Lying on the Floor in Public

Summary

Feminist Survival Project: Episode Summary – "Lying on the Floor in Public"

Release Date: July 31, 2025

In the "Lying on the Floor in Public" episode of the Feminist Survival Project, hosts Emily Nagoski and Amelia Nagoski delve deep into the intricate experiences of living with chronic dizziness, balance disorders, and the broader implications these conditions have on daily life, autonomy, and societal perceptions of disability. This candid and insightful conversation not only sheds light on the personal struggles associated with vestibular migraines and orthostatic intolerance but also explores the intersectionality of disability and feminism.

1. Introduction to Chronic Dizziness and the Dizziness Handicap Inventory

Emily begins the episode by introducing the concept of the Dizziness Handicap Inventory (DHI), a tool used to assess the impact of dizziness on an individual's life. She recounts a recent personal experience where she administered the inventory to herself and Amelia, comparing their scores to understand the severity of their conditions.

Emily [00:13]: "I'm gonna ask you 25 questions... and we're gonna give you a score."

The DHI assesses dizziness across three categories: functional, physical, and emotional. Emily shares her score of 54, categorizing it as a severe handicap.

Emily [04:24]: "So, that's the dizziness Handicap Inventory."

2. Personal Experiences with Balance Disorders and Vestibular Migraines

Emily narrates her journey with vestibular disorders, emphasizing her struggles with vertigo and balance issues. She explains how these conditions have progressively worsened over the years, affecting her ability to perform everyday tasks.

Emily [05:13]: "I literally just have terrible balance... I have holes in my running leggings because of all the falling down."

Amelia contributes by discussing her own condition, orthostatic intolerance, a consequence of long Covid, highlighting how it limits her mobility and necessitates the use of assistive devices like a cane and accessible parking placards.

Amelia [16:46]: "I have an accessible parking placard because I cannot walk distances more than I'm going to say 40ft without having to lay down..."

3. Impact on Driving and Mobility

A significant portion of the discussion centers around the challenges of driving with a balance disorder. Emily reveals how her dizziness affects her driving habits, making it difficult to perform quick head movements essential for safe driving.

Emily [08:53]: "I cannot move my head too fast... it affects my driving."

Amelia shares her experiences with driving disabilities, emphasizing the necessity of advanced driver-assist technologies to enhance safety and reduce the cognitive load required to compensate for their physical limitations.

Amelia [32:56]: "In a world where every car has air conditioning... luxury car things are now driver assistance."

Both sisters highlight the financial burden of acquiring vehicles equipped with necessary assistive technologies, which are often classified as luxuries but are essential for their mobility and safety.

Emily [35:11]: "I love lane correction... I need my car to help me more."

4. Coping Strategies and Assistive Technologies

The Nagoskis discuss various strategies they employ to manage their dizziness and maintain independence. Emily mentions behavioral compensations and the importance of renting cars with the latest assistive features.

Emily [35:26]: "I love it when the wing mirrors have a thing that tells you when there's a car in your blind spot..."

Amelia adds insights into how specific car features, such as automatic headlights and high beams, significantly enhance their driving experience by reducing the need for manual adjustments that can exacerbate their conditions.

Amelia [38:47]: "High beams should automatically turn off when there's oncoming traffic... it's much faster than I would be."

5. Social Impacts and Disability Perception

The conversation shifts to the societal perceptions of disability, particularly the invisibility of certain conditions like Emily's vestibular disorders. They discuss the stigma and misunderstandings faced when displaying visible signs of disability, such as lying on the floor in public during a dizzy episode.

Emily [62:42]: "I think if you have to lie on the floor in public, you're... a sign of disability."

Amelia shares anecdotes about public reactions to their conditions, emphasizing the lack of understanding and the emotional toll it takes when assistance is perceived as unnecessary or when their needs aren't visibly apparent.

Amelia [54:50]: "I warned them because I knew that people freak out when you lay on the floor."

6. The Intersection of Autism and Disability

Emily explores the connection between her autism and her balance disorder, suggesting that hypersensitivity and motor disorders like dyspraxia often coexist within the autistic population. This intersectionality complicates their experiences, as societal structures are typically not designed to accommodate such nuanced disabilities.

Emily [41:47]: "I believe it is tied to my autistic brain... autistic people often have like motor disorders..."

7. The Importance of Taking Inventory and Seeking Help

A pivotal moment in the episode is when Emily takes the Dizziness Handicap Inventory, leading to a profound realization of how severely her dizziness impacts her life. This act of self-assessment underscores the importance of recognizing and quantifying one's disabilities to seek appropriate support and accommodations.

Emily [49:41]: "If you have chronic dizziness... I would like to hear what that is like for other people."

Amelia echoes this sentiment, advocating for broader conversations around chronic dizziness and the need for societal acknowledgment and support.

8. Conclusion: Recognizing and Addressing Chronic Dizziness

In wrapping up, Emily and Amelia emphasize the necessity of understanding and addressing chronic dizziness not just as a personal struggle but as a societal issue that requires empathy, support, and structural accommodations. They encourage listeners experiencing similar challenges to take inventories of their conditions and seek out supportive communities and resources.

Amelia [60:26]: "I'm doing the most environmentally responsible thing I can in the context of also getting the help I need."

Emily [63:19]: "That's disability. It's not a crisis in my body. It just feels like, oh, I know how to fix this."

Overall, this episode serves as a powerful testament to the hidden struggles faced by those with chronic dizziness and balance disorders, highlighting the urgent need for greater awareness, understanding, and support within feminist and broader communities.

Transcript

[Emily]

This is gonna.

[C]

This.

[Emily]

This here is gonna be a short and comparatively niche one because it's a thing that I have been looking at and had an experience yesterday that I thought I would share. I'm gonna ask you 25 questions. Oh, 25. Seems like 25 questions that you're gonna answer. And we're gonna give you a score, and we're gonna compare that to my score, and you're gonna think about the. Your experience of dizziness.

[C]

Okay.

[Emily]

Of being dizziness. When you think about your dizziness, first question. Does looking up increase your problem? The options are yes, so sometimes and no.

[Amelia]

Sometimes.

[C]

Okay.

[Emily]

Because of your problem, do you feel frustrated?

[C]

Yeah.

[Emily]

That's like a yes.

[C]

Yes.

[Amelia]

Yes. Yes, I feel frustrated.

[Emily]

Because of your dizziness, do you restrict your travel for business or recreation?

[C]

Yes.

[Emily]

Does walking down the aisle of a supermarket increase your problems?

[C]

Yes.

[Emily]

Because of your problem, do you have difficulty getting into or out of bed?

[Amelia]

Sometimes.

[Emily]

Does your problem significantly restrict your participation in social activities such as going out to dinner, going to movies, dancing, or going to parties?

[C]

Yes.

[Emily]

Because of your problem, do you have difficulty reading?

[Amelia]

No.

[Emily]

Does performing more ambitious activities such as sports, dancing, household chores, sweeping, putting the dishes away increase your problems?

[Amelia]

Yes.

[Emily]

Because of your problem, are you afraid to leave your home without having someone to accompany you?

[Amelia]

No.

[Emily]

Because of your problem, have you been embarrassed in front of others?

[Amelia]

No.

[Emily]

My first reaction to that question was like, no. Should I have been. Do quick movements of your head increase your problem?

[C]

No.

[Emily]

Because of your problem, do you avoid heights?

[C]

No.

[Emily]

Does turning over in bed increase your problem?

[Amelia]

Sometimes.

[Emily]

Because of your problem, is it difficult for you to do strenuous homework or.

[Amelia]

Housework or yard work?

[C]

Yes.

[Emily]

Because of your problem, are you afraid people may think you are intoxicated sometimes? Again, no. Should I. Does walking down a sidewalk increase your problem?

[Amelia]

Yes.

[Emily]

Because of your problem, is it difficult for you to concentrate?

[Amelia]

No.

[Emily]

Because of your problem, is it difficult for you to walk around your house in the dark?

[C]

No.

[Amelia]

Sometimes. Sometimes.

[Emily]

Sometimes.

[C]

Yep.

[Emily]

Because of your problem, are you afraid to stay home alone?

[C]

No.

[Emily]

Because of your problem, do you feel handicapped?

[C]

Yes.

[Emily]

Have. Has the problem placed stress on your relationships with members of your family or friends?

[C]

No.

[Emily]

Because of the problem?

[Amelia]

Not that I know of.

[C]

Yeah.

[Emily]

Not that I. Because of your problem, are you depressed?

[C]

No.

[Amelia]

I'm depressed because I have depression.

[Emily]

Right?

[C]

Yeah.

[Emily]

Does your problem interfere with your job or household responsibilities?

[C]

Yeah. Yeah. Yeah.

[Emily]

Does bending over increase your problem?

[C]

Yeah.

[Emily]

Okay, so that's 20 and 10 and 10 and 20. Okay, so you scored Jiminy Cricket of 50.

[C]

Okay.

[Emily]

Which puts you at the top end of moderate handicap for dizziness. This is the dizziness Handicap Inventory.

[Amelia]

Okay. I mean, I have orthostatic intolerance. It's one of the conditions of long Covid.

[C]

Yeah.

[Emily]

So your dizziness is caused by pots, basically.

[C]

Yeah.

[Amelia]

It's not clinically pots. I don't qualify clinically for pots.

[Emily]

Okay.

[Amelia]

There are numbers associated with POTS that I don't meet, but the experience is a POTS experience.

[C]

Yeah. Yeah.

[Emily]

So my dizziness is straight up vertigo. I have a vestibular disorder. I have a balance disorder. My balance is really bad. I first discovered that I literally just have terrible balance when I went to a physical therapist to get evaluated for why I'm so sensitive to motion, why I'm so intensely prone to motion sickness.

[C]

Yeah.

[Emily]

And they do a test where you're standing on, like, a very squishy mat.

[C]

Yeah.

[Emily]

And when you stand with your feet together on a squishy mat, you're taking away your. Your musculoskeletal ability to compensate for what your vestibular system can't do. So you stand with your feet together and your arms crossed over your chest, and the PT lets go of your shoulders. And if you have a normal vestibular system, you stay standing upright because you have a normal. And your eyes are closed, obviously. And I immediately fell over. And I said, but that's normal, right? And she said, no. And I was like, oh. So that was in, like. That was, like, 10 years ago.

[C]

Okay.

[Emily]

And it has become increasingly obvious not only that my balance is bad, but that my balance is getting worse. So, like, back in 2015, I looked back and I was like, oh, so maybe it's not normal that when I go for runs with my dog, I fall down, like, 20% of the time. Like, I trip and fall on the ground. I have holes in my running leggings because of all the falling down. I do.

[C]

Yeah.

[Emily]

And I was like, I guess that's not, like, a normal part of human experience. And a lot of my sort of clinical life in therapy and, like, being evaluated for stuff is learning that what I experience isn't actually normal.

[Amelia]

So I.

[Emily]

So I took this yesterday, and I scored a 54, which is right at the bottom end of severe handicap. Yeah. And what particularly struck me were. Well, first of all, does walking down the aisle of a supermarket increase your problems? That's a big old yes for me.

[C]

Yeah.

[Emily]

And I had always attributed that, and I do. I think that my balance disorder is sort of, like, linked to my autism in a way, because It's a hypersensitivity. There's too much information coming in about my position.

[C]

Right.

[Emily]

And my brain cannot process all the information. My brain stem specifically can't. And I had always attributed my hypersensitivity to like the aisles of a grocery store, especially if they're above my head, to just like. That's autistic overwhelm. But it's a vestibular issue because of the information.

[C]

Yeah.

[Emily]

Another one that hit me really hard was, do quick movements of your head increase your problem? Which forced me to acknowledge that I. That question forced me to acknowledge that I do avoid moving my head too fast. It affects my driving. Because when you have to look both.

[Amelia]

Ways, you gotta look. Like right now.

[C]

Yeah.

[Amelia]

Like you gotta look right now. I mean, when you're driving, you gotta look right now.

[Emily]

You have to look right now. When you're like checking your blind spot and you're trying to like change lanes.

[Amelia]

You gotta go quick.

[C]

Yeah.

[Emily]

You have to go really fast. So the longer it takes you to check your blind spot and look back, the longer you are looking away from the road ahead of you.

[C]

Uh huh. Yeah.

[Emily]

So that was.

[Amelia]

Oh, okay. This explains. Okay. Why you.

[Emily]

Neither you nor Rich enjoys being a passenger while I drive.

[C]

Yeah.

[Amelia]

You, let's just say slowly look between things. You spend too much time looking away from the road.

[Emily]

For sure. I spend too much time looking away from the road. And it was only yesterday that I realized the reason I do that is because I cannot move my head too fast.

[Amelia]

That makes sense. Sense. And y. Because I was like, why don't you look at the road? Why don't you just glance back at the road real quick?

[C]

That's why, that's.

[Emily]

That's why glancing real quick is not a thing that exists for me. Or if I do, like, I pay a major price for it, basically. Okay. So if you put your hand. That's super sudden.

[Amelia]

Especially because the vestibular condition means that you cannot be a passenger in a.

[Emily]

Car without heavily cannot be a passenger in a car. So that's. And it's progressive. So the worse it gets, like, the worse my driving will get. So eventually it's gonna. Basically my only way of moving around in the world is gonna be walking and maybe riding a bike. But that requires a whole lot of balance.

[C]

Yeah.

[Emily]

And my walking is limited by my intermittent claudication. So no wonder I have spent so much time over the last couple years feeling trapped in my body.

[C]

Yeah.

[Emily]

I had some feelings yesterday.

[Amelia]

Yeah.

[Emily]

Because I was like, oh, this is real bad. So Grocery stores, fast movements of my head. Another thing I've never heard anyone talk about or seen written down is turning over in bed. Like, that's the thing that I have for a long time now, 15 years or more, like, been cautious and slow and gentle when I turn over in bed, when I just switch from one side to another. So I also. So I'm in charge of buying stuff. Like our mat. When we replaced our mattress, I was in charge of buying it. And I specifically chose the one you could get on the Internet with the best motion isolation. Because Rich getting into the bed or the dog who's jumping up on the bed could be enough motion, literally, to trigger a migraine. Here's the thing, is that, like, when I feel dizzy, when I feel. When motion sickness gets activated, that's a migraine trigger for me. When I was searching for some medical support to make my motion sickness tolerable, a GP literally said to me, why can't you just be motion sick? The fuck? Yeah, that's how I felt. But she was feeling frustrated because, like, nothing that she was suggesting. I, like, tried it and it hadn't helped, and she was feeling like, well, why can't you just be motion sick? And, like, the reality is that, like, if I cross a certain threshold, it's not just that I don't feel good, it's that that triggers a migraine, and there's six to 10 hours of my life down the drain. And, like, usually if I'm traveling, it's because I need to be somewhere doing something. Not to mention just how fucking awful migraines are. And my migraines, just for clarification, are not, like, headache migraines. They are vestibular migraines. They are dizziness migraines. So, yeah, tasks like emptying the dishwasher because you have to, like, bend down and stand back up and turn around.

[Amelia]

Can I give you a solution for that? Well, no, it won't be a solution for you because of the, like, quickly looking back and forth that is such a part of loading and unloading the dishwasher. Your drawer dishwasher. But the drawer dishwasher, you don't have to bend down. It's nice.

[Emily]

Yeah, I might consider that to make.

[Amelia]

It an accessible dishwasher. Dude.

[Emily]

Yeah, maybe I should strongly consider that because it is a. You know, we're not 50. And for loading and unloading the dishwasher to be a task I need to be really cautious about. It just feels like I am. I feel about 65 in my body.

[C]

Yeah.

[Emily]

And part of that is, like the sort of chronic fatigue of lung Covid. But as I took this dizziness inventory, I recognized for the first time just how very much of my life is. It's just harder because of being dizzy.

[C]

Yeah.

[Amelia]

I mean, like, the value of an inventory is like actually recording how much do you have?

[C]

Yeah.

[Amelia]

Like, when you actually take stock, it's. Oh, that's quite a lot, isn't it? So this is.

[Emily]

It's divided into three categories. These answers. There's functional, physical and emotional. And my emotional score is very low. Like, I don't have the. Like, I'm worried that people. I'm worried about embarrassing myself or I'm worried that people will think I'm drunk.

[C]

Right.

[Emily]

I don't have that. What I do have. Let me say that I don't typically look. I don't typically look like I have a balance disorder. We took dance lessons for many, many years. I then was a long distance cyclist. I then became a rock climber. Like, I have done physical activities that required balance and therefore trained my bones and muscles to compensate for my brain was never very good at doing.

[C]

Yeah.

[Amelia]

You were a competitive Lindy Hopper.

[C]

Yeah.

[Emily]

Which is a thing I have now lost. I can't do that. So you remember spotting for those who are not dancers. When you spin in one place, you are trained to find a spot in the space in front of you to focus your attention. So you turn your body without turning your head. You keep your gaze on that spot as long as you can. And then as you continue moving your body around, you whip your head around right back to that spot. It's called spotting. So that you reduce dizziness from spinning so that you can spin longer again. I was a competitive. Winning competitions. Lindy Hopper, and spinning was a thing I did a lot in addition to the 16 years of ballet lessons. And I can no longer do that. That's gone for me.

[C]

Yeah.

[Emily]

I can do it relatively slowly, but.

[C]

Right.

[Emily]

So that's a loss in that the.

[Amelia]

Fact that it impedes your driving, I think is the most compelling argument in terms of handicap.

[C]

Yeah.

[Emily]

And I didn't know until yesterday.

[C]

Yeah.

[Emily]

That that was what was going on.

[C]

Yeah.

[Emily]

And when I talked to Rich about it, he also immediately was like. Oh, yeah. Cause he. He does not. He doesn't enjoy being a passenger with anyone. But I am a particularly distressing driver for him.

[C]

Yeah.

[Amelia]

No, he and I have had conversations about your driving.

[C]

Yeah.

[Emily]

You do not experience me as a safe driver. And. And I did just get into a car accident.

[C]

Yeah.

[Emily]

Also having difficulties reading because of my balance. The eye movement associated with, like, reading across lines.

[C]

Yeah.

[Emily]

Has increased. These are.

[Amelia]

These are. Sorry, is this another category of the questions, the emotional.

[Emily]

So the three. It was another question where I was like, oh, fuck, that's a balanced thing. That's a dizziness problem. So I just.

[Amelia]

Again, for the record, I have an accessible parking placard because I cannot walk distances more than I'm going to say, 40ft without having to lay down or at least sit down. And even sitting is not enough. I usually have to lay down unless there are some circumstances because of the combination of fatigue, but mostly orthostatic intolerance. My blood pressure. My autonomic nervous system sucks ass and cannot regulate my blood pressure so that when I stand up, my blood pressure does not increase slightly so that I get blood in my head. My body depends on gravity.

[Emily]

So when you. When you change postural positions, when you go from sitting to standing or lying down to sitting.

[C]

Yeah.

[Emily]

There's a change in your blood flow.

[Amelia]

There's supposed to be a change in your blood flow in order to increase blood flow to your brain. And my body doesn't do that. And it also. If I stay standing or even sitting just upright for. For too long a period of time, it just never keeps up with that.

[C]

Yeah.

[Amelia]

So I need to lay down a lot. And so I have an accessible parking placard for that reason so that I can get to the UPS store or the CVS and go in with a cane or a rollator so that if I have to stand in line, at least I can sit on my rollator, like, because I get dizzy just from being upright. My orthostatic intolerance is. I have a disability, like an accessible parking placard So I can park in the. In the. In the space with the wheelchair on it. Legally, because I can't walk distances.

[C]

I.

[Amelia]

Can'T even sit up for a while. And being able to park closer to things makes it possible for me to do regular, everyday life things. So, I mean, what we're talking about is a disability inventory. Are the things you're experiencing qualify as disability? And yes, I have a legal, accessible parking placard. You know, legally stating that I'm disabled because of the combination of chronic fatigue and orthostatic intolerance.

[C]

Yeah.

[Emily]

I don't have.

[Amelia]

You maybe should, especially because you can't use a wheelchair. And when I use a wheelchair, like, where I park doesn't matter.

[C]

Yeah.

[Emily]

Because of my fucking balance disorder, I can't use mobility Aids that are motorized.

[C]

Yeah. Yeah.

[Amelia]

And I can. So, like, I very rarely use my accessible placard because either there's a space that's not like a reserved space that's, like, right next to it, and that's fine for me, or I can park anywhere because I can put my wheelchair together and, you know, just scoot.

[C]

Right.

[Emily]

Disability, the biopsychosocial model of disability. Sometimes you're disabled because of stuff that's actually happening in your body, and sometimes you're disabled because of the infrastructure not being designed to accommodate you.

[C]

Right.

[Emily]

And having a wheelchair makes many more spaces accessible to you.

[C]

Yes. Yes.

[Emily]

Though we have talked very frequently. Well, not very frequently, but we have talked about the ways that the world is not really awesome for people who wheel around the world instead of walking around the world.

[C]

Yeah.

[Amelia]

Oh, yeah. No, it's not that a wheelchair solves my problem. Both because there are problems interacting with the world when you're in a chair, but also because sitting fully upright is not a solution to my orthostatic intolerance. It's a solution to the fatigue, but it's not a solution to the orthostatic intolerance.

[C]

Yeah.

[Amelia]

I recently got a new chair that reclines.

[C]

Yeah.

[Amelia]

So that I can change position, and sometimes that helps.

[Emily]

So my dizziness is not orthostatic intolerance. It is not about my blood pressure. It is about my actual balance.

[C]

Right.

[Amelia]

It is also. Well, I was going to say yours seems to be more long term, more permanent, but I've been here five years now, so.

[Emily]

Yeah, mine way predates. Covid way predates, and as far as I know, is only progressive. There's been recent research really honing in on the neurological structure of the thing I have, which is great. I love a structural diagnosis, God knows. But one of the great things about having a structural diagnosis is it provides a target for medical intervention.

[C]

Yeah.

[Emily]

So there may be the development of a treatment of some kind, maybe medicine, maybe a therapy that can actually, like, reverse this progressive disease. So the nature of the disease. So my balance, as most people know, is made up of a couple of, like, tiny, tiny organs in your inner ear that keep track of movement in different directions and movement side to side and movement up and down. And it sends, like, all this different kind of information to your brain stem. And your brainstem's first job is to integrate that information before it sends it further up into the brain. Your brain stem is like your lizard brain. This is very ancient, evolutionarily speaking, brain tissue. And that is where my Situation is it is not a problem with the peripheral hardware inside my skull, like between my ears. It is with my brain stem's capacity to integrate the information. So if you just information, like, just like lots of information is coming in, and your brain is supposed to be like, let me assemble this into something coherent. And it cannot assemble it into something coherent. And the result is that I'm dizzy at least a little bit almost all the time. And I have to be cautious in the way I move my head and eyes in order not to increase my dizziness. And the condition I have is called vestibular migraines. And one of the main.

[Amelia]

Like, the.

[Emily]

Thing I have found as like a diagnostic differentiator between people with vestibular migraines versus people who don't have migraines and people who have just like standard migraines is sensitivity to motion. And it's literally like two standard deviations difference. So imagine you get strapped to.

[Amelia]

That's a big difference.

[Emily]

Imagine you get strapped to a table. It's like a cushioned, padded, very comfy table. But the reason it's so comfy is so that you kind of like can't feel your body in same way you stand on a really cushy pad for them to assess your balance. It's dark. They put a blindfold on you. They put headphones on you. You are isolated from all your other senses. You are lying down on a table. You are strapped to it, and it's a roll tilt table. So both tilts up and down and rolls side to side. Can you imagine that?

[Amelia]

I can.

[Emily]

Okay, so people with vestibular. So the task is we're going to. In the dark and in the silent, on this cushy table, we're going to roll you or tilt you, or sometimes roll and tilt you at the same time. And your job is to push a button to indicate when you notice you have moved. And threshold of awareness is what they're looking for. This table is moving very slowly, 1/10 of 1 degree per second. Like, that's a degree, as out of 360, right? One.

[Amelia]

So take three minutes to go all the way around.

[Emily]

Yeah, three minutes to go all the way around. Pretty slow.

[Amelia]

Pretty slow.

[C]

Pretty slow.

[Emily]

The threshold of awareness, like the least movement. People with vestibular migraines are aware of movement at the tiniest, tiniest, tiniest piece of movement. They're aware long before people with either no migraines or just standard migraines. So my awareness of movement. Do you remember when we went on, we Went.

[Amelia]

This was.

[Emily]

It was 2016. It was a different time in the world.

[Amelia]

It was a different time in the world.

[Emily]

And we went on a Harry Potter ride at Universal.

[Amelia]

We didn't know. We didn't know Universal to go to Harry Potter world. And there was money spent on Harry Potter merch because we didn't know. Had not yet come out, that Joanne's middle initial is actually kkk.

[Emily]

So I cannot. Obviously, I cannot go on any rides at all.

[Amelia]

No.

[Emily]

But I wanted to go through the.

[Amelia]

Line and you can stand in line. There's so much entertaining stuff in the.

[Emily]

Line which they have to do because you're going to spend a lot of time standing in line. And so they entertain you with stuff in the line. And I wanted to see the line, so I walked through the line. And there's always a bailout point for. Especially for rides that have some, like, challenge to them. And usually that bailout point comes before any ride element happens. Before you ride anything. And not for this ride. For this ride. You get into an elevator to descend down. And it's not a standard elevator. The floor moves to make it feel like it's rumbling.

[Amelia]

It's an exciting elevator.

[Emily]

It's an. It's an exciting, adventurous elevator. It's a fucking migraine trigger elevator for me.

[C]

Yeah, yeah, yeah, yeah.

[Emily]

And it. And I, like, I wrote an email to them being like, hi, you need to make the bailout point sooner than this. Because I was not the only person in our elevator who was like, this is not okay.

[Amelia]

There was another lady in there who was like, the fuck?

[C]

Yeah.

[Emily]

Another person who intended to bail out, like me. And, like, was required to go through this very. I don't know if this person's experience was simply anxiety. I say simply anxiety. Anxiety. There's nothing simple about anxiety. And also, this person should not have been required to experience some. Anything more challenging than a standard elevator before bailing out of this ride, just like me. But I. So I. So I wrote an email being like, you gotta make it sooner. This is not okay.

[Amelia]

Yeah, that's not.

[Emily]

But just elevators can make me motion sick. Just elevators. You were there at our publisher when the elevator in our New York City publisher's building made me motion sick, triggered a migraine. I had a migraine right before we were supposed to present Burnout to our publisher. That talk did not go great.

[Amelia]

It did not. We got some feedback.

[C]

Yeah, we did.

[Emily]

But the fact that I was, like, working with a migraine did not assist.

[C]

No.

[Emily]

I was not at my best.

[Amelia]

No. And Lindsay Our wonderful agency who is just. Just made of magic and a wonderful human being. Just a good, good person.

[Emily]

Spectacular person.

[Amelia]

You're sitting on the floor, lying on.

[Emily]

The ground in the elevator bank.

[Amelia]

Oh, yeah, no, that happened first.

[C]

Yeah.

[Amelia]

Lying on the floor between the end. And like, we were on the floor with the children's publishing and all these.

[Emily]

Like, very nice children's publishers are like, is everything okay? Do you need help? Like, nope, I just need to lie down for a second.

[C]

Yeah.

[Amelia]

And you're giving Lindsay instructions of, like, where in your backpack are located the drugs that you need.

[Emily]

The mugs that. The drugs that I need right now. In order to make it the rest of the way up to the floor, we had to be on.

[Amelia]

It was like on the 10th floor and we had made it to the 8th floor. And this is a New York elevator, like a very busy building that stops and goes.

[Emily]

And it was like rumbly. It was.

[Amelia]

It was bad.

[C]

Yeah.

[Emily]

Yeah, it was. And Lindsay, she's such a. She's like, I will walk up the stairs with you, however many floors it is, anytime you need.

[C]

Yeah.

[Amelia]

And when we actually got to the room we're presenting, you were sitting on the floor, leaning on a column or something, staring blankly into the middle distance.

[Emily]

Yeah, with my head just like wobbling. Not physically wobbling, but inside I'm so dizzy. Like, I, like, I can't focus on a spot in space.

[Amelia]

And I'm talking to Lindsay and she keeps looking back at you, like, should we do something? I'm like, no, the thing she needs is not to be acknowledged.

[Emily]

Yeah, don't perceive her.

[Amelia]

And that's the most helpful thing you could do.

[Emily]

Silence and stillness. I just like, yeah, no, it's bad. I know. There have been multiple elevators that have triggered my elevators. And so where this started this week is that I wrote. I've been sort of writing about autism, trying to find a way to communicate about it, because as we've said, I am not finding myself in the books, either fiction or non, about autistic people. So I, like, I want to talk about my hypersensitivity in particular to interoception, proprioception, vestibular information. And so I wrote about like motion sickness and stuff like that. And two of the seven other people in my writing group responded to what I wrote with the word heartbreaking. And I was like, cool, that's very fascinating to hear. My day to day lived experience described as heartbreaking by more than one person. That is feedback I'm going to take.

[C]

Yeah.

[Emily]

So I have been confronted A couple of times this week with the reality of how different my lived experience is and how much work I am doing to compensate for just, like, the difference in the structure of my fucking brain stem, for God's sake. Like, this is.

[Amelia]

Hey, I have a question. I'm curious about a brainstem thing, because the vestibular system, like, all of the, like, inner ear cerebellum situation has a lot to do with music making. So I'm curious about your striking accuracy.

[Emily]

It's terrible.

[C]

Yeah.

[Emily]

I mean, I haven't measured it, but it's terrible.

[C]

Yeah.

[Emily]

Like me and a hammer.

[Amelia]

I mean, does it. Does it trigger suffering? Are you just bad at it?

[Emily]

I'm just bad at it.

[C]

Yeah.

[Amelia]

I mean, because that maybe is a thing you can practice to, like, make some improvement, because that's a thing you can do if it doesn't trigger suffering. That could actually, like, start to make you.

[Emily]

I mean, that's not something that's gonna like. The thing I need to practice is. The difference is standing on one foot. I need to practice, like, weight transfer.

[Amelia]

Yeah, but that's really risky.

[Emily]

It's not. If I'm standing up in my bedroom on one foot and, like, challenging myself to move my working foot from one place to another. Working foot versus standing foot is what I'm talking about. I'm standing on one foot, and I move my working foot around.

[Amelia]

I'm describing for other people I know.

[Emily]

Like, that's. That's the challenge I need to develop because I need to train my bones and muscles to stay good at compensating for what my brain isn't doing. There's not really much I can do about, like, the head movement problem, because. Except for. I mean, like. So one of the things is that activation of the sympathetic nervous system, the sympathetic vagus, definitely increases sensitivity and therefore worsens symptoms. So, like, keeping my stress level, keeping my anxiety under control, that's genuinely important to reducing my symptoms. My experience of symptoms.

[Amelia]

Yeah, but. But I think when it. So I'm just. I just. It was curious because I know that just musically striking. So I was just curious about that. I think when it comes to supporting your driving, I think you need more help from your car. You need a car that has blind spot detection.

[Emily]

Yes, absolutely.

[Amelia]

And lane correction.

[C]

Yes.

[Amelia]

And oversteer prevention.

[Emily]

Yes.

[Amelia]

And will beep to remind you to look at the fucking road.

[C]

Yeah.

[Emily]

In 2020, I replaced my car and made sure I had a. One of the great things about behavioral compensation, because I cannot be a passenger in a car when I Travel. When an organization is bringing me someplace, they always want to give me a ride. They want to get me a car. They want to give me a ride from the airport to the hotel, from the hotel to the venue, from the venue to the restaurant afterward. And I'm like, no, I cannot be a passenger in a car. One time I went to. I like, you know, there was this sort of, like, impromptu dinner after the conference, and I got invited to it because I was one of the speakers. And I was like, no, I cannot be a passenger in a car. I cannot travel three miles in a car. And I was like, in Europe, I did not have. I had not rented a car. And the organizer, the guy was like, I'll hold your hand. And I was like, I don't need my handheld. I need my brain stem to function.

[Amelia]

It's not about my feelings.

[Emily]

I'm not worried. Afraid. It's not my cerebellum. It's brain stem. It's my brain stem. Not good brainstem. No workie.

[Amelia]

Cerebellum's part of the brain stem, isn't it? It's, like, sits right on top of the brain stem.

[Emily]

The part of my brain stem that is.

[C]

I got you. All right.

[Emily]

The problem is just, like, the very first place the input goes. Okay.

[C]

Yeah.

[Emily]

Anyway, so I rent cars. When I go places, instead of getting, like. I've taken one lift ever. It was with you. It was at Disney World. But mostly, I rent cars. And one of the great things about that is I have driven many, many different cars, and I have therefore gotten to experience many different kinds of things cars can do to assist a driver. Let me tell you what I love. I love it when the wing mirrors have a thing that tells you when there's a car in your blind spot, there's a little, like, light that comes on that's like, there's a car in your blind spot, and I don't have to look.

[Amelia]

Does your boat have that?

[Emily]

The Bold has that. Yes.

[C]

That's great. Yeah.

[Emily]

Yeah, it's great. I also. I do love lane correction. Even though, like, I don't like motion. That's not in my control. So. Yes. So I need my car to help me more. I need more, like, assistive technology.

[C]

Yeah.

[Emily]

With my driving, because I got a.

[Amelia]

Disability, and speaking in terms of the market for cars, those things are considered luxuries. You literally pay more for them.

[C]

Yeah.

[Amelia]

In. In a world where every car has air conditioning, every car has power steering and power windows and automatic transmission, luxury car things are now driver assistance.

[C]

Yeah.

[Amelia]

So unfortunately, being disabled is expensive being.

[Emily]

Yes, it's expensive. We bought a used Bolt in December. We have a all electric small suv. That is the car I drive now that my Golf got totaled in the accident, which was very sad. And my insurance premiums are going to go up because. That's fair.

[Amelia]

My car is also a car I got because of disability. I couldn't drive my car any longer.

[C]

Yeah.

[Amelia]

Even though it was great, I loved it. But with the fatigue and the orthostatic intolerance, getting in and out of a low hatchback started to become too difficult. I had to get a taller car. Even though all of my feelings are like, no SUVs are too big. I need to have a car where the seat is the same height as my butt so I don't have to lift myself or out of a car.

[C]

Yeah.

[Amelia]

And I also needed a car where I could push a button so that the back hatch would open.

[C]

Yep.

[Amelia]

Because I don't go into stores mostly. Mostly they bring the stuff out to me and I ordered it online in advance. And with my old hatchback I had to get out and walk around.

[Emily]

One of the. One of the positive changes that results from COVID is an increase in every.

[Amelia]

Place has curbside pickup. And any place who doesn't have curbside pickup is basically saying, we don't want disabled people to shop here.

[C]

Yep.

[Amelia]

Trader Joe's.

[C]

Yeah.

[Amelia]

Anyway, so I had to. So I have a car. And I specifically had to replace my car due to disability reasons. Now this car happened to come with stuff like the driver assistance, which is how I know these things exist. I didn't know that they exist before that, but now I've got them and they don't help me in terms of disability. They're just. For me. They are luxuries. But like, it's not a luxury for me to have a button I can push to open the hatch in the back. That's for me, a disability support.

[Emily]

You know what every car should have? Automatic headlights.

[Amelia]

Yeah, my car has automatic headlights and I frickin love it. You know what every car should have? Automatic high beams.

[C]

Yeah.

[Emily]

There are some things that should be universally automatic in cars.

[Amelia]

High beams, they should automatically turn off when there's oncoming traffic. That's a. Why is that not.

[Emily]

Because human decision making is not as good as a machine's decision making. In some cases, my car does a.

[Amelia]

Much better job of turning off the headlights when there's, you know, oncoming traffic or any kind of exterior light. It's much faster than I would be. I'm usually reaching to turn off the high beams, and my car has already done it.

[Emily]

That's great.

[Amelia]

It's less than a second, whereas it might take me a second and a half. It's. It's great. It should be in every car.

[Emily]

Yeah. The physical structure of information processing for humans makes it almost impossible to do it faster than that.

[C]

Yeah, you have.

[Amelia]

I recall driving home from the airport once been like, I don't like having to, like, turn my high beams on and off and then on and then on.

[Emily]

And so I leave them off.

[Amelia]

And so you leave them off and.

[Emily]

Like, then drive slower, which is reasonable.

[Amelia]

Because you're overdriving your headlights. Yeah, like that. So why shouldn't it just be automatic? I feel like for the sake of other drivers. Cause you have to remember to turn them off. And for the sake of other drivers, it should be automatic.

[C]

Yeah.

[Amelia]

You shouldn't even have the choice to leave your high beams on.

[Emily]

So I feel like the moral of the story here, one, that thing was called the Dizziness Handicap Inventory. If you want. If you want to, you can find it anywhere online. If you want to go. If you want to go to the beginning of the episode and listen to it. You score zero for no, you score two for sometimes, and you score four for yes. And you add up your score and you see where you. Where you fit.

[Amelia]

You should. Maybe we should maybe insert a little.

[Emily]

A link to it. Sure.

[Amelia]

No, we should insert audio of you saying, for those of you playing along at home, here's how you score this.

[Emily]

For those of you playing along at home, the way you score this is for every. Yes, you give yourself four points for every. No, you give yourself zero points for every Sometimes you give yourself two points. When you are adding up your scores. If you score between 16 to 34 points, that is a mild handicap. If you score between 36 and 52 points, that is a moderate handicap. This is the language of the instrument. Apologies if it doesn't feel good for you. I get that it doesn't feel good for me. Trust me. Let me just say mild disability, moderate disability, and 54 or more points counts as a severe disabling dizziness. And I have severe disabling dizziness and did not realize until I did this that one of the ways that it impacts me significantly is in my driving. It impacts me. It is why I find grocery stores just so intolerable. It is why reading physical books has become quite exhausting for me. And I can only do it when I'm in A really good state. And I had not realized until now. And anyone who's read Come Together will remember the story of me realizing that. Yeah, it impacts my sex life too, because, you know, motion.

[C]

Right.

[Emily]

And whether. Whether or not you're driving.

[C]

Right.

[Amelia]

In all circumstances.

[Emily]

In all circumstances. Also sidewalks, quick head movements. Boy, that was confronting. And because I was going through this experience of being like, why has nobody ever talked to me about this stuff? I thought, I have a podcast about wellness.

[Amelia]

Yeah, you could talk. You could let people know it.

[Emily]

I can't be the only one.

[C]

Yeah.

[Emily]

I literally cannot be the only person who's experiencing these things. I believe it is tied to my autistic brain. Autistic people often have like motor disorders like dyspraxia.

[C]

Yeah.

[Emily]

And they often have really bad balance. I got on a. A sort of YouTube began offering me autistic everyday carry videos. And so many of them included nausea medication, which that's. That's what I take for when I get a migraine. It's anti nausea medication. It's motion sickness medication. Because one of the worst things I can imagine is being out in the world having a migraine trigger to being motion sick and not being able to take the only thing that works for me. Being out in the world without it physically on my body increases my anxiety, which increases the likelihood of me getting a migraine. So it was really valuable for me to hear other people talking about. Yeah, I make sure I just always have this on me because, like, living in the world without this on me makes life scarier.

[C]

Yeah.

[Emily]

And. And I was like. And people are not talking about it as like, I have a balance disorder. That's why I'm so prone to motion sickness. But like, I have a balance disorder and that's why I'm so prone to motion sickness. And I literally cannot be the only person. Even though I've never heard anyone talk about this, and it is impossible for people to remember that I have this. I will get in the car with friends, agreeing to be a passenger for any number of reasons. It might be just. I'm just gonna try this. I medicate myself as lightly as I think I can tolerate, and I just shovel intense ginger candies into my mouth the whole time. And I ask them, could you please remember to drive as gently as you can? The one time we took a lift at Disney World, I sat in the front seat, I asked the driver to drive as gently as he could, and he did.

[Amelia]

It was a minivan, right?

[Emily]

Yeah, it was a minivan.

[C]

Yeah.

[Amelia]

They're awesome.

[Emily]

Mini, as in Minnie Mouse. And he absolute. Like, it was. It was great.

[C]

Yeah.

[Amelia]

This is a Disney cast member who drives a car with. It's red with white polka dots. It's a Disney branded Lyft lift.

[C]

Yeah.

[Amelia]

L. Yft. Lyft.

[C]

Yeah.

[Emily]

But whenever I ask my friends, hey, can you please remember to drive as gently as possible? Almost immediately, they forget. They get so wrapped up in, like, you know, keeping us alive on a highway.

[C]

Like, I get that.

[Emily]

That's. I get that. But they, like, cannot bear in mind to drive as gently as they can at the same time as keeping us alive. And that's how I drive as gently as I can while trying to keep me alive. The gently being like how I move my own head, which doesn't mean gentle by the experience of the other person. I get that. So 1. The moral of the story. 1. Dizziness is a thing. Those are. I read a list of things that are so commonly reported by people with chronic dizziness that they made it to the inventory. 2. I think your response in particular, because you have experienced me as a driver.

[C]

Yeah.

[Emily]

You and Rich have had conversations. Not behind my back, but when I wasn't there, you were talking about me and my driving.

[C]

Yeah.

[Emily]

And so you have, like, a lived experience of like, yeah, you're dizziness. Fucking. Oh, it's your dizziness that makes you drive that way.

[Amelia]

Oh, that's why you don't look back at the road when you're doing something like, because I. If I'm gonna, like, look at the map or if I'm gonna, like, change the radio station, I glance down and then glance back at the road and then glance back down and then glance back at the road. So, like, my. My attention is constantly switching.

[Emily]

Just hearing you talk about that makes me uncomfortable. It's not just your attention is constantly sweeping your gaze.

[Amelia]

My eyes. My gaze is switching.

[Emily]

Even your head position is constantly changing. And I.

[Amelia]

And even if I didn't move my head, I'd be flicking my eyes back and forth. And that's like greeting. And if so.

[C]

Yeah. Yeah.

[Amelia]

So I completely. So I totally get that now. That totally makes sense.

[Emily]

Therefore, your first response was like, yeah, you need more assistance. If driving is that hard for you, you need more assistance from your car. And you're better at this than I am. You're better. I mean, partly because you've been disabled longer than I have and partly because you have this stronger sense of, like, no, this should be like, we should be able to access more stuff to help us and Partly because maybe you've internalized this. Like, the message of burnout as a book is like, you. You don't need to work harder. You need more help.

[C]

Yeah.

[Emily]

You need more help. And your first response to me describing my driving experience is, your car should help you more. You need more help from your car. Not the.

[C]

Yeah.

[Amelia]

Because you had a very basic Volkswagen Golf and I had recently acquired a Volvo and all Volvos have all of this assistive technology. And I had been like, this is nice. You know what you need?

[Emily]

My Golf was $25,000.

[C]

Yeah.

[Emily]

And your Volvo, 100% was.

[Amelia]

I don't even know and I don't.

[Emily]

Want to think about it.

[C]

Yeah.

[Amelia]

It was more than double that.

[C]

Yeah. Yeah.

[Emily]

And you're leasing it. Like it's, you know, the least expensive.

[Amelia]

Volvo is about to become available in America. That's what I'm waiting for. But in the meantime, I had to get a more healthy car in order to keep living my life with any kind of comfort or convenience. According to the way that, you know, Cape Cod is structured, you can't just walk places, and I couldn't just walk places, and I definitely couldn't just wheelchair. Anyway. I needed a car and I needed it to be less of a barrier.

[Emily]

So part of why you were. It was so natural for you to be like, you need more help is because you had already made the choice.

[Amelia]

I'd gotten the help and seen how.

[Emily]

Good it is, how much better it is to have a car that helps you.

[Amelia]

It's so good to have a car that helps me. And, you know, my lease payment is a lot of money every month, and I'm like, worth it. This money is paying for me not to dread going to get groceries, which.

[Emily]

Is the thing that has to happen.

[Amelia]

Which does not mean grocery shopping, by the way. It means pulling into the parking spot and opening the hatch and letting them bring my groceries to me.

[C]

Yeah.

[Emily]

Not only do you push a button to open your hatch, you push a button and your hatch closes itself.

[Amelia]

Yes.

[Emily]

That's. That is fancy. That is some fancy shit.

[Amelia]

It is. It was on my list of things that I must have in this car.

[C]

Yeah.

[Amelia]

And in order to get that, I. I mean, like, literally, it seems like that button is the difference between a car that's classified as an SUV or classified as a hatchback.

[C]

Yeah.

[Emily]

Everything in my life that feels to me like a luxury.

[Amelia]

By the way, for the record, it is fully electric, so I'm not driving a big gas guzzling thing. I did get an electric one. I tried to get a secondhand one. But they didn't have one and it didn't.

[Emily]

We are all doing our best. You don't need to justify your choices.

[Amelia]

I'm doing the most environmentally responsible thing I can in the context of also getting the help I need. So, yeah, there it is.

[Emily]

So I was going to say that everything I experience in my life is being a luxury. What the dizziness inventory did for me was be like, this is help for stuff that's hard for you because you're dizzy all the time.

[C]

Yeah.

[Amelia]

It's not luxuries, it's accessibility support.

[Emily]

Stuff like have having it cleaner. Somebody cleans our house. Yeah, it's so great. It's so great. It's so great. And like, why, why don't I. Why can't I clean my own house? Why don't I clean my own house? Oh, it's because cleaning requires bending over and standing back up and fast movements. And that makes me, like, actively dizzy and can trigger a migraine and ruin my whole day. So what else do I have that I experience as a luxury? I mean, being self employed, I experience as a luxury. But that's like a whole other kind of thing.

[Amelia]

I mean, because when you add in the autism accommodations, things that are. That are helpful because they reduce the amount of social interaction you have to do, like, that's important.

[Emily]

Yeah, it's a lot.

[Amelia]

Okay.

[Emily]

So dizziness, I literally can't be the only one. We don't always say this. And the reason we don't always say it, sometimes it's because we don't think of it, and sometimes it's because, like, it's not what the episode is about for us. But I'm gonna say if you have chronic dizziness, especially if you have vestibular migraines or other experiences of just like chronic dizziness, because brain no worky or whatever else. I would like to, like, hear what that is like for other people. Because the reason this is important to me is because I'd never heard anyone else talk about it. And I am hoping that there is someone who hears this and is like, yes, or even, oh, that's what that is. It's fucking dizziness. Because for a long time I had vestibular migraines. I mean, I got diagnosed in 2016, I think. And I identify my first vestibular migraine as happening in 2007.

[C]

Right.

[Emily]

So that's nine years of having these episodes of dizziness and nausea and exhaustion and all the other things that come with the migraines and Having no idea what it was.

[C]

Yeah.

[Emily]

Knowing that they weren't panic attacks, because I know what panic attacks feels like. But they were. They were something. And they made it impossible for me to, like, leave my house or be a person. Sometimes they happened at work, and I would have to go home. The first one happened while I was giving a lecture, and I had to lie down, like, immediately in front of a group of students during an orgasm lecture.

[Amelia]

And having had to lie down in front of students myself because of physical issues, I threw my back out once at work, and I was like, I need to lay down right here, right now.

[Emily]

That's what's gonna happen.

[Amelia]

I was not in front of students when that happened, but I was in the hallway at the copy machine, actually, and I had to lay down in front of the coffee machine, and a student walked by in the hallway. And then the principal came by and was like, you're freaking students out. And I was like, I just need to lay down. Because I threw my back out because I sneezed while I was leaning over to photocopy some stuff. And.

[Emily]

It gave my students too much.

[Amelia]

Feelings, so I had to accommodate their feelings over my physical existence. And I was like, this doesn't feel right. But anyway, yeah, apparently when you have to take that extreme a measure, apparently that's an extreme measure.

[Emily]

Apparently. That is. I mean, it seemed very, very much like this is outside the realm of my usual experience. But, yeah, students worry about you when you experience having a body malfunction.

[C]

Yeah.

[Amelia]

Like, laying on the floor is a thing that freaks other people out, as it happened in the publisher's building. And also, yeah, people get really worried.

[Emily]

When you have to lie down.

[Amelia]

When I went to get my first or second Covid vaccination, it was back when they were set up in, like, empty department store at a mall, I think was where I got mine.

[Emily]

Me too.

[Amelia]

And I was sitting in a chair, socially distanced from all the other chairs, and I already had long Covid. It must have been the sec. Well, it doesn't matter. Anyway, I was sitting in a chair, and I looked around at all the people around me. Like, I have a blood pressure. I have low blood pressure. Sometimes I need to lay down. I'm fine. I'm just. I warned them because I knew that people freak out when you lay on the floor. So I, like, let people know. So as soon as I lay on the floor, EMTs came rushing over.

[C]

Yeah.

[Amelia]

Are you okay? What do you need? I'm like, no, no, I'm just correcting my you know, I have, like, a pot situation, and I'm correcting my blood pressure, so I need. I just need to lay on the floor. It's not because I'm in extremity, but I guess it is extremity if you lay on the floor anyway.

[C]

Yeah.

[Emily]

Lying on the floor in public is an extreme. Okay, maybe that's the third moral of the story.

[Amelia]

Turns out if you have to lay down in public, you're.

[Emily]

That's dis. That's disability.

[Amelia]

That's a sign of disability.

[Emily]

You are sick. It's an emergency.

[Amelia]

It feels to me like that's. That's about other people's feelings, not about the actual urgency of the situation.

[C]

Yeah.

[Amelia]

But disability is a combination of how you feel and how the world.

[Emily]

Feels about seeing you. There's a reason there were ugly laws.

[C]

Yeah.

[Emily]

Because seeing people who are disfigured makes other people unpleasant. Well, I warned all the people around.

[Amelia]

Me they were fine. And they even chimed in, oh, yeah, she warned us that this is fine.

[Emily]

That's nice. But the EMTs, it's just their job.

[Amelia]

It's just their job. No.

[Emily]

Yeah. And I ended up. And hopefully they had, like, warm, positive, gentle energies. They weren't as.

[Amelia]

They were so great. They were so great. Yeah, they were so great.

[Emily]

And I do believe that EMTs appreciate having interactions, first of all, where the other person can speak to them about what's happening and where they are, like, articulate. They understand what's happening with their body. They can describe it and explain what they do and do not need. Like, I think that's, like, a good day for an emt.

[C]

Yeah, yeah.

[Amelia]

It was not an emergency.

[C]

Yeah, yeah, yeah.

[Amelia]

Anyway, so this has been. There's been some. Several morals about things. I think the one about requiring help.

[Emily]

Mostly you need more help. Mostly I need more help.

[Amelia]

I was unaware, enduring more suffering.

[Emily]

I'm not sure that I could describe myself as having been in denial about how impacted I am by my dizziness or how much help I needed, but it's truly about. How could I know that other people are not experiencing the same thing unless I genuinely pause and explore my experience and compare it to earlier in my life, before it had progressed to the extent that it is now. Like, it. Because it creeps up on you.

[Amelia]

What's the value of taking inventory?

[Emily]

Which is what this is.

[Amelia]

What prompted you to do this?

[Emily]

I was writing about autism, and I talked about my dizziness and motion sickness, like I said at my writing group, and they described it as heartbreaking, but.

[Amelia]

Like, what made you think I should take the. I should see if there is such a thing as a dizziness inventory.

[Emily]

Oh, yeah, I didn't go see if there is such a thing as a dizziness handicap inventory. I was looking at the research on vestibular migraine and neurological functioning, and in the like protocol of how we did the research. Here's how. We assessed people's experience of the vestibular migraine. We gave them the dizziness handicap Inventory. And I was like, that's a thing. Dizziness Handicap Inventory. I want to take that. And so I found it online and I did it. It's a PDF that you can find very easily. That's how. Because I was reading the peer reviewed.

[Amelia]

Science, and we started this by saying, amelia, you should take this and we'll compare scores. And you probably thought I'd score way lower.

[Emily]

I did. Because you don't have a vestibular disorder.

[Amelia]

Yeah, no, I have. I have orthostatic intolerance from.

[Emily]

Yeah, you have orthostatic intolerance as a result of long Covid. So, yeah, you did have more dizziness than I thought you had. And it explains why you. Like, your emotional score is so much higher than my score. Like, I. Am I frustrated by my dizziness, like, only sometimes.

[C]

Mm. Yeah.

[Emily]

And you're like, yes.

[C]

Yeah.

[Amelia]

Cause I used to be fine.

[Emily]

Yeah, I kinda used to be fine too.

[Amelia]

But it's been a long time since you were fine.

[Emily]

I feel maybe sadder than you do.

[Amelia]

You are more disabled by your dizziness than I am.

[C]

Yeah.

[Amelia]

As indicated by the score you got.

[Emily]

By the score I got. Which is higher, you admit.

[Amelia]

Yeah, objectively, you're more disabled, but also you can't drive, but you also can't be a passenger.

[C]

Right, Right.

[Amelia]

Like that. You can't walk, but you also can't use a wheelchair.

[Emily]

Like, yeah, you should stop now.

[Amelia]

I'm so sorry. Oh, I made the sob face. Sorry.

[Emily]

Like, I said, this explained why I have felt trapped in my body.

[C]

Yeah.

[Amelia]

Because I can't be a passenger.

[Emily]

But driving is hard. And I can't walk, but I can't use a wheelchair, thus I use a cane. So, yeah, I have felt trapped. And reducing my dizziness feels like it would be helpful, but also increasing my capacity to walk would be helpful.

[Amelia]

And I've been working on those things.

[Emily]

For solidly three years now. The entire time that I've had long Covid.

[C]

Mm.

[Emily]

And I'm better than I was. But so, yeah, I've been feeling trapped. Now I understand why. And I'm Already doing everything there is to do to get better. And it's frustrating, and it's such hard.

[Amelia]

Work, and it requires so much discipline all day, every day. Yeah, it's. Yeah, it's exhausting.

[Emily]

And also, my sleep has been profoundly fucked up for a long time, so I'm exhausted. And I am exhausted. So that's the Emily update. Check in. I guess we're gonna call this episode Dizziness and Driving and help. Dizziness, but also driving, dizziness and getting help.

[Amelia]

I think it's about disability more than it is about driving. It's about. Yeah, it's about dizziness.

[Emily]

Is it called Emily is Disabled? Actually.

[Amelia]

Emily's more. Amelia uses a wheelchair, but Emily's more disabled. Emily's disabled because she can't use a wheelchair.

[Emily]

She can't even.

[Amelia]

Have, like, the thing that everyone associates with disability.

[C]

Yeah.

[Amelia]

And all the things that come along with the fact that you had a.

[Emily]

Thing in your life. People talking about the cost of invisibility.

[Amelia]

Oh, yeah. It's expensive.

[C]

Yeah.

[Amelia]

And because when I'm in a wheelchair, everybody's so nice to me. At Disney World, for example, mostly people don't even see me.

[Emily]

But cast members.

[Amelia]

The cast members. But, like, at least people can see, like, this is a person in a wheelchair, and you don't even have the choice to make yourself visibly to make your disability visible.

[Emily]

Well, I carry a cane.

[C]

Yeah.

[Emily]

One of the benefits of the cane is it is a visual signal to people. This is why I'm slow.

[Amelia]

Yeah, same. That's one of the reasons I use it. It turns out Kane helps me more than I anticipated. Canes are helpful.

[C]

Yeah.

[Amelia]

I didn't. I didn't know how helpful a cane would be, but it is good. Yeah. So I think the title is Emily Doesn't Use a Wheelchair, but Super D. Disabled. No, that's not it.

[Emily]

How about lying on the floor in public?

[Amelia]

Lying on the floor in public. I mean, that's. It's even a little cringy just to. As a sentence.

[C]

Right?

[Amelia]

Is it?

[Emily]

I think it will be for people.

[Amelia]

I think, not for us.

[Emily]

I think a lot of people, if they think about having to lie on the floor in public, they would feel tremendously embarrassed. I did not. In the moment when I had to feel embarrassed about it, I was just like, this is the thing my body needs. And, like, there's no option, really.

[Amelia]

No. I've had to do it multiple times, and I've never felt embarrassed about it. I think that's an autism thing for sure. Like, I don't get the social cue that says that this is extreme or.

[C]

Yeah.

[Emily]

And inappropriate. Or that if it gets to the point where you have to do this, it's a crisis.

[C]

Right.

[Amelia]

Because it doesn't feel like a crisis in my body. It just feels like, oh, I know how to fix this.

[C]

Yep.

[Amelia]

I just lay on the floor. Solution. Boom. I feel better. I just have to do this for a few minutes until my. You know, the blood.

[C]

Anyway, I think.

[Amelia]

I think lying on the floor in public is a. Is a. Is a title that will capture the feelings.

[Emily]

All right, Cue the ukulele.

[Amelia]

It's not about my feelings. It's about my cerebellum.