S2E36: Soraya's Story Part Two | Talk Tracks

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site wide, with promo code [email protected]. That's r-u-g-g-a-b-l-e dot com, and use code tapes that check out. If you're looking to refresh your space, I really recommend checking them out. Hi everyone, I'm Kai Dickens, and welcome to the Talk Tracks, brought to you weekly by TTT Media. In this series, we explore the threads that weave together our understanding of reality, science, spirituality, consciousness, and even unexplained phenomena,

because every era has ideas once dismissed as impossible until someone was willing to

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Last week, we met Sariah, her mother Tasha, and her father Safi. This amazing family shared how

Sariah's undiagnosed condition has led them through many emotional and physical ups and downs. However, the spiritual side of their lives has been forever changed by unexplained gifts that Sariah developed, especially as her health declined. We'll hear more about these gifts today and how they forever impact the family. And then I think we should get like a really quick recap of like the first 10 years or something. Yeah, okay. Yeah, so I would say, you know, the first

three years of Sariah's life knowing that something was going on, we were on a roller coaster of looking for what diagnosis does she have, and honestly tunnel vision in like just fixating on what does she have, so she we can fix it. By age three, done every testing, realized we were not going to find an answer, came to a place of acceptance, but also a change of how we dreamed of her life, which is going to be a long life with a child, with a disability, with a lot of supports,

but that would lead a long, healthy life with her 15 subspecialists and her fourth airpiece per week and then at age 10, everything changed. And she mentioned fatigue, which is just such a like vague symptom in talking to her doctors over telehealth about her fatigue, her pulmonologist recommended getting a CT scan of her lungs. Like, let's just see what's going on. And when we went through the machine and the tech told her to take a deep breath, it was the first time that I did not see

any chess wall movement with that deep inhale. And I was like, oh, wow, this is something different. The pulmonologist was very concerned and felt like this was a huge change and immediately got us in for a sleep study to kind of just see how she's breathing at night. And it was then that we realized that she was indeed hypoveenolating, where she was unable to exhale that CO2. And that was directly not related to lungs, but actual muscle weakness. That was 2021 into 2022. And we

realized that now she has a progressive, neuromuscular disease. And with that, there's no cure.

“And with that, we know that the thing that would take her life is the respiratory component”

at that point, right, asked us what's happening with my body. And I think that's a very personal decision with a lot of families. And like, how transparent are you? And I think my husband and I went back and forth with it. But we really looked at it as at that point, we had given

her 10 years of therapy. And the one thing that we wanted her to always have is her voice and an

understanding of her body. And so we explained to her that she had this condition. And we tried to answer direct questions as we had been guided by her amazing medical team and her therapist. But then she said, "Is my life going to be shorter than expected?" And it was a very direct question. I do give a lot of direct questions. Yes, and direct answers. Do you remember this conversation, Sarah? I guess, like, I can remember just since I was in a relationship. I remember the same

“that we were aiming at. Yeah, I remember a little bit of it. Because you were 10 when you opened the Zoom?”

I was, yeah, I was 10. And so for you, Tashila, you didn't have a diagnosis still. We still did not have

asked your mom, is my life going to be shorter than expected? And how did you answer that? Well,

“we were guided, meaning my husband and I to answer direct questions. And while we thought we”

were prepared, because she was asking questions like, "What is the ventilator for?" And if I do more physical therapy, can I get stronger? And we said, "No, because your muscles are getting weaker." And then she said, "Well, how is my heart?" And so we could answer these very specific questions. But when it got to that question, we weren't expecting that. And so we gave each other a look, like some couples do, where we think we can communicate effectively. But in this case, we were not

effectively communicating, because he was giving me the look of, "Don't say it." And I was giving him the look of, this is a direct question that we need to answer. And before I could really fully contemplate his nonverbals, I went ahead and said, "Yes," and Soraya just started whaling. But I was like, "Yeah, I'm going to be confused." And that specific age, you know them? Well, I didn't know it. So, yes. The thing is, like so many couples go through stuff like this.

But not nowhere near the weight or gravity of that type of question, but where you're trying to communicate, you want to do the right thing, you've like, sent it to decide. Right. You don't want to feel shady in front of your kid by like, "Well, great, exactly." Exactly. And then the other thing that we weren't expecting, it's like she knew she would have trouble remembering it. So at Thanksgiving, she said, "Hey, you guys, at Christmas, we're going to have a conversation. We're going to have a

conversation about what's happening with my health." It was like, she was preparing us like you because she didn't want to forget that she wanted to know this information. So, because like, hair about honesty. Yes. But she wanted to remember the day because she knew that she would have hard time if it was like, tell me next Tuesday that that won't work for her, but she knows holidays.

“And so, that's how we had this time marker. But the first thing she did was call for her sisters.”

And I was not ready for that, where she's like, "Yes, mean, Lena, I've got news to tell you, Mom and Dad just told me something big." And then we're looking at each other. And yeah, we weren't expecting that. That was my instinct. And then it's okay. It's okay. It is okay. Because just like you wanted honesty, I think all people want honesty. You know, I think it's really important that you definitely. And I think it's bravery to share, as much as it does to

listen. I think it's more bravery to share. Yeah. And at that time, we had told Srey as older sister because she is very inquisitive. Yes. A lot of questions. She still does. She still does. And we also,

she also always was worried that we weren't being honest with her. So, it was one of those things where

like, we will tell you everything we know. But it's almost like, she couldn't believe that we didn't have any answer. She couldn't. She felt like we must not be telling her something if we're saying there's not a diagnosis or a prognosis. And so, yeah, that was like the thought. That was what I thought. Yeah. So, that was, well, what about four years ago? Yeah, four years ago. Yes. And at that time, I will say that while we didn't really talk about it a lot because we know there's so many unknowns,

her doctors had given us a prognosis of about two years. Okay. So, we had that kind of in the back

“of our mind, but we also knew that without a diagnosis, you don't really know. And that's what we,”

you know, stress to surprise. Like, we're not going to get hung up on timelines because nobody knows. Yeah. So, we're just doing the best we can. So, one of those powerful stories I've ever heard was that story when you were at Witzend and then you saw a white light comforting. So, right, and she comforted. Like, she's quieted down, right? Totally. I'm curious. Like, have you shared any of Sarai's incredible experiences to connect with the um, spirits or people on the other side,

with the medical community? And having gone to medical school and being very science and medically

grounded, like, how have you made sense of all of this? So, I will say that I have always been a bit

more open to things that are more existential. And I also, from being in the medical background, don't share that with anybody, because I find it to be where I can speak people out. Spook people out, but then also be judged or have people say they're crazy or try to challenge you. Yeah, I don't like to be challenged, but yes, when I don't want to really debate it, I just want to understand it. And so, I've always had this as like a, a side thing that I would never talk about.

intrigued about. I love astrology. I love these things. Whenever anybody knew of a psychic,

I would want to go to college. I love science. Yes. It's like a medium to share with you guys. Yes,

“that's what I'm all about. So, when it came to sharing with a medical community, that's a no.”

Not with anybody. However, what I was feeling is really safe with the hospice community. I do feel like that team feels very different than our entire medical journey. And I would like to think that that is true of all hospice care teams because of what they do. I am learning so much of this holistic approach, this idea of quality of life, and also the fact that they have a chaplain, that they have a social worker, that they have massage therapy, that they have music therapy,

it's almost like they already know that we need different modalities, that it felt like a very safe

space for me to start asking questions. And my questions would be, "Well, one is to explain to Sarai what a chaplain is when I tell her you can talk about spirituality, she started sharing about some of these stories. And what I noticed was no judgment. What I noticed was a lot of just nodding their head and just accepting. And so, I was worried about the reaction that would say. Yeah. And she just felt so comfortable talking about it, that then I started asking the chaplain

stories like this. Is this common, and she would say yes, but would not tell me more stories. And I want to know more stories, and so yeah, because she's very kind of like, kind of like, give you a study like, "Look, look, look at this, what is this like?" And I think it's a medical

“community. You have to use HIPAA where you're not supposed to share other people's stories. And”

so I think that they really stay true to that. But I will say as a parent, I like many parents that are looking for connection of what's happening with my kid, please tell me that there's somebody else that is able to do this or it is doing this. I just want to know if this is normal for what they see. And I wasn't quite getting that. So then when it was her physician, I asked him. And he's very evident-spaced and very thoughtful and specific with his words. And I'm like,

"I'm just saying psorias connecting. Do you see this happen with other children that you work with?" And he said, "Yes." Just one word he answers. And they said, "Do you feel like as kids get closer to death or as their bodies weekends that this connection gets stronger?" And he says, "Yes." And that was it. So that was, that was the conversation, but I do feel like that was huge. In the sense of I have a space that I can share. And I have a space where I'm not judged and it is

the medical community. So in that regard, that's as far as it's gotten. I have not thought of nor do I feel comfortable sharing with all of her physicians. And what is that about? Well, that's a

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My question that I want to know as a parent is like, this has to be happening with other

“kids, but I think what's tricky is I've also heard from our hospice team that many families”

won't allow them to talk about death. And so yet they're coming for these services, but you know whether it's their family values, their culture that they don't they don't talk about it. So I also feel like there's probably so much more of this if there was a space for this. I'm so lucky your parents will talk to you about it because could you imagine experiencing this and feeling like you couldn't talk about it? Yeah we saw that. I probably would say my bedroom would

be like, this is what's happening. This is what's happening. I'm going to start to yourself. Yeah my apology myself will help this. You feel like you can talk to your sisters about it too, right? Yeah I think that they have their own personal opinions about that, but I said they're open to it and like me and my sisters have a very like, I can tell them in these spiritual or they sometimes have actually felt spare child. And before, for example, I would say this person's

giving you a hug and I was like, do you feel it? And they're like, yes, I actually feel someone looking me. I don't like it was like crazy to me because like I was saying it and also feeling that they were having and I was like, that's pretty interesting. Have they been any more so I was like, that is she's gotten older? Yes. There have been episodes where we're kind of in a rough spot and it usually happens when all five of us are together and she'll start speaking and her sisters

while they definitely do know that she's connecting because there are times where we all look at each other and it's almost like this language is coming out of her mouth that's not language that she would use and it's about like love and it's about our purpose and we're like, okay, she's doing it and so there's been short episodes of that that have popped up. Most recently

“there was an episode where honestly, Soraya was really struggling in the reality of her life”

and it started out at the dinner table where she was sobbing and she was saying to her sisters and there has been a big strain in the relationship as she is getting closer to death and she's talking about death. They do not want to talk about that. I can definitely get in the

and my little sister decided to go upstairs and go to their bedroom so they kind of like leave

and so there have been instances where this has been happening and so sorry. I would say like word, I'm definitely going to make this part of it. We're not really close, but we're trying

“and we're doing everything that we can and then this story I think is what kind of started the journey”

of trying to make that better and it was where you were sobbing and you were like I am losing everything. I am losing my ability to walk. I am losing my ability to eat. My mouth gets tired when I'm chewing. I am losing everything and I only have my family and now I'm losing my sisters and she is just

sobbing. I would say I'm a very heavy emotional person and then as she is sobbing, the sisters

tried to go leave and we say now we need to come together. Let's all sit in the family room. Let's just like kind of hash this out but what happened when we transitioned rooms is there was something else that happened with Soraya where she was like you guys I have a contract with you and our contract is of love. I was meant to be here with you and our contract is love. I cannot leave until we hit that love and right now we're not there. We are not there and then she said well I have a

contract with Ohana which is this cat her cat which is this we call it her spirit animal and she's like

Ohana and I we are from the same universe. You guys we have to get this mission and the mission is

love and we are not there and she said I want you all to know that it is not a circle of life. It

“is a tree of life and with this tree of life is mother nature and if you don't believe me look at the”

window and in that time and it is like 530 in the evening and both sisters look at the light and they start crying because they realize like she's serious yeah and it was like whatever disgruntled anger that they had towards her with like here we go again went out the window and of course in this light is Ohana the cat just literally laying in the sun being like that's right I'm with her like that's what it felt like that there was this moment and she goes through

and she goes through each person on what they need to work with and she's like yes mean you need to quit being hard on yourself you were feeling so guilty for the way that you have treated me know that you are the best sister and I love you like mom you are too stressed I know that you're

“a good mom you need to know and it's like everything that our interferes and she is going through”

each person and she's like we are here for love and she said I am working with the angels and the angels work with God and I'm trying to convince the angels to keep me here because I'm not done I need to get us to love and I don't know what they're going to decide because that's not up to me but I do work with the angels and I also want you to know that all night long people are asking me to help them they're asking me to help them all night she said some nights I don't even sleep

they want me to help their pets they want me to help their sick uncles they want me to help all the people all day I'm exhausted I'm exhausted for everybody I'm trying to heal I am trying to heal everybody and it's so tiring and you know what else right now the words that are coming they're coming from a white ball of light the white ball of light is swirling around me and it's almost like I swallow it and now I'm just speaking from a place of light wow when you talk about

at night like hearing all the voices I mean do you think those are like the prayers of people who are here do you think it's people from the other side wanting you to interfere with people who are alive I think like the the other side of that like people who have passed away I say so then I'm just need help or just they need something to be healed and I think I still have that now yeah which I don't talk about as much but I would say that it's there and when you

when you talk about like a soul contract what does that mean I think it's more like of a goal in that contract it's like emotionally I think that's what I need from them

beautiful did everything change for your family in that moment in that moment yes you know it my husband he's pretty skeptical about these things and he was sobbing and he looked at

yes me and lean on he said listen some people never have any experiences like this this could be a

once in a lifetime experience of the other side telling us this is what we need to do it is time to set everything aside and just love each other in the time that we have anytime you get frustrated but just remember this moment that you are literally getting divine guidance on what we need to be doing in this life and so it is just been serving as a reminder and then my question for

“Soraya was you know the next like the next image you remember that she's like yeah”

because I'm like was this like a transient state was she and she's like oh yeah I remember the whole

thing I'm like so people do come to you at night she's like oh yeah and I'm like and like she said

like she doesn't talk about it all the time but surely people are now asking her about this right right exactly and as Soraya has gotten more weak in her physical body she has asked a lot of questions has asked to meet spiritual leaders but then also when she stopped going to school she watches a lot of screens but she would gravitate towards psychics mediums like ghost hunters and I'm like doesn't this freak you out she's like no and then she's like this is what I'm

going to do when I grow up and I was like what do you mean she's like well I can already do this

“but I just need to like learn the way that they're doing it and she's like these ways that they're”

she's like mom everybody can do this but their ways are just like a different way of doing it so she's like my way is not like their way but I can like I can work on the way that they do it so that way I can do that too and again it's just like a different way of thinking about things

that I had never thought of for example when I started listening to this podcast and we were in season

one and there wasn't a season two at that time and I was like Soraya I am listening to this podcast and it's up out children who have autism and they're nonverbal and there are these connections that they have with their caregiver and I'm like what do you think about that she's like yeah mom everybody knows that and I'm like what she's like yeah they all can do that and I was like no but they like communicate with you know with each other she's like yeah like she was just so

not impressed but anything that I was saying meaning like like reading minds did not shock you that felt no she's still like yeah like what's it like and she said every kid has super power so it's not necessarily that one person has magical powers but that any child that was born with any type of neurotypical difference she feels can do something like this and she also has made it clear that people have different skills in different ways that they connect but we all

could does that sound right Soraya my arms holy correct on the details and is it mostly people that are related to your family in some way like ancestors and loved ones that your family knew or is it obviously uh Chloe but came and so it sounds like other people come but yeah it's kind of like all of it's like grandma it's like it just comes when it wants to come like now it's like all different she all different people yeah it takes a little bit more um it takes more time because

up to like focus what they're saying focused what they're trying to do and all that kind of can you see them or is it hear them like for you I I can see them but I don't know what they like specifically look like or what they're wearing but I can just hear by voice and it kind of connects with like a little bit like my brain can read it or just by hearing it it's very different for me like it definitely has helped me and like when I talk about it I'm like I hope I'm not

“sticking yet but I have spirituality like I'm very open to talk about that because like I think”

not a lot of people talk about it when I think they should and your mom said that at one point you've wanted more like I know it's really cool I know I'm so sorry really cool I told you that already but I'm just so proud of you yeah my mom says like some is a lot to be proud of when you said that you wanted to kind of gain more information or like learn more but what did

I think I would call it like a spiritual journey I think that it was like when I became the child

“and I think as I got older I think the more in tune I am and I get to learn something new a”

little bit every day that I get to experience it like who do you learn it from I think I learned it from like my instincts and myself and how whatever habit like whatever the spiritual it wants to show what's why or whatever technique it does I'm gonna do what I think is easier for me or just something that I can like make sure that like okay I'm talking to this person I don't know this person but I'm gonna just have a

conversation with it and I sometimes talk conversations but like not like I do it sometimes but like as I talk to them and I'm very like unfilcus of like the way they're speaking at or what they're interpreting so it's so interesting because you're plugging into something it sounds like yeah I'm very like into and can I share one thing that kind of really surprised me in what she's saying which is in the line with what you're saying is she had told me once we tells her I have

that her gift is her ability to feel what other people are feeling that she has a way to like read when somebody's having a bad day or a good day or a vibe you could just read real people's

emotion yes and one day she's like you know mom you always think that I'm saying the right thing

but she's like it's the angels that put the words in my mouth that had me say it and so when she's talking about I'm learning from something and I just go where they guide me it is an example of that where I don't know either but I'm like how do you how do you how do you sense or know that I'm

“having a bad day or how can you tell I think I'm stressed I say body language or they're face”

emotion or like if I could I just sense by energy what does that mean I think a very good example

was when I first met one of my friends her name's Grinney like Fremulta and I saw her struggling

beginning very emotional and I was like there's something going on whatever is I should just go front with this person so this is a worker at Ulta she is shopping like and she's talking about visualizing somebody looking like they had a bad day that works there yeah this is the first time she's ever even met this person I don't know this person I don't know the shop and she's now buying this girl that she's sensing is had a bad day and I just go up to her and I'm like are you

okay she was like well I'm kind of be overwhelmed because I'm moving and a new apartment and I was like hey can I give you a hug and I get that person that hug and I was like we could be friends you know like best friends and you know like I'm here winning me and I just do that I'm very I buried I've

“very big in things who I want to be friends with who do I not want to be friends with I just I think”

it's depends on what I feel but it's also like is that the right person in Courtney and you guys are still best friend still best fun I still have a full number yes and Courtney actually you know share later with me that she had was struggling with even a lot more than what she had shared yeah how that moment meant so much to her that then Soraya and Courtney carried on their friendship so she would come over spend time they'd go to my house yeah lunch dates and your

Courtney's in her 20s and so maybe not a typical friendship but I feel yeah I have a lot of like adult friends yes yes which may not be very conventional for this pediatrician mom to say but Soraya has taught me to think outside of the box and so Courtney had twins recently and one of them had a

then she missed health kid then when she sees the healthy kid then she misses the sick kid

but do you know what she says yeah I'm so glad I've met you Soraya like you're yeah she always says

positive things about me yeah like she you helped prepare her for this life and now she's a part of our life definitely and it's a sweet story yeah you and Courtney are lucky to have each other

“definitely and it's for I think it's very good to have friends of all sorts of ages yeah definitely”

she's like last year for her birthday I don't know where she's like I want to spend time with a drag queen I love it and so it's like she wants to be the voice for the underdog okay and the underdog is anybody who has been on the outside oh yeah and she likes to know like so what she wanted to do with the drag queen is not a show she said I want to know like the struggles of their life and like how

did they still like find their passion and like what yeah and then I want to go do makeup so there's

like that human experience like she has this like profound thing that she says and then she's like and then we're gonna go to altar I love that and I think it is true though like if you've been other or marginalized or a fortified for your belonging in any way like I think if you're at least a bit of an older soul then you relate to all the trials of everyone else that's it we have to start to wrap up so as of today have you gotten a formal diagnosis surprisingly we actually did

get a diagnosis very recently and you know here we've been 13 years really coming to a place of accepting that she wouldn't have a diagnosis and loan behold the lab at the NIH did find out that she has a gene called tau k1 it's called tao k1 gene deletion and this is a very rare condition well she is one in 50 cases worldwide but for psoria surprisingly she's the only one out of the 50 that actually has symptoms of a neuromuscular disease and so while it was very exciting to get the

diagnosis it was also really hard to accept that her medical symptoms are more severe than anyone else's and I think she's she's kind of bummed about for genetic diagnosis so it's it's she's bummed because we at this point can't do anything with it but in talking to the scientists that are behind it they're like don't give up hope like while the science doesn't exist yet for psoria the possibility

“is there this just takes funding and the only way that we can even look into a possibility is”

if we raise like millions of dollars to put into the research but the research exists and the people are there we just need the funds so for all the 49 other cases of what psoria has people can go get gene therapy and hopefully have we got much more productive life there's actual treatment available in the sense that the science does exist the funding is not there and so they all have the ability for potential gene therapy and the science and the scientists are there but the funding

has not been covered yet and so that is where they need help wow and how much you think would like

help get this just X minimum three million dollars okay I mean we're talking millions of dollars

and that is just due to how much goes into thoughtfully doing research on humans you want to make sure that this can be done safely and in order to do that we need funding so the research can be done yeah in case there's any listeners who want to fund toward this research and hopefully psorias you know gene therapy which would be a miracle for your family is there a website where they can go donate or is there anything like that that's out there yes currently there is a researcher at

University of Washington and we have her website oh okay so I was just handed where people can go to donate it's together dot uw dot edu slash campaign slash t-a-o-k one we'll also put this in our show notes and on social media and that type of thing thank you all right awesome what final thoughts do you want to add psorias or things you want people to know or understand or wisdoms you

“have acquired I think that special inch should not be meet funded or judged or looked because they”

really don't know what they're going through yeah and maybe we talk about this again you put a note on your wheelchair and what it it's a and what you want people to do like even if you're scared or hesitant just do it because it just come up and ask you yeah because like you don't want to consume what they're thinking or put their perspiring or put their talking about yeah psorias do you want to say anything to your sisters who might watch this and I'll say I miss them

million toward this I mean I could save or save it could save lives and it would be the foundation

“to save so many people not only like psorias but this really sets things off for anyone with”

a rare disease this is not just about one gene this is about the possibilities that are there for

so many rare kids yeah awesome University of Washington's doing the research yes so cool doctor

“smita yada all right wonderful doctor smita yeah we're coming for you we're going to make it happen thank”

you awesome all right well thank you for making the way all the way from Cincinnati yeah yeah that's it for this episode of the talk tracks but new episodes will be released every Wednesday so stay tuned as we work to unravel all the threads even the veiled ones

“that knit together are reality and please remember to stay kind, stay curious and that being”

a true skeptic requires an open mind to dive in deeper subscribe to our backstage pass by visiting our website with it you'll unlock access to bonus content like telepathy tests ask me anything interviews with myself and guests you'll be able to enjoy the podcast ad free connect with other members on our telepathy tribe discord and here and see exclusive content from the telepathy tapes vault visit our website at the telepathytapes.com more info on how to

subscribe to our backstage pass thank you to my amazing collaborators producers Katherine Ellis and

Selena Kennedy technical directing audio mix and finishing by Jeremy Cole opening and closing music by Elizabeth P.W. and original logo uncover art by Ben Condor design I'm Kai Dickens your executive producer writer and host.