Jayne Mattingly, THIS IS BODY GRIEF: Making Peace with the Loss That Comes with Living in a Body
[0:00]Hi, this is Zibi Owens, and you're listening to Totally Book to Zibi.
[0:06]Formerly, moms don't have time to read books.
[0:08]In my daily show, I interview today's latest, best-selling, buzziest, or underrated authors
[0:14]and story creators whose work I think is worth your time.
[0:18]As a bookstore owner, publisher, author, and obviously a podcaster, I get a comprehensive
[0:24]look at everything that's coming up and spend my time curating the best books so you don't
[0:29]have to.
[0:30]Stay in the know, get insider insights, and connect with guests, like I do, every single
[0:35]day.
[0:36]For more information, go to zibimedia.com and follow me on Instagram at zibi Owens.
[0:44]Jane Mattingly is the author of This Is Body Grief, making peace with the loss that comes
[0:49]with living in a body.
[0:52]Jane is a disability advocate and eating disorder recovery coach.
[0:56]She is the CEO of Recovery Love and Care, a global virtual eating disorder recovery coaching
[1:01]curriculum and training program.
[1:03]She is also the founder of the nonprofit, The End Initiative, which aims to provide inspiration,
[1:08]advocacy, resources, support, and the gifting mobility aids to those with chronic illness
[1:13]and physical disabilities.
[1:15]Jane lives in South Carolina with her husband and pets.
[1:18]Welcome, Jane.
[1:19]Thank you so much for coming on Totally Book to Zibi to talk about.
[1:22]This is Body Grief, making peace with the loss that comes with living in a body.
[1:27]Thank you so much for having me.
[1:29]My gosh, it's my pleasure.
[1:31]Thank you so much also for sharing your story in this book, naming something that here
[1:38]to floor was not named and giving sort of this way of talking about things to the many
[1:44]people out there who have gone through any sort of physical setback, disability on and
[1:52]you know, all of us are just one step away from this potentially being our lives and having
[2:01]all of this.
[2:02]And of course, as we age, everybody is giving up their bodily stuff.
[2:07]So anyway, along a long introduction to say how absolutely relevant and helpful for everybody
[2:14]on this planet, this book, it's my gosh.
[2:17]Thank you so much.
[2:18]It is.
[2:19]Body Grief is something that I really do believe is universal.
[2:21]I think that it's something that, especially now in this climate too, when we talk about
[2:25]just like also bodily autonomy wherever we are, it's something that I think we can all relate
[2:29]to.
[2:30]100%.
[2:31]Okay.
[2:32]So do you mind, I know you wrote this in the book, but tell a little bit about the story
[2:36]of your own body situation?
[2:39]Yes.
[2:40]To make a really long story short, I was once disabled, identified as a non-disabled woman
[2:47]and quote unquote, healthy person, whatever that might be, you know, and I had a lot
[2:53]of internalized ableism, you know, ableism for those that don't know is just when we really
[2:58]kind of project our, you know, beliefs of what is, you know, we might think of as
[3:06]able bodied, you know, the world is made for people who are able bodied, whether it's
[3:11]architecturally, society, and I had a lot of that in me where I just didn't know
[3:17]what being disabled really even was.
[3:20]I thought being disabled meant you were just paralyzed.
[3:23]I really never was exposed to what being disabled was.
[3:26]So I had an eating disorder when I was nine years old, it went undiagnosed.
[3:31]That's very common and I went through a recovery when I was 22.
[3:36]And so I was made it my passion, my problem into my purpose and went and got my clinical
[3:43]mental health counseling.
[3:44]So my service dog is alerting me right now, really just settle.
[3:48]So I went and got my master's in clinical mental health counseling when I was 22 years old
[3:53]and I was like, I'm going to make my problem into my purpose and I worked with eating disorders
[3:58]and I started kind of screaming from the top of my lungs at events saying, workout for
[4:03]what your body can do, workout for what your body can do, love for your body for what
[4:08]I can do.
[4:09]Little did I know how evil us that was.
[4:11]then I found myself disabled.
[4:14]I found myself in a bar class and I lost my sight and that led me down a series of brain
[4:21]surgeries and fine surgeries.
[4:23]Six years later, I've had 19 brain and spine surgeries in a total hysterectomy.
[4:28]I was diagnosed with a rare neurological disorder called intracranial hypertension and I realized
[4:35]as I was getting all of these surgeries and I was in the hospital and I was like, shoot.
[4:41]Now that my body can't do, how am I supposed to love it?
[4:46]How am I supposed to do all of this?
[4:47]And here I was telling all these people these things and that was a very ableist thing
[4:52]and I realized this is body grief.
[4:54]I'm grieving the life that I used to live.
[4:56]I'm grieving the body that I used to have and as I spoke these words to people of all
[5:01]ages, to my clients, they were like, wait, I have that too.
[5:07]I identify with this whether it was through menopause, whether it was through injury,
[5:10]whether it was through aging, whether it was through infertility, pregnancy loss and so
[5:15]I started to study it and I started to hear people's stories and then came this book.
[5:22]Wow.
[5:23]And you also not to make you catalog your medical stuff but you also might be happy to
[5:28]do whatever.
[5:29]And you have a genetic condition that you do, yes, which you need, which you've interplayed
[5:35]with that.
[5:36]Now tell everybody what your mobility is like.
[5:41]So Elor Zamos Syndrome is what I was diagnosed with that really kind of is like the primary
[5:46]diagnosis.
[5:47]EDS is a genetic illness and it's known as a rare diagnosis but really they're kind
[5:53]of saying now geneticists are saying it's the most common diagnosis that no one has ever
[5:58]heard about, which I think is a really important thing to put out there because it's a
[6:03]genetic diagnosis that we're born with but then again, I don't think people are really,
[6:08]you don't know you have it until later on in life.
[6:12]There's 14 types.
[6:13]I have hypermobile type and it's a spectrum disorder so you can be asymptomatic and then
[6:18]you can also look like me who's had all these surgeries and I'm in a wheelchair now.
[6:22]I rely on my service dog, I can no longer drive, I live in a one level household and you
[6:28]know, I was climbing mountains and skiing in Jacksonville, Wyoming and I was a dancer and taking
[6:32]spin classes, very active and now I am disabled and in a wheelchair and I live a very
[6:41]wonderful life but it looks so different.
[6:44]I mean me and my husband are now in an interabled relationship and there's so much grief
[6:49]and in this book, this is Body Grief, it talks about you know how we can live through our
[6:55]body grief and if we heal it and we work on healing it, there's joy and there's gratitude
[7:00]and if we feel our feelings, we can feel that but if we don't, then we use our maladaptive
[7:06]coping skills and you know, it might look like a needing disorder, it might look like
[7:11]addiction, it might look like you know, a lot of different things and that's what it looks
[7:16]like for me when I wasn't really, really kind of feeling the feelings naming my grief.
[7:21]Yeah, but for me, it's been a rocky ride, it's been a really bumpy ride and I want people
[7:27]to know too that it doesn't have to be like this hierarchy of suffering, you know, like
[7:33]I think sometimes people look at my story and they're like, oh, well, that's not me,
[7:37]so I don't know body grief, you know, like I haven't had an incomplete spinal cord injury,
[7:41]I don't have 19 surgeries, so that's not me.
[7:44]When like really like the common cold could even be body grief where it's like you have
[7:49]this cold and you're like, you wanted to go to your favorite concert, you know, that could
[7:54]be body grief too, that can bring up grief because you're like, why is my body betraying
[7:58]me?
[7:59]Why do I feel like this is happening to me?
[8:02]And it's like this is what happens when our bodies don't act like we thought when we
[8:07]were promised they were entitled to do so.
[8:10]Can I read a little section of the book, please?
[8:13]Because I feel like this speaks to how relationships have to change, how so much is
[8:20]impacted and this like deep-seated sort of devastation that, oh, anyway, let me read
[8:28]in whatever you can comment.
[8:30]He said, as I learned to live with my condition, I continue to find myself always apologizing
[8:35]for something, my lack of mobility, the extra space my mobility aids took up, how damn slow
[8:40]I had gotten my inability to participate in inaccessible places, my chair, my mobility
[8:46]service dog, even the time it took for me to get from the car to a restaurant.
[8:50]There was no more running to the store or hopping in the shower for me.
[8:54]I needed others to help me do the simplest things, but it just felt like too much to ask
[8:58]others to adjust on my behalf.
[9:00]And I was also very apologetic about being such a burden.
[9:03]The first time I was able to overcome this was a game changer for me.
[9:06]I had moved from Chicago to Charleston at age 25 and hadn't been home in a while.
[9:11]There were lots of reasons for this, but the changes to my body due to the brain and spine
[9:15]surgeries I had undergone, coupled with the restrictions of the pandemic, made it much
[9:18]harder to travel.
[9:20]This was heartbreaking, and my mom coming to visit me regularly felt like the only option
[9:23]we had.
[9:24]It was on one of these trips that she asked if I would be home that summer.
[9:27]I froze.
[9:28]We were sitting in the sun on my back porch.
[9:30]I didn't want to hurt her feelings, but I knew that I had to be honest.
[9:34]I want more than anything to come home and visit mom, I told her.
[9:37]My eyes starting to well up with tears.
[9:38]I tilted my head back so they wouldn't fall down my cheeks, but the house is not accessible.
[9:43]I can't walk up and down the stairs, it's just too dangerous, and I know it worries
[9:47]you all too.
[9:48]I expected her to be hurt or even get defensive.
[9:50]I didn't want to inconvenience my family or be a burden on them, but instead she replied
[9:54]immediately, well, maybe we should get a stair lift.
[9:57]My eyes lit up, I couldn't believe that I was hearing.
[10:00]Really? He would do that. Oh. Oh my gosh. First of all, it's surreal to hear you read this to
[10:09]me because the book, you know, is still not out yet. So, I'm to hear, like, Zippy Owens
[10:13]read that as wild. But that is the thing about body grief is that it's continual. It's
[10:23]multi-cyclical and it never is grieved, right? Like, that is one thing I kind of drive home in
[10:30]the book. And so, I even kind of tear up hearing that because as we have our new grievances and as we,
[10:38]you know, name our new grievances, we kind of always continue to go through it. It's just we, you know,
[10:45]with hindsight, continue to compound what we learned. And just a couple days ago, I was there,
[10:50]I was at apology. And so, you read that. And I'm like, oh my god, I was doing that again, you know,
[10:57]but I learned from it. And I build on my body trust. And then I kind of catch myself in it. And I'm
[11:02]like, you know what, here I am again, here I am again, here I am again. And I do my breathing and I take
[11:08]my skills and I learn from it. And I get through my phases a little bit quicker. And that's what
[11:15]this whole framework is about. But oh my gosh, it sucks. It just sucks. And what the reality is,
[11:24]is I think like we need to talk about how it kind of sucks living in a body sometimes.
[11:30]You know, it felt like another alternative, right? Like, it just, I mean, I think the pandemic taught us
[11:39]that. I think, you know, I would assume being a mother has taught so many people that,
[11:45]but it's also beautiful. You know, I, I think mental illness teaches us that. You know,
[11:51]where it's just like, I want out, I want out. You know, there's, you know, a couple days ago,
[11:57]I was in the ER. And I was like, I have in the book here, one of the skills is to throw a tantrum,
[12:02]to just throw a tantrum. Because when did we stop doing that when society told us we couldn't?
[12:10]And, you know, it's, it's a regulated tantrum, you know, not in a public space, you know,
[12:15]when you're open to get with a kid, you know, and I did. I threw one in the car and my husband was
[12:20]like, just do it, you know, but I was so angry because I was like, why? Why is this happening again and
[12:26]again again? And it allows me to get out of these places where I'm just constantly apologizing or
[12:31]because that's not a healthy way for your brain to just go there to apologize for taking up space
[12:37]that you will always be taking up. Well, it also did not happen that long ago. I mean, this wasn't
[12:43]something that you had as a child and now you're fully grown. Like, this was in the last, what,
[12:48]eight years, six years. I mean, six years, six to the half years. So most, I mean, when you think about
[12:54]grief over losing someone for any other types of grief, right? They're not gone within
[13:01]six and a half years. Like, you're so disgusting. And the anger is something that comes with all
[13:07]of it, right? Because when things aren't fair, it's it's accurate. You know, you how can you not get
[13:13]angry? It's not fair. Exactly. Yeah. Exactly. Yeah. It's not fair. And then I think there's this like
[13:19]cognitive dissonance in this because also being a part of the disability community is a beautiful
[13:26]thing too. Of course. I'm sure. Yes. And so then there's this piece where it's like, oh my gosh,
[13:31]this community is so beautiful. And the more I use my mobility aids, I'm able to actually be more
[13:37]independent. And this is amazing and beautiful. And I miss my old life. Yeah. And so that's tough.
[13:47]That's tough. And there's truth to all of it. I think it's that's when it's like it's both
[13:52]and and you know, as I lean into community and community truly is the antidote to body grief.
[13:59]It really is because as I lean into community, I feel like I'm embraced and I feel like I can learn
[14:06]and I can become just like a student of it all, right? And I can, you know, learn from people that
[14:12]have been disabled their whole life, right? Or even like with my hysterectomy journey and I went
[14:17]through surgical menopause, you know, and I can learn from people that, you know, are older than me
[14:22]that have been through menopause, right? And just be like, okay, I can lean into this too. But then
[14:28]there's also grief being like, why am I going through menopause in my 30s? And then there's the anger
[14:35]again, right? So what made you take all of this and write a book about it? Well, I think I realized
[14:43]a huge as I saw a big sigh. I'm so proud of it. And a huge reason was when I was working with the
[14:51]eating with the eating disorder community so much of recovery of body image and eating disorders
[14:57]is body grief. So much of that is body grief. And that's, you know, a niche community, but also
[15:04]so many people struggle with disordered eating and body image. I don't know one person in this
[15:09]world that doesn't struggle with their bodies or dieting. And that population in itself is struggling
[15:16]with grief of being like, I miss how my body used to be. I miss the life I was once promised.
[15:25]And I was like, this needs to be written about. And then I also started to talk to people
[15:32]in the chronic illness community with autoimmune. And they and disability and one of the main themes
[15:42]and one of the biggest reasons I wrote this book was I wanted a book that people could take into
[15:48]therapy. And I hope this reaches people because when people talk about despair and hopelessness,
[15:56]I've talked to so many people saying they're scared to talk to their therapists because
[16:03]they're scared to use language like I'm feeling hopeless. I'm feeling fearful that I don't
[16:10]want to wake up in the morning. But that is an everyday experience for someone who is experiencing
[16:17]body grief. It doesn't mean that they're actively wanting to end their life. It just means that
[16:24]they want to be hurt. And so I was writing a book like this so that professionals and clients could
[16:31]sit down and have a real conversation about it without fearful that they would need to be committed
[16:38]or go to a higher level of care. And because I worked in that in that field. And then as I started
[16:46]writing the book, I was like, wait, this is so much bigger than just like the clinical world.
[16:50]This is everybody. And so in the book, there's gender dysphoria and there's racial inequity.
[16:57]And it really became like a book about systems of oppression and so much, there's puberty.
[17:06]And I have a story in there about my dad. There's injury. And so it became a lot bigger than I
[17:14]realized it would be interesting. And was it therapeutic for you? I know you did it as a sort of
[17:20]a mitzvah for others, but was it? It was. It really was because it was my first book. And to
[17:26]have penguin, you know, take this was a huge deal. But it was really magical. Like the whole
[17:32]experience was so magical. I would keep saying that. And you know, my husband would come home and
[17:37]be like, all right, well, version of Jane, am I getting today? Because she's probably grieving
[17:41]all another part of the story. But I learned to be able to kind of set boundaries with that,
[17:50]leave it on the porch. I'd write it on my porch in Charleston and then kind of separate that
[17:55]because I was reliving everything that I was going through. But yeah, I think one other thing too
[18:01]is that grief and gratitude go together. They are symbiotic, just like hope and hopelessness.
[18:07]They can't exist without the other. Yeah, I love that. Oh my gosh. This is a totally irrelevant
[18:14]question. But for anyone listening, Jane has like the best hair I've ever seen.
[18:20]How tell me about your hair? What are we using? What a hair dryer. I'm looking at these like
[18:28]cascading waves like all the fair or something. Well, okay, I am genetically, I was given
[18:36]amazing hair. And I always make the joke. Like, I was found, I think God I was given genetically
[18:42]something good. Because the rest wasn't so great. And my parents always like rolling their eyes
[18:50]at that joke because they're like, this isn't funny. But yeah, my mom has like the best hair.
[18:56]Her dad passed with like a full head of beautiful hair. So genetically, we were blessed with hair.
[19:03]But I think it's really just genetics. I hate to say that satin pillowcases are the way to go.
[19:11]And I like douse my hair and conditioner, like this much conditioner, like up two handfuls.
[19:19]Okay. Well, yeah, I had to talk about the superficial. I mean, we are talking about our buddies.
[19:25]They had the good and I mean, I am the lure behind my hair goes so far back. My mother is like,
[19:32]I think it actually, some people are like, I remember once my therapist was like,
[19:36]I would like to go into this a little bit more. And I was like, please don't, please like,
[19:40]let me just, can I just keep this as like a nice, sweet memory? Because my mom stood,
[19:45]curl our hair every morning. Like even when we were like three years old. And she's like,
[19:49]I would like to delve in deeper. And I was like, let's not.
[19:53]I was like, I have an eating disorder. I have chronic illness. Like, I would like to keep this.
[20:00]But thank you for that.
[20:04]Sure.
[20:05]You know, one part of the book you were talking about, you know, with your body and that
[20:09]you could be grieving, that it's, you know, that your illness can make you gain weight
[20:14]or lose weight and you feel out of control and they're all these spiraling things and
[20:18]what do you do?
[20:19]And all of your references, of course, to eating disorders and all of that, where do
[20:23]you fall on the fact like having body acceptance for weight in the middle of body functionality
[20:33]and all the rest.
[20:34]It's not like you can take it away.
[20:36]Right.
[20:37]So there's this, you know, body positivity and body acceptance and body neutrality and all
[20:44]the things with all these movements, right?
[20:47]Body positivity was a movement in the 1980s actually.
[20:50]That was made by Black and BIPOC women, fat women who were also disabled and it was actually
[20:59]kind of like co-opted by white women in like the 2000s.
[21:03]And so which tends to happen, right?
[21:05]Like white women do that.
[21:06]So we kind of took it over and we were like body positive and I actually didn't know about
[21:11]that until like a couple years into my Instagram journey and then I was like, oh, we did
[21:17]this.
[21:19]So being positive about your body, I think is wonderful.
[21:24]Being neutral about your body, I think is great.
[21:27]But I think is actually kind of unattainable for some people, right?
[21:32]I think being accepting of your body is also great, but it's a little unattainable, right?
[21:37]Because look, if some of us can't like use our bodies, if some of us are grieving our
[21:44]bodies and can't, you know, are constantly losing our abilities.
[21:50]If we're always sick or if we're, you know, just constantly in the grieving cycle of something,
[21:56]it's very hard to be like, just be neutral about it, you know, just love your body.
[22:03]So I think it's okay to say like, I'm working on healing.
[22:07]I'm working on, you know, I'm in grief, but I'm working on healing.
[22:12]And I dip my toe into body trust whenever I can.
[22:16]And I think that's the most realistic way we can go about it.
[22:19]I don't think it's, you know, I applaud anyone that is anywhere else.
[22:24]But for me, having been through over a decade of recovery, I can positively say that
[22:29]I am in recovery.
[22:30]I'm recovered and, you know, I also have all of these other ailments and, you know, there's
[22:39]some days where I literally can't walk and it's incredibly hard to eat and my body rejects
[22:44]food.
[22:45]And so I got to trust my body.
[22:47]I have to nourish my body.
[22:48]I have to water my body.
[22:50]And it's also hard AF.
[22:52]So it's just a constant process.
[22:56]When I, you know, was talking about this book with Penguin, I was like, the thing with self
[23:01]health that's so hard is, you know, in the publishing world, they want like kind of a
[23:05]fix it at the end.
[23:06]I was like, this isn't going to be that.
[23:09]You know, this isn't going to be a band-aid, grieved situation.
[23:13]And that's what I loved about them is that they're like, that's okay.
[23:16]That's more just realistic.
[23:19]This is just a constant process.
[23:20]It's non-linear and cyclical.
[23:22]Well, how great to have you as this stunning ambassador for, you know, because, you know,
[23:30]you get people to pay attention, right?
[23:32]Thank you.
[23:33]I mean, your words are stunning.
[23:35]The whole thing.
[23:37]No, it's great.
[23:38]And it's great that you have developed this whole platform on Instagram and that you have
[23:43]your community behind you and, and that you're sharing like the ups and the downs and
[23:48]that they're good days and bad days.
[23:50]And yes, it's not all just behind this curtain and, you know, it's okay.
[23:56]And like, it should be known and watched and understood because it's so important.
[24:01]Yeah, it's just kind of everyday is different, right?
[24:03]Yeah.
[24:04]Yeah.
[24:06]And sometimes it just sucks.
[24:08]But even then, like, we can have our good moments, you know, I romanticize every little
[24:13]bit of my life.
[24:14]So, you know, like yesterday, I mean, we were having some, you know, issues after a
[24:21]colonoscopy and then we went to the ER because the doctors that we had to.
[24:27]And of course, like the hottest doctor came in to the ER.
[24:32]And he walked out of the room and my husband was like, oh my God.
[24:36]No, I don't know if you watch modern, I don't know if you watch modern family, but he
[24:42]was like, this is like, Cam and Mitch with the hot fire fighters.
[24:44]And I was like, are you, can't worry about it.
[24:49]So like, it was the worst day we waited seven hours in the ER after a colonoscopy.
[24:53]And then we were laughing, you know, like, you just have to make a work like this.
[24:58]Jane, thank you so much.
[25:00]Thank you for this body grief, thank you for coming on today.
[25:05]And yeah, it's been just such a pleasure.
[25:07]So thank you.
[25:08]Thank you.
[25:09]I appreciate it.
[25:10]Okay.
[25:11]All right.
[25:12]Best of luck with everything.
[25:13]Thank you.
[25:14]Okay.
[25:15]All right.
[25:16]Take care.
[25:17]Bye.
[25:18]Bye.
[25:19]Bye.
[25:20]Thank you for listening to totally booked with Zibi.
[25:21]Formerly, moms don't have time to read books.
[25:22]If you loved the show, tell a friend, leave a review, follow me on Instagram at Zibi Owens
[25:27]and spread the word.
[25:29]Thank you so much.
[25:30]Oh, and bye the books.