Reframing Joyful Movement for Limited Mobility

Transcript

Ellie Pike:
Our bodies are capable of extraordinary things. Even mundane tasks, like picking up a plate or taking a pet for a walk, are moments of magic. Just think about it. Anytime you move, your mind issues an unspoken request, and then your body just springs into motion. It happens so fast that we are often unaware of all that's required to pull it off. That is, if you're able-bodied.

Jayne Mattingly:
In our society we talk a lot about isms. We have racism, sexism. But ableism was one thing I wasn't ever aware of. And that's because of ableism. I wasn't aware of it because of the privilege I had in my very able body, until it became not abled.

Ellie Pike:
Meet Jayne Mattingly.

Jayne Mattingly:
Hi, my name is Jayne Mattingly. I'm the CEO of Recovery Love and Care where I train eating disorder professionals to work with eating disorders and the intersectionality within it. I, myself, am recovered, and I live within a disabled body. And I talk a lot about disability and how that intersects with recovery. I also have my master's in clinical mental health counseling, worked as a therapist for a while, and now I'm in more of an education coaching field.

Ellie Pike:
Four years ago, Jayne found out that something was seriously wrong with her health, meaning that, for the rest of her life, her ability levels would continue to decline. As a former dancer and self-described "doer," this news was devastating. And it forced Jayne to ask, "What now? How do I find joy when I can't do what I love?" Today, we'll talk to Jayne about shifting the relationship with her body, from feelings of anger and betrayal, to a place where gratitude can exist alongside grief.

Ellie Pike:
She'll reveal a few of her best strategies for living a value-centered life, while also grappling with her own ableism and chronic illness. You are listening to Mental Note Podcast. I'm Ellie Pike.

Ellie Pike:
Years before learning of her chronic illness, Jayne embarked on an entirely different journey: recovery from anorexia.

Jayne Mattingly:
I would say my eating disorder started when I was 10 years old. I went through puberty when I was 10. That early onset of puberty is usually a pretty strong indicator of having disordered eating or eating disorders. You become body-conscious at such a young age. And that was definitely the case for me. I was incredibly body-conscious, incredibly aware of my body and other bodies around me. Not just how it looked, but how it felt. How I felt in my body. And how my body worked and the inner workings of my body.

Jayne Mattingly:
And I started to micromanage that. And it became an eating disorder quite quickly, as we know that it can happen. I became a dancer. It was my true passion. And now, again, as we know, dance is another risky thing. It's very subjective. It's very much focused on the body. It's very much focused on that singular object of you, not as a team. And so, I was diagnosed with anorexia with purge subtype.

Ellie Pike:
Once Jayne and her treatment team began to find ways out of the eating disorder, they gradually reintroduced joyful movement as an alternative to compulsive exercise. This shift gave Jayne a key insight that cemented her recovery journey.

Jayne Mattingly:
I was constantly repeating the phrase and sentiment and affirmation of, "Love my body for what it can do, not for what it looks like." I even used that in my advocacy, in my events. It was kind of my slogan. And ironically, my body stopped doing. About four years ago almost, I ended up in the ER multiple times. And I was admitted to the hospital finally, and was diagnosed with intracranial hypertension, which is a pseudo brain tumor.

Jayne Mattingly:
I started to go blind, and my life just totally stopped. I was in my mid to late twenties. And I was working five jobs. And I thought I had everything figured out. And then I didn't. And my body actually stopped doing. And so, since then, I've undergone 14 surgeries on my spine and brain. I'm in a wheelchair. I have a genetic connective tissue disorder, Ehlers-Danlos syndrome. It's a very complex disorder, and it manifests in a whole spectrum of ways. There's 13 different types, and some people are asymptomatic, some aren't. You're born with it. Mine didn't really show up acutely until I had my intracranial hypertension. And they think it really pushed it out. And things just started to rapidly go downhill.

Ellie Pike:
You have such an incredible story of resilience. And even as I hear your story, I just cannot believe how much your recovery had evolved over time, where you were able to be in your body, use it mindfully, not abuse your body. And then to feel, I imagine, betrayed by your body, when your body just literally stopped working the way that you were used to. Can you talk a little bit about that feeling and your emotions behind that?

Jayne Mattingly:
Absolutely. You say, "Betrayed by your body." This concept of body betrayal is talked about a lot. It's talked about in eating disorder recovery. It's talked about in the chronic illness community. And there was one time where I was sitting in the hospital, and I felt that, deep down. Oh my God, I'm angry. My body's betraying me. And I was so angry.

Jayne Mattingly:
It hit me. The sentiment that I had learned in my treatment, that your body's just always fighting to find a homeostasis. Your body's always just doing its best to keep you alive. And I sat there in my hospital bed, and I was, how is this any different? My body's doing everything it can to keep me alive. It just really sucks, and it hurts. It's painful, and I don't like it. But I wouldn't call it "body betrayal." I would call it "perceived body betrayal."

Jayne Mattingly:
I have this perception that it's hurting me, but it's not. And since then, I've really interwoven that into my work with clients, with professionals, trainees, and really myself. Because if I carry that anger towards my body, I won't live a peaceful life.

Ellie Pike:
Jayne's shift in understanding from "My body is betraying me" to, "I may feel like my body is betraying me, but it's actually doing everything it can to keep me alive," was huge. It also changed how she treated her body in everyday life.

Jayne Mattingly:
Everyone who's had an eating disorder knows that it's quite easy to blame it on your body. And it's really easy to use behaviors towards your body to punish it. So, even when my body isn't working, when it hurts, when it feels as it's betraying me, it is my responsibility to feed it, to be kind to it, to listen to it intuitively, rest, give it medicine, physical therapy, whatever it needs.

Jayne Mattingly:
This concept of perceived body betrayal is not just towards people with maybe this tragic story or people with chronic illness. I think it's mothers. I think it's when people weight restore, when people are sick with a cold. Again, our body isn't doing anything against us. It just feels that way because of the bias we have towards those feelings.

Ellie Pike:
Part of learning to treat your body kindly and listen to its needs is learning how to move it in a way that brings joy and vitality while also making space for rest and healing. To talk with us about mindful movement for different ability levels, I reached out to Katherine Johnson, the nutrition director of the east region of Eating Recovery Center.

Speaker 3:
I think that the first thing to think about is, okay, what is it that I enjoy? Are there things that I can do, maybe with friends or family? And also, taking away, maybe, that myth, that in order for it to count as exercise or activity that, "I must be sweating or it must be painful to a certain extent," or, "I've got to go a certain distance," or, "I have to burn a certain amount of calories," because that, to me, is taking out the mindfulness of it.

Speaker 3:
So, it could be even something of, "You know what? I'd like to learn to play an instrument" because that is something that requires a lot of energy. You're using your diaphragm a lot.

Speaker 3:
Even when I suggest that to patients, sometimes they're, "Okay, you're crazy. Why are you talking to me about music? We were actually just talking about activity." But it's something that's fun. It could even be saying, "I would like to explore the city, a little bit, that I live in. I'm committing myself to being a tourist in the town that I live in," because that requires you to get out of the house a little bit. It could be saying, "I'm going to show up and be, maybe, a little bit more present of an aunt and or an uncle. And that means, I'm going to babysit. I'm going to play. Going to do a lot of water balloon fights this summer because it's super, super hot." But you are just moving around a lot, and you're thinking more like play, as opposed to exercise that is painful.

Speaker 3:
I think it requires a lot of thinking outside of the box and willing to do things that are different, as opposed to, "I must do the same every single day." So, how can I be more mindful? How can I make it fun? And I think if it's something that is fun, you're probably more likely to incorporate it in a way that allows you to take rest when you need rest.

Ellie Pike:
For Jane, learning to move and listen to her body's cues has been critical in finding stability.

Jayne Mattingly:
I really thought, again, I had this body image, this body awareness piece under wraps. I think I was, "Okay, I've gone through recovery. I'm good. I'm not going to have to deal with this again." And I just don't think that's true for anyone. I think it's a constant journey, and there's no destination. Do I think everyone's going to end up like me? No. I hope not.

Jayne Mattingly:
But I think, if anything, my journey and all of these hardships and diagnoses and surgeries have really opened my eyes to the fact that my body was telling me something for a long time. I had serious instability in my spine. And a lot of the surgeries included putting metal into my spine; my brain stents, [inaudible 00:13:25] closures in my groin, all the things. And then, we have now found out that I am acutely allergic to metal.

Jayne Mattingly:
So, throughout those four years, my body was giving me a lot of signals that it wasn't liking what we were doing to it. Now we look back. A lot of my fusions failed. So, now we're in the process of figuring all that out. But it's, wow. Here I thought I was so aware, and I was so in tune. But now, I'm, "Okay, body. I hear you. We're doing everything we can to calm you down." And I've apologized to her a lot, to my body. I'm saying, "I'm sorry I missed these cues." It's just so easy to just go, go, go and not listen.

Ellie Pike:
I really like what you just said about talking to your body. And I think a lot of us can sometimes feel really separate from our bodies. And recognizing that we're on the same team can really help us align and live more peacefully within our own bodies. And so, I like how you even express that apology to your body. Because we're not always kind to ourselves.

Jayne Mattingly:
No.

Ellie Pike:
And-

Jayne Mattingly:
We're not.

Ellie Pike:
What advice do you have for other people who are working on body acceptance, body awareness? And maybe "body acceptance" isn't the right word. Maybe sometimes it's "body neutrality," just not hating what our body's doing. What advice do you have for others who might be on that journey?

Jayne Mattingly:
I think one of the biggest pieces is understanding and reminding yourself it's never a destination. It's a constant journey, and it will evolve, and it will change. And you will always, at some point, have to go back and reevaluate your relationship with ableism. With that phobia, your fear of your body changing.

Jayne Mattingly:
I think the wellness culture and diet culture has really sold this myth that we have control over our bodies. But we don't. The human body is so fragile. And I think we take that for granted every day. No one's immune to getting sick or becoming disabled, no matter how you feed yourself, how many CBD or kale smoothies you have. You can still get sick. You can still become disabled.

Ellie Pike:
I'd love to take a moment just to talk about what ableism is, because this is not a word that we use in everyday culture. And yet, it's something that I would argue all of us, maybe 99%.

Jayne Mattingly:
I would say everyone, yeah.

Ellie Pike:
Right. We're all affected by this. And I can admit that I'm certainly an ableist. After my first conversation with you, I walked away and I was, "Oh my gosh, I've been walking through the world not seeing the full picture." And I felt so terrible. I know that was not how you wanted me to feel. Right?

Jayne Mattingly:
No.

Ellie Pike:
But I've had some moments of being, "Oh, wow. I haven't even noticed how the world is not set up for those with bodies that are disabled."

Jayne Mattingly:
Yeah.

Ellie Pike:
So, can you talk a little bit about what ableism is?

Jayne Mattingly:
Oh gosh. Yes. And let me just preface this with, I am incredibly ableist. Okay? I come from a place that I truly thought, and I'm still fighting it, I truly thought that to be disabled, you had to be paralyzed and in a wheelchair. I was so privileged in my life that I never had to think about that. I never had to think about people who weren't able.

Jayne Mattingly:
And then, when this started to happen, I fought it. And I fought it hard. God, I went against everything I ever learned about body compassion. And I would be in the hospital, and then I'd be at a workout class the next day, because I was trying to prove to myself that I could be what I deemed as worthy. And I was, "Well, I have to go to the grocery store, and I have to do these things. I have to climb up these stairs, and I have to go... Because that makes me worthy; that makes me human." And that is ableism, is saying that our bodies and our physical body and our abilities are worth. I'm learning so much.

Jayne Mattingly:
From accessibility, like ramps and wide-enough doorways and toilet paper that you can reach and sinks that you can reach to tables that you can sit at, if you're in a wheelchair or if you're in a rollator, or whatever it is, to places not understanding what a service dog is, under the ADA guidelines, to honestly, just language. To saying someone's "wheelchair-bound." I used to say that. And now that I'm in a wheelchair, I'm, "I'm not bound. I'm not bound to-

Ellie Pike:
"I can get out of my wheelchair."

Jayne Mattingly:
Yes. Everyone can get out of their wheelchair. And also, my life up, until I had mobility aids in it, because I fought that so much... "Oh, I can't use a mobility aid. I'm not disabled enough. I'm not sick enough," which I'm sure sounds very familiar to a lot of people listening. My life became so much bigger once I was able to use tools to go places. So this wheelchair, I'm not bound to anything. It actually makes my life so much bigger. And I could get outside. And I can go places. And I can be independent. And so, it's a lot of reframing.

Jayne Mattingly:
But I think this ableism is just how we view the world. And is it accessible to everyone? And it's not? Just little predicaments, even; I'm thinking about going home to Chicago, and I'm, "Oh God, can I get up my household stairs that I was raised in? I don't know if I can." And so, there's these little grading points of being, "Wow, this is how inaccessible our world is. And it doesn't really hit us until it has to.

Ellie Pike:
Sure. And I feel for you in that. I imagine that is a process of grief.

Jayne Mattingly:
Yes.

Ellie Pike:
And I imagine that it's always reoccurring, where you experience microaggressions and people not knowing how to talk about your disabilities or anyone else's around you. Or watching TV that's not reflective of an inclusive world. Right?

Jayne Mattingly:
Yeah.

Ellie Pike:
One thing I really liked what you talked about was how intertwined worth and ability have felt for you. And I know you've been in a process of detangling those. Can you speak to where you are in that process right now?

Jayne Mattingly:
Yeah. Rest is something that I didn't correlate with ability and worth. And so, rest, I realize now, is everything my body needs. And I have to heal. And it's hard. It's harder than any movement ever was for me. And so, that's one way in which I'm really healing my sense of worth. I'm going to therapy every week. My husband and I are in therapy together because this has affected so much of our lives together.

Jayne Mattingly:
And for me, it's also figuring out adaptive ways in which I can do more things. Again, I always talk about living your "and" life. So, I can be sick and CEO. I can be disabled and thriving. My mobility service dog and I can now go for walks on the greenway, here in Charleston, with my wheelchair. That's a sense of movement for me.

Jayne Mattingly:
Tai Chi, physical therapy. That's all about neurofeedback. And it's little, teeny tiny movements that look like nothing. That these are the things that I think I've really redefined as, "Okay, this is what I'm doing now." And not just in physical abilities, but mental capacity has been a big thing for me too. I was seeing clients, 20 clients a week, in a recovery coaching business. And I just couldn't anymore. It was one of those things that I had to say goodbye to. And I think that really broke me down. It didn't break me, but it broke me down. Because that's something I really prided myself on.

Jayne Mattingly:
And then again, I just was, "You know what? I can change others' perspectives and help change the world through a different lens. And I can train professionals and do advocacy work." And I'm starting up this non-for-profit and things like that, that I can touch the world in that way. And that's where I feel purpose comes in, and passion. Because for me, I have to be moving towards something, even if I'm resting. So, if that's towards a passion or towards purpose, then I find value and worth in that.

Ellie Pike:
Jane, what are some of those skills and tools that you would recommend to anyone who might be experiencing body grief?

Jayne Mattingly:
I would say one of the biggest things would be compassion. Rest. And for me, it has been gratitudes. That's where I find my "and," in a lot of ways. I don't practice gratitudes in regards to toxic positivity. I don't think that's helpful, of saying, "At least I have this. At least I have that." I think Bene Brown says, "No empathetic statement start starts with, 'At least.'" And that goes to how we talk to ourselves as well.

Jayne Mattingly:
But in regards to, "I am so grateful for the coffee I am drinking right now, to keep me awake to enjoy this day. I am so grateful for my back porch." Little things that are also really big to other people in this world. I am so incredibly grateful for my mobility aids and for my family and the unconditional love I feel. I run through my gratitudes almost like a prayer. I'm not spiritual in regards to organized religion, but I'm very spiritual in regards to that and that I have routines and rituals that I really, really deem sacred. And I would say gratitude practice is one of the biggest ones for me.

Ellie Pike:
As I've done this interview with you, I really see this... I imagine a balance where you are a scale, where you're able, on one side, to say, "This really sucks, and this is really hard" and feel all the feelings and validate your personal experience. And on the other side, it seems like you're really creating that balance of still practicing, "This really sucks, and I can be angry at my body today, and I'm going to be grateful that I can do these things or that I have the help that I need or that I have my back porch or the sunshine." And that, to me, of holding both in tandem, I think it can be very uncomfortable. For you, I'm sure. But also for other people. Other people can feel that push and pull of wanting only one or only the other. And balancing that acknowledgement and empathy and compassion is incredible.

Jayne Mattingly:
Thank you. I think there's a lot to be said for feeling your feelings and being in it and allowing yourself to grieve. And finding that balance on that scale is really hard, but it's so important. Because for me at least, if I'm in my feelings for too long, and I start to feel bad for myself, and I start to dismiss my needs, that's dangerous. That's a really dangerous place to go. And I've found that there's a lot of spaces online that are so wonderful and positive. And there's a lot of spaces that are so not, where I think the intention is to really pull in and build a community. And then what happens is, it's just a form of complaining. And that's actually, what got me out of it, is I was, "Oh, I'm going to go into these forums of people that have the same experiences as me."

Jayne Mattingly:
And I was, "I feel even worse now. This has just so doom and gloom." And I realized through, again, my work in recovery that I needed to look at the "and." And I needed to say, "Okay, from a positive place within me, it could always be worse. But also, I have so much good. And it doesn't outweigh the bad, but I can live with both simultaneously and find peace in the present." And that might be crying one morning and then laughing on the porch with my friends at night. It can be both. And I think that's, again, a lesson learned in recovery that really brought me here.

Ellie Pike:
You've done so much. And I know you've discussed a little bit about your work and yourself as an advocate. Can you share a little bit about how people could follow along with you, learn more, and also start to learn more about ableism and awareness in that area?

Jayne Mattingly:
Yeah. Recovery Love and Care, on Instagram, is my account where I talk all things body image, recovery, body grief. I talk about my service dog and disability. That's what you can expect. And then, the website Recovery Loving Care has more about my RLC University coaching curriculum, as well as where, if you need a recovery coach, you can go there, with some amazing ethical, well-trained recovery coaches that stay in their scope of care. It's something that's really, really important to us.

Jayne Mattingly:
And I am in the process of writing a book. So, that will be, probably, in the making in the next couple years, in regards to body grief. And I think everyone experiences body grief on a universal level on some aspect of their life. And then I also, my baby right now is the And Initiative. It's a not-for-profit where we gift, those with physical disabilities, mobility aids. You can go apply at the andinitiative.com. And there's also some social aspects to that too, where we will be doing events and helping people understand how to thrive with physical disabilities rather than just survive. So yeah, that's where you can find me.

Ellie Pike:
Fantastic. Well, I will keep following along, and we'll definitely link to those accounts and websites in the show notes. So, anyone who's interested in learning more about Jane, please check her out. She is highly influential and just shares hope at all times. So thank you so much, Jane.

Jayne Mattingly:
Thank you.

Ellie Pike:
There's no way to sugarcoat loss. It's a wrenching and draining experience, especially when compounded by ableism and a lack of understanding. Yet, we also have the ability to simultaneously practice gratitude and pursue a life of meaning. So, whether you're experiencing a temporary or permanent loss of mobility, I encourage you to connect with Jane and her multiple projects.

Ellie Pike:
As a reminder, those are Recovery Love and Care for body-positive eating disorder resources, the And Initiative, a nonprofit that gifts mobility aids to people with physical disabilities or chronic illnesses. Or you can follow her on social media for small reminders on how to shift your mindset every day. You can find her on Instagram at @recoveryloveandcare.

Ellie Pike:
Mental Note Podcast is brought to you by Eating Recovery Center and Pathlight Mood and Anxiety Center. If you'd like to talk to a trained therapist to see if in person or virtual treatment is right for you, please call them at (877) 850-7199. If you're looking for a free support group, our sponsors offer a wide variety. Check them out at eatingrecovery.com/support-groups or pathlightbh.com/support-groups.

Ellie Pike:
If you like our show, sign up for our e-newsletter and learn more about the people we interview at mentalnotepodcast.com. We'd also love it if you left us a review on iTunes. It helps others find our podcast. Mental Note is produced and hosted by me, Ellie Pike, and directed and edited by Sam Pike. 'Til next time.