063 Breaking the Silence: Amee's Epilepsy Story

I sit down with Amee, a courageous advocate who has spent decades living in the shadows of epilepsy. For years, she battled feelings of shame and isolation, hiding her condition from friends and family. Now, Amee is on a mission to shed light on her journey and dismantle the stigmas surrounding epilepsy. 

She shares her personal story of struggle and resilience, the challenges she faced in seeking acceptance, and the pivotal moments that inspired her to embrace her truth. Amee discusses the importance of raising awareness about epilepsy and how open conversations can foster understanding and support for those affected by this condition. 

Amee’s Instagram handle @behindthebindis

Transcript

UNKNOWN 0:00

Music.

SPEAKER_04 0:03

Hi guys, Anika here from Multispective. I'm here to share with you a new episode where I interview Amy. Her personal journey, however, is centered around her epilepsy. She has only just recently started sharing her story and she's at a place now where she's drawing in people from all around the world and hearing stories about epilepsy and learning about epilepsy in ways that she never ever thought she would have. You know, listeners, if any one of you is going through epilepsy, just remember that it looks different for everyone. Listen in This episode could be really informative and useful for you, and it might actually be the step towards your own healing and recovery as well. So really informative, very emotional, very vulnerable, very raw. I took away so much from this, and I really hope that you do as well. Amy, welcome to Multispective. I am so excited to have you on the podcast with me. How are you doing today? Very

SPEAKER_05 1:04

well. Thank you for having me. I'm excited to share my story and whatever else is with the world.

SPEAKER_04 1:10

Yeah, I do. I do actually think that you have quite a great, you know, inspirational sort of story and message to get across to our listeners. And so, you know, I think there's going to be a lot that we can take away from this, perhaps something that's not really talked about as much as kind of, you know, we hoped it would. I don't know whether there is like a stigma around this kind of topic or what, but I think this would be a really good Yeah. Yeah. I am going to come back to this a little bit later to ask sort of like the reasons behind it taking 35 years for you to feel comfortable to share your story. But I do want to sort of like give our listeners a little bit of insight as to what your journey is, so what your story is. So perhaps you can start way, way, way back when you were young, when you were a child. What was your childhood like?

UNKNOWN 2:19

Yeah.

SPEAKER_05 2:20

So, I mean, just a normal childhood, whatever normal is defined as, right? I grew up in a family of five and grew up in a really small town. And my first seizure, and so I guess having one seizure is not defined at that point as epilepsy, was at the age of eight. And I was really attached to my parents and I was sleeping in their bedroom in their bed. And so I was lucky that they were right there next to me. They called 911. We had the paramedics. They took me in to do all the testing. Every test I've had has shown up as non-conclusive. And so we've never really found out much information prior to a recent study, but we'll get to that. And because we were in a small town, the closest pediatric neurologist was about an hour and a half away. And so we set up an appointment with her. And we got in and went through the motions of, if you're familiar with epilepsy, we'll start with that, I guess what it is. And it is basically abnormal firing of neurons in the brain. So at a certain point, there are neurons in your brain that abnormally fire. Now there are up to 60 to 65 different presentations, and they all have an umbrella term of Right. So it can look different in one person as it could to the next. And we're all categorized the same, unless you kind of understand a little bit more. And then if you say, I have focal aware, right, that's my subcategory of epilepsy is focal aware. There's tonic-clonic, there's complex. And so we can go into all the details. But the point being, I was diagnosed with simple partial, which is now focal aware. And I was diagnosed with simple partial. And the medication or the treatment, I should say, was medication. on things and I was very fortunate so we're taking this medication and nobody had to know it was just not it wasn't no I was told not to talk about it it's just nobody had to know and so at that point in time I don't really know why it wasn't talked about and it just wasn't and so I go through even all of high school even into my college years and i was socially drinking at that point and staying out late and living your normal college life i did well i graduated i got into dental school so i was i'm in finished graduate school and so i've done all the things besides talk about the condition and that's yeah epilepsy itself is firing of the neurons abnormally that cause for me Kind of

SPEAKER_04 5:52

twitching in my fingers is where it starts. was getting very, very severe anxiety. And so he actually went in to check for anxiety, to which they did a brain scan, and they found out that he had been having seizures throughout his life. And it just was never something that he was even aware of. Now, do you know much about this? Is this something that is possible? Are there people that could potentially be having it that just have zero awareness of it because it just doesn't present? Did it present for you? In

SPEAKER_05 6:46

that situation? No, my presentation was always a presentation we were having a seizure

SPEAKER_04 6:52

how many times did you have to sort of have an episode is probably what you would call it for you for your family to say okay we've really got to do something about this now and really check it

SPEAKER_05 7:04

yeah so medically defined i think it's two or three seizures before they're now you have a condition right so there is a medical number of seizures you have to have before they'll diagnose you with epilepsy if it's just one time it could be febrile like high fevers in children and that's just a one-time episode and it's done and it's not a diagnosis but after you've had a couple then they really are like okay now this is a diagnosis whether the tests are conclusive or not and they and they start treatment

SPEAKER_04 7:37

which the

SPEAKER_05 7:37

first line of treatment is usually medication right

SPEAKER_04 7:41

um is it one of those things that they would sort of need to experiment with or is it simply like knowing exactly what category of of epilepsy is yours falls into. And so therefore there's already certain treatments for, for it. How does that work?

SPEAKER_05 7:55

It's a very gray area and there are no correlations between you have this type of seizure and okay, you have, you need this medication and we're good. You know, everything's going to be just fine. I wish, and I'm sure the entire community wishes it were that simple, but unfortunately it's not. And it's trial and error of, okay, we're going to try this and we're going to see how it works. And there's a lot of side effects that come along with these medications. So then you're weighing like, okay, these side effects, are they outweighing the treatment and how it

SPEAKER_04 8:33

presents? Right. Can you tell me that with regards to your situation, is it... Was it, did you ever find out, was it triggered by any external or was it, were you born with it? Is it genetic? Where does it come from? No

SPEAKER_05 8:49

idea. So idiopathic, basically. No genetic connection, no injuries, brain injuries or accidents, no falls, just idiopathic. No, they just haven't been able to, I'm one of the lucky ones.

SPEAKER_04 9:05

Right. Yeah. It was just a one-off. In a way, I think it's It's good when you have sort of that diagnosis and you know exactly what kind of treatment works for you and you've kind of found that sort of treatment for yourself. But in a way, it can be kind of a bit unnerving as well, like sort of not knowing, hey, is there certain things that might trigger it? Are there certain things that, you know, can I pass it down to my own kids? And like, you know, how do I sort of decide what path to take in my own life?

SPEAKER_05 9:35

Right? Yeah. And it's very difficult because all of those are real concerns. And things that we've thought about or I've had to come across and think about, and there is no answer to that. And that's the journey. Right. Yeah.

SPEAKER_04 10:36

And when you found out about it, you were fairly young. How different was it back then in terms of how much we knew medically versus we know now? And would it have been different if you found out about

SPEAKER_05 10:51

it now? I don't know that it would have been different. There are more and newer medications that are coming out all the time and newer advances in technology. But at that point in time, I think we were given the best treatment that we could. Right, right.

SPEAKER_04 11:36

Interesting. What would have happened if... you potentially didn't seek out treatment at the time that you did? I

SPEAKER_05 11:47

think you would just wait around. And for myself, it would have happened again. And it would have happened again, and possibly more frequently, unpredictably, which is still the case, but just more frequently. It is something that definitely cannot be left untreated in my situation. Now, as we talked about, the other case, he wasn't aware right so that makes me go back to how many cases are people not aware that this is what is going on and there is treatment that could make it better and that's just a world that I've learned because to me there was never that correlation you know you go in and they're not like telling me about the other 100 patients that have come in and this is how it's presented you only know what you know and I've learned quite a bit since I've started talking about it.

SPEAKER_04 12:46

Yeah, I can imagine. Almost it's like you kind of started to form a support sort of community around you. And the more stories are being shared within that community, the more you're actually learning that, hey, that's so much more complex than I thought it was going to be, right? Absolutely. What part of the

SPEAKER_05 13:03

brain was affected for you? So since it starts on my left side, we knew it was the right side of my brain. Since we knew it was partial, we knew it was isolated to one area. We Never found anything on testing. So we were just treating symptoms until now, right here. I go in, I tell them my symptoms, here's your prescription, which is normal protocol. So this is not going against what the protocol or what anyone would do. I think a lot of people with epilepsy have normal testing and that's what makes it so difficult in, well, gosh, I went to the doctor and everything was fine. I went and had this test. I stayed there for X number of days. I got this test done. That was 45 minutes then nothing nothing nothing there's just they can't see anything so they are treating symptoms verbally that i'm telling them um and that that's really what makes it very hard

SPEAKER_04 14:00

wow You would think though that like MRI or maybe like, you know, from what I remember reading once as well about, they did an MRI scan on someone's brain and they were actually triggering seizure. And they would trigger seizure to see what part of the brain is being affected. And that would sort of, then they would be able to treat definitively, hey, this is the part of the brain that is, you know, is having these seizures and this is how we can treat it. Right.

SPEAKER_05 14:27

I've had multiple MRIs, multiple EEGs and EEGs were there's electrodes attached to the brain and in all the different areas that if you're actively having a seizure, it does detect it on a monitor. I've gone in where my triggers, one of them was lack of sleep. So they said, stay up all night, come in for an MRI the next day. And I remember doing this as a younger child and nothing. But I'm like, of course they didn't catch anything. Even your triggers, they are not necessarily what you're going to see when you go in right it's like it has to be that perfect timing and that perfect storm to hit to where you're like test done and this happened and lo and behold I'm sure multiple stories is you had the test nothing showed up and you go home and three days later and you have a seizure and it's just unfortunate it makes it really it's frustrating and it makes it difficult

SPEAKER_04 15:20

hmm yeah exactly oh that's interesting

SPEAKER_05 15:23

What was some of the other triggers for you? My first one was lack of sleep and stress. Now, lack of sleep, you can control, right? Get sleep hygiene, go to bed at a certain time, wake up, make sure you're not stressed. I'm still trying to figure that one out. I don't know exactly what that means for me and what that, but your body just kind of knows. I'm speaking for myself, but I kind of know when I have too much on my plate and I need to step it back a little bit. And I'm very aware of that, especially in the last year so where it's been a little more prominent in my life that I've had to really tune into things.

SPEAKER_04 15:59

Right. Yeah. I mean, especially with your career and, you know, having a family of your own and everything. I mean, it's a busy life. So I can imagine that. And for you, it's such a physical kind of response as well. So you have to be extremely mindful of that all the time. Yeah, I can imagine that being

SPEAKER_05 16:16

really difficult. I plan things out with a certain amount of energy to allocate. And then I'm like, you know what? going to be good. So we're, we're finding a system lifestyle now than it was, you know, I would say last year, but that's okay.

SPEAKER_04 16:33

Yeah. That's amazing. So you said that you started medicating and you said that everything was all in the clear. Have you lived basically seizure-free life since then? Or have you had any sort of like scares or anything happen in your later years?

SPEAKER_05 16:51

So from the age of eight, I was on one medication. And then I did have a period when I was in school where I was like, God, this is just flaring up a little more than I wanted to. It didn't stop me. I still didn't have to tell anyone because it wasn't stopping me from doing my day-to-day. Mine were nocturnal. So even now they're typically nocturnal, which is at night. And my day-to-day, as long as I control that stress and my limitations and sleep and things like that, I can get a feel for it, whatever that means. Now you put someone in graduate school and tell them stress is a trigger, and I really don't know how to do that without, you know, it's just a little bit harder to control, but it was still manageable And we came back in and we had a reevaluation and we kept everything the same and it leveled out. And so we were probably looking at maybe one a year, two a year still. Like I have focal aware, so I still know loss of awareness and fairly predictable as far as like, okay, this is a stressful week. Like we're just going to have to have our radar on. And I wasn't on emergency medications or rescue medications then which was good. It was pretty

SPEAKER_04 18:07

controlled.

SPEAKER_05 18:35

Yeah, absolutely. As far as that goes. from here it's just like okay and i'm always aware i'm aware of the entire time so i can talk i can you know and it's gotten up to like my arm and it stopped and in that sense i find myself very fortunate you got to find silver linings and things and when you're aware of it it's very different than when you're not so i do appreciate that i can tell the signals and i'm awake and i'm And I can tell my husband like, hey, look, this is going on right now. And he'll just come and sit next to me. Or it's typically at night where it's nocturnal. And so I'm fortunate that I always have someone with me next to me at night. And so it's

SPEAKER_04 20:25

been, you know, it could be worse.

SPEAKER_03 20:37

the pain of who I had become was way greater. So you have to choose your pain. And I think at that point, I just was so desperate. I had reached that line in the sand moment where I was like, who is this person? I just really just didn't love myself. I just really was so frustrated and just disappointed in how my life had turned out at that point. And so I think I didn't even think about the back pain being a limiting factor. I just needed, I just felt like I needed to do something and I needed to honor my body.

SPEAKER_00 21:08

Hi everybody, I'm CK. In 2019, I herniated a disc in my lower back and I experienced all the physical and emotional trauma that comes with a severe back injury. Fear, depression, PTSD, and even guilt. I stressed over the decision about getting surgery and I let all the negative opinions that everybody else had freak me out. I scoured the internet hoping to find somebody's story that I could relate to. I can thankfully say that today, over five years later, I feel amazing. But I couldn't just move on with life knowing that there are currently people in that pain and dealing with that sense of loss. On Bed Back and Beyond the podcast, I talk to people who've recovered from a herniated disc with surgery or without surgery. I've spoken to someone who found her purpose after a near fatal car accident left her paralyzed

SPEAKER_01 22:07

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And someone who found their voice after a brain injury tried to steal it from them. I talked to experts I am passionate about bringing you personal stories of positive recovery so that you can find the inspiration you need to overcome an injury. If you are injured or have a loved one who's injured, this podcast is for you. Bed Back and Beyond the podcast airs every Thursday on YouTube, Apple Podcasts, Spotify, and YouTube. and many other podcast hosts. Please subscribe and help get the word out.

SPEAKER_04 23:17

So what happened then? Say if you didn't act on this and you just continued to do whatever you were doing, say you were in the middle of a place and you couldn't leave it and you could feel it sort of rising, what extent would it go up to?

SPEAKER_05 23:32

When I was younger, I didn't really have those situations, I guess I would say. That's been more when I was changing medications to have my children, which was planned And then just lately, and I think lately it's just hormonal related and we're just right in the wave.

SPEAKER_04 23:55

Right.

SPEAKER_05 23:56

That's so interesting. That's what it's come down

SPEAKER_04 23:58

to. Yeah. Why did it take you this long to decide to share it with the world today?

SPEAKER_05 24:03

Because it is still a stigma. I don't know that everyone would agree with me on that, but I think a lot of the community would agree with that. And I still think you use an umbrella term when you talk about the condition. It's still I have, there's only one word to describe it, epilepsy.

SPEAKER_02 24:21

And

SPEAKER_05 24:22

what comes to people's minds is the typical presentation of it. And I think that in and of itself, it scares them. Because do they want to be around you if it happens? Do they want to, you know, they just, they don't want to carry that burden, I felt like. And this is just coming from my perspective. So I think people are good. And I think if my friends knew they wouldn't feel a burden, like a burden. If my family knew or my, you know, my extended family beyond my immediate family knew, they would never feel like a burden. So I've never experienced that. But I held it because I never wanted anyone else to carry my stress of a burden.

SPEAKER_04 25:03

What was it that made you decide to start sharing it?

SPEAKER_05 25:07

It just wasn't, one, it wasn't as controlled. So I was starting to make different decisions to where I would start to be, say, you no to like a dinner that was at 9 p.m. Okay, why wouldn't you come out at 9 and you can be home by 12, which would have been fine. But now it's just like, I want to really focus on my sleep, right? But I didn't want to say that. It was like, no, that's a little late. I'm going to pass on this one. And again, these are my closest friends. And had I just said, guys, I'm tired, which now I have, you know, openly or I openly speak about, I have the best of friends who call me and they're like, we're going to have dinner by Ami's house at 530.

SPEAKER_02 26:31

I

SPEAKER_05 26:31

mean, I could have had the support my entire life, right? You don't have to do that. But you realize people do things without saying they're supporting you. And so to all my girlfriends, if they watch this, like I really appreciate the support that I see that is unspoken.

SPEAKER_04 26:47

Yeah, sure.

SPEAKER_05 26:51

Even at even at work. Everyone's just kind of picked it up. They're taking I've taken a step back, which has been good for me also. I love that.

SPEAKER_04 27:03

Yeah. And it's unfortunate that sometimes, you know, I think we're so bogged down by, you know, what are people going to think that we kind of hold back on sharing something. And it's so important because, you know, those little stresses, it's important that people know, hey, this is pushing past my stress level. And I'm going to just be absolutely raw and vulnerable about the situation and just say, hey, look, like, that's going to be too stressful for me. I need to just draw the boundaries. So boundary setting becomes a bit of an issue. And especially harder when you can't explain it because then then it's like it's almost like the judgment is coming anyway you know

SPEAKER_05 27:41

right and when i found myself doing that with my support system for everything else in life i realized why why am i doing this and who else out there must be doing this and what example am i setting for my children and so it really had me take a step back and evaluate you know there's there's so many different angles to come from and i put a lot of thought into when I was ready to talk about it, if I was ready to talk about it at all. And I don't regret having to talk about it. If there's one person out there listening today, you

SPEAKER_04 28:16

know, there's support out there. their own journey with other people. Because again, just like you mentioned, the day that you decided to share your story and reach out to communities, not only was it helpful for you in finding people who could support you and actually realizing, yeah, actually, my friends, my family, everyone is supportive of it. Not one person has been judging me except me, but also you learned a lot about the condition in itself. And so for anyone listening, going through anything, be it epilepsy, be it any kind of mental health, physical health, conditions or just a feeling of loneliness, that there is no shame in that. And the stigma oftentimes is held in our own kind of beliefs or maybe like our own kind of head, right, in a sense. So can you just walk me through a little bit about that process of what was going through your mind? How did you start kind of deciding to go down that path of sharing your story? And just walk me through those steps.

UNKNOWN 29:28

Yeah.

SPEAKER_05 29:28

Yeah. So I was put on a second and third medication last year and those come with a lot of side effects. So now it was more than just the condition. It was the side effects of the medications, which were, you're just really tired all the time. You're, you know, just brain fog, just a loss of memory. Like my short term memory. I feel like I couldn't remember what I said five minutes ago if I said it. And I think that's part of my age as well, but, um, You know, there were just things where it was just nice to be able to talk about and be like, guys, you know, you're going to have to remember this because I'm not going to remember it in 10 minutes. So it's just, you know, I kind of joke about it now a lot of times. Don't put me in charge of that. You know, I'm not going to remember it. And just being open and honest and raw about it has been helpful for me and taken that load off of me.

SPEAKER_04 30:22

Who was the first person that you told outside your family and how was that conversation for you?

SPEAKER_05 30:26

I think when

SPEAKER_04 30:27

I said

SPEAKER_05 30:28

online I think I was just like, go big or go home. It's very hard to explain. And so now I can use this as a platform of just education and education to extended family and friends and just anyone listening who may have family or friends or family, you know, extended family that they hear the term, it presents in different ways. And I hope the person with the condition is able to explain their version of the condition. Right.

SPEAKER_04 32:00

Yeah. And also in a sense, the way that you might be helping other people is as well, like someone may be watching this and feeling like, you know what, like there have been certain things that have been occurring to me, but it never occurred to me that it could be this, right? Yeah.

SPEAKER_05 32:15

And this feeds a lot into more than just epilepsy. I think my goal is more than just one condition. There is a lot of mental health, depression, anxiety, and a lot of that is very prominent in our generation and this next generation and having two kids it doesn't have to be any condition it can be any of those conditions or anything and

SPEAKER_02 32:42

you

SPEAKER_05 32:42

want them to be able to be open to talk about it because you can't receive the support you need until it's talked about so for me it just happened to be epilepsy but it's a broader picture than that as far as my mission and my why kind of goes it's more what Why are we holding it in? Because we think someone's going to judge us. That's a self-thought. You know, I did that to myself. I didn't even allow that to happen because I hadn't said anything.

SPEAKER_04 33:14

How much was it sort of weighing down on you, not telling people?

SPEAKER_05 33:17

This last year, when the year started, it was just hard. You get more tired about hiding it from people than you do the condition. And I realized when that is what was happening, why am I doing this to myself? Like that's self-sabotage. That's almost like giving yourself the stress that your body really needs. people not understanding stigma. And I was like, okay, well, all of those I could use as an educational tool, right? If you want to know more, pick up the phone and call me. I'll tell you more. We can talk about this. I would love to educate people. Maybe there's someone you know. Maybe there's someone you know who isn't talking about it. And this is how ways to support them. And the second one was professionally. What are people going to think? Everyone knows their own limits.

SPEAKER_02 34:11

And

SPEAKER_05 34:12

I'm finally at that stage in my life and I think maybe me or everybody when you get to this stage in your life and you're just I don't this isn't about anyone else right this is my journey and this is what it took for me to talk about it

SPEAKER_04 34:27

do you believe though because I mean you know you mentioned you mentioned earlier as well and I wanted to just hang on to that for a second that you have been working in this job for some time so you sort of achieved a certain level of you've been in this company there is a level of trust your team knows you, your management knows you, you have that safety net in the sense that, you know, hey, look, I've been going through this from childhood. So even though you know about this condition of mine, it doesn't change anything as it hasn't for the last several years. But do you think that this could potentially affect a person depending on the different stages in their lives and when a person may want to reveal being vulnerable? For example, someone who's at the stage of looking for a job, at that point, is it really beneficial for a person to be very open about a condition like this? Or if they're looking for a relationship, you know, could it potentially make their situation

SPEAKER_05 35:21

harder in that sense? Had I said that out loud? No. Yeah. I'm sure you'll find the support. And if you don't find the support, that's not the right place for you. Now, if, if it doesn't affect your job, it's hard for me to say, cause I've gone my entire life without talking about it. You know, do they need to know, but it's also a whole conversation of you could start a job. Everyone knows and everyone's so supportive and they know what to do. A lot of people have seizures at any point at an unknown time during the day in the middle of whatever they're doing. And if they're educated, they know what to do. And that is very, very important also is to get more people educated on training and for seizure first aid. And if they know, then there's nothing to be worried about, you know, you can do certain jobs within your capacity. And like I said, every situation is different. And there are people out there who are controlled by their epilepsy instead of having control of their epilepsy. And there's a big difference. and that is where it becomes very situational very situational to where if you're out there with this condition and you cannot work I empathize with you and I hear you and that is valid right yeah

SPEAKER_04 38:02

Do you think that having a therapist, and have you personally ever had a therapist, you know, at least someone to sort of share this with, do you think that that's important for someone who does have epilepsy?

SPEAKER_05 38:14

Yeah, I think for me, it didn't become important until this year. And this year I do. And I have someone and she helps me navigate kind of my decisions and talk through what I'm going through. That is helpful. But also what is very helpful, having someone who has it also. Because they truly understand. And that is, you know, for me, that was a community that I didn't know online.

SPEAKER_04 38:40

Right.

SPEAKER_05 38:42

Unless there's someone out there I know that hasn't shared it. Right. How many times do you walk into a room? The prevalence is one in 26. How many times have all of us been in a room with more than 26 people? So that perspective has changed. How many times have I walked into a room my entire life where I have been the one out of the 26 who just didn't know? And so finding that support, if no one's talking about it, is not easy.

SPEAKER_04 39:09

Right.

SPEAKER_05 39:10

It's

SPEAKER_04 39:11

one of those things, right, that it's not something that we can see right in front of us. So, you know, I was thinking earlier as well about what you said, you know, in a company when you're applying for a job, a company does have a legal obligation to reasonably accommodate the employee or potential employee. But, you know, they're able to do that to or for an employee that presents, again, a physical condition. For example, someone that is wheelchair bound, there are ways that a company can reasonably accommodate that. However, and of course, epilepsy is something and it can be something very physical for some people, but it's not something that is consistently just out there for people to look at. So it is one of those kind of sort of situations, somewhat akin to like mental health in the sense that we can't really always see it, right?

SPEAKER_05 40:00

It's absolutely correct what you said. It's an invisible illness. And there are so many conditions that fall under that category. Mental health, anxiety, depression, all can affect what you do and all can be supported if people around you know they cannot be seen. So the stigma around it is I would never not hire someone as, you know, as someone who hires people at my office. It would never stop me, but it would be nice to know so I could be supported.

SPEAKER_04 40:33

How did your family, your immediate family take it when you told them that you were going to, you know, tell them? make it a public

SPEAKER_05 40:40

thing? I didn't tell them about it. I just did it. Because it's my story and it's my journey. And even if you follow my page, I don't bring my family onto, they are a big part of my journey, but, and I will talk about them, but I will not present them on social media in any way, shape or form to protect their privacy because this is, this is a solo journey that needs to be shared i don't think it's my place to put anyone else out especially publicly like this

SPEAKER_04 41:17

yeah i think that there's just so many amazing like little facets to this story i wanted to also ask um how has this or has this empowered you to share other parts of your life of your journey with other people for example motherhood the the difficulties of motherhood or you know the stresses of you know managing parts of your life or you know other other aspects of your life? Have you found that since you started to share something really deeply personal to you, that you felt empowered to share other things about yourself too?

SPEAKER_05 41:47

Yeah, there are multiple things about a person. And that's what I've realized, like, you know, behind the bindi has a lot to do with it. That is a cultural significance. For those of you who don't know, a bindi is the dot that is worn by Indian women. It used to mean that you were married. Now it's just kind of a fashion statement. We have fun with it. It matches our outfits, right? And that is, I'm sorry, that is the significance. And I chose that handle as kind of what we want people to see and what we don't want people to see, right? We talk about our kids when they've gotten into Yale and Harvard and UPAD, but if your child is struggling, we're not hearing about that at that party that we went to two weeks ago or wherever we may be gathering. If your child has depression and is seeking things That all as a cultural aspect is still very stigmatized and it shouldn't be. It shouldn't be because if these mothers are talking about it, maybe they also have a child or a niece or a nephew or if they're teachers, another child that they work with that they can suggest support for. And so I'm kind of starting by living by example of what I want to see.

SPEAKER_04 43:08

Right.

SPEAKER_05 43:09

And I feel like me sharing it is just a start. And I want other people to be able to share that. Now, it doesn't have to be on a social media platform. It doesn't have to be. But start with your friends. Start with your closest support system. I just skipped all of that because I'm just an all or none. We're going to do this or we're not. I just skipped all of that. And I was like, look, you know, I've checked off whatever your checkboxes are of success. Let's talk about what's real. Let's talk about Yeah, it's real. that's where kind of the mission is.

SPEAKER_04 44:13

Right. I love that. I love that. Yeah. And I really do hope that like people listening as well can feel, you know, sort of empowered to sort of share whatever it is that's going through their lives with someone they feel like they can trust. You know, it might be a good kind of warm place to start with someone that, you know, you can trust and that you feel comfortable around. And opening that conversation also brings people a lot closer to each other. You start, the more you share your vulnerable side, the more they're liking hey, you know, well, my life is not as rosy either. These are some things happening in my life. And that's how you sort of connect on that deeper sort of human to human level, which is what we are, humans,

SPEAKER_05 44:49

right? We're all humans. And the, you know, as far as like Asian culture goes, marriage check, right? We have this checkbox that kind of determines your success. And the minute you step out of that or talk about anything else, it's like, wait a second, we're not supposed to talk about that. And it gets to, well, let's talk Yeah. And then there are certain things that are, let's just push that under the rug. We don't need people to, we don't, you know, we've got this. But I will share the first time that I shared it actually goes back to a family member's friend who works in the Department of Neurology. She is the one who introduced me to my current neurologist who specializes in women's health. Had I not talked to her about it, I would not be receiving the amazing care that I have today. And that's where I really find the importance of what if you're missing something or a connection or a resource because we're not talking about it.

SPEAKER_04 46:24

Yeah, I think that's such a key point as well. Humans are resource. We have the tools, we have the skills, we have the knowledge to take other people that may not have that to the places that they need to be, to the little corners that they need to be. And that can be whatever journey that is. It can be a spiritual journey, it can be an intellectual journey, it can be learning a skill, whatever it is. Even learning a skill, you're learning it from some one else it requires you to show an interest not just have it to show an interest in something for you to reach out to those corners for you to develop that skill and so in the same way right it just it all it's all interconnected in that sense right I love that

SPEAKER_02 47:12

it is

SPEAKER_04 47:13

it

SPEAKER_05 47:13

is it's all connected and I just don't want people to wake up and be my age and miss out on opportunities and resources and support when it could have Yeah,

SPEAKER_04 47:26

this has been such an inspirational conversation. I just wanted to give you opportunity to share some last minute plugins. Talk to us a little bit about you know, what are your plans with behind the bindis? And you know, what what's going on with this project of yours? And how

SPEAKER_05 47:41

can people reach out to you? a slew of people within the community who have different knowledges different information than i do right i don't know at all but i i have an access now to say you know what i may not know but i will i will reach out to this person they may they may have a better idea and so i really want people to one acknowledge it and accept it right don't shove it under the rug i for this many years never had to acknowledge that i had epilepsy and what if i did that before i don't no, I didn't need to, but that's going backwards, right? We're moving forward. And the more we talk about it, the more it raises awareness and the more help and resources and support that we have, because after talking about it, there's been so many resources and so much support. And my, my goal with behind the bendies is, is just to be there as a support system, honestly, for other people. And to say like, look, I do live a normal life and just because you're defined by something doesn't stop you like don't self limit you and pursue what you want to do find the resources along the way to support you to do that in that whatever capacity that may look like

SPEAKER_04 49:13

yeah yeah Amy, thank you so much for being on the podcast, being vulnerable with us on air, and for inspiring listeners today. Thank you. It was a pleasure to be here.

UNKNOWN 49:27

Thank you.

SPEAKER_04 49:29

If you enjoyed the episode and would like to help support the show, please follow and subscribe. You can rate and review your feedback on any of our platforms listed in the description. I'd like to recognize our guests who are vulnerable and open to share their life experiences with us. Thank you for showing us we're human. Also, a thank you to our team who worked so hard behind the scenes to make it happen.

SPEAKER_05 49:51

The

SPEAKER_04 49:53

show would be nothing without you. I'm T-Spective.