kind of like this messy, beautiful process.
12:48:29 Yeah, I love that and i love that actually during the pandemic while Clubhouse, which was the social media app, was very popular We had a conversation around grief and that was the first time that At least on the grief stages
12:48:45 And I appreciate that clarity too, because I actually… in my own conversations around grief, I talk about how Well, not only in that clubhouse conversation, it was the first time to acknowledge that the stages and phases are nonlinear.
12:49:01 And at the same time. I think for me, I'd always talked about when you're talking about trust.
12:49:09 I had gone to When you're talking about the phase of trust that you come in and out of, I was talking about, I paralleled it to the stage of meaning and acceptance or acceptance and meaning that we understand through
12:49:23 Through the death grieving lens. So I'm really excited to kind of dig into that.
12:49:30 You do spend some parts of the book kind of talking about your wedding day and shifts around that and watching your body body changes. So I was wondering if you could talk and actually that is a conversation we do have
12:49:46 Within diversability a lot is kind of navigating dating finding partners? How do you talk about your How do you talk about your disabilities? And yeah, if you want to talk, just talk about talk about that and partnership and how you navigated that.
12:50:01 Gosh, yeah, that's still a huge deal. I mean, I have an inter-abled relationship because I've been with my partner, Sean, for almost 11 or 12 years.
12:50:15 And, you know, for the six years of our relationship, I was non-disabled.
12:50:22 And quote unquote, you know, healthy, whatever you want to define that as.
12:50:29 And so… Yeah, I was that typical 10 year old planning her wedding, right? Like that's who I was um And then when it came, I had just, we had a COVID wedding. And so there was that and we like uninvited half of our guests and you know, there was all of that stress. But I had also just received some serious surgeries
12:50:56 That really saved my life, but also disabled me more So some of my surgeries, I had fusion surgeries, but then it turned out I am very a very rare case where I actually had failed fusions because my body has rejected the hardware.
12:51:18 And so that has been a major body grievance for me. And I have to be on like a bunch of immune suppressants for the rest of my life. And they had to take out as much as they could. But that's been tough.
12:51:29 And so because of that, like my muscles are deteriorating and all of that and so But with COVID, a lot of the people in my life hadn't seen me disabled like visibly disabled. And it was almost like my wedding was like a coming out um and
12:51:50 I was using my, I talk about this in the book, I was using my grandma's the same type of roll letter my grandma was using. Like she called it the Cadillac of roll orders. Like, you know, everyone knows what that is, like the red roller they give you with like the big seat.
12:52:08 And that was fine. But also like my inner ableism and ageism was like, I don't want this on my wedding day. And I was still fighting that. There was a lot in me. The one phase I go into the most is fight like that is where I go. And that's when
12:52:28 If you dive into the book a little bit, you're very aware of what's happening, but like you're just kind of like.
12:52:34 F it you know like you just move forward and you overwork and you push your body too far and it's just like very non-intuitive. And it can be very harmful.
12:52:45 And that comes from my inner capitalism and just a lot of things. And I'm working on it. I've done a lot of healing but when I was, my mom actually my mom and my aunt surprised me with a really sleek roll order from Byacre that was like beautiful and, you know, matched
12:53:06 My wedding dress and it was just like very It was just beautiful. And I felt really like a beautiful bride, but also like there was this piece of me that was majorly grieving this wedding, this day that I had always dreamed of, you know, like I was not able to enjoy it. I was in so much pain the whole time. I wasn't able to even go upstairs like it wasn't an accessible venue.
12:53:35 I like there's just so much we laugh about, but I was like, I didn't even see the upstairs. Like, um.
12:53:41 And so there's a lot of it where I was like literally like hanging on my husband to dance. And then like I was sitting in my roller and there was just so many things where I'm like, now I'm looking at it and I'm like.
12:53:51 As like a person who's lived in a disabled body for years now And has really done the body grief work. There's so much stuff I would have done differently. But then I was like just this like green disabled girly who was like fighting so hard to not be disabled. And that was so sad.
12:54:11 Like that was so sad and so sad again, like… it makes me sad and a little angry because she was there was ableism there there was ableism there was But there was also just unhealed grief. What that is is unhealed body grief.
12:54:31 That is what it is and like she needed she needed just love and compassion and time, but she just didn't have it.
12:54:41 Yeah.
12:54:42 So you're talking about you've done a lot of this body grief work and now we're aware of what these phases are and we'll learn about them in the book.
12:54:50 And sometimes just the first step is the awareness. But I'm curious if you could share a little bit more of what that body grief work looks like.
12:54:59 Yeah, a big a huge part is truly allowing yourself to feel Um… to really feel the feelings in your body. I think sometimes there's like Actually, I know sometimes there's this concept especially when it comes to people when it comes to people
12:55:25 Whether it's you're disabled or you're aging or you're going through menopause or you have an injury where it's just you're hurt and you disconnect from your body. And the biggest part about the body grief process is it's connecting the mind body spirit again. And that is really painful emotionally.
12:55:46 And so a big part of these seven phases is reconnecting that.
12:55:51 Again, and a huge huge antidote to body grief is community.
12:55:59 Which is, I think right now is like more than ever is what we need.
12:56:07 I love that. I feel like I spent most of and most, a lot of my book is about community too And we heal.
12:56:15 Yeah, it is.
12:56:18 We heal, we grieve, and we heal in community.
12:56:24 Okay, I want to talk about, so you said this was a three-year process. This is my brain jumping back to the beginning.
12:56:29 Yeah, no, I love it.
12:56:30 Can you talk a little bit about, and then I want to go, and then I want to close with like the actionable stuff but This book, you said it was kind of like three years in the making I want to…
12:56:44 I want to dig into kind of what that process was like for you why did you feel like this book needed to be out in the world and And yeah, the conversations with different publishers, things like that. If you just want to share a little bit more of your publishing journey.
12:57:02 Yeah, that was wild because again, like I have this experience in the mental health field And I really had this experience in like the eating disorder and body image field and I was very much newly in this disabled chronic
12:57:17 Chronic illness space. And I write, and I'm a good writer, but that is not what I went to school for.
12:57:30 And so I, Ruby Warrington, who is an amazing author, she wrote Sober Curious and Women Without Kids. I was on her podcast and then I found out that she does book coaching and is a book doula.
12:57:45 And I spoke with her and she was like, let me help you. And so she helped me come up with like an amazing pitch and then folio lit agency signed me on and there was a ton ton of interest in the book. I think just because it's so universal that like everybody in a body is grieving, especially after the pandemic. I think
12:58:11 There's a long COVID story in this book. I think with just how individualistic this society has become and the need for community and the need for feeling our grief. Like, as you said, you guys have talked about I say you guys, I'm sorry. It's the Chicago and me. Y'all have talked about um
12:58:35 Grief four times on the podcast. You know, grief is this thing that is being talked about so much because I think we're all experiencing it.
12:58:46 And so… so many publishing houses were really interested in it and um Yeah, we went, I was actually, it was the week of my total hysterectomy that um I had like a bunch of meetings with publishing houses and then we went through like the bidding process and it was really, really life-changing.
12:59:09 And since then I've been writing the book and now it's going to be out and into the world and I'm really excited.
12:59:15 What are you hoping? Yeah, what are you hoping the impact that it will have?
12:59:21 Wow. Honestly, it's just hitting me that people are actually going to read it.
12:59:27 The impact I hope, will be that people I talk a lot about a lot about you know even if it triggers something in you, because I talk a lot about the isms and privilege and how that is you have to you have to acknowledge that in order to heal your body grief.
12:59:49 So if you feel activated by that part, that means that it's just more evidence that you need to heal, right?
12:59:58 So I hope that people understand that if you get uncomfortable, it just means that there's more healing to be done.
13:00:06 And if anything, I hope people just relate to the stories in the book because there's so many Amazing, beautiful stories in the book. Like, I can't even tell you like some of these stories will just grip your heart. I mean…
13:00:24 There's joy, there's tear jerkers. And you might not be like, I see myself in every way, but you'll be able to say, oh my goodness.
13:00:35 I see my granddaughter or I see my friend, I see my neighbor.
13:00:41 And really understand what this person's going through.
13:00:45 Yeah. We talked a little bit about the importance of community through this through all of these different phases and all the time I guess I'm curious, and I think that's one question that we get a lot from people too
13:01:01 How do you go about finding your community?
13:01:04 Yes. I'm not going to lie. It's been hard since I've become disabled. I'm from Chicago. I live in Charleston, South Carolina. I live in an area that has no sidewalks.
13:01:18 Charleston, South Carolina, even though I'm on the mayor's commission ADA board, you know, it's very inaccessible here.
13:01:25 So I don't drive because of my chronic illness and disability, you know, it's tough. So I'm not trying to make this seem like just fine community it's easy
13:01:38 Social media is a huge, huge deal for people with disabilities And, you know, who live in places like I do, where it's like that is a big deal. So I don't want to ever, ever say that virtual relationships aren't real. Like those are very, very real relationships like i said
13:02:01 Me and Cassidy have like we we FaceTime every day. Like that is a huge deal for me um Another thing is libraries are another really big one.
13:02:15 So, um. I think those like again like free resources, free communities, book clubs. I know for me, like I've taken up painting recently and like finding people that have similar play like things like that. One thing that has been a big thing that for me in healing, and I talk about this in the book as well.
13:02:40 Is finding play that doesn't have purpose and getting community through that.
13:02:46 We can find community through advocacy and things that have purpose, which I think is so great.
13:02:52 Like, let's do more of that, especially now and I think it's really wonderful to have community through things that don't have quote unquote purpose, because I think that really like What is the word? Rejuvenates our soul so that we can go out and advocate more.
13:03:13 Does that make sense?
13:03:15 Yeah, it makes me think about, I mean, I'm not a part of this community but Actually, I guess I'll share one community I'm in It's called NYC in LA.
13:03:28 Oh. It's fun.
13:03:29 And… And what'd you say?
13:03:32 That's fun.
13:03:33 Yeah, and actually the reason why I brought up that community is They were hosting an event and I found out that a bunch of people Bear had met through the dancing community.
13:03:56 Yeah.
13:03:45 And they're not, and these are not They're not hobbyists. They're like good enough that they can They're not competing. I don't know where to put them, but somewhere in between, they love dancing so much that they're out there and they know they know how to do it.
13:04:03 But yeah, I love that idea of that idea Because in many ways sometimes And potentially driven by capitalism We place worth on our work.
13:04:19 Right. And I will acknowledge, and if the work is the advocacy, right? It's.
13:04:24 Yeah.
13:04:24 What's the next thing you have a hot take on and And I remember, I think For me, especially last year it was How can I relieve myself of the burden that I need to have a hot take on everything all the time?
13:04:41 That's good.
13:04:43 But Okay, so to drill in a little more, so you said social media and virtual relationships are relationships And one thing I had to check myself on is i used to I used to say, oh, like me and this person are meeting IRL, which stands for in real life.
13:05:01 But meeting someone on a Zoom is also IRL. And so what I really mean is I'm meeting someone in person.
13:05:09 Yes.
13:05:10 And both a Zoom meeting and an in-person meeting are IRL.
13:05:15 But yeah, so say you're on social media, because I like to like really dig in How do you go about building those online friendships?
13:05:24 Honestly, commenting on someone's post, sliding into someone's DMs, I am not against any of that.
13:05:33 You know, I think that that's what I did with you.
13:05:35 You know, where I was just like, I'm a new author. I'm not against being cringy at all. I'm a typical millennial who was like.
13:05:43 Posing with my braces and, and, you know, like we went through those cringy years. So it's like, I'll be cringy.
13:05:50 And it's like, I really… Yes.
13:05:51 And they're also, yeah. And it's also not cringy too. Because… Because then we met, right?
13:05:55 Fair.
13:06:01 Yeah. I think, you know.
13:06:05 This is very much a community that is sacred to so many, you know, the disabled space and um I've had so much to learn. I still have so much to learn. And I've made a lot of mistakes and I've
13:06:21 I'm also like just so in awe of awe of this space and i I'm just, you know, I'm excited to meet new people every day, like truly authentically excited um And yeah, I think like when people introduced themselves to me or I introduced myself to others and we're like, oh, like, let's hop on a Zoom or like, let's have a coffee or let's like.
13:06:45 I'll paint sometimes or like if they, you know, enjoy cannabis and they're like oh like let's You know, smoke it or have a glass of wine together. It's like, that's really fun. You know, I experienced chronic pain on a
13:06:57 Yeah.
13:06:59 Really acute level. And so sometimes it can just be nice to sit and chat. Another thing too is like getting out of the house, you know, if you can do that, you know, and sitting again, I'm trying to think of things without money because I just don't want to like pigeonhole there. And that's what I really tried to do in the book too.
13:07:20 But going to parks and bringing music. I… you know you know I talk about so much in the book and now I'm not going to lie. It's kind of leaving me.
13:07:37 But… Yeah.
13:07:37 That's okay. It's a lot. But I wanted to close. So part of I love all those examples that you shared.
13:07:49 After we hosted our first event on grief. One thing that came out of it We hosted a diversity event talking about grief And kind of how it shows up in the disability community, one of the takeaways from it was that we wanted to launch
13:08:08 Wow.
13:08:04 A monthly series called Off the Record Real Talk, which is to kind of share some of those softer more tender moments. And we've been hosting those But I guess I am curious because whenever we think about grief.
13:08:17 It's often paired with trauma And it's often paired with sadness.
13:08:22 And so I'm wondering where joy fits into this conversation around body grief.
13:08:30 Yes, yes. Of course to spare. It occurs with grief, of course, right? It's like we think of grief, we think of sadness I think grief literacy is lacking in our Western world like no other.
13:08:49 If we look at other cultures it's almost like we get uncomfortable when we look at how they practice grief. I was an anthropology major as a bachelor's, which is people laugh about that. They're like, that's so random.
13:09:04 But I loved studying other cultures and just I thought that was so interesting.
13:09:11 And the way in which people celebrate and celebrate mourn are usually incredibly synonymous and here No, not the same.
13:09:25 But when we are in our bodies and we truly connect the mind, body, spirit.
13:09:32 That actually it when you really start to connect that, they do feel the same. Grief and gratitude.
13:09:38 It's like this elation feeling where you're mourning something, but you're also celebrating something at the same time.
13:09:46 You're mourning what you've lost and you're celebrating what you have.
13:09:50 Think about when you've lost a loved one and you're looking at photos of You know, that loved one and you're sitting around family and you're really, really feeling the feelings. You're letting your mind, body, spirit connection truly be there. You're watching the emotions pass like the weather.
13:10:09 And you're sitting there in your body and you're not numbing it with anything.
13:10:13 And you're being with your family or your friends and community.
13:10:16 You're looking at pictures and you're crying, but you're also laughing about the memories That right there is grief and gratitude in the same moment. I think that's when grief and joy are together.
13:10:32 And I talk about that a lot. And I think when we think of grief, we're scared.
13:10:38 But if we can slowly like allow ourselves and allow these emotions to seep in And maybe even weave the mind, body spirit back together. And this is not to go along with religion or to go against people's faith it's really just connecting ourselves back together. It can be really healing.
13:11:03 And when you say mind, body, spirit, like, can you dig into a little bit what that means and looks like.
13:11:09 Yes. Yeah, so truly our mind, meaning our thoughts our spirit Meaning, you know, like our values and our consciousness and our body, meaning like our actual physical body, our organs, our flesh, our blood.
13:11:30 Our spirit meaning like our our beliefs are you know our connections, who we are, our values.
13:11:41 What would you say to someone who is in the fight phase of their body grief?
13:11:49 Take a deep breath. Take a deep breath. When they're in the fight phase of body grief, their amygdala, which is fight flight freeze or fawn being hijacked by all the stress hormones in the body.
13:12:07 So take a deep breath. Take another one and another one, but also… It's okay to be fighting right now because all you want to be fighting all you want is for this not to be real.
13:12:21 That's all you want. Is it for not to be real.
13:12:24 And I would validate that this is okay, that this is normal and find compassion for wherever they are.
13:12:32 And I would ask them what they're running from. Hypothetically what they're running from.
13:12:40 You know, and what they're what they're searching for instead. You know, in that chapter, I have so many amazing stories of people really sad, heartbreaking stories but also you know triumphant stories of people fighting for something that they don't
13:12:57 You know, they're trying to look away from what really is happening with their bodies.
13:13:01 And when it comes down to it, it's you know fear of contagion sometimes when it comes to age. We look at people aging and we look away.
13:13:11 Right? Because it's like, oh, I don't want that. I don't want that.
13:13:15 Or we look at people who are sickly. And if I go out and I don't have makeup on and I'm having a really bad day. Sometimes people just like look away.
13:13:27 And it's like they don't want that because they think it's contagious you know um And so there's this fight piece.
13:13:36 So I think compassion, grounding yourself. I think that would be the first thing I would say to them.
13:13:47 Oh, good.
13:13:44 I feel like I just sat through a meditation. So when you shared a little bit about your origin story, this is my last question before we tell everyone where they can get your book.
13:13:55 Okay, great.
13:13:57 You said that you said that you used to say focus on what your body can do, not what it looks like.
13:14:05 And you acknowledge that there might be some ableist undertones underneath that, what would you say instead?
13:14:12 Today.
13:14:13 It doesn't matter if your body can do or not do. Focus on the connections you can make.
13:14:19 And… Yeah, let's focus on memories and connections.
13:14:25 I don't care if your body can do anything. Or what it looks like.
13:14:34 If we can… Oh, and what does, yeah, what does disability pride look like to you these days
13:14:41 Gosh. Honestly, it sounds so repetitive but leaning into community, really.
13:14:50 Continuing to do that and meet people and friends and meet people that get it.
13:14:56 Like really meet people that get it. Challenging my ableism every day and finding just joy in being myself.
13:15:09 Like, I was really… I was laughing very hard yesterday, but also really prideful and also like, what the heck?
13:15:17 Like I, in my bathroom, the bathroom that I use to myself um there's a mirror. We've lived in this house for almost four years and I sit in my wheelchair and do my hair and the mirror is up for a standing person.
13:15:35 And I've never been able to see the bottom of my hair.
13:15:38 And I was sitting there and I was like what like why is the mirror up there? And so I just moved the mirror down and I was like Wow, that just made a hell of a difference.
13:15:50 And I was like, what? I just moved the mirror. But like, but like The fact that that never registered, that I could just move the mirror And somewhere deep in my soul, I wonder if I was like thinking maybe one day, you know, maybe one day I can, you know.
13:16:09 Won't need the chair. Or if I was just thinking this, if it was just object permanence, I don't know.
13:16:15 But, you know, I was proud of myself for just doing that.
13:16:22 Because deep down, I don't know what that was about.
13:16:26 Yeah, or maybe you never even, I thought, I think a lot about like expansion and possibility.
13:16:33 Yeah. Right.
13:16:32 And if we've always seen a mirror there. It does take some pattern interruption to say, oh, I can just move it.
13:16:43 It's wild.
13:16:45 If people want to get your book. Where can they do that
13:16:48 Yes. All places books are sold. So you can get this is body grief making peace. This is Body Grief, Making Peace with the loss that comes with living in a Body.
13:17:00 Anywhere and all places books are sold, you can find me on Instagram at Jane Mattingly.
13:17:07 Tiktok, if it's still there, at Jane I Mattingly. Substack.
13:17:14 Jane Mattingly or this is body grief with Jane Mattingly. Janemattingly.com.
13:17:21 She can go on. And is it coming out in other formats too?
13:17:20 Just Jane Mattingly.
13:17:25 Audiobook? Yes. And it's available in all it's available uk new zealand, Australia Canada.
13:17:38 All right. So wherever your favorite book retailer is in whatever your favorite format is.
13:17:38 Yeah.
13:17:43 Make sure to go check it out. And one thing I also like to add with books too is You know, Jane mentioned find joy in things that don't cost any money. You can also request the book in different formats at your local library it's
13:17:59 Totally free to do. And I'm actually in the process of listening to my own audiobook now that I checked out from my local library.
13:18:08 Oh.
13:18:07 So that's always fun. But I appreciate you coming on. This is our first time, I think, talking In… IRL.
13:18:16 Yeah. Yeah.
13:18:19 I was like, in real life and podcasts are always such a fun way to uh to get to deep dive with people. And if there are other guests that you think we should have on whose stories you want to hear, let us know.
13:18:32 In the comments or shoot us a DM. And thank you so much, Jane, for coming on to the podcast.