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Transcript

Nesh Pillay: Be Kind To Little Man · Holding It Together (Kinda)

1:15
Michael: Hey, hey, everybody.
1:16
Michael: It's Michael Makniak here.
1:18
Michael: I'm the host of Holding It Together kind of podcast.
1:23
Michael: I um basically took my notes for this intro and more or less shredded them and threw them away because the guest that I have on today is probably known to many of you.
1:35
Michael: Uh she is the subject and the star of the um Amazon Prime television show 50,000 First Dates, uh Nesh Palay, where uh they followed her as she went through a wild time after suffering amnesia, which they suspect is due to a series of head injuries throughout her life.
1:58
Michael: Um this conversation was so much fun to do because Nesh is just so funny, so full of life herself, and um just the vibrant.
2:10
Michael: And I hope, I really hope it comes through uh in the recording and you guys can get a sense for how real this woman is.
2:19
Michael: She is a dynamic person.
2:21
Michael: Um, she really talks a lot and touches on a lot of the things that we have touched here in this podcast, uh, including the perspective of a caregiver and what what caregivers are going through or need to go through.
2:36
Michael: But she really puts an interesting spin on things too, uh, so that we outside looking in can have a very cool perspective of what the person who is going through the injury or the illness uh uh may have to say or may think or may be internalizing about it.
2:55
Michael: So I really hope you you check out this message and this message, this episode, and enjoy it as much as I enjoyed doing it and bringing it to you.
3:11
Michael: Guys, I am so super excited that I could that I could um bring Nesh to all of you so you could hear from her in this exclusive international discussion that she and I are having from Canada to the US.
3:27
Michael: We are allies.
3:28
Michael: I don't care what anybody says, right, Nesh.
3:30
SPEAKER_02: Oh yeah, we're friends.
3:31
SPEAKER_02: We're we're pals.
3:33
Michael: Right.
3:34
Michael: Well, as I said, Nesh, and and thanks thanks so much for being here and helping my audience to understand some of the issues that go along with traumatic brain injury and amnesia, and your lived experience is outrageous.
3:49
Michael: So thank you for being here.
3:51
SPEAKER_02: Yeah, of course.
3:52
SPEAKER_02: I'm happy to be here, always happy to share the experience.
3:56
SPEAKER_02: The one thing I've learned is my story, it's it's it's unique, but it's actually not that unique.
4:01
SPEAKER_02: So it's interesting, but it's not that unique.
4:04
SPEAKER_02: For me, it happened probably a little bit more dramatically, but that's my biggest learning is it's not that unique.
4:10
SPEAKER_02: And by sharing it, other people recognize that too.
4:13
Michael: Well, and that's one of the things that I really hope to accomplish with this podcast is to let people know that yeah, your story is unique.
4:20
Michael: You your story is unique to you and what you've gone through, but there are many, many other people who have similar experiences or different experiences, but but we can learn from each other.
4:33
Michael: You know, hearing your story may inform others, or other stories may inform you.
4:38
Michael: And that's the important thing here.
4:40
SPEAKER_02: Yeah, there's a lot of times where there are certain, I mean, think about it, right?
4:45
SPEAKER_02: The brain is the control center for your body.
4:48
SPEAKER_02: So every everything every organ does, like every way in which you experience the world, that all is because of the brain.
4:56
SPEAKER_02: And so sometimes there's something that's a symptom that you don't even realize is a symptom.
5:01
SPEAKER_02: There is no guidebook, there is no one way for brain injury to occur or to present itself.
5:07
SPEAKER_02: So, like I've multiple times over the years, I've experienced something weird, and it's not till I look it up or talk to someone else that I realize, like, oh, this is an expected symptom.
5:18
Michael: And it's so interesting because well, actually, let's do this.
5:21
Michael: Let's take a step back and so you could tell the listeners who don't know your show, 50,000, and have not seen and have not seen the the stardom, the rise, the meteoric rise to fame that you've had from doing that show.
5:37
Michael: Tell tell tell the the the listeners about yourself and how this all came about and and what the hell happened.
5:45
SPEAKER_02: So I'm still trying to figure that out myself.
5:47
SPEAKER_02: But so, yes, I am known mostly for docuseries on Amazon Prime called 50,000 First Dates.
5:54
SPEAKER_02: You know, the interesting part, and and of course, sharing my story on social media, TikTok.
6:00
SPEAKER_02: The show TikTok really only covers a brain injury that I had, I can't remember time, but a few years ago, maybe three at this point, where it was very sudden, sort of amnesia.
6:13
SPEAKER_02: And I forgot I thought I was a teenager.
6:15
SPEAKER_02: I forgot having a daughter.
6:17
SPEAKER_02: And yeah, but you know, prior to that, I I always think it's important to share my story.
6:23
SPEAKER_02: Started when I was nine years old and I was in a scar story, right?
6:27
SPEAKER_02: Yep, the scar story.
6:28
SPEAKER_02: So, you know, I've I'm not an athlete, but I've always had head bumps and major concussive symptoms, and you know, they seem to be it, they seem to sort of lay on top of each other.
6:42
Michael: Right.
6:42
Michael: Well, and your sisters really make fun of you about that, that you are really clumsy.
6:47
Michael: Uh and starting from a young age, you had a series, you had a you were in a car accident, right?
6:52
Michael: And then you had a series of falls and things like this, which may or may not be related to the brain injury from that car accident, but you believe that that's a cumulative, the buildup of several concussions, true.
7:05
SPEAKER_02: It appears so, yeah.
7:06
SPEAKER_02: I mean, today, you know, finally we're seeing these things in my scans, but you know, finally, 30 some odd years later, I have atrophy in the brain.
7:17
SPEAKER_02: So there's parts of my brain that are just not there anymore and some tissue that's died off.
7:21
SPEAKER_02: And it's really unfortunate that it takes it took this long to be able to actually see those in scans.
7:28
SPEAKER_02: But that is sort of the tough part is diagnosing a concussion is not really a direct thing.
7:34
SPEAKER_02: We don't fully understand them just yet.
7:36
SPEAKER_02: So it is very hard to know what really was and wasn't a concussion.
7:41
SPEAKER_02: And also, like for every head bump, you don't necessarily go to the emergency room.
7:46
SPEAKER_02: You sometimes just try to sleep it off, and you may not notice symptoms till three weeks later when you realize you're losing your keys more.
7:55
unknown: Right.
7:56
Michael: Or in your case, waking up one morning completely forgetting life and thinking that you're a teenager again, right?
8:03
SPEAKER_02: Yeah.
8:03
SPEAKER_02: Yeah, I was disappointing to say the least every time I realized that I wasn't.
8:08
SPEAKER_02: Because to a teenager, 30 is really old, right?
8:11
SPEAKER_02: So I kept saying, like, my life is over.
8:16
Michael: Oh my god, imagine if you were my age.
8:19
Michael: Now it's interesting.
8:22
Michael: I I have to say, I love listening to you speak.
8:26
Michael: You you're you're engaging, you're funny, and you're realistic, and it's really cool.
8:31
Michael: And and I this is like the best compliment I could give to anybody.
8:34
Michael: But it to me, it seems like your true voice really does come through when you're talking and writing and doing with the things that you do.
8:40
Michael: So kudos to you for that.
8:42
SPEAKER_01: I really appreciate that.
8:43
SPEAKER_01: Thank you.
8:44
Michael: One of the cool things that that you you presented, and I believe it's early on in in the show, first couple episodes, even, is this really cool analogy that you you gave people to try to understand what it's like to have amnesia or even a brain injury that's causing you to have temporary memory loss.
9:04
Michael: The guy that's living in the basement, right?
9:07
Michael: You tell that that analogy right here because I it just really resonated with me.
9:12
SPEAKER_02: Yeah, absolutely.
9:13
SPEAKER_02: Okay, let me try to remember the analogy.
9:15
SPEAKER_02: Okay, so what I can say I now know is a big part of my issue was an access issue.
9:20
SPEAKER_02: And I wasn't able to verbalize that because now I know that there are different types of memory loss, and largely I was unable to access my memory.
9:29
SPEAKER_02: So I use this analogy of like, say all your memories are in your brain.
9:34
SPEAKER_02: They're a guy in a basement and they've got all these files and folders with information like where you were born and things that have happened, and then there's an earthquake.
9:43
SPEAKER_02: And so you're trying to say, like, hey, what was that thing that happened?
9:46
SPEAKER_02: And this guy's frantically trying to find the memory, and he's like, I know it's here somewhere.
9:51
SPEAKER_02: And you know, he's doing the best to reorganize.
9:55
SPEAKER_02: Sometimes he finds it, sometimes he doesn't.
9:57
SPEAKER_02: Even today, there's some things that are fully gone.
10:00
SPEAKER_02: There are some days where I'll remember something that I completely thought I'd forgotten.
10:06
SPEAKER_02: Like not too long ago, I turned to my mom and I said the name of a family friend.
10:09
SPEAKER_02: I was like, Oh, how so so and so?
10:12
SPEAKER_02: And then I shocked myself because I realized up until that point, since my last brain injury, so and so ceased to exist for me.
10:20
SPEAKER_02: I completely forgot about her as being a person, and then suddenly I did.
10:24
SPEAKER_02: So little man, I call him little man, he's working his hardest, he's doing his best, but yeah, that's that's I love that.
10:31
Michael: So little man's down there, he's just got this shit storm of files flying around.
10:36
SPEAKER_02: Poor guy, yeah.
10:37
SPEAKER_02: And you know, we have to be kind to little man, yeah.
10:40
SPEAKER_02: He's he's doing his best, but I do I love that for the show they had an actor played with him.
10:46
Michael: Yeah, yeah, it was cool, and it's like the wind was blowing files and stuff all over the place.
10:50
Michael: It was really, it was really cool, and it really stuck with me too.
10:53
Michael: And and the great thing about you is like you haven't said it yet, but I'm I'm gonna put words in your mouth.
10:59
Michael: But Nesh will say something along the lines of she will forget this interview or parts of it and we'll have to be reminded of it, right?
11:06
SPEAKER_02: 100%.
11:07
SPEAKER_02: It's like I tell people this, and I mean, humor is really a coping mechanism for me, but it is also like sometimes a reality check for people.
11:17
SPEAKER_02: I might not remember it.
11:18
SPEAKER_02: And and I've just had to accept that.
11:20
SPEAKER_02: Like if there are moments, there are days where it makes me sad.
11:24
SPEAKER_02: Like if I'm having a moment with my kids and I'm like, oh man, I really want to remember it.
11:27
SPEAKER_02: Sometimes if I try to remember it, I'm more likely to remember it.
11:31
SPEAKER_02: But in general, I've really accepted that I don't remember most of anything specific, specifically episodically.
11:39
SPEAKER_02: So if I were to like describe it like a video in my head, I don't.
11:43
SPEAKER_02: If you ask me to walk you through my last week, like don't ask me to walk you through my last week.
11:51
Michael: Is that true?
11:51
Michael: Like, can you remember two weeks ago, but you can't remember last week?
11:54
SPEAKER_02: Like a lot of people, I can't I can't remember much behind me, to be honest.
12:00
SPEAKER_02: I remember that things have happened.
12:02
SPEAKER_02: So I remember that we went camping two weeks ago.
12:06
SPEAKER_02: Maybe time is very difficult for me.
12:08
SPEAKER_02: I'm I'm very much not rooted in time anymore.
12:11
SPEAKER_02: I don't feel the passage of time as much because I don't remember.
12:16
Michael: Maybe you live forever, Nash.
12:18
SPEAKER_02: Uh huh.
12:18
Michael: Maybe that'll make you live forever.
12:20
SPEAKER_02: Maybe I would love that.
12:22
SPEAKER_02: But yeah, so I know that things are true.
12:24
SPEAKER_02: I know that we went camping recently, but I I maybe have a couple of flashes of what it looked like going camping, but truthfully, I might just be remembering the pictures and videos.
12:36
SPEAKER_02: So I take a lot of pictures and videos, and now I can't tell the difference between having a memory of of something or having a memory of looking at the picture and video later.
12:47
Michael: Right.
12:47
Michael: I understand that.
12:48
Michael: I I can completely my ex always said, This is 25 years ago, she always loved take tons and tons of pictures of everything.
12:56
Michael: What do you take and why are we saving all these pictures?
12:59
Michael: And she would say, Well, it's for memories.
13:01
Michael: What do you do for memories?
13:03
Michael: I say, I remember memories.
13:04
Michael: What do you mean what do I do?
13:06
Michael: So you are like feeding right into her neuroses around having these pictures.
13:11
Michael: But I'll and I'll pass this along and let her know that she was right.
13:14
Michael: She was right.
13:15
Michael: But I do but I do understand what you're saying.
13:17
Michael: It's this, am I remembering the incident or am I remembering am I remembering the reminder of the incident, right?
13:25
Michael: And and the interesting thing is is that you have you've maintained the foundational aspect of your adulthood and your adult life, and you know you have the kids and you know you know what happened to you.
13:39
Michael: And so it and you're you're a you're a speaker, you're out there as an advocate.
13:45
Michael: So foundationally, the the the cement that holds everything together, you do conceptualize anyway.
13:53
SPEAKER_02: Yeah, I I I mean, I still have a pretty great career.
13:57
SPEAKER_02: I remember when I did lose my memory in the videos, at least.
14:01
SPEAKER_02: So when I say I don't remember, I don't actually know that I'm remembering, but in in the videos, you know, I was asking people about my life, and they were like, you run a marketing agency.
14:11
SPEAKER_02: And I was like, I don't know how to do any of that.
14:13
SPEAKER_02: But the truth is a lot of those foundational instincts remain for me.
14:19
SPEAKER_02: I just I've gotten a lot better at identifying my gaps, being able to communicate those gaps to people, and then using tools, adaptive tools like AI to help me fill those gaps.
14:31
SPEAKER_02: So a lot of the time for someone who doesn't know, they may not know.
14:35
SPEAKER_02: And and because I I'm so tight with my planning and trying not to let things fall through the gap, someone might even think I'm more capable at my job than I was before.
14:45
Michael: Well, so you did go back to the big, I mean, she she folks, uh, this woman had some serious high powers power positions, and and and she had a really big time job before this all happened.
14:57
Michael: So you are back in that field?
14:59
SPEAKER_02: Are you I'm back in that field, yeah.
15:01
SPEAKER_02: I'm leading marketing for a great organization.
15:05
SPEAKER_02: Getting back here was difficult.
15:07
SPEAKER_02: I mean, just even the pro the process of disclosing my condition, you know, I I had one job where I disclosed and the the the CEO called me a liability.
15:23
SPEAKER_02: So, you know, so then with this position, I I didn't disclose right away, but within a month or so I did, and I built a presentation and explained it because, you know, you hear sort of cognitive challenges, you hear memory challenges, and you immediately think that that's tied to intelligence or capability.
15:43
SPEAKER_02: And it's not necessarily right, you can sidestep these things, you can work around them.
15:47
SPEAKER_02: And I think that I don't know, I like to think that we're more capable than we realize, but you also have to find yourself in a space where they understand that like I'm not going to take a full day of meetings, or if I'm traveling on an airplane, then I'm going to have to nap the rest of the day.
16:04
SPEAKER_02: But when I'm on, I'm really on.
16:07
Michael: Yeah.
16:07
Michael: Yeah.
16:08
Michael: And you said that when I met you, you said, you know, I just gave a speech for whatever it was, 40 minutes, 45 minutes.
16:16
Michael: You had given a speech, and you told me, or you told all of us actually, you said, I will need the rest of today and most of tomorrow to rehab from this this effort.
16:26
SPEAKER_02: Yeah.
16:27
SPEAKER_02: I by the way, I don't remember talking to you that day.
16:30
Michael: So I had that effect on a lot of women.
16:33
SPEAKER_02: This is our first time meeting, in essence.
16:35
SPEAKER_02: Like when you popped up on my screen, I was like, Oh, this guy, okay.
16:39
SPEAKER_02: Who I've been planning to speak with.
16:41
SPEAKER_02: But what helps, you know, again, it just forces you to know yourself.
16:45
SPEAKER_02: I'm very stubborn.
16:46
SPEAKER_02: So it takes me a long time in the moment to recognize that I'm struggling.
16:52
SPEAKER_02: And oftentimes I won't recognize till it's too late.
16:54
SPEAKER_02: So my partner was there with me, and you know, after the talk, people wanted to chit-chat, and I I wanted to, I wanted to be there and chat with everyone, but she eventually had to say, like, nope, you need to go to bed.
17:05
SPEAKER_02: And and having that, having an advocate who really understands is incredibly helpful because in the moment I look and sound fine, but I can very quickly crash.
17:17
Michael: Yeah, that's interesting.
17:18
Michael: And and there's a couple of things that you brought up that I wanted to circle back to quickly.
17:23
Michael: I one of the things that's really apparent in your show and in your talk is is the amount of video that you did during the course of the onset of this, the real onset of the heavy duty amnesia that you know was a progressive upward impact on you.
17:42
Michael: And I just wanted to touch on really quickly, number one, the uh the story that you were telling that you you mentioned somebody that you forgot all about and just the other day they popped into your head.
17:54
Michael: There's a there's a part, there's an interview, I believe, with your two sisters who basically are in tears because they were so happy that you had a memory that was something.
18:06
Michael: I don't remember exactly what the memory was about.
18:09
Michael: And I would have to go back and watch the episodes, but it was it was really touching and moving how how moved they were to see you and be so happy that you were able to have a memory back again from something that you guys had done long ago.
18:24
Michael: Go ahead.
18:25
SPEAKER_02: I know Yeah, I think I know what you're talking about.
18:27
SPEAKER_02: It wasn't specifically a memory, but they said that they knew because because it is in a way when when my brain's really struggling, I'm to to other people, not me anymore, or the person that they know and love.
18:40
SPEAKER_02: And so they said something like, We knew she was coming back when we were able to gossip.
18:44
Michael: Oh, yeah, I remember that one too.
18:46
Michael: Yes, yeah, they did say that that was pretty cool.
18:49
Michael: Now I thought there was another specific incident.
18:52
SPEAKER_02: There may have been, I just don't remember.
18:54
SPEAKER_02: See?
18:54
Michael: What's that?
18:55
SPEAKER_02: I said there may have been, I just don't remember.
18:58
Michael: Me neither, and I just watched it a couple of weeks ago.
19:01
Michael: But but but it does bring me to to the interesting questions that that raises, and and and the and seeing these videos and having all these video reminders, and and uh and and and it goes to your family and your loved ones and your relationships.
19:17
Michael: How is that for I mean, and of course, we're talking primarily here to caregivers.
19:24
Michael: So I really want them to have not only an understanding from your perspective perspective of the person with the brain injury and the amnesia that you had, but how is it also for the the caregivers who are saying, Oh God, I just want my I want my old Nesh back, I want my sister, I want my daughter.
19:43
Michael: And and we could take them one at a time or however you want to try to answer that.
19:47
SPEAKER_02: Yeah, I mean, you know, first of all, the caregiver experience runs the gamut, and it it did for me.
19:54
SPEAKER_02: Not everyone has been able to remain in my life.
20:02
SPEAKER_02: And I think that caregivers are mourning, you know, just like a lot of people with brain injuries, we struggle with our own identities because as people, we tie our identities to what we do.
20:16
SPEAKER_02: And if we're no longer capable of doing those same things at the same level, there's this big feeling of who am I?
20:22
SPEAKER_02: And if I'm a person that needs to be cared for all the time, what is my purpose?
20:27
SPEAKER_02: Do I have a purpose?
20:28
SPEAKER_02: So the people experiencing it are going through that for the caregivers.
20:33
SPEAKER_02: It's suddenly the person they had grown to love and what they're seeing of them is very different.
20:39
SPEAKER_02: And there's a level of mourning that happens, and people deal with mourning very differently.
20:45
SPEAKER_02: Some people try to encourage you to be your old self.
20:49
SPEAKER_02: We miss the old self, and that's actually painful to hear, you know.
20:52
SPEAKER_02: Some people will step away and say, like, it's too painful for me to be in your life.
20:57
Michael: And I think that that sucks too, but it's understandable, I guess, on a level.
21:03
SPEAKER_02: Yeah, it is it is.
21:03
SPEAKER_02: And I think that, you know, as the person going through it, you kind of need to let your caregivers have their experience, whatever it is.
21:12
SPEAKER_02: And as a caregiver, you know, just because the experience is difficult for you to comprehend or wrap your mind around, or even the symptoms, that does not mean they're not real.
21:23
SPEAKER_02: So I think that oftentimes as caregivers, because it's so difficult for us to understand, like, but I don't understand, he looks fine, or but I don't understand he did this yesterday, so why can't he talk to me today?
21:34
SPEAKER_02: Whatever it is, is then the instinct is to assume it's fake or assume it's being traumatized or whatever.
21:44
SPEAKER_02: The one thing I can assure you, every caregiver, nobody wants this.
21:49
SPEAKER_02: Like this is not anybody's choice.
21:51
SPEAKER_02: Nobody, if you're getting attention from it, it's not positive attention, it's not what you would want.
22:00
SPEAKER_02: So, so yeah, that would that's sort of how I see it going generally.
22:04
Michael: And didn't you get some pushback and a lot of criticism that people were accusing you of faking it and that the whole thing was made up?
22:11
SPEAKER_02: And oh yeah.
22:13
Michael: People were nasty about it, right?
22:15
SPEAKER_02: Yeah, they were and they are.
22:17
SPEAKER_02: I mean, you know, the I can understand because like even the best neurologists in the world, they'll tell you we don't really understand brain injury, but not understanding something because science isn't there yet, and something not existing, those are very different things.
22:33
SPEAKER_02: And absence of evidence is not evidence of absence.
22:38
SPEAKER_02: But, you know, to people like, especially with social media and the show and everything, there's this one track mind of what amnesia and memory loss looks like, right?
22:48
SPEAKER_02: Because we've seen it in movies.
22:49
SPEAKER_02: But then there are questions like, well, you know, because there are certain things and I don't know why.
22:53
SPEAKER_02: Like I someone once put my laptop in front of me and I put my password in.
22:58
SPEAKER_02: I mean, I guess I've had the same password since I I don't know why.
23:01
SPEAKER_02: There are things like I don't know why I remember certain things and not other things.
23:04
SPEAKER_02: And there's no test I can take that tells me why.
23:07
SPEAKER_02: So, you know, there was that like, how does she know what a phone is?
23:11
SPEAKER_02: And but Don't know this, or you know, at and and at certain points I called it the black square, but then if someone put it in my hand, I knew what to do with the phone, or I knew that someone was recording me with the black square.
23:23
SPEAKER_02: So, yes, because it doesn't look like something we think we know or understand, I think that human nature, especially when there's a woman, let's call it what it is, will generally say, like, oh, it's for attention, it's you know, whatever.
23:38
SPEAKER_02: I I think that nobody would choose this.
23:41
SPEAKER_02: I I really, I really don't.
23:43
Michael: I I would agree with you there.
23:45
Michael: Yeah.
23:45
Michael: I mean, just hearing your story, watching your story on TV and seeing how it's all you know, sort of developed and laid it, laid itself out.
23:54
Michael: I, you know, when you were talking about what it's like on a I'm thinking about what it's like, the challenge of being in a in a relationship with you, not only as a partner, but as a family member and everything like that.
24:08
Michael: On one hand, I'm thinking, wow, this could be really cool, right?
24:11
Michael: Every day, it's like a whole new experience for me.
24:15
Michael: But at the same time, it could be very frustrating.
24:18
Michael: And I think you just tapped into that.
24:20
SPEAKER_02: Yeah, I mean, I so I I kind of have two lenses to share this through.
24:27
SPEAKER_02: So the first is my partner that you see in the show, he ended that relationship before the show even came out.
24:34
SPEAKER_02: And so that was difficult for me because there was sort of like the presenting of a certain type of partner on camera, and and then the truth is always a little bit different.
24:43
SPEAKER_02: And I do have another partner who I met afterwards and who knew the situation all along.
24:50
SPEAKER_02: I think for caregivers, especially when there's an external eye, whether it's a camera or other people, there is pressure to show that you are the perfect caregiver.
25:00
SPEAKER_02: I don't think it's possible to be the perfect caregiver.
25:04
SPEAKER_02: And that is sort of difficult.
25:06
SPEAKER_02: I do think you have to honestly say to yourself, I can or I cannot be this caregiver.
25:12
SPEAKER_02: And I, you might feel terrible.
25:14
SPEAKER_02: You might feel guilt.
25:15
SPEAKER_02: I mean, guilt is when your values and your reality don't match up, and you might have to step back.
25:21
SPEAKER_02: And I think that's an okay thing to do.
25:23
SPEAKER_02: And honestly, I think it's ultimately a kind thing to do because the alternative is that you remain and then you're resentful of the person who's unwell or injured, and that causes a whole other slew of problems.
25:37
SPEAKER_02: Also, being caregiver to someone in this situation, especially when you've got cognitive challenges and things like that, it requires a lot of trust.
25:48
SPEAKER_02: So that person is assuming that they can trust you 110%.
25:52
Michael: If you're not really you're you, Nesh, are assuming that you can trust your caregiver.
25:57
SPEAKER_02: Yeah, 100%.
25:59
SPEAKER_02: And because sometimes I cannot rely on my own brain.
26:02
SPEAKER_02: So I I need you.
26:04
SPEAKER_02: So if that's not a task you're up for, that's okay.
26:07
SPEAKER_02: But you have to be honest with yourself, you have to be honest with that person.
26:11
SPEAKER_02: And then, you know, the flip side.
26:13
SPEAKER_02: So my my current partner, she had known my story and those sorts of things, and it was just a tiny thing.
26:20
SPEAKER_02: But on our first date, she scoped out the cafe ahead of time to make sure that I was sitting away from the sunlight so that my brain wouldn't be tired.
26:29
SPEAKER_02: And it was just such a tiny, gentle move.
26:33
SPEAKER_02: And because she knows, and she actually works in mental health, and so she has seen the gamut of these things, I feel very safe to feel however I'm feeling in any particular moment because there's less guilt.
26:49
SPEAKER_02: Prior to this, like I was always just worried about what my symptoms were doing to the people around me.
26:55
SPEAKER_02: And so I was kind of like, I would just hide from the world most of the time.
27:00
SPEAKER_02: But now with a partner who gets it, like over time I'm actually doing a lot better because my brain gets a little bit more practice and she's gotten really good at understanding my symptoms and my signals, and then you know, saying, like, we need to leave, like that's okay.
27:16
SPEAKER_02: And but you know, getting here was difficult.
27:18
SPEAKER_02: Like the first time she saw me have tremors, I was really ashamed.
27:23
SPEAKER_02: There was one day where my I went to Toronto and I was I was near where my former partner and I used to live, and suddenly I don't know how to explain it.
27:37
SPEAKER_02: My brain was like in that period of time.
27:40
SPEAKER_02: And so I came back to my home and I was just, she wasn't here, but I was just she suddenly felt like a stranger to me.
27:48
SPEAKER_02: And it was bizarre, like whatever emotional connection, like I didn't feel.
27:53
SPEAKER_02: And I can't, I can't understand that must be so painful, right?
27:56
SPEAKER_02: And I'm sure it was really painful for her, and it was her first time to really see this sort of thing.
28:00
SPEAKER_02: And I just she came over and I was uncomfortable.
28:04
SPEAKER_02: Like I didn't, I didn't want to hold her hand, I didn't want to walk to it was like I was I knew who she was, but it she still felt like a stranger.
28:10
SPEAKER_02: And you know, she just let me be as I was.
28:13
SPEAKER_02: She didn't try to push anything, she didn't try to prove anything, and and then eventually, you know, my my nervous system caught up and I I remembered and and it was fine, but yeah, weird things happen.
28:24
Michael: Well, I'll tell you for all the guys listening out there, she just gave you some really good points on how to get the brownie points, right?
28:30
Michael: Yeah, yeah, I know.
28:32
Michael: Now, uh so you touched on a lot of things there.
28:34
Michael: Number one, I think that we have to recognize is the legitimate feelings of grief, right?
28:39
Michael: And the stages of grief that caregivers are going through.
28:43
Michael: And and I don't think that they should put this on you as the patient, let's call it the patient, right?
28:49
Michael: Or the loved one, we'll say.
28:52
Michael: But there is mourning for the person that was, clearly.
28:58
Michael: And and and with that, that's part of the stages of grief, is this mourning.
29:02
Michael: And and I think that there also can be a tremendous amount of guilt on the part of a caregiver who feels that they aren't adequate, but there can also be, as you so eloquently stated, because I say this all the time, that's why I think it's so wonderful, resentment, man.
29:20
Michael: Once resentment starts building up, it is the cancer that will destroy every relationship.
29:26
SPEAKER_02: 100%.
29:26
SPEAKER_02: And that goes both ways, right?
29:28
SPEAKER_02: Because what's interesting is the caregiver and and the per the patient or the person experiencing whatever it is, are on parallel journeys.
29:37
SPEAKER_02: They both are feeling grief, they both are feeling anger, they they feel sadness, they feel denial.
29:45
SPEAKER_02: And and people often feel these privately because like you don't want to stress your caregiver out, or you don't want to make the patient feel bad.
29:54
SPEAKER_02: So you experience the same things in parallel, but because you can't contain them, sometimes the anger is directed at each other.
30:03
SPEAKER_02: That resentment is directed at each other because the patient is upset, because why can't the caregiver understand me?
30:10
SPEAKER_02: Do you not love me?
30:11
SPEAKER_02: And then the caregiver is like, why can't you just get better?
30:14
SPEAKER_02: Are you sure you're not faking?
30:15
SPEAKER_02: And so even though these are two people experiencing grief for the same old person, they end up turning on each other because when it when it comes to an invisible disease or illness or ill injury, you can't see it, so you can't turn on it.
30:32
SPEAKER_02: There's no there's no clear path to getting better.
30:35
SPEAKER_02: So you turn on the person that's closest to you.
30:39
Michael: All you got, it's all you got is each other, right?
30:41
Michael: Yeah, I never heard it said in such the in in quite the way that you just said it, where you, as the person in need, and let's just for what I don't I'm struggling for a good word here.
30:52
Michael: The patient, the the loved one, the person in need, like the givee, right?
30:58
Michael: You actually felt like ashamed, embarrassed, bad for the person that was caregiving for you.
31:07
SPEAKER_02: Horrible.
31:08
SPEAKER_02: And I I would I would argue that most people feel this way.
31:12
SPEAKER_02: There's so much because here's the thing your caregiver is a person you love deeply.
31:18
SPEAKER_02: You don't want to weigh them down, you don't want, you don't want their lives to change, you don't want to be the reason that they're upset and they're not able to do the things you want.
31:28
SPEAKER_02: There's a lot of guilt that goes into that.
31:30
SPEAKER_02: And to be honest, I do think that to add to that, thoughts of self-harm tend to follow that because you do feel so helpless in that because you don't you feel like you're the reason that the person you love is struggling.
31:43
SPEAKER_02: You may not, you may not say that out loud, but that is a very typical pattern of thoughts, is if I'm the problem, I can get rid of the problem, and then at least they can live.
31:55
SPEAKER_02: Like they'll be sad, but they'll live.
31:56
SPEAKER_02: That's the very honest and painful part of it.
31:59
SPEAKER_02: The thing is, for both the caregiver and the person experiencing an illness or injury, you both have to get to acceptance.
32:09
SPEAKER_02: And that's that's the really tough thing.
32:11
SPEAKER_02: And and and it's acceptance is not one place, it it'll come and go.
32:16
SPEAKER_02: But for me, the acceptance and also seeing it in my partner, the acceptance is just like accepting who I am now, accepting that, you know, I can't go like I could go to grocery stores, but then I'm sick, you know, for two days after each one.
32:34
SPEAKER_02: Like, so maybe I order my food and then now I know I have more days.
32:38
SPEAKER_02: And like that's just what it is is I don't go to grocery stores anymore.
32:40
SPEAKER_02: I don't drink as much anymore.
32:42
SPEAKER_02: And coming to that acceptance has allowed me to live a fuller life within my limits.
32:47
SPEAKER_02: And then with my partner, she didn't know me prior to my memory loss.
32:51
SPEAKER_02: So she accepted me and chose to love me as I was.
32:55
SPEAKER_02: So I don't feel like I'm constantly having to prove something to her.
33:00
SPEAKER_02: You know, like sometimes I'll say, like, oh, you know, in the old days, like I used to be able to do math really fast in my head.
33:06
SPEAKER_02: I could see numbers, or old me used to do this or that.
33:09
SPEAKER_02: And I guess I kind of want to like impress her, like, oh, I'm I'm actually really smart, you just don't know, or whatever it is.
33:14
SPEAKER_02: But she's like, dude, it's fine.
33:16
SPEAKER_02: I love you as you are, I love the person I'm at.
33:19
SPEAKER_02: And that's really freeing.
33:21
SPEAKER_02: It's allowed me to accept and love myself too.
33:24
Michael: Well, and the and the interesting thing that you said is that that freeing, that freedom and that release sounds like I mean, I'm certainly not a clinician, but it sounds like that ability to be free and that ability to be you and releasing that tension from your former partner allowed you almost to heal better, faster, stronger than you were healing before.
33:48
Michael: Does that make sense?
33:50
SPEAKER_02: It actually does.
33:51
SPEAKER_02: I've never thought about it that way.
33:53
SPEAKER_02: But yeah, you know, with that former partner, I used to feel guilt.
33:57
SPEAKER_02: Like he had met this like super independent business agency owner.
34:02
SPEAKER_02: And if anything, he could depend on me a lot more.
34:06
SPEAKER_02: Like I had everything covered, and then suddenly I just I don't even know what year it is.
34:11
SPEAKER_02: Now, there are people, there are care caregivers who are going to love you through that.
34:16
SPEAKER_02: That is not everyone.
34:18
SPEAKER_02: And and I think that again, because it is such a vulnerable spot to be in, sometimes the kindest thing you can do is be honest with yourself and honest with that person before you also start to make choices that are not indicative of the kind of person you want to be.
34:39
SPEAKER_02: Because having having lost that now and not having to prove to anyone that I'm still the old me, I get to be just who I am now.
34:49
SPEAKER_02: And it's it's really, you know, there isn't that constant comparison to who I used to be, which is really nice.
34:57
SPEAKER_02: Like, yes, with my parents and those sorts of things, but even my people who have known me for a long time, they they see more of the old me, surprisingly, now that I'm not trying to be her quite as much, now that I'm just leaning into who I am, because as humans, we grow and we change.
35:15
SPEAKER_02: Like that's a very normal thing.
35:17
SPEAKER_02: But I do think when you have this sort of break in identity, you scramble to be an older.
35:23
SPEAKER_02: Because the truth of it is, like now in my in my mid-30s, I probably wouldn't be going out as much.
35:29
SPEAKER_02: I wouldn't be, I would be complaining about noise at the grocery store anyway, and all of these things.
35:33
SPEAKER_02: But because I've had this break in identity where I thought I was 17, I felt like I had to scramble to make that life happen.
35:42
SPEAKER_02: And so acceptance is so healing.
35:45
SPEAKER_02: It is so freeing.
35:47
SPEAKER_02: And it it's not just one place.
35:51
SPEAKER_02: Like you can have acceptance overall, and then sometimes be like, man, it kind of sucks.
35:55
SPEAKER_02: I wish I could go to a concert and not be so worried.
35:59
Michael: Yeah.
36:00
Michael: Well, and acceptance comes from both sides as well.
36:03
Michael: Acceptance and and one of the most powerful tools, or one of the hardest things to do, but is one of the most powerful exercises.
36:09
Michael: And I've developed tools for caregivers to do this, is to do that deep dive introspection into yourself and determine what kind of caregiver you are and what kind of caregiver you can be.
36:21
Michael: And I think you you pointed that out.
36:24
Michael: That listen, it's not for everybody, man.
36:26
Michael: And it's okay to say, I'm not up to this.
36:31
SPEAKER_02: Yeah.
36:33
SPEAKER_02: That to me is much kinder to your loved one to say, listen, I love you, I would love to, but this is the max I'm able to support you.
36:42
SPEAKER_02: That is much kinder than not saying that truth, and then not being able to also fulfill the needs of your loved one, and then starting to resent them and then hurting them and hurting yourself.
36:56
SPEAKER_02: I mean, that's the least kind thing you could do, honestly.
37:01
SPEAKER_02: I think that sometimes just knowing when to step back is the healthiest thing.
37:06
SPEAKER_02: And then there are all the other things like caregivers need to be in therapy along with along with the people that they're caring for.
37:13
SPEAKER_02: You have to see still be working on your mental health.
37:17
SPEAKER_02: And and therapy is really nice.
37:19
SPEAKER_02: Like for me, I had the same therapist from before this, like before my memory loss.
37:27
SPEAKER_02: And then I scheduled, I don't remember them, but I did schedule some sessions when this did happen.
37:35
SPEAKER_02: I don't even know what we talked about.
37:37
SPEAKER_02: I I you know, but it's been nice because now she can remind me how far I've come.
37:42
SPEAKER_02: Because I think there was a period of time where like I wouldn't really even talk to her, I would like just paint and she was just there, but she she's you know, she's like, actually, like this has been a common thread in who you are all the time.
37:54
SPEAKER_02: And you know, I can see how far you've come, and it's it's really great.
37:58
SPEAKER_02: And a therapist can do that, you know, as a third-party person, and they don't have all the baggage that comes with being a caregiver.
38:05
SPEAKER_02: And I think expecting that to come from that that affirmation to come from your caregiver might be a bit much, you know.
38:12
SPEAKER_02: So so each of you having another party to kind of be there for that emotional support is huge.
38:18
Michael: That that that counseling is huge.
38:21
Michael: Um, I also say for the caregivers, ask for help, god damn it.
38:26
Michael: If you need help with something, ask somebody to help you.
38:29
Michael: People are sitting out here waiting to help you, right?
38:33
Michael: To help Nesh or whomever it may be, just ask because so many people want to help.
38:39
Michael: And people, I don't know.
38:40
Michael: We're also reticent to to do that, to just turn around and say, listen, man, I'm so at my wit's end.
38:47
Michael: I need a respite.
38:49
Michael: Can you come and take Nesh to the therapist today or whatever the case may be?
38:54
SPEAKER_02: Absolutely.
38:54
SPEAKER_02: And I think I think that the kindest thing you can do, it's I'm sure you've used the mask analogy a thousand times, like when you're on a plane and you need to put your oxygen mask on first, you're not abandoning your loved one, you're actually making sure that you're more available to support them because if if you don't have your oxygen masks, like they're not getting there.
39:14
Michael: So you're right.
39:15
Michael: And and and in a lot of ways, you become the oxygen for that person, yeah.
39:19
Michael: Along with the analogy.
39:21
Michael: But you know, I mean, talk to me about the because you you do they do show this in in your program with you going back to your craftiness and your artistry and stuff like that, where you that's just been a thread that's gone through through everything, as you just indicated.
39:38
Michael: And whether you remember what you you draw, paint, color, whatever, or not, it's always been something that's there.
39:47
SPEAKER_02: Yeah, you know, it's funny.
39:48
SPEAKER_02: My daughter, ever since this happened, loves Frida Kahlo because Frida Kahlo was injured, and she that's when she started painting.
39:57
SPEAKER_02: And so that first year, I mean, I always felt like I had to give back to my caregivers.
40:04
SPEAKER_02: I was, I always felt just guilty, guilty, guilty for the strain I had put on them.
40:08
SPEAKER_02: And so when it first happened, I couldn't do much of anything.
40:14
SPEAKER_02: And so I would just sit in my parents' basement and just paint.
40:18
SPEAKER_02: And it didn't, it looked like trash, I'm sure.
40:19
SPEAKER_02: I don't know what I painted.
40:21
SPEAKER_02: I think just putting paint to paper, like giving myself a creative outlet.
40:25
SPEAKER_02: And at first I would only be able to do it five or 10 minutes at a time before I needed to sleep for four hours afterwards.
40:33
SPEAKER_02: But then that time grew.
40:34
SPEAKER_02: And I think that first year I gave everyone paintings as Christmas presents.
40:40
SPEAKER_02: And, you know, painting remains something that is I it's the one thing I do without a specific outcome in mind.
40:48
SPEAKER_02: I'm I'm not a trained painter.
40:50
SPEAKER_02: I don't paint to be a great painter to sell my art.
40:53
SPEAKER_02: I just paint because it feels nice.
40:55
SPEAKER_02: And it's something I continue to do, especially when I'm having a tough time, is just giving yourself one thing that you do with no set purpose.
41:07
Michael: Just do it.
41:09
Michael: It's your hobby, you know.
41:10
Michael: And if you would like an exclusive Neshpele piece of art, you just could get her through.
41:16
SPEAKER_02: I have a thousand pieces of art.
41:18
SPEAKER_02: I don't know what to do with it because I'm I know you're such a collector.
41:21
SPEAKER_02: Well, here's one.
41:23
SPEAKER_02: I I don't know if I can change.
41:24
SPEAKER_02: Oh no, I can't change my background, but later I'll sh I'll send you a picture of the a painting that's behind me that I I I uh I painted years ago on a very sad day.
41:34
SPEAKER_02: But yeah, if you wants any art, please ask me because I just I don't know what to do with it.
41:40
SPEAKER_02: I feel bad.
41:41
Michael: I would love I would love to have a piece of your art.
41:43
Michael: But in the show, I mean you had all these videos.
41:47
Michael: You had, I mean, your whole this isn't just from the show, even before the show, you had all these videos interviewing your your, you know, even fake interviewing, and your family had all kinds of childhood videos.
41:58
Michael: There was always a camera in your face, and then and then with your art when they were showing your paintings and your supplies and stuff, it was like just everywhere in this one room I remember.
42:07
Michael: I was like, This girl keeps a lot of stuff.
42:10
SPEAKER_02: Yeah, well, I was I I mean, a I'm a millennial, so like I grew up alongside everyone having phones, so right, you know, I work in marketing, like worked in social media, and as a as an I was a journalist too for a while prior to all of this, so like storytelling has always kind of been in my bones.
42:28
SPEAKER_02: I lost my grandfather when I was a young age, so I always like wanted to capture memories, I didn't realize how much I would need those memories.
42:36
Michael: How ironic is that, right?
42:38
SPEAKER_02: Isn't that funny?
42:39
SPEAKER_02: Yeah, and so yeah, I mean, I like yeah, I just say capture everything.
42:45
SPEAKER_02: I I'm definitely the most annoying mom, but I have so many pictures of my kids, and my son is two and a half.
42:52
SPEAKER_02: Now you want to know it's crazy.
42:54
SPEAKER_02: Again, talking about episodic memory.
42:56
SPEAKER_02: I don't remember.
42:57
SPEAKER_02: I know my son, I know his age, I know what he likes to do, but I don't have like visual memories of him.
43:02
Michael: Do you remember giving birth to him?
43:05
SPEAKER_02: I remember the video of giving birth to him.
43:07
SPEAKER_02: We took video that day.
43:08
SPEAKER_02: I don't remember that day, I don't remember how I felt, but I have so many pictures and videos.
43:13
SPEAKER_02: Same for my daughter, like that I can go back and relive that whenever I want.
43:17
SPEAKER_02: And again, like it's an adaptive tool for someone who's memory impaired.
43:22
Michael: And whereas like you're the perfect person to have this happen to, right?
43:28
Michael: I'm sorry to say.
43:30
SPEAKER_02: No, it it it it's it's kind of true.
43:33
SPEAKER_02: I mean, the first videos were made by my sisters and partner at the time because it was like, this is so weird, what's happening, right?
43:41
SPEAKER_02: Like that's what we do as a society.
43:43
SPEAKER_02: We pull out our phones when something weird happens.
43:46
SPEAKER_02: But then, you know, yeah, like I took videos with my daughters, and and and and now sometimes I'll just like the other night my son was falling off to sleep.
43:55
SPEAKER_02: And and if you have kids, you know, there's there's these quiet moments, and you're like, they're so there's they're so chaotic when they're awake, but the second they fall asleep, you're like, oh, I'm so in love with you, you're so perfect.
44:07
SPEAKER_02: And I know I'm not gonna remember those moments.
44:09
SPEAKER_02: And so I just I pull out my phone and I just take videos of him and like us laying together.
44:14
SPEAKER_02: And and so I'm I'm always going to have that, even if I don't remember it.
44:19
SPEAKER_02: And that's the most, you know, when people say, like, if your house was on fire, what would you take?
44:26
SPEAKER_02: My pictures and videos, those are my memories.
44:29
Michael: Wow, man, you just gave me goosebumps, serious goosebumps.
44:34
Michael: Wow, that's some powerful crap, man.
44:37
Michael: How are you with your sisters now?
44:39
Michael: Still really close?
44:40
SPEAKER_02: Yeah, we're pretty close.
44:41
SPEAKER_02: I mean, you know, I think that my life has taken just a totally different turn, right?
44:48
SPEAKER_02: I have kids, they don't, but they're younger, they're a lot younger than you too, aren't they?
44:52
SPEAKER_02: They're a little bit younger than me.
44:53
SPEAKER_02: Yeah, so they still live very much the old Nesh life.
44:56
SPEAKER_02: I would say they still live downtown and those sorts of things.
44:59
SPEAKER_02: Yeah, but we live close enough to each other.
45:01
SPEAKER_02: We see each other maybe a couple times a month, and we see each other under sort of different strict circumstances.
45:08
SPEAKER_02: Like I don't meet them out or at parties or anything, and that Was sad for me because I really missed that and I maybe felt like I was being invited to things less, but I understand why.
45:21
SPEAKER_02: And I'm sure that was really difficult for them to have to say, you know, if Nesh comes, then we're gonna have to just take care of her this whole time.
45:29
SPEAKER_02: And that's not what we want.
45:31
Michael: So I'm sure they weren't really saying that.
45:34
Michael: You were thinking that, but they weren't.
45:35
SPEAKER_02: Well, they weren't saying that.
45:36
SPEAKER_02: But I think that like allowing them to have space where they're not my caretaker, right?
45:40
SPEAKER_02: Is the most important thing.
45:42
SPEAKER_02: And uh acceptance means accepting the relationship in whatever form it takes, and you know, and I think being grateful that you have a relationship in any form.
45:53
SPEAKER_02: But I mean, my sisters are so funny, they're so smart, they're so you know, beautiful and brilliant, and I think the world of them, and I I uh yeah, no.
46:02
Michael: And the reason I bring them up is because I'm wondering about and I don't know, you know, what would you know, your parents may be there right there too.
46:10
Michael: But at what point did they feel like they had it to help?
46:16
Michael: They had it to help, listen to me.
46:17
Michael: They had to help manage the crisis that was now their sister and or your mom and dad.
46:25
Michael: And and where did that become intrusive for you?
46:30
Michael: Or did it or did it not?
46:32
Michael: Or and was there ever any kind of friction around that?
46:35
SPEAKER_02: I would certainly say there was some level of friction.
46:38
SPEAKER_02: This is interesting.
46:40
SPEAKER_02: So, you know, I don't know that they ever felt fully like they had to manage my situation because my partner at the time was there, my parents were there, and they had things pretty much covered.
46:56
SPEAKER_02: At the beginning, like they did, you know, they did show up.
46:58
SPEAKER_02: My partner called them and was like, Nesh is being really weird.
47:01
SPEAKER_02: Like, I need you to come over.
47:02
SPEAKER_02: They they got me to the hospital.
47:05
Michael: So young, all of you, when this happened.
47:07
SPEAKER_02: Yeah, yeah, like we don't know what to do.
47:09
Michael: Amazing the maturity that comes through and the around the bonding of this episode and brings us family to this level of of just commitment to each other.
47:20
SPEAKER_02: You know what I will say though, and I acknowledge is that with my parents, especially having to focus on this Nesh crisis now, right?
47:32
SPEAKER_02: I imagine, and I can't speak for my sisters, I can't speak for my parents, but that left a lot less of my parents to parent my siblings, even though we're all adults and all of those things, like you still want your parents.
47:45
SPEAKER_02: And so I can imagine that that did not feel great for my sisters, and and that's kind of where the guilt comes into because I feel on your part.
47:55
SPEAKER_02: Yeah, because I can't manage my level of need, unfortunately.
47:59
SPEAKER_02: I I I wish I didn't, you know, and of course now my level of need is much lower, but I can't manage that.
48:05
SPEAKER_02: I can't it obviously my parents are the natural ones who would step in in that scenario, but then I know my sisters are losing some because my parents have finite day hours in their day, right?
48:16
SPEAKER_02: So, like if you're carrying taking that through.
48:18
Michael: So I mean, I'm so glad that you brought this up independent of me bringing it up, because it's another thing that I'm very interested in try to study and write about as much as I can is the impact, the relationship between mom and dad and the other siblings in the home, and where where the other siblings in the home may feel the resentment towards the toward the the person with the injury, and how how does that all look?
48:39
Michael: And it's I've never even considered you feeling guilty that you were taking too much of your parents away from that.
48:47
SPEAKER_02: I never because like I can, you know, I'm I'm memory impaired, I'm not an idiot.
48:54
SPEAKER_02: So like I can I I I can sense the shifts, right?
48:58
SPEAKER_02: Like that that then happen as a result of that.
49:02
SPEAKER_02: And I don't want those shifts to take place.
49:04
SPEAKER_02: I want everything to be the way it always has been, and I don't want my parents to feel overwhelmed, and I don't want my sisters to feel you know overwhelmed or ignored, but and and but I know I also can't change anything right now, and it's it's a horrible, crushing sense of guilt.
49:21
SPEAKER_02: Again, that's when self-loathing and self-harm and those things will then like creep into the mind.
49:27
SPEAKER_02: So it's really difficult.
49:29
SPEAKER_02: And and the thing is, everyone's experiencing these things alone.
49:33
SPEAKER_02: Like my the siblings will never share their resentments because they don't want to, they're resentful, but they don't want to hurt anyone.
49:39
SPEAKER_02: The parents will never share that they're overwhelmed, the person, you know, will never share that they're feeling guilty.
49:45
SPEAKER_02: And so it's just a lot of people in the same ecosystem suffering in silence.
49:50
SPEAKER_02: And then that leads to this sort of like wheel of resentment.
49:54
SPEAKER_02: And then it's, you know, like it's like the parents are mad that these siblings aren't being more understanding, but these siblings are mad that the parents, you know, and like every family, even mine, like these things happen.
50:07
SPEAKER_02: I don't have an answer for it, but I think being able to talk about these things openly helps.
50:11
SPEAKER_02: Like, I think even knowing that I felt guilt might have been helpful to my sisters, or it's really interesting because it's it's also a group of people who love each other so deeply, they don't want to hurt the other with their own feelings.
50:26
Michael: No, and that certainly comes across, and and it's and it really is interesting how it all gets so intertwined, I guess, is the way you're describing it.
50:35
Michael: And but everybody adapts and everybody does what they have to do, and and and it's it's a new normal.
50:45
Michael: And I don't know, I don't know if that's a good thing or a bad thing.
50:48
SPEAKER_02: In some situations, it's probably a real shitty thing, but you know it can feel shitty in the moment, but I think that things do settle, the dust settles, and again, it comes into accepting a new normal, and whether that means, you know, if I'm accepting my limitations better, then I may not need as much caregiver, caregiving.
51:10
SPEAKER_02: And then that leads to more acceptance, and that leads to everyone feeling more human, which leads to more acceptance.
51:16
SPEAKER_02: So it's it's sort of that kind of thing.
51:18
SPEAKER_02: Sometimes it's very difficult to get to that point because it means setting up checkpoints, it means setting up other sources of aid, and it's very difficult to get there, but it is, I think, possible.
51:30
Michael: And and if nothing else, this is a great advertisement, as you said earlier, for counseling, right?
51:36
SPEAKER_02: Yeah, absolutely.
51:37
Michael: Counseling, counselors are good, man.
51:40
Michael: I I love a good counselor, everyone should have a counselor.
51:43
SPEAKER_02: I don't know why, I don't know why this is still a conversation.
51:45
SPEAKER_02: I do want to mention something that you brought up because I'm aware of it in different circumstances now.
51:54
SPEAKER_02: I don't really talk about this a lot, but one of my one of my kids is on the spectrum.
51:59
SPEAKER_02: And I always and and so requires a lot more care, of course.
52:04
SPEAKER_02: And then I always wonder about the sibling, because the sibling then has to become the easy sibling because I'm always worried about I'm just calling them the sibling and the sibling, so I don't say he or she.
52:17
SPEAKER_02: But so that, you know, and so I try to be very aware, and the one sibling can be just exhausting to care be a caregiver for, but then the other sibling can easily get lost in that and then grow up feeling resentful and ignored and almost like punished for being the easy kid.
52:34
SPEAKER_02: And so I think about that a lot and I try to be very aware and cognizant and spend you know extra time with the one sibling, and it's tiring and it's all of these things, and I don't have a full answer.
52:45
SPEAKER_02: I just can acknowledge that these are the realities that people, especially caregivers, are dealing with.
52:51
Michael: Right.
52:51
Michael: So, and and you also have a very special circumstance because you have your own problems, your own kid, right?
52:59
SPEAKER_01: Listen, kid, yeah.
53:01
Michael: But but it and it is interesting, but you know what I find in in I don't know, the older you get or whatever, you probably see it too, but kids who grow up in a household that has something in it, i.e.
53:16
Michael: autism, or my my really good friend who's been on my show a couple of times, Rebecca Iantoni, she grew up with a sister who was profoundly developmentally disabled.
53:27
Michael: And I think that you're exposed to so much so early, you become so accepting of the disabilities in other people, and you want to work.
53:38
Michael: I mean, she's a she's adopted a really tough special needs kid because she wanted to give back like her parents had given to her older sister for all those years.
53:49
Michael: So what I see is that some of the best advocates, lawyers, counselors, clinicians, caseworkers grew up in a family where they were exposed to that at an early age and they had that empathy that just drips out of them.
54:05
SPEAKER_02: I honestly think it can go one of two ways.
54:07
SPEAKER_02: And I think it depends, you know, like I and I probably it probably doesn't happen like the median more often, like it's it's the extremes.
54:15
SPEAKER_02: It's you're so you feel so ignored and resentful, or you become really empathetic.
54:21
SPEAKER_02: And funnily enough, my daughter, so the three careers that she wants to be is she wants to be a lawyer that helps women who are in difficult situations.
54:32
SPEAKER_02: She wants to be a researcher that researches the brain, or she wants to be a counselor.
54:36
Michael: And I'm like, Yeah, yeah, yeah.
54:40
Michael: And there's that empathy, you know, and that's young young girls.
54:44
Michael: She's young, man.
54:45
Michael: That's that's awesome.
54:46
SPEAKER_02: That's she's real, oh my god, she's she's you know, I another level of guilt is I think about it a lot.
54:53
SPEAKER_02: My daughter was six, you know.
54:55
SPEAKER_02: Imagine being six and your mom doesn't really recognize you.
54:59
SPEAKER_02: I I can't imagine what that does to you.
55:01
SPEAKER_02: The child, the child, and but like what's interesting is my daughter took it like she's it's so perspective-based because she's like, Yeah, you forgot me, but no matter what, you didn't really forget me.
55:11
SPEAKER_02: You still worried about me, like you love me so much.
55:15
SPEAKER_02: And my daughter's life has deeply been shaped by what has happened and really the ongoing things, like you know, there's less of old mommy that like runs around, and and but what's been but that's given me a lot of guilt, is what I meant to say, is like I feel really guilty about that, even though I'm sure one day she'll say, like, these are the things that shaped me, and I love you, mom, and all of that.
55:37
SPEAKER_02: Like, I still feel guilty.
55:38
SPEAKER_02: I don't, I don't want to bother my my girl's life at all, you know.
55:42
Michael: No, I it makes sense, and it's very heartwarming and and touching to hear you saying that.
55:48
Michael: And it's also very heartwarming and touching to hear that she's already got it in her head that she's gonna give back and help to whatever extent she can as she grows up too.
55:58
Michael: But you also she's she's young, she's got a few years to go to be a Hellion teenager, too.
56:05
SPEAKER_02: No, you know what?
56:06
SPEAKER_02: I think she's she might be a Hellion teenager, but I think that uh she's gonna be all of our bosses one day.
56:12
SPEAKER_02: So be nice to her.
56:14
Michael: Hey, listen, you know what?
56:16
Michael: Maybe she can make sense out of this crazy effed up world that we're in, right?
56:21
SPEAKER_02: If anyone can, it's her.
56:23
Michael: Great.
56:23
Michael: Uh Nash, I can't even thank you.
56:25
Michael: This has been like the I can't even believe this has been an hour already.
56:28
Michael: And I this the time flew.
56:30
Michael: I'd love to talk to you again.
56:32
Michael: I'd love to have your partner on for her perspective and to share how things are going.
56:37
Michael: This is just you, I you are so like vivacious and funny.
56:40
Michael: It's just it's effervescent.
56:42
Michael: And I just really you really touched me with your with your talk, and um I'm really honored to have you.
56:48
Michael: So thank you for being here.
56:50
SPEAKER_02: No, thank you.
56:51
SPEAKER_02: I mean, it's a it's a pleasure to help other people in the space because yeah, and I know what it's like to need the help and to not feel alone.
56:59
SPEAKER_02: So happy to be here.
57:01
SPEAKER_02: Thank you so much.
57:07
Michael: Oh my god, you guys.
57:09
Michael: So I hope that you all feel the same, like just energy that comes out of uh Nesh.
57:17
Michael: And I I I'm I'm without words right now because having had that talk with her has just uh brought me up so much.
57:27
Michael: It's given me, I feel like full of energy, like I'm gonna go run around the block.
57:31
Michael: And we all know that that's not true.
57:33
Michael: But you know what I'm saying.
57:35
Michael: And man, we we we see here that living with an injury, living with an illness isn't just about recovering from the event.
57:42
Michael: It's not just about uh, you know, I my arm was in a cast for six weeks.
57:47
Michael: It's about learning to operate in a world um that doesn't quite fit your current operating system, maybe, if that's a neat way to say it.
57:59
Michael: So I really thank Nesh for being so incredibly candid about um the daily, the daily trade-offs, the exhaustion, um, the resilience that it takes her, her partner, her family, her caregivers, and and you know, everybody that surrounds um an individual, because we're not trying to fix somebody, guys.
58:23
Michael: We are trying to take care of the aspects of life that they may not be able to take care of for a little while in hopes that someday they will rebound and be able to do the things that they were always uh capable of doing.
58:39
Michael: Um I just really uh am inspired by Nesh, and I'm really happy and so humbled and grateful that she will uh she she would be here and um we will be having her back for bigger, broader discussions about these topics.
58:57
Michael: So, guys, look at what Nesh is doing, guys.
59:01
Michael: Look at what she has done.
59:03
Michael: She's a great example of how we really all are holding it together, even if it's just kinda.