Cystic Fibrosis and Meditation with Maggie Kelly

Episode 25 August 30, 2020 00:56:55
Cystic Fibrosis and Meditation with Maggie Kelly
Freewheelin with Carden
Cystic Fibrosis and Meditation with Maggie Kelly

Show Notes

Cystic Fibrosis and Meditation with Maggie Kelly led by host Carden Wyckoff


Who is Maggie Kelly?


Special thanks to my producer Jonathan Raz on Fiverr

Use referral code 'Carden' when downloading iAccessLife mobile app.


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Episode Transcript

Speaker 0 00:00:04 Welcome to freewheeling with carton. This podcast share stories of people with various disabilities and shines a new light on accessibility topics. Our goal is to knock down barriers so we can roll through life a little easier and build a community to do this together. Please rate and follow this podcast or text card at (470) 588-1215. With comments and suggestions. We welcome you on your journey towards inclusion for all. And now your host Carden Waikato global disability advocates and wheelchair warrior. Speaker 1 00:00:36 This is his spiritual mentor and coach Maggie. Kelly brings a wealth of experience leading together the ancient Eastern traditions with Buster and psychology in her practice to help her clients create mindful attention to our lives into full and compassionate engagement with our world. Maggie is the mother of two children, one who is chronically ill with cystic fibrosis and the other who manages a mental health condition. Now he also owns the sat saying house meditation and spiritual center in San Diego is a certified meditation instructor, podcaster and public speaker. You can find [email protected] and that's K E L L Y or the sod sing I say T S a N G H O U S And I welcome you. Maggie Kelly. Speaker 1 00:01:27 Welcome back to another episode of freewill in a carton. I have Maggie Kelly here today to talk to us about being a mother who has a child with cystic fibrosis and then another child who has a mental health issue. And so welcome, Maggie, how are you? I'm great. Thanks. How are you? I'm great. I'm thank you so much for being here and I'm really excited to have you, and I first wanted to start out with just talking about what it's like being a mother that has children with different types of disabilities and how that impact has been on you. That's a big question, isn't it? Right. Speaker 1 00:02:07 My son who has cystic fibrosis is 19 and on his way to college after COVID of course, and then my daughter is 22 and just graduated from UC Berkeley. So what, Oh my gosh, it's been quite a journey. I will have to say these kids have been the greatest gifts and the greatest teachers I've ever had. I think that, you know, my daughter who was born first, we didn't really understand her the mental side of what she was going through until she reached puberty. So mostly in the younger years, I was doing mostly with her little brother who has cystic fibrosis. And for those of you who don't know what that is, it's a chronic lung disease is genetic and it's incurable, it's life shortening. And, Speaker 2 00:03:00 Um, it's progressive. So there's lots of great medications and things now and on the horizon that are having kids with CF live longer, but for the most part, the average life expectancy's about 45. And so when he was originally born, that was enough to send his dad at night. They both just sort of, it's like, you know, you have a picture of how your family is going to look and how it's all going to turn out. And then this wrench gets thrown in. You really have to figure out how to take a different picture and just adjust your perception of what your families can look like in a big, big way. Really. And I think at the beginning, I didn't get that at all. I was too busy trying to manage and I thought, you know, I'm his mom, I'm supposed to fix it. And I'm supposed to cure him. Speaker 2 00:03:54 I'm supposed to take him to the best doctors in the world. And you know, he can't possibly miss a lung treatment ever, ever, ever, you know, everything I do has a repercussion of how long can I live and, you know, so I took it all on myself. And of course when they're little, you do that anyways, parent, but as he's gotten older, I think it was about when he was three, really that I finally, I, it was sort of like one of those epiphany moments where I just was like, wait a minute, you honestly think you can control. What's going on here. You think is on you 100%. And so it really taught me a lot about how I had to just surrender to what is right. And certainly not stop doing all the things I was doing to care for him, but not like it's black and white. Speaker 2 00:04:52 It's like there is do what there is to do. And that's all there is to do. And the rest is not on me. And that gave me quite a bit of, um, freedom liberating to let go of the control, which I don't think I expected, but I actually started laughing at myself thinking you dummy, you really thought you could manage this mandolin and you were in charge. Yeah. So, but he's had some rough patches, you know, some extensive times in the hospital that have been frightening, but I am reminded over and over again, look, this kid's not mine. Anyway, he's on loan to me for as long as I have, I'm going to do the very best that I can and teach him to be a self sufficient as possible, which is sort of where we are now, because he's on his way to college, a little bit of a diversion because of COVID. Speaker 2 00:05:53 But, um, you know, to be able to do all of the medical that he has on a daily basis is very extensive. He takes like 20 pills a day or more, does two hours of lung treatments every single day. And those that equipment needs to be sterilized and all of that, all the meds need to be reordered. So all of that, I am turning over to him gradually, but I've got to, you know, when he misses the man, instead of getting angry, like I used to, like, you didn't do this and that instead of like, you know, I can't be more committed to your life than you are. Cause really the ownership is on him and it's fair or not. He's now an adult and he's about to go off to college. So if I am always there picking up the Slack, he's never going to get it. So yeah, Speaker 1 00:06:51 That's interesting. And I interviewed my mom about what it was like for her because I, in the middle of three and no other, none of my, most of my siblings are healthy. And I remember her saying the same thing. What you alluded to was you had this idea of what this picture perfect family that you thought was going to look like. And so everything obviously drastically changed when you have a different picture. And I'd like to just know how you dealt with it Speaker 2 00:07:28 Internally. Well, I think the part about control was key for me. And I also had trouble and still do with who do you tell? Not like there's shame cause there isn't right. It's like if he had diabetes, I wouldn't be ashamed, but like his privacy's important and people don't understand and people are very discriminatory and very, um, judgemental and towards him. Well I think towards anybody within disability, Oh sure. There's very little room for difference in the world. And if you're different and the toughest time for him, I'm guessing is now as you're an older teen, all you want to do is fit in all. You want it to belong. All you want to do is be the same. There's nothing really want that sets you apart. You're not there yet. You haven't developed or matured to a place where we're being different. It's cool. Speaker 2 00:08:39 It's a really big asset. And I don't think that our society sets up a conversation that allows for that. Anyway, I think, you know, look at, look at the streets right now. You know, it's very clear that diversity not okay for the general. I hope not half the population, but at least 30% of the population shows us pretty darn accurately how we feel. And so in the earlier ages, I wasn't, I didn't tell everybody he was friends with or their parents even when they came for playmates and such for two reasons. One was because of that. But also because I didn't want him to feel shame and I didn't want him to feel like I was somehow, you know, destroying his privacy. I wanted it to come from him if it was going to come from anybody. And I wanted to see how he would rise up and deal with it. Speaker 2 00:09:42 But I think that that was a mistake because as he got older, he was like, why don't you never talk about cm? Like, why don't, I mean, what do you want me to talk about? You know, we talk about the meds. We talked about the treatments. We talk about the doctors you talked about, you know, making this appointment and that appointment with all the specialists that he has. What, what do you, what is it that you want me to talk about? And when I came to find out it was more, this, this social piece than that, because I didn't say much, he didn't feel like he had permission. And so looking back in hindsight sure. Could I have done it differently? There's a lot of things I could've done differently as a parent, but we do the best that we can with what we've got in the moment. Right. So Speaker 1 00:10:32 Interesting to hear that you're saying it's almost as I could frame it, at least as I understand is that you didn't want people to think of your child as a charity case like this, this tragedy. And I always learned about the different models of disability and there's this like tragedy model. And then there's this social model. And the social model, I think, is what he is kind of being aware of and what that social model is, is how can we remove those barriers and those obstacles to allow the person with the disability to thrive and be okay with talking about it. Speaker 2 00:11:09 Right. And when, Speaker 1 00:11:11 And says, Oh, you're such an inspiration. Like, Oh, I feel so sorry for you, whatever the case may be. It's like, okay, well thank you. But at the same time, less may turn you into an ally that can be supportive and share my message. Speaker 2 00:11:27 Right. Right. And I think that just now, you know, every winter, when winter comes around, the flu season comes around in, you start to stay away from a lot of people. And he used to get a cold for him last month. And, um, it can turn into a cystic fibrosis exacerbation, which looks like a bad pneumonia or two, um, and a hospitalization that's minimal two weeks and always in isolation. So I guess for me, the biggest concern is the isolation of his life all the way through. And even now, now it's even worse with Komen, right? So he's afraid to go out and I don't want him even more so. And on the other hand, he's 19, you know, he's gotta have a life. You know, this is the prime of your life, these years going into college and after college and in your twenties. So that, that kind of breaks my heart. But yeah, Speaker 1 00:12:35 You want him to just have that quote, normal life that all the other teenagers are having, I will say, and just, you know, going to I'm 27. So I wasn't too far away from being a young teenager, going into college and feeling like I just want to fit in with everyone else. And I just want to be able to adjust, do all the intramural sports like everyone else. And at the time I was walking, but it just, it was not pretty and I was falling all the time. So, and, and there is that feeling of isolation. I'm sure it's much different for him and to feel, especially when he's in the hospital and having to isolate himself, uh, Speaker 2 00:13:16 Cause I don't think it matters because here's the thing that's different with you, between you and him is that you can't see anything about everything looks normal. So nobody would believe you or believe me when I would tell them, well, like what are you talking about? Interesting. Look so great as if you're supposed to look horrible. Like, you know, if you've look at somebody who's got diabetes, they don't look like they've got disability, you know? Sure. So this is all, this is about that preconceived notion of what disability actually looks like that are the public and the social perception of, of what it's supposed to look like. And when it doesn't fit their picture, they're like, they think you're crazy. So Speaker 1 00:14:08 That you brought that up. That's, it's fascinating because you're right. 70% of disabilities are invisible. Speaker 2 00:14:16 Exactly. So then when you come to mental illness, it's the same thing, right? I mean, it's not quite invisible, but it's, it's not physical. It's not physically evident. Right? Right. So everything about him looks absolutely normal. Everything looks wonderful. So the idea that he might end up with a double lung transplant in the next 10 years, just you can't even fathom. Right. So Speaker 1 00:14:47 I do have a question about, is the medical expenses for someone that has this type of disability that obviously involves a lot of medications and treatments and hospitalizations and stuff like that. How, how does one pay for that health benefits? Is there good insurance? Speaker 2 00:15:08 He's very, very fortunate that his dad's company has great insurance, but so until he retires, we're in good shape. And unless we do something tragically horrible with the preexisting condition clause of our health care, he should be okay for awhile. Right. So it's specifically, Speaker 1 00:15:33 I think specifically in the health insurance that you looked for to get coverage specifically for CF Speaker 2 00:15:40 Durable medical. Okay. Because he has a stomach tube, he has the machine that, that percussion machine that bangs on him twice a day. He also has a nebulizer that converts the liquids into a vapor that he can inhale. So those are durable medical pieces of equipment in each. One of them are well over 4,000 plus, which is ridiculous in and of itself. But you know, like, like one of the things with health insurance, which I find to be absolutely ridiculous is they will pay for the stomach tube itself. Right. They will pay for him to have it placed. They will pay for us to change it out every three months they will not pay for the food that goes in it. Hmm. Interesting. What do you want to meet a peanut butter and jelly sandwich? Speaker 2 00:16:46 So that always, you know, it doesn't matter how many times the doctor, you know, appeals the decision and all of that. It's just not going to happen. It's not going to happen in the 19 years I've been doing this. It's not going to have goodness. So things like that. And then there's always, always, because of all the medications, he's got six different pharmacies. So there's always a prescription that needs to be filled or renewed or call the doctor about or go pick up or get mailed or, you know, so it's a, it's a full time job to just do that. And so that's why putting it over onto him as a whole nother Avenue. Right. Speaker 1 00:17:28 And I want to definitely continue the conversation on just pharmacies and drugs and what that's like. But I wanted to drop a little ad quickly for my friends app. I access life. If you have a disability or with friends with disabilities, have you ever gone somewhere and face accessibility issues such as the entrance isn't wheelchair accessible or the venue is super dark and would pose challenges if you had low vision, two of my great friends, Brandon inside here in Atlanta develops I access life. I access life as a mobile app that lets users with disabilities rate review and research places based on their accessibility. You can rank places like restaurants, stores, and hotels and transportation based on the accessibility of parking, their entrance, their interior space and bathrooms. It's like the Yelp for disability ratings. I access life is found on the app store and Google play for Android. Use the referral code carton. My name C a R D E N when signing up. Alright. Now back to the discussion about pharmacy and drugs and such, I guess like, you know, with any pharmacy or with any prescription, if you have to refill it over and over again, obviously this is a preexisting condition. Is there anything such as an unlimited amount of refills Speaker 2 00:18:50 For the nugs are you want to continue to go to your physician? Because four of them, each of those four are specialty pharmacy drugs. Each one of them is over $5,000. So you can't and he, he alternates so that he doesn't become immune to one of them. So he does one for 28 days and then they does it different for 28 days. And then the other two are always ongoing, but depending on his condition, any one of those could change. So no, unfortunately there isn't anything that, you know, he's going to be on forever at that particular dose. Right? No interesting. Speaker 1 00:19:33 Wow. A whole nother world that I, I haven't really thought about mainly because, I mean, I don't take drugs or anything for my type of muscular dystrophy. So that's just, there is no treatment. There are no drugs. There's nothing that I can take. It's just a one track to, I'm just a progressive muscle loss. So Speaker 2 00:19:54 Something that, one of the things that I just wanted to mention that always concerns me now in this line of COVID and we get to a place where I see you, beds become sparse and then they start deciding who's going to get treatment and who's not. And someone like him with a preexisting lung condition, even though he's only 19 would not be as high on the list as someone 19 who doesn't have it. That's fine. That's the kind of decision making that goes on in this type of a pandemic with these kinds of limited resources in hospitals around the country. And I hope to God, we never get to that place, you know, cause it's really, it's a physicians having to value to place a value on life. You know, you should always save the 60 year old who has no preexisting conditions or should I save the 19 year old? Who's younger, but has cystic fibrosis. Speaker 1 00:21:02 And essentially, I mean, it's interesting because both the lifespans there, if you weigh them out, they're not that much different either. Roughly if you know, the average lifespan is 80, 85, you said the average life span for CF was 45. So with 20 years. Speaker 2 00:21:23 Hm. Yeah. So that, that, that became a grim reality this spring. Um, but hopefully we won't get to that place. Speaker 1 00:21:33 Yeah. I hope not too. Uh, you were able to get the transplants as needed in a quick amount of time, but I don't know how, right. Yeah. And if, I mean, who knows how long, the, how long you have to wait to be on the trends Speaker 2 00:21:48 List? Well, that's, what's also really not good about COVID is that some of the ways that they are carrying some of the hardest toughest cases of covenant is by transplanting them, which means those who have CF or other underlying lung conditions are then not gonna, you know, where are they going to put them on the list? Sure. Right. And you give him a new pair of lungs and his they're still going to be in diseased because the disease is genetic. It's not like you take the lungs out and the disease goes with it. Wouldn't that be nice? No, you just start with a fresh pair of ones and they get diseased over time to the anti-rejection and all that it looks up. So it's a whole nother, ethical dilemma that I, you know, I don't think anybody saw coming really. Speaker 1 00:22:43 Yeah. Of course. Especially adding a pandemic on top of it. The only real thing that I know much about CF is I see it in movies. I think the most notable movie that I remember was six feet apart. I don't know if you've seen that movie or what you guys think about how CF is being portrayed in the media and if that's an accurate description and what would you want to see change? Speaker 2 00:23:12 No of the movie is it wasn't, wasn't entirely accurate, but I'm not sure much about it cause I didn't see it. So I just know that it's really, it's one of those day to day kind of things. And you just, you play cat and mouse all the time with it and that's all you can do. It's, you know, it's one of those things where you chase the enemy every day and the enemy in the case of cystic fibrosis is mucus. So anywhere in your body where you have mucus, there's a problem. So that's the upper respiratory or your sinuses, your lungs, your digestive system, your liver, your pancreas and your reproductive system. So he has a problem in every one of those spots in his body on an ongoing basis. It's a cumulative thing. So, you know, I think you asked earlier, you know, what have I learned? I think I've learned that, you know, even if we live to be a hundred, it's a short life and um, don't mess around, I mean, make the best of it while you're here. Because I don't know if this is my last conversation I'll ever have in my life. Right. So, and I don't, and I'm not sick and I'm not chronically ill and I don't, you know? Yeah. None of us is guaranteed. No one's getting out alive. So it makes the best sense to just live in response. Speaker 1 00:24:42 I like that. Yeah. That was you to say responsibly. Um, do you think that, or have you watched your son kind of gravitate towards that mindset of, I only have X, many years left, so he's still is just taking it day by day and not just running across the world to go travel the world. And Speaker 2 00:25:05 I wouldn't say that it's the opposite and that's just disturbing, right. Because he's not going anywhere. And this was before COBIT right. Speaker 1 00:25:18 Traveling poses a big challenge with getting sick. Is that one of the hesitations or just in general? Speaker 2 00:25:25 I think in general, I think it goes back to that conversation or if I'm just so different, you know, who do I know has this, that I can even connect with? There's very few people out there. That's why I went into the explanation of it because very few people even know what it is. There's only 30,000 people in the United States who have CF. That's not very many people. Speaker 1 00:25:53 Oh yes. It's definitely a rare disease for sure. Are there any Facebook groups, community groups, anything of that nature that are online? I mean, at least for the muscular dystrophy community, there are tons of groups. Speaker 2 00:26:07 Well, yes, there are an assisted fibrosis foundation is really one of the best of its kind charity organizations and donate 98 cents on the dollar to research for the cure, which is so different from M digging in ms and all those others. Right. And so the cystic fibrosis foundation is very well funded and doing an amazing job. It's just, he doesn't want to participate, so I can't make him. Right. Speaker 1 00:26:38 Sure. And I think a lot of that also could be just his age as well. I mean, I was definitely in that mindset for a long time of, I don't want anyone to know that I have this. I don't want anyone to look at me differently. I don't want to be an advocate. None of that. I think over time, it, you kind of, I mean, at least for me, I woke up and I was like, okay, I'm actually going to be an advocate and break down barriers and make change. But again, it's a mindset and you have to be willing to change that. And obviously you can't change his mind to do that. So that's understood. Speaker 2 00:27:16 No, no. Speaker 1 00:27:18 So I know you do have a practice for mental health awareness and you have programs and stuff like that. How does that integrate raising your children with disabilities? Speaker 2 00:27:31 Does that happen? I think it's awesome. I think it's awesome. It's actually what contributed to me doing, going down this path? Oh, my own sort of spiritual awakening and just sort of understanding that there's things we come to the party with that tanked our perception and tanked our point of view. And, um, while it's almost like, um, it's almost like when you, when you eat something and you feel the residual on your teeth, like, you know, you need to brush teeth sort of like that. Like you come to things, situations, connections, emotional things, all of that with a residual like that on your teeth, right. And with the residual, but of emotions and perceptions and mindsets. And in last we can wake up to that idea that those are just residuals that need a little brushing off. We're not going to really get to the true essence of who we are and the true essence of who we are. Speaker 2 00:28:40 We'll never showing through as long as we're coming from a place that has all the residual covering, covering up that place that shines within us. And I think, you know, I think for all of us, it's really important to be able to uncover and discover and discard, whatever those residuals are so that we can find that light that we all have, but not everybody's willing to do the work that's necessary or has the patience or the courage. Right. Cause it's not fun and it's not easy because some of that stuff that's hanging out is painful for some. And some people have had some really tough upbringings and don't really want to revisit, but I always say, unless you revisit and you know, brushed your teeth, you're going to be carrying it with you right. Everywhere. Your teeth are gonna rot. Right. Yeah. And so what I do is I, um, I teach meditation, I have a meditation center in San Diego, but I also incorporate the Eastern traditions into my spiritual life coaching practice. Speaker 2 00:29:51 So I have a certification in mindful or contemplate of psychotherapy as well as meditation, as well as life coaching. So I've kind of married them all together. Yeah. It's a nice trio. Yes. Well, it's really, it's important because I it's, to me, you can't, and then spiritual teacher will tell you this too. You can't live your true self while you're carrying around that residual. And so how do you get rid of the residual? You can't meditate in a way you have to do more than that. You can't read how to do it. Right. It's experiential. And until you're willing to put yourself into the experience and actually delve into it, then it's, it's, you're not going to get there. Right. And it's a journey. A lot of people have a misperception that a spiritual journey means thing. I'm going to have an epiphany and I'm going to be enlightened and that's that. Speaker 2 00:30:51 And off I go, right. But it doesn't work like that and you don't want it to because we grow and we develop and we nurture ourselves and each other as time goes on. So it wouldn't want just one lesson to wake me up. And it just doesn't work like that anyway, because we get sucked in and hooked to our old residual patterns of behavior all the time on an automatic basis. So really it's about developing the awareness of those times that we get hooked and taking a different path in the moment, rather than thinking about it in the afterward and going, God, why did I say that? Or I wish I did that differently, or shoot, I shouldn't have opened my mouth or any one of those things or all of them. Right. So it's a practice and it's tough and it's not, it's not for the lighthearted. Yeah. Of course. Speaker 1 00:31:57 Kind of led to that moment of, okay, I'm going to start my practice. Was it? Cause you did allude to the fact that it kind of was this spiritual awakening happening, having children with disabilities. But I guess what, what was the specific thing that made you? Speaker 2 00:32:14 I think when I, when, when the kids were younger, when Cole, my son was young, really young, like toddler and my daughter was three years older, right in there. The whole thing felt so overwhelming to me. I just felt like I got hit over the head with one of those old cast, iron skillets, you know? And I didn't believe that I could do it. I didn't think that I had the capacity to endure watching my son get more ill as time went on and then perhaps sitting with him while he died. And I just like, you know, I, so the, my old way of being was run away from it. Don't do it bail well as a mother or a parent father, you don't, you can't, you don't have that luxury. Speaker 1 00:33:17 Yeah. You can't just run away. Right. You could run away from your child, but uh, Speaker 2 00:33:23 Some people do and some people do, but not here. And I started to listen to my own thinking like that is so self centered that thinking that I'm leaving, you know, I'm not, not leaving physically, but leaving mentally. Like I don't want to do this. So I needed at the time I started drinking and that's when I started to wake up to what are you doing? Do you really think this is going to solve the problem? And so now I'm not really leaving physically, I'm leaving completely emotionally, ever since day. So thinking that the pain is too much for me to deal with, and then it was okay for me to just check out that has gotta be the most selfish thing anyone can do. And somewhere in there I realized I can't do that. I'm not doing that. That's, you know, I'm not gonna, no matter how short his life or long his life is, I'm not going to miss it. Speaker 2 00:34:30 I'm not going to, I'm not going to have a regret. When I look back that says, what a done, why did I do that? I missed his whole life. So somewhere in there. And I think it was during that time of that apifany of, I'm not in charge that we were talking about earlier, somewhere in those moments is when I realized that no, you're not charged, but you're responsible and you're accountable. So while you can't control it, he's innocent. He's a child, you're a parent suit up, show up, puts your ass on the line and get in the game. And that's kind of, kind of where I went with him. And he was about three when I made that decision. So then about, I don't know, eight or 10 years later, his sister went sideways. And that was, and I was so thankful that I was present and aware and awake and, you know, had my wits me and sort of, maybe not intuitively knew what to do, but had some sense, you know, of what I should do to help her. So, you know, I really looked back on my life as an early parent, a young, a younger parent, and just, I'm thankful that I was present and awakened enough to notice so that I didn't, it didn't turn out a different way. You know, Speaker 1 00:36:05 That's so important to show up for your child. I mean, I'm not a parent, I hope one day to be a parent. And this is fascinating to learn about that. Whenever you are faced with some type of adversity that you can't just drown in it, especially can't have alcohol drown it because it's not going to go away. It just actually probably will make it worse. I'm interested in, you talked a little bit about your journey in your awakening. I'm interested in knowing how your husband felt as well during this. And I know a lot of relationships when they have children with disabilities. Sometimes it goes bad. I mean, I, I saw it with my parents as well. I mean, they're still together today, but it was really rough for a time. And it was my mom who was leading the charge and my dad was completely checked out and had no interest and didn't want to claim me essentially. That's a little excessive to say that, but, um, he just, he was in denial for a long time. And so, you know how ugly it's okay if I ask you and feel free, if you don't want to share, but what was, what has it been like for your relationship? A lot like that, that is similar and even family Speaker 2 00:37:20 Like your family. And, um, it was sort of like, he went to his corner and I went to mine. Yeah. And I woke up to this idea that you can't just bail, but he didn't. And his method of coping was to over-exercise. So at any chance he got, he left to go on a bike ride or another run or go skydiving or whatever, anything, you know, I mean, it's, it's human nature to believe that, you know, happiness can be found somewhere out there, whether it's drinking or shopping or gambling, her horn or eating out, whatever it is. Right. So, you know, he just took a different path and yes, when my daughter started to have trouble, it ruined our relationship. We're no longer married, but we're very good friends. We haven't been married for seven years, but when he comes to Downey, Stacey or so it's a great friendship. He's like a brother to me, the kids love him. He's a wonderful man. And he's the father of my children. But during the time when this family was in severe crisis, by understood that I could not count on him. And I just I'm like, if I'm going to do this alone, I'll do this alone. Yeah. Speaker 1 00:38:45 A show identical to my mother's story. It's quite interesting that it continues to be a repeating pattern. Speaker 2 00:38:54 Yeah. And, you know, forgiveness is there and we've talked to her about it and all of that. And you know, I have total compassion for him and where he is and where he was thankfully in a different space today, not full circle, but, but getting there. Right. And so, you know, we're all doing the best we can, according to the spiritual condition we're in, in this moment. And that's all we can hope for, for each other and ourselves, right. Is to have the passion to understand that not everybody's in that same place that we are and it's okay. And it's okay. Speaker 1 00:39:37 I always wonder though, with, I feel like we're kind of in like the civil rights, 2.0 movement, there is a lot of education and awareness around disability is now more than ever, especially more than when I was younger. And I'm wondering if maybe having that awareness and understanding of what a disability is that it will make people less, I don't know, flighty when it does happen to them, but I don't know. Speaker 2 00:40:07 It's hard to say because we have this, you know, we, as a Western society in particular have bought into this idea that if we have more doing more and being more, we will be happier. And now I have to just turn on the TV and there's an ad of this beautiful woman is so happy because she's driving this particular car or somebody who just thinks they've got to go get another degree because that validates who they are. And so we as a capitalist Western society, and I know it's not just us are very much captivated by that perception that if we just work really hard, we'll be happy and we're missing the whole point because it isn't about that. Right. It isn't about, I need to look perfect and be perfect and have the perfect house and family, because really, I mean, if you, if you look at all the Eastern teachings and philosophies, it starts with suffering. Speaker 2 00:41:13 The first noble truth in Buddhism is that life involves suffering. And it's the suffering. That is the goal. It's the suffering. That is the teacher. Right. And so we can embrace each other's suffering, whether it's black lives matter, whether it's MD, whether it's, yeah, whether it's mental illness, it doesn't really matter. Poverty, homelessness, you know, job discrimination, any of it is suffering. Um, if we could embrace each other, suffering the compassion for one another would be there. It automatically, right. Cause I would understand my own suffering and therefore I would have the compassion for you. I think that's the other piece is we don't, we don't see the fundamental spiritual part of ourselves that is fundamental to I am you. And you are me. We are the same spirit. We're just, we just have a different covering. And in Sanskrit they call the body, the under Maya kosha, which literally means translated the covering made of food. Speaker 2 00:42:26 So you and I are the same, but our Ana, my koshas, our coverings made a food look different, but we're the same. If we were to take that off, our spirits be the same. And I think for, for many of us, we don't see that we see difference. We see separation the, the amount of intolerance in the world and even on the streets today shows you that. Right? I can't accept you because your skin's a different color. Why can't accept you because you in a wheelchair, I can't accept you because whatever, cause you have a mental illness, you're not like me. So you don't fit my mold. And it's, it's, it's really sad. It's really sad to see it. And I see it in my own family and it's just heartbreaking, absolutely heartbreaking to watch. But, but again, I have to go back to the compassionate side of me that reminds me that we're all doing the best we can, right. Speaker 2 00:43:34 Where we are right now. I'm not better. I'm just in a different place, you know? So I see both sides and I try to stay neutral. It's hard sometimes though it's really hard. Cause you know, my daughter is a total activist. She's out on the streets of Berkeley was complete opposite. Yeah. And I'm a pacifist, you know, I don't, I don't believe in war. I don't believe in killing each other because of your different religion or fighting over land. I don't believe in treating the native American Indians. Like they don't belong on their own property. You know, she she's out there screaming for rights, you know like she's right. And her perception is right. It's a perfect microcosm of what's going on in the media. It's the perfect microcosm of the Trump administration and the other conversation out there, the no immigration and you know, the borders are open or whatever. Speaker 2 00:44:43 I know those are very big extremes, but whatever's in between. It's a microcosm of those conversations and it all boils down, at least in my perception to tell them or the lack of tolerance, which is why I think there is discrimination for people with disabilities is we don't understand that that person, like my son, like my daughter, like you have so much to teach us about life that we are just like clueless to or sidestepping or are nowhere near present too. Right. We're just busy in this. Do do, do BBB, have half, have Excel, more spatter. You know, it's all about how I look and what kind of house I have and what car car I drive. And so what if I run you over on my way? Right? And that's the part that, that I would like to see change. And that's a really big endeavor, right? Speaker 2 00:45:48 That's that is a spiritual awakening, right? To understand that I am you and you are me and it doesn't matter what you've got going on. I can love you as you are me and feel your pain, you know? And in Buddhist traditions, they have a practice called Tonglen and it's completely contrary to what you think you would do. But when you go into meditation, you actually ask for the other, person's suffering, you ask to take it in and then you give them your love and compassion and happiness and joy. So it's completely different to somebody sitting in prayer, Oh please, Oh, please let me get that job. I need that too. You know, it's like, it's the opposite. It's very counterintuitive too. But I love it because it reminds me of this, this practice of understanding and remembering that I am you, I am the homeless person on the street. I am the person in the wheelchair. I am the person in isolation. I am the, Speaker 1 00:46:55 Through the lens. And actually not just like seeing the lens of someone else, but really trying to embody that and bring that in. That's it. And then is then the goal to, I mean, I understand that the next step would be to share the love is that to make it better or is it more so just an understanding and empathy? Speaker 2 00:47:19 What does that look like for you? Right. So, you know, when was the last time anybody asked you, how are you best suited to use gifts and talents to serve humanity? Oh, like never. Right. So we stopped and we closed our eyes and we took a few deep breaths and we asked ourselves that question and we didn't go looking for the answer. Right. Huh. And we just sat in the stillness and we listened. It will show up. Cause you already know the answer to that. You just think you do because you're you and me and the rest of us are wrapped up in this idea that happiness is out there and I got to go find it and it's not out there. It's all right here. It's right here in you. It's in that silence space. That's already in the always existing, but we're the ones who covered it up with texting and phone calls and TV and Netflix and the news. And we get ourselves all worked up and we forget that the real purpose in life is how are we going to use our gifts and talents to serve humanity while we're here for this flip of a time. Right. And so, yeah. Speaker 1 00:48:40 Wonderful. Yeah. It's Speaker 2 00:48:43 The other thing I think in you, you know, you asked me how, what really transpired for me. And what I really learned is I also learned that look, nothing in life is permanent. Nothing, joy is not permanent, but neither is sadness. And that beautiful Rose that's in bloom, outside my window right here in two days is going to be drooping and losing its pedal. You know, I don't look the same as I did 20 years ago, I've got wrinkles. I've got, you know, whatever aches and pains, right? Nothing about us stays the same and nobody is going to get out of here alive. So if the pain is not permanent, boy, that gives me, that gives me hope. Right. But if the happiness isn't permanent either, then I darn well better appreciate what I have in this moment that I have it. Right. So the idea there, I think we all think that it's going to last forever either. Speaker 2 00:49:50 I'm never going to change. I'm always going to be this way or they're never going to change. They're always going to be that way. It's just not the capes is we've even shown through scientific studies of neuroplasticity that you can change your brain and its wiring, no matter what age you are, it doesn't matter how old you are so we can change right now would want. Right. But I love what the Buddhist monk take that hum says, he says, he's great. Isn't it? You can't yes. You can't know what it's like. Not to have a Tuesday unless you have a Tuesday, right. To have the suffering in order to know what it's like, not to suffer. Yeah. And I think that's the more fundamental part of, you know, us as human beings, thinking that we're in this alone and you know, my way is the right way and you're doing it wrong. And my opinion is the correct opinion, having absolutely zero tolerance for anybody. Else's point of view. If it's not the same as ours, Speaker 1 00:51:07 Like these teachings have transpired into your son or daughter of this temporary feeling of suffering or pain or whatnot. Speaker 2 00:51:22 In some way, I know that when my daughter gets all keyed up, which sort of is a cycle and when she gets really wound up in her cyclical experience, mental cyclical experience, the world is coming too, right. It seems like everything is crushing. And for her in reality, it is. But I get to remind her at the same time, I'm reminding myself, this is not permanent and we're not going to be here forever. This isn't the way it's going to look forever. You're not going to feel this way forever. And hopefully I think that turns around and helps to ground her again in some capacity and sometimes not so wonderful. I think it's an experiential thing, right? Like everything in spirit spirituality, right? You don't, you can't just read about it. You can't just read the spiritual texts from some of the greatest spiritual teachers of our time and become enlightened. You have to practice it every day. You have to. Yeah, exactly. Definitely. And I like the word. Yeah. I like the word you used embody. Right? Cause it really is about embodying it. Speaker 1 00:52:43 This has been so fascinating. I'd love to take some of your courses because I've, I've myself have, you know, been up and down on a spiritual journey and done a lot of life coaching over the years and have ride some of take Nikon's teachings. I try to practice meditation as much as I can. And so I've always embodied that holistic lifestyle and mindset because I think it does benefit my own disability as well. And I do think that it helps slow down the progression because you know, everything, your, your physical body, your spirituality, your mind, all of that, they're all very interconnected. You're absent. If you're not on that plank, same playing field, all of them, it just can really just crumble. So I'm very much of trying to live that high vibe life and manifesting what you want and just listening for it and not trying to seek it right. Because you can't chase something that doesn't exist necessarily. So where can people find you? Do you want to give your plugs for your websites? Speaker 2 00:53:58 Well, yeah, you can find me really easily by Maggie and it's K E L L Y and or satsang And satsang is the Sanskrit word for a community of likeminded. People joined together in search of the truth. And so it's spelled sat S a N G That's my website for my meditation center. If you are in San Diego, when COVID decides to leave the scene, I would love to have you come and visit be gracias. It's a beautiful, beautiful place. Very peaceful, very, very nice. And then I teach meditation classes. I do life coaching, spiritual coaching, and you know, I do four weekly online zoom guided meditations as well. Speaker 1 00:54:50 Wonderful. Well, I will definitely be coming to you shortly to practice the meditation and the life coaching because my life coach used to be here in Atlanta. She ended up moving to different state and just because of that, it just kind of dropped off. And so it's been a year or two since I've had a, a real life, life coach. And I do miss it. I really do because I, and then I turned to podcasts. So I'll listen to a lot of pro Castillo, the life coach school podcast, which is very well known. I really enjoyed her teachings. Uh, I don't think there's as much as like a spiritual connection with it. And so it will be nice to, since you have three certifications of that spirituality, the Buddhist trainings to thank you there, you out a lot more just substance. It's just a different take on life coaching, then they're both great. And I'm sure they are so Speaker 2 00:55:47 Cool. Great. It's definitely a little niche, own little hybrid. I love what I do. I absolutely love what I do. I mean, people all over the world, so wonderful. Speaker 1 00:55:58 I bet it's nice now because everything's virtual, your clientele probably has increased to all different points. Yeah. Speaker 2 00:56:06 The world. I have a, I never thought I have one a while I have. Oh, well, Maryland and Germany. Yeah. It's crazy. Cool. Yeah. Wow. Appreciate virtual experience. Yeah. Fun. Well, I appreciate your time and having me today, it's been lovely meeting you. Thank you so much. Speaker 0 00:56:33 Thank you friends for listening. Please rate and follow this podcast or text card at (470) 588-1215 with comments and suggestions tune in next week for another disability topic.

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