Access For All: Overcoming Trauma And Loss Within The Physically Disabled Communities

In this episode, we’re joined by Kelsey Ledezma and Orion Queer as we discuss overcoming  trauma and loss within the physically disabled communities.

The Access For All Podcast Series aims to explore a variety of topics related to the intersection of Deaf, Hard of Hearing, Blind, Partially sighted, visually impaired and physically disabled individuals lives as it relates to mental health, well-being and the accessing of mental health services.

The Access For All podcast series is meant to create awareness, reduce stigma, educate and create opportunity for discussion around issues related to the intersection of physical disability and mental health. Through sharing personal stories, challenges, and strengths we will discover how a physical disability can affect our mental health and how the state of our mental health can affect our physical body. We will also explore societal stigma around disability that can affect our mental health and ways that we can overcome them or advocate to change legislation and collective perceptions.

This project has been developed by the private, non-profit organization, Cross Cultural Expressions, in partnership with the Access For All, Underserved Cultural Communities sub-committee of the Los Angeles County Department of Mental Health. For more information on this project or to learn about Cross Cultural Expressions, please visit our website at crossculturalexpressions.org. To receive referrals or resources to mental health services, please call the LACDMH Access Help-line at 1-800-854-7771.

Transcript

[00:00:00] Madison

Hi everyone. My name is Madison Buteyn and I would like to welcome you to the second of a series of six podcasts created by Cross Cultural Expressions in partnership with the Access for All Underserved Cultural Communities Subcommittee of the Los Angeles County Department of Mental Health. During this series, we will be exploring a variety of topics related to the intersection of the deaf, hard of hearing, blind, partially sighted, visually impaired and physically disabled individuals lives as it relates to mental health, wellbeing and the accessing of mental health services. This is an opportunity for members of these communities to sit together and discuss concerns, share resources, and give insight as to the work that can be done to keep individuals and communities uplifted and living their best lives. Before I introduce our wonderful guest, I wanted to make sure to share with everyone the Los Angeles County Department of Mental Health's Access Helpline number for Mental Health Services and Support. Please call the 24 over seven helpline at 1-800-854-7771. In this episode, we are joined by Kelsey Ledezma and Orion Queer as well as Mastanah Moghadam, licensed clinical social worker and executive director of Cross-Cultural Expressions. Hope you enjoy. We're going to start with just a brief introduction of you two, and you can choose who goes first. It doesn't matter whichever feels comfortable going first and share a little bit about yourself as well as your connection to this topic.

[00:01:24] Kelsey

Sure, I'll go. My name is Kelsey Ledezma. I am, um, 33. I'm a floral designer. I'm a full time wheelchair user. And, um, I would say that my connection to the topic is kind of that I'm a disabled woman and I've lived life as a disabled woman for now, almost 21 years. Within that, a lot has happened.

[00:01:54] Madison

Beautiful. Thank you, Orion. Thank you.

[00:01:56] Orion

Yeah. I'm Orion. I use he they pronouns Orion Queer. And I'm a therapist and I am disabled and chronically ill. Um, and a little newer, too. I've spent a year now with a wheelchair. Um, and, yeah, I started- I contracted Lyme disease in the summer of 2020. Um, and didn't know what it was, what the symptoms were for a year and a half and started using crutches. And in October of 2021 and then a wheelchair in March of 2020. And um, don't think that it will be permanent for me, but I'm unsure of like the damages to my knees. So it's kind of hard to say like what my mobility will be like going forward.

[00:02:46] Madison

Thank you both. And then also, which I've been sharing during each episode that we've done so far is that I am an able bodied person. So I am coming to this discussion as basically a moderator. And I want you two to share your stories as openly as you can, and I will offer some things. But of course I don't have extreme knowledge in this area just because I don't have experience with it. I just wanted to put that out there. And in relation to this topic, I wanted to ask you two what your relationship with trauma is.

[00:03:24] Orion

Yeah. So trauma. I grew up in a violent home, so I have a history of childhood trauma and physical and sexual abuse as a therapist. Also work with trauma and my daily practice with my clients and then also with myself doing a lot of personal work with trauma.

[00:03:47] Kelsey

It's been a lot of probably medical trauma. I think for me, a lot of things have come up. I didn't necessarily realize that I had trauma from the things that I've experienced medically until one of my friends died in front of me from cancer. And so my disability, I was disabled at 12 after going through two and a half years of chemotherapy because I was diagnosed with leukemia. And it was my last treatment that actually paralyzed me, having probably really poorly constructed coping mechanisms to my friend being diagnosed to watching her die. It just brought up a lot of things that I didn't know were kind of stuffed down there. And that's really, I think where most of mine is. It's the medical part of my life and my friends lives.

[00:04:41] Madison

I was wondering, Kelsey, and you can absolutely chime in, too. Orion is when you went through your second round of chemotherapy and you were dealing sort of with being disabled at the same time as that, how did you initially deal with that challenge? Like how I guess in relation to trauma, do you think it's because maybe you withheld that trauma from that event and that's what caused these challenges? Like just a little bit more story with that, if you'd like to share, if you feel comfortable with that.

[00:05:15] Kelsey

I think that when I was going through chemo, so I was diagnosed at ten and because I was ten, people didn't give me a lot of information. And so I think that at ten years old, I didn't realize the extent of what my diagnosis meant. I mean, even when I was first diagnosed, nobody told me I had cancer for months. I didn't know it was kind of my parents and my doctors deciding that they thought that it would be better for me to not hear that word. But I did eventually hear it. And I think that just being that young, I didn't recognize and realize what that actually meant. And as I got older and learned more about it. It's affected me in a way of like finally realizing what it actually was. And it's interesting because when I went from going through chemo to the paralysis, it. Nothing like struck me then. It wasn't like I went into. Like panic mode like I do now. It was kind of like I had just been in this mentality of like, we're going to do it, we're going to get it done, it's going to be over with. And then it went into this other thing. And I think that for me, it started more so as like anger. I was just angry that it happened. And it's been as I've gotten older that I've recognized kind of the consequences of everything that's happened. That has created this more. It's far more traumatic now for me than I think it was then, if that makes sense.

[00:07:03] Madison

No, that that does make sense. And have you been having to sort of unpack things now that you have a different understanding of it than you did when you were a child?

[00:07:13] Kelsey

I think so-

[00:07:13] Madison

Orion chime in whenever you'd like, but I did want to ask with regard to mental health, sort of the connection between your trauma and mental health, if that had any effect at all.

[00:07:28] Kelsey

It's interesting. A couple a few years ago now. My husband now. He was my boyfriend at the time. We went to Hawaii. And when he proposed to me, um. I, I, for lack of a better phrase, I lost my shit. Like we were in Hawaii. It was the night of. Or I'm sorry. It was the next day. And all of a sudden the room started spinning, and I thought something was, like, completely wrong with me. Like, I thought I was having a stroke. I thought it was just doomsday in my head and I didn't know what was going on up until that point. I had never had a panic attack. I had never dealt with this feeling of the world crumbling around me. And I actually ended up taking to my taking my well, my my husband took me to the emergency room in Hawaii because I was sure I was dying. Um. After that happened. I now have these instances where. And it tends to be if something is wrong with my body or something's wrong with my friends bodies or my family where it's instant and I just get into this like. Panic that I cannot get myself out of it. Just it hit me like a wall. Just out of nowhere.

[00:08:46] Orion

Kelsey, when you were describing like, your anger, when all of that originally went down for you was definitely relating to that. Um, when I, um, initially, when my, my left knee swelled first and it was like almost like a grapefruit on top of my knee, it was so crazy. And, um, yeah, I, I really resisted. I really resisted it. Um, I needed to get onto crutches. I needed to stop walking on it. Um, and I just didn't want to, um, like that transition period from being able bodied to not being able bodied was a rough transition. Um, and the first, the first basically six months, I just kept pushing, pushing, pushing, which really only increased the damage and very likely increased. My recovery time is probably a large part of why I'm I'm now still in a wheelchair a year later. Yeah. I really think that the trauma that I experienced, um, growing up played a huge part in how the Lyme disease affected my body. I think that I was like the trauma experienced, disconnected me from my body. And so I was just kind of like on autopilot in my life and also like always attending to other people's needs first, caring about other people, people pleasing, right.

[00:10:24] Orion

And so wasn't attending or listening to my body's needs. And um, I think that, you know, Lyme disease doesn't necessarily affect everyone in the same way, right? I have a lot of friends of Lyme disease. Not everyone's ended up in a wheelchair. So it started to get me thinking, well, why are my knees doing this to me? Why is a why am I in a wheelchair? I mean, I don't think anyone enjoys Lyme, but like, why can't I walk? And, um, I started to understand the connection there, that. That my knees had already been, um, damaged by a lifetime of running from my trauma. And while, you know, you couldn't really say that, like, did the trauma cause it or the Lyme cause it for me, it's like, where's the line between the Lyme and the trauma? Like, I don't know, It's all kind of the same to me. And like, recovering from Lyme to me is also intertwined with recovering from my trauma.

[00:11:26] Madison

Thank you for sharing. I, I do have a question about how you said that you felt or maybe still feel disconnected from your body. How have you worked to maybe get more connected with your body if that's been a part of your healing journey?

[00:11:44] Orion

Yeah. Um, yeah. So it's, you know, as I started questioning like, what's going on with me, what's going on with my knees, I learned about internal family systems and I'm now training in that. So it's a modality, a therapy modality. Um, and um, the premise is that we all have multiple parts inside of us. Like one simple example could be, um, like maybe you had plans to go out tonight. A part of you wants to go out and socialize with friends. A part of you wants to stay home and cozy up with T Those would be two different parts of you. Um, and so for me, that gave me a window into learning how to communicate with my parts. So like I started asking in my knees questions like, what are, what are they trying to tell me? And I got a pretty clear answer back which was just stop, stop, stop, stop, stop running, Stop. Like, really just. Like flinging us into unsafe situations and unsafe dynamics over and over again in like a repeat of my trauma. It wanted me to, like, slow down. They wanted me to slow down and pay attention. And so I was like bedridden for several months. Um, and being in a wheelchair, like, I can't go on walks anymore. And so, um, my idea of like, movement had to shift. So what are the movements that like am doing right now and how can I like pay attention to the way that I'm doing that movement? So like when I'm getting up out of the wheelchair, like transferring into the wheelchair, how am I doing that movement? And can I do it in a way that is like caring for my knees now, am able to like walk around my house. But even that I have to do carefully, right? If, like twist a little bit too much. How can I, like do those really small movements mindfully and with care and in communication with my knee? So it's like I'm sort of like building relationship with my knees.

[00:14:04] Madison

So more so of a mindfulness and listening to what your needs are tuning in. Got it. And then also, Kelsey, have you experienced anything regarding disconnection to yourself along your journey?

[00:14:20] Kelsey

I mean, I think that when I so with my paralysis, it happened over the course of like two weeks, I was just getting weaker and weaker. And then eventually I just fell to the floor and I could not get back up. Something that is not different because other people have this too, is that within my injury I still have full sensation. So there was definitely a period of time where. You know, feeling something, tickling my foot and not being able to get my foot away from that thing definitely had me like. In a. In a confused spot, I would say. But I think that it's been very similar to Orion's experience. Like it really came down to just listening to my body, you know, figuring out what it needed for me to continue to do the things that I love to do in a completely different way than I had before. But it definitely took time, I would say, to get used to, you know, picking up my leg and moving it over as opposed to being angry that I couldn't just move my foot away from the annoying source, right? Like, um, and I would say that now over the course of 21 years, you know, there isn’t really any part of me left that thinks about my body in a non-disabled way. Um, I feel that I am, like, fully acclimated to my disability. Um. But it's taken a lot of time to get there. It's taken a lot of time to just know. How to do things for my body because, you know, being seated for 21 years, my body is definitely, definitely seeing the.

[00:16:18] Kelsey

The rough end of that. You know, like I, I have scoliosis that's at almost 70 degrees. I have a pelvic tilt. My both of my legs are dislocated. And so being able to feel all of that, it definitely took some time to get used to how to use my body the way that it is now. I would say there was a time, even up until like ten years, that when I pictured myself doing something, I was a standing walking individual. And I'm not and I haven't been for 21 years. But in my brain, that's how it always came out. Closer to 15 years, things started to shift. And I think that a lot of it came with to just finally getting so sick of. The way kind of that the world is built. I think that eventually I kind of found role models that really spoke to me and made me understand that, like, if I'm living this life, then I need to be fighting for the things that are right for me. And if I'm fighting for those things that are right for me, then I need to be in alignment with who I am and how I navigate the world. And I think that once I made that distinction in my head that this is my life, you only get one. Stop picturing yourself as someone you aren't anymore. That I really. I really became the person that I was supposed to be.

[00:17:38] Madison

Yeah. That's powerful. Thank you.

[00:17:40] Mastaneh

Orion, what you were saying about. Kind of speaking to your body and seeing what the needs are. Being a therapist myself and working with clients who are experiencing loss or trauma in one way or the other, whether it's physical or emotional or, you know, environmental situational. The first question that comes up is the why me? And that why is this happening to me and almost looking for something that they've done wrong almost to kind of blame themselves or blame someone? And then the second part of it usually becomes that moment when. They start to really search for the answer. That acceptance comes in that whether I like it or not, okay, it's happened to me, but what am I there to learn from it? Like, what am I supposed to gain from it? Did you experience the whiny for how long? And then if you set out to look for when the acceptance set in which it sounds like it has for both of you and you looked for that reason as to, you know, now really becoming a seeker to see what what was meant to come out of this. Like, what have you

found?

[00:19:00] Orion

For me, it wasn't even necessarily why me at first. It was like not me. I just like refused to accept that it was happening. And, um, there was a period of time where people were sort of asking me like, How's the lime going? Or, you know, Oh, do you want me to connect you with a friend who's had Lyme? They recovered. Maybe they have something they want to, you know, you could talk or whatever. Don't you want to not be alone in this? Whatever. And I would just get so angry, like, don't want to talk about Lyme. I don’t want you to tell me who to talk to about Lyme. I don't want like, I don't have Lyme. I'm fine. Like, I just could not. I could not accept that I wasn't mobile. Um, like, not being able to take out my trash or cook for myself or get myself to the bathroom was just like I. I chose to, like, further harm my body. Like forcing myself to do those things alone. Then, like, ask for help and accept. Once I came to accept, it was when I had to confront really I had to confront slowness like slowing down meant being present and being present meant feeling what was happening to me. And that meant not only feeling what was happening to me in the present, like with, with the trauma of just like the loss of mobility, but also all of the things that were like hidden in my body from past traumas, um, that were going to catch up to me if I slowed down and stopped, like lying in bed all day, every day. When you're bedridden, you have to suddenly confront all these things that were like hidden previously by distractions of like going to work all day, being busy, having a social life. Like once all those things are taken away from me and was like chronically ill and in bed every day for like months on end. I had to, like, confront all of these things. So I think it, it went sort of hand in hand.

[00:21:09] Kelsey

When I was a kid and I was going through chemo, I did say, Why me a lot. So my mom, like a lot, you know, there was never any answer, of course. And. I think, though, that when the paralysis happened, I was under the same kind of thought actually, like, Nope, this isn't me. It's going to get better. This is not happening to me. I'm not going to do all the well, I'm not going to do the like learning how to live like this kind of therapy because I'm not going to have to stay like this. So why am I going to learn how to cook my food and do my laundry and all of these things from a seating position because I am going to stand and walk again. Once again, nobody would tell me what was going on with me. I actually wasn't diagnosed with a spinal cord injury until I was 18 years old. So I had this huge gap of time where I didn't know what had happened and they weren't going to tell me that it was the chemo. So I was just going and they were saying, you know, with with these types of things, we give it four years and four years. Whatever you get back is what you’ll have back. And probably things will get better and you'll heal within four years. So I put that, you know, Mark on my calendar and I counted those days and I was like, I am getting better. Four years is going to come.

[00:22:42] Kelsey

Things are going to be different. Well, four years came and went and nothing changed. Nothing at all changed. Um, and I still had no diagnosis and I had no idea what had actually happened within my body. Um. And I think that I still I mean, like I said, it was until. 10 to 15 years, I was still seeing myself as somebody that I wasn't. I wasn't living my full life. I was waiting. I was waiting and waiting and waiting for something to change that wasn't going to change and I was wasting my time. So I think the acceptance came. Almost like a fake it til you make it kind of thing. I told myself I accepted it. I told myself I wasn't waiting anymore, and if things were going to change, they were going to change regardless if I went to this place or didn't go. You know, instead of waiting till I was walking again to do it. So I think for me it came just from faking it for a very long time until finally the switch flipped and it was true. I'm sure you guys have heard that over the weekend. Judy Heumann passed away. It was really a lot of the things that she said and the way that she lived her life that made me think. That's how I need to be living my life and what I need to be doing. Um, and I think that that's really how the acceptance of it all came.

[00:24:09] Mastaneh

For listeners who might not know, can you let us know a little bit about who Judy was and what she meant to you?

[00:24:17] Kelsey

Yeah. Um, so Judy Heumann is widely considered the mother of disability rights. She is a huge component as to why the ADA even exists at all. Um. She lived her life very much in a way that she wasn't going to take no for an answer, and she wasn't going to let people tell her where she could and couldn't be. She contracted contracted polio at 18 months old. So she was a full time wheelchair user as well. And she if you don't know about her, I definitely recommend watching Crip Camp on Netflix. It's a great film. It really explains what she did throughout the years to help all of us who are disabled be able to live in the world and be part of society. I got to meet her last year, actually, and hang out with her a little bit and. She was so dope.

[00:25:18] Mastaneh

I actually often deal with with clients again experiencing loss, especially with children, um, and especially coming from like more communal kind of cultural backgrounds, right? More is this idea of don't tell them what's happening. And. It's something that even as a therapist, I know we kind of way back and forth, and ultimately I found that. In the long run, honesty really pays people, keeping people in that place of secrecy no matter what the age. Creates an environment of resentment and anger at some point. So having gone through it yourself at that young of an age, I'm wondering, looking back, do you have any advice how parents who might be going through a similar situation, like based on your experience, what you would have wanted them to do or what they did was fine or, you.

[00:26:25] Kelsey

Know, I truly I go back and forth on this as well. I can see why somebody would think that it's a good idea to keep those scary words away from children, especially. I think that knowing could make a huge difference in how you. Decide how you're going to go about it. Like go about the treatment and whether or not you're going to talk to, like a professional because like something I didn't do when I was going through all of this is I never went to therapy. I never talked to a therapist. I never talked to anybody. And it was. It was like offered to me, but in such a nonchalant way that I didn't feel like it was something that I needed to do. Like to me, at that age, it was just go see another doctor. That's how it sounded to me. Um, however, I think that it probably would have been better to have the full information and to have that extra help in the corner of a therapist. I think that that would have probably been better for me, especially moving forward. I think why I have trauma from. From my experience going through chemo and then my friend being diagnosed with cancer.

[00:27:45] Kelsey

So she was friends with me when I was diagnosed and when I was going through treatment. And she was kind of my friend that always stayed around. She never left me. She didn't care, you know, that I was sick and that the only way she could hang out with me was at my house doing, you know, things in my living room. I realized that I had kind of created these. May be untrue. Coping mechanisms like, okay, if cancer has to be real and it happens to one in so many people, then I'm the one and it's not going to happen to all of my people. That's not a realistic. That's not that's not statistics. That's how they work. So I built these mechanisms to get through it. These these way of coping with it that wasn't probably strong enough or real enough really to deal with what would happen if that did happen to one of my friends or family. And so I think that if I had started with all of the information and all of the people in my court that I probably should have had in my court, um, the way that I process this information now could have been different.

[00:28:52] Mastaneh

I think that there's something really to be said about the resilience of children. Children are far less rigid and more willing to accept and move forward. And I'm sure you have these clients dealing with loss and of course, your own experience yourself. Any thoughts on this?

[00:29:12] Orion

I think that that the piece around acceptance is something that's really hard to get to. I can remember the moment that it happened for me. It was actually during a therapy session. My therapist, I was just absolutely it was like shortly after coming out of being hospitalized for eight days, um, coming home and and. Starting to use a wheelchair full time at that time. Now am walking around my house a little bit and still use a wheelchair when I leave the house, but at that time was using it full time even to go to the bathroom and I was like just absolutely panicked and frantic and. She asked me, like, How old do you feel right now? And I realized that I felt, um, like a baby and that, like, I had had a lot of childhood trauma and that this experience of not being able to get myself to the bathroom was like, really bringing me back to that time. Just feeling totally helpless, totally powerless, totally dependent on other people and the lack of trust I had in the world to actually, like, take care of me. Um, and the inability I had to to reach out for help was living alone and, um, making that connection. I was able to, like, sort of separate myself from this child, part of me. And I started to, like, really see myself as a caretaker to this baby.

[00:30:55] Orion

So it was like I wasn't asking for help for myself. I was asking for help for this child, you know, And I had a responsibility for this child, like it was my it was my duty to to ask for help, you know, like if I needed help getting to the doctors, it was my duty to help this kid instead of, like, not right. If I had a child and I needed to get them to the doctor, what would I do? I'd make sure I did it. And if I couldn’t do it the way I used to, I'd figure out a new way because this kid needs to go right? And so that, like, separation, it was just like a it was almost really immediate. I was surprised at how fast it happened. Once I made the connection, it was like the next day I woke up and was like, okay. I can't walk. I have to do things differently instead of like, you know, doing it the old way and having it not work or just lying in bed being like, I could never do these things. Finally, I started being able to move forward and accept that, like, I needed to, to make changes, not just like for myself, but like for this younger. Part of me. Don't know if that sort of answers your question. It went on a different tangent, but.

[00:32:12] Mastaneh

That's the core of inner child work, right? It's it's amazing. It's amazing. And how that really came up for you. Thank you so much.

[00:32:24] Madison

Yeah. Thank you both for sharing and thank you, Mastana. I was sort of thinking about something, a term that you introduced to me. Orion, when we first interviewed you a few months ago was medical gaslighting, and I wanted to talk about that because in relation even to Kelsey Soren, I know that you've experienced it too. Orion is just people maybe not believing you about your experience or your hardships or sort of ignoring them completely. So I just wanted to hear from you. Orion You can go first and then Kelsey you can chime in whenever.

[00:32:57] Orion

Yeah. Lyme disease is, is, you know, rife with medical gaslighting because they don't really formally recognize chronic Lyme. Um, and still the, the current sort of treatment is like 2 or 3 weeks of antibiotics and supposedly you're supposed to be fine after that, did several months of antibiotics. And clearly my tests continued to show back positive and still sick. Um, and after, Yeah, the doctors just, um. Couldn't do anything more for me, and so would continue to say that it must be something else. It must be something else. Even when I was in the hospital for eight days, they didn't want to give me more antibiotics. So I just started to get denied treatment. After that, it was bopped around to infectious disease specialists, rheumatology and orthopedics, and no one could do anything for me other than give me anti-inflammatories or steroids and was like, Well, those aren't cures like I. What about the Lyme disease? So I really also eventually hit a wall. I've like hit a wall here. I've gone as far as like I can go in the mainstream medical industrial complex, as I called it, like they don't have. There's something more for me here. I had to find my own alternative treatments. And once I like did that opened up this whole world of other people who have found remedies. And I'm now doing bee venom therapy, which is stinging myself with live bees. I do 34 stings a week. It's working. It's a three year protocol. It's very slow. So I started it in May. So, you know, we're still very early.

[00:34:59] Kelsey

It's interesting because when it first happened, when I first, like fell to the floor and couldn't get up and I went to the doctor, I was I went actually to the hospital where I was being treated for with chemo because that's where my oncologist was. And when you have an oncologist, that's kind of the first doctor you go to. When you're experiencing anything, you know, make sure it's not related or has anything to do with it. So I went to that same hospital. She wasn't there, but they had the emergency doctor there. And the first person he actually called was Psych. It wasn't neurology. It wasn't anybody to check like, Oh, why aren't her legs moving? It was psych. They had thought that I just didn't want to go to seventh grade. And when Syke got there, she had a she had a she had a talk with the doctor who called her and she called Nero. And they came down and checked everything and, you know, went from there. So I think that that was my first even falling to the ground and not being able to get up right then was my first experience with basically medical gaslighting, telling me that I was faking it, that I was doing it to get out of going to school. Um. Eventually, though. The neurology came and said, No, there's something isn't right here. But I still didn't have the reason why. I mean, for the next six years. Nobody would tell me what was wrong with me. It was until I went to I. I turned 18 and I needed health insurance. And so I needed to get on Medi-Cal. And when you do that, they send you to a doctor to make sure that you are how you say you are.

[00:36:42] Kelsey

And it took him two minutes to say you definitely have a spinal cord injury. He's like, you've never been diagnosed with a spinal cord injury? And I was like, No, nobody's ever said that. He said everything about the way your body responds tells me you have a spinal cord injury because I've been sitting so long, it's it's been less of like, what you're saying isn't true and more of, Well, you're already in a wheelchair. What do you want us to do? Part of my disability and part of my nerve damage is that I get these really intense muscular spasms in my legs. And that has been basically like pulling at my joints to the point where that's why things are dislocating. Um, I had that happen in my ankle and my foot completely turned inward. It was basically almost upside down. I had seen plenty of podiatrists about this and basically they just told me or acted rather like you're already in a wheelchair. I don't like, Why would you want to fix this? It doesn't matter. It wasn't until last year that I finally found a podiatrist who looked at and they had never done even imaging on it. Um, but I had seen a podiatrist on TV that looked like she really knew what she was talking about. And so I went and saw her and she did imaging, saw that like, no, it could completely be fixed and it should be fixed. And so we fixed it. And it really hasn't been until very recently that I've had doctors taking me more seriously and saying like, No, these things can be fixed and it will definitely increase your quality of life and we need to do this. But that's only been within the last, I'd say, year.

[00:38:26] Mastaneh

It really speaks about how you have to be advocates for ourselves, right? Check in with yourself and say, This doesn't make sense to me. It doesn't matter what this doctor saying, doesn't matter what that person is saying. And so I think it serves as such a good reminder. There's a million doctors out there. Each of them are different. They do different things. And if one isn't giving you the response or saying what you need, it's perfectly okay to go see someone else and try to really look for whatever, whether it's an again, Western medicine or alternative or whatever way to get your needs met.

[00:39:08] Orion

Something as a therapist that I would love to to bring to the table to this discussion too, is the sort of bridging of the body and mind, you know, like think that it's like what Kelsey was describing is unfortunately such a common experience that people are told that they're making it up. They don't they just don't want to go to seventh grade or there's something psychological going on. It's not medical, it's not physical or something that does actually often happen is people do, um, get all the tests, do all the things, and the tests show up negative. Um, and that wasn't your case. Kelsey But in my case, also, like my test did show positive for Lyme, but there are lots of people who are chronically ill and disabled because of their chronic illness that nobody knows what's going on with them. And so I want to bring like some bridge, some of that, that like our trauma, like can cause inflammation, can cause chronic pain and chronic inflammation and that But what I think is important and often left out is that that doesn't mean you're making it up and it also doesn't mean that it's not real or that you're to blame if you're running up against a wall and you don't know where else to go. Leave the medical industrial complex and look elsewhere. Right? Because that's not your only avenue for healing. For folks who are experiencing chronic pain and chronic inflammation and who have hit that wall and doctors don't know what's going on, don't know what to help them with. They've done the routine tests. They haven't found anything. I would definitely check out internal family systems therapy or somatic experiencing therapy or both parts of us do use our body to communicate that that is very real and very important and valid.

[00:41:08] Kelsey

Because of the time we're in. And I would say even because of social media, I have seen a shift in doctors. And so I think it’s something to really build off of the idea that, like, you're not stuck to one doctor. You need to go talk to more than one. It has been my experience that when I'm having. Problems or issues and things that like normally doctors would just say, Well, what do you want me to do that if I look for doctors who are you know, it's easy to just pick a doctor off your insurance list and go, but you do need to look into them because there are some doctors like Orion was saying, a lot of doctors don't believe Lyme is a thing. But there are doctors out there now who do. It's something that I feel very strongly about, is really looking into who you're talking to, what is their experience? What do they care about? Are they continuing their education in these things? Do they work with, you know, do they have a mix of Western and Eastern modalities that work together? Are they in support of that? Because for me, those are the doctors I want to see. I want to see the people that are like, you know what, let's try this. If that doesn't work, let's try this other thing. You know, medicine is an industry and you have a choice, and so do they. And and if they choose not to continue their education, they choose not to stay up to date with what, you know, universities and all these medical places are coming out with. Like, is that the doctor you want to be seeing?

[00:42:47] Madison

I wanted to open the floor to both of you and ask if you have any concluding thoughts that you'd like to share that's in relation to what we've discussed today and also any resources that you might have that you'd like people to check out.

[00:43:02] Orion

So there's a book called Inflamed, Inflamed Deep Medicine and the Anatomy of Injustice by Rupa Marya and Raj Patel. There's also, um, The Myth of Normal by Gabor Mate. He is a physician as well as a psychologist. And, um, the book is talks a lot about the overlaps between chronic inflammation and chronic pain and head trauma. It's really brilliant. And then, um, No Bad Parts by Richard Schwartz, um, who started in the internal family systems modality and No Bad Parts is great because it's written for like anyone, it’s not written for clinicians, it's written for, for all folks. And um, and Richard Schwartz also, they did a study with internal family systems and rheumatoid arthritis to be interesting to check out that study too. If someone, if you know someone does experience rheumatoid arthritis or really any other chronic inflammation, you're not sure what the cause is. Um, and in the study it showed that internal family systems work with folks with rheumatoid arthritis, decreased symptoms. Those are some interesting things that I would definitely recommend.

[00:44:31] Kelsey

I think something that's made a really big difference for me is finding community. Finding people that have your same shit going on or close to. There's really nothing like being able to just release all that stuff with somebody who knows exactly what you're talking about. It's just a different kind of support and it makes a big difference. You know, I think one of the biggest ways people do is through social media. And I think that it can be intimidating to reach out to somebody you don't know within this community. There's a connection that just lives that we don't need to really know each other in order for you to reach out. You know, like I'm I'm always around for anybody. If they want to reach out to me, I'd love to connect with people who live a life closer to mine. My Instagram handle is at Mobile Underscore Vulgaris.

[00:45:24] Orion

And my Instagram is Orion Queer Therapy. My website also is Orion Queer therapy.com.

[00:45:32] Madison

I would like to thank our wonderful speakers for giving their time and wisdom and being here today. I want to remind everyone that if you're in need of mental health resources and support, you can call the Los Angeles County Department of Mental Health's Access Helpline at 1-800-854-7771. I also want to invite you to listen to our other podcast episodes, as well as our YouTube series that addresses the topics of mental health and wellness as it relates to the deaf hard of hearing blind and physically disabled communities. For links to the podcast and YouTube videos, feel free to reach out to cross-cultural expressions by emailing us at Connect with CCE at gmail.com. You can also find links by going to our website at score.org.

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