Hello, everyone, and welcome to the Life of Your Blindness podcast. I'm your host, Tim Schwartz. And as always, I am joined by my wonderful guest host, starting with Charles Heizer. Charles, hello. Hello. And Ryan Palm. Ryan, how's it going? Pretty good. How are you? I've had better days as you guys both know, as all of us, I think, have had better days. My computer is is being ridiculous and stupid. My my screen readers, both of them, NVDA and JAWS, are really, really getting on my nerves.
I just I'm I'm I'm frustrated, and I'm done, and I've just I've had it. I know you are too, Ryan, because your jaws is just being ridiculous because it it it I don't even know what's going on with yours. Yeah. I, definitely feel your pain on that one. I'm good. Everything's working on my end. Yeah. How dare you? Ugh. Yeah. It's just been frustrating trying to get the things to work and things to talk to each other and browsers to work.
It's like, oh, one one week the browser works, one week the browser doesn't work, and then you gotta find another browser, and then it doesn't work. And it's just frustrating. But it's our life sometimes. Anyway, regardless of all of that, if you want to get a hold of us and, send us any comments, questions, suggestions, anything like that, you can send your emails to tim@lifeafterblindness.com
or come and join us online. We've got a Facebook page as well as a Facebook group that you can interact with and chat with. A lot of great people out there having some good conversations. And you can follow us on Twitter at labcast. They're on Twitter, l a b c a s t. And if you'd like, you could also support the show by visiting Patreon. Go to patreon.com/labcast. And, you'll find a few tiers there that
I think are extraordinarily reasonably priced. Even if you just wanna donate a little bit or or just, you know, just give us a little bit of love. We we would appreciate anything that you can do, but there are some great bonuses there for you as well if you sign up for, any of those tiers on Patreon. So, guys, all that out of the way, let's dive into this topic because this is something that kinda came up.
I don't know. I was talking to my wife one night about this and because she she deals with, you know, a lot of pain issues. We've talked about this here on the show that, you know, she has back pain and and knee issues and nerve damage and all that kind of thing. And for her to do things in a day or even in a couple hours really just takes a lot out of her, and we have to plan in rest days.
So, for example, if we go on a vacation and we do a lot in one day, most likely the next day is gonna be a rest day because she just has to kinda regenerate, you know, from from all the activity and things, especially with all the pain and everything that she has. And her and I were talking about this, and I think, Charles, it was you. I I said something, you know, kind of off the cuff about this whole thing. And you're like, oh, spoon theory. Yeah. I know about that. I'm like,
oh, that's right. I I had totally forgotten that this actually was a a theory that someone had written up. And, basically, it boils down to kind of using up your energy or using up, you know, a lot of, of your I'm trying to to give it a broad statement, but, basically, using your energy, using your your brainpower, your your your everything, and how much you might have of it to use. So for a for a better breakdown of this, I'm gonna go to you, Charles, because, you went and dug out the the blog
post for me and, and reviewed it. And so maybe you can explain it a little better, at least as it was in the original Spoon Theory blog post. Yeah. So Spoon Theory was originally conceived by a woman named Christine Miserandino who has lupus. The blog post that I am most familiar with and that I see shared around a lot whenever this comes up, is a sort of abbreviated version. There is a document that explains it in more detail, but she came up with this in 02/2003.
So it's been around for a while, and it's been referenced and broadened since then to encompass, all sorts of situations, not just those who may be suffering from chronic pain or chronic fatigue, but, also, it's been broadened into the wider disability community because it can be applied in many different aspects. So in case you're unfamiliar with spoon theory, it goes a little something like this. One day, Christine was with a friend of hers eating at a diner in
well, where wherever they were. They were in college at the time, and her able-bodied friend asks Christine, what is it like to be you? And they've been friends for a while. Apparently, this lady had taken her to doctor appointments, had seen her when she's sick. She'd been around, and Christine was confused about this question. She essentially said, well, you know what it's like. You've seen me do this. And she said, no. No. No. What is it like to live
as you? What is it like to have your experiences every day? How is it different? What effect does lupus actually have on your ability to live a normal life? And while she was looking for inspiration to try and explain it, the idea of having a physical representation of the resources that everybody uses came to her.
And so she grabs a bunch of spoons off of every table she can reach and hands her there's a there's a sentence in the blog that I really like, and it essentially says that the friend is given a bouquet of spoons and is very confused by this. And and so she hands her, a fistful of spoons and says, this is how much energy you have in the day. This is it. You don't get anymore. What are you gonna do today? And the friend says, oh, I'm gonna get ready for the day, and then I'm gonna
and she goes, no. No. No. No. No. No. No. You need to get out of bed. You need to be able to go take a shower. You need to be able to make yourself something to eat. All of this costs spoons. And the post breaks down how the friend is surprised that Christine can go through a morning routine but lose half of her energy that she has for the entire day just by getting ready for that day.
So spoon theory blossomed into this idea that people with chronic disabilities only get so much resources because their disability might take up the rest of the resources that an able-bodied person would otherwise have. Christine's whole point was that lupus restricts her in ways that people just can't conceive of unless they have some kind of chronic illness. And so the spoon theory allows her to demonstrate it in a in a very physical, tactile way to get this point across.
And as we have broadened spoon theory to the larger disability community, we've talked about things like your mental capacity to advocate for yourself might hold you back from going into public situations that will cost you more spoons than the average person who doesn't have to advocate for themselves. Or you may suffer from you may suffer from a sensory overload, for example, and dealing with the the fallback of that would cost spoons that you may not be prepared to spend.
So today, we wanted to talk about what spoon theory looks like for a blind person and how we can apply that to our everyday lives. Very well said, Charles, because it is something that I believe is overlooked or not even thought of necessarily when it comes to blindness. I mean, I have discussed this in part in other places where we've kind of touched on the idea of this, but not directly related to spoon theory and breaking it down
this way. And so that's why I wanted to do this episode because I really think this is something that's important because I know like, my wife, for example, as I mentioned before, she's, you know, got a handicap, you know, parking, you know, thing in her car. And she'll park and then she'll go to get out of the car. And she's had people yelling at her, like, you're not disabled. What's what? You can't park there. And it's it's like, but you aren't seeing my
disability. You're not seeing what it took to get me up and out and here to begin with. And after I'm finished in the grocery store or in the wherever she's, you know, at, They're not seeing how her body's gonna react when she's finished. You know, that walk from the car to the store and then back again after walking around a store, I mean, that's it. You know? And and so it's it's one of those nonvisual type disabilities.
For us, unless we've got our guide dog with us or got a a white cane out, you know, with us, people don't necessarily know and and notice, you know, that you know, like, if you're just sitting at a table in a restaurant and you've got your cane tucked away and they didn't see you come in, they don't maybe know that you're
blind. And so they say things or or do things or react in a way that they don't, you know, that they because they just don't understand or they don't know, and you're going through things that you're trying to deal with that others around you may not realize. So I think it's really important to talk about this and be open about this because we all go through this, whether we were born blind like Ryan or, you know, lost vision over time like you and me, Charles.
This does affect all of us. And so to that point, Charles, you mentioned about sensory overload. And I talked to Ryan about this because I know from my perception, my my experience, you know, having low vision at one point and losing vision, the just how hard it would be sometimes to have to read something for a long period of time or sit in front of a computer visually, and the strain that would take my eyes and and my mental capacity and all
that. But, Ryan, you've been blind since birth, so you've not had to to deal with the visual aspect of, oh, my eyes are tired and hurting, and now I've got a headache. But you definitely have a lot of other things as it relates to this greater idea of spoon theory where you get overloaded or you get worn out or you get tired and and are still affected. Right, Ryan? Oh, yeah. Having to listen to multiple things.
I'm one of these that, you know, using JAWS or voice over, if I have to do that, I really can't sit and listen to music or, you know, really be in kind of a crowded place and do much with it because I have to concentrate on what it is I'm doing. Even having a general conversation, I'm finding as I get older that if I'm in a very, kinda cavernous, you know, restaurant let's face it.
A lot of restaurants and stuff get really loud going, you know, be between them singing, you know, happy birthday to different people and just everybody chatting and and doing their thing. I find myself, zoning out. Like, I really was actually, thinking about this this past weekend when my family went out to dinner. I tried to be, you know, a part of the conversation and and stuff, and I
was for the most part. But when it got really loud, I found myself just kind of shutting down and going I don't even know what my wife who's sitting right next to me is saying. I could hear clearer the woman that was three tables over talking about her I don't know. She was talking about, you know, an outfit not fitting right because she's pregnant and not knowing whether she should order dessert or not. I'm going,
why do I care about that? But yet I can hear that plain as day, and I'm paying attention. So it just kind of really varies on the environment. That sensory overload can be really, really overwhelming. I I was talking to you the other day about, you know, I had gone to a benefit and, you know, just raised money for something, And there was
hundreds of people there. And by the time we got there, the only table that was really left was right by the stage where a band was playing, and there was a big speaker right there. And so we were down, you know, by the band in front of the speaker, but then everybody talking, everybody being loud, all this stuff going on. And I just had to put my head on the table almost, like, face down, then wrap my arms, like, my forearms, my elbows around the back of my head and covering my ears
because I just couldn't do it. I mean, I was so overwhelmed and, I mean, it almost brought me to tears quite honestly because I just I was so overwhelmed and we finally were able to get me moved somewhere else and, know, kinda get away from the stage and get to where there was a little bit more of a quiet corner. But
that sensory overload is no joke. And and I know that can happen to anybody, but especially to us and and, you know, it's that whole myth of, you know, we get superpowers with our other senses when our our our vision goes. But as you guys know and and I'm sure our listeners know, you know, it's more of just heightened sense of awareness and training your other senses
to do better. And, well, when you've focused so many years or so long on really tuning into other things and listening and focusing and all that, and you take the visuals out of it, and that all that comes in at once, you know, I I I it's just it is really hard. So my question then for you, Ryan, because you are a drummer, you performed with a lot of bands in your life, I know you haven't done,
much performing, you know, recently. But when you did or when you have, how has that been being up on stage and trying to hear the other, you know, performers, the other musicians on stage, hearing a crowd, maybe playing in a bar where there's a lot of, you know, other noise going on? I mean, is that something I'm sure that probably gets overwhelming for you too. It can. I had to invest in and not just for hearing protection, but it was to block out
some of these frequencies. I had to invest in really good earplugs that would allow me to hear what was going on stage, but it would pretty much block out the rest. I couldn't do it without them. I tried a few times and stuff like that, and I I could not between how loud, you know, cymbals were and different things and and other frequencies, I could not hone in enough to pay attention for the show. That had been really hard.
I know something else that you mentioned to me the other day, Ryan, I hadn't thought about because I'm not really a great braille reader. And I'm sure, Charles, you can talk on this as well. I I've tried braille. I've tried to learn it, but I learned it too late. I should have taken it in high school, but that's either here or there, when it was offered to me. But either way, I I don't really read braille, but I know you
guys do. And, Ryan, you mentioned about, you know, braille pins or braille dots or especially, you know, like your electronic type braille devices where they can be too sharp or too pointed. And even not being too sharp or pointed or or what have you, that can still be a sensory overload similar to someone with low vision who only has so many spoons as it were to read for so much you know, so many minutes at a time or or whatever it might be.
You were mentioning how braille could be a very similar thing where your fingertips are just like, nope. That's it. I'm done. I can't do this anymore. Right? Yeah. It's like anything. I mean, your fingers eventually get tired and you, you know, words start to kinda run together and things and but it all kinda lumps together. I mean, you can have the same problem if you're trying to read in a busy room.
You can probably, you know, tell somebody these are the words I read, but can you really tell them what you read? You know, what was what was it about? What did you learn from it? Or are you just reading the words and not really gathering the information because of all the noise and stuff like that? I know when I was in school for a little while, I attempted to go back to college.
When I had to read and had to do other things, I couldn't be in the living room with the rest of my family if they were watching TV and doing things, or my wife was on her computer and stuff like that. I couldn't do it because it was too much stuff. She's one that she can have, you know, a TV going, her computer, my phone, an echo. I mean, she can have all this stuff going and be perfectly fine. And I'm looking at her going, how are you doing this?
Yeah. I can I can understand that? I have found that I have, like, an upper audio limit. I can listen to three, maybe four things at the same time, but they can't be too similar. Otherwise, one of them gets tuned out, and I notice I get very frustrated very quickly because I'm trying to pay attention to everything, and I just I can't do it. So, usually, I can have a screen reader going, some music or a show, and a conversation.
I can't listen to all three precisely at the same time, but I can move between them quickly enough that it kind of appears like I'm listening to all three at the same time. But a good example of when I didn't have enough spoons to process everything was last night at about 10:00 at night, my girlfriend came over, and she did not know that I was laying on my bed with earphones in using my phone. So I already had two things going. I had voice over, and I had music. And I was doing something,
like, actively doing something on my phone. And she walks into my room and just starts talking to me because that's a normal interaction. Well, I had used my spoons for the day. My physical, emotional, and mental spoons were all down to, like, one. Alright? And she walks in, and the last physical spoon was immediately spent on there's another audio process I need to listen to, and I just can't. And I just ran out of spoons right then. And luckily, I sort of caught it as it was happening.
So instead of getting frustrated, I very quickly turned off the music, because I can do two of them without needing as many spoons. So I I caught it. I dealt with it, and it was fine. But there have been situations where I wasn't prepared or I didn't have enough spoons, and I've had to remove myself from situations because I just can't handle it. Yeah. You're you're myself from situations because I just can't handle it.
Yeah. You're you're a step ahead of me because I I find myself you know, if I'm watching YouTube or even listening to music or something and somebody says, hey, Ryan, and they wanna talk to me about something. I have to pause whatever it is and then totally focus on them. Be like, alright. Cool. What do you, you know, what do you need, or what do you wanna tell me or whatever. Especially if it's your wife because, you know, if you you don't focus, you're gonna be in trouble.
Mhmm. I'd rather not go down that path. Mhmm. No. But I think that's a that's a good point. And the, you know, audible sensory overload can be so terrifying, quite honestly. I mean, it can be like what you were explaining, Charles, of just like, okay. I'm frustrated. I've gotta kill at least one or more of these so that I can pay attention and focus to what's going on around me. And that can just be frustrating. And that
and that definitely happens. But it can be like, I was talking about when I was at that that fundraiser where it was so overwhelming. And so, you know, the the audible you know, the the the overwhelmingness of it made it an emotional issue. It wasn't just, okay. I've got a headache and my ears are ringing and I can't take this. Right. It's closing it around me and I can't do this right now. But then that sparks, of course, an emotional response,
and that happens a lot. Like you said, Charles, when you were setting this up with us, you know, with with The Spoon Theory and what it's become, there is an emotional side of this with The Spoon Theory because there is only so much you can take as you were talking about advocacy. You know, there's you get frustrated. You know, you're talking or trying to fight for something or advocate for something. And anybody, no matter what your situation is, even if you're not disabled, you're gonna get
frustrated. There's an emotional allotment that you have before you're just done. And sometimes when you're adding that in to other things you've already got going on, you know, you're trying to to read something with braille or read something even with your eyes with the limited vision you've got. There's conversations going on around you and there's, you know, maybe music playing and, you know, and then at the same time, you're you're like, well, let me check this because I wanna read
this. And, well, you you need to understand that, you know, as an advocate for myself, I need to, you know, x y z, whatever. So much is going on at once. And, again, it can happen to anybody, disability or not. So I know Ryan, you know, in in talking with you about this kind of stuff and and just knowing you and our friendship going going, you know, backward, you've been dealing a lot lately with a seizure disorder that your doctors can't
figure out. You know, they just keep throwing things at it and can't figure it out. And so now you're in another level of this, I guess, in a way with spoon theory because, you know, you've got your blindness, of course, and all the things that go along with that with the sensory overload and, you know, tactile overload and all that kind of stuff.
But now you're dealing with seizures where they wake you up in the middle of the night or you're watching TV on the couch and you have a seizure and, you know, fall over or you're walking and fall and, you know, all that kind of stuff and just the scariness of that, the emotions of that adds a whole another dimension to this, I'm sure. It does because you just don't know, at least with mine anyway. Some people can feel it coming on. Some people have, you know, a warning. I don't.
If if I'm gonna have one, I just have one. So it's that kind of in the back of my head going, okay. Am I gonna be walking through the grocery store and and have one or, you know, walking down the street or whatever and one's gonna come up? Thankfully, it hasn't happened yet. But you just kinda have those thoughts of, like, okay. If I get too overwhelmed, that could cause it. You know, stress and stuff like that is one of the number one causes,
to have a seizure and stuff. So it's like I've got to find ways to just kinda mellow myself out and not get too stressed out, super focused, you know, on stuff and just realize, okay. I can figure this out. Just take a minute. I can remember it had nothing to do with the seizures because they hadn't happened yet. But I remember being at the, national conference for the NFB a few years ago when it was in Las Vegas. And I'm blanking on the hotel right now, but it was a massive hotel.
And you get there, and they're basically you know, it's basically, okay. You're here. Figure it out. Figure out where you gotta go. And it's us and, you know, 3,000 other blind people. So to kinda give you a mental picture of it, I mean, there's canes tapping all over the place. There's dogs. There's, they had, people that were, like,
traffic directors basically going, you know, hey. If you're looking for the exhibit hall right this way and people looking for, the main conference room right this way, so you have all the the, you know, the people shouting directions. You have other people, you know, bumping into people and Kane like I said, Kane's tapping and going, oh, sorry, man. I'm trying to find such and such a place. Do you know where to go? You had bands playing. You had casinos going off and all this other
stuff. So I can remember just one morning getting off the elevator and just stopping, like, right in the middle of the hallway and and no pun intended, but looking around going, where the hell am I? And and how do I get where I need to go and just and having to stop and process everything and go, okay. I can do this. I can figure it out. I've been here before. What did I, quote, unquote, see to let me know where I'm at? And you gotta remember some of the tactile things
and, oh, wait. I hear the casino to my right. That's good. That's where I want it. I need to go, you know, keep going forward and go past the edge of the casino here, and I'll get where I need to go. But there you you have to kinda teach yourself ways to not get overwhelmed and learn those feelings that you can start to feel within yourself of, I'm getting a little panicky. I'm getting a little overwhelmed, whatever it is, before you kind of go over that proverbial cliff and it's too late.
That makes a lot of sense, and that can absolutely be be frightening with that much sensory overload and being lost and being confused in in a place that you're not familiar with and so many other people and all of that going on at once. I mean, there goes your your daily spoons right then and there. Charles, I wanna get your thought on that because I'm absolutely sure that you've been through that as
well. But before I do that, I wanna rewind just a little bit, Ryan, because I wanna ask you a question about the seizures. When you have the seizures, my my brother has a seizure disorder. And so I know that when he has his and I know different seizures, you know, are different. They they you react differently or have different effects. But when he has them, you know, he checks out for however long and then comes back, and he gets a really bad migraine, bad headache. He's
unaware of what's going on around him. There's that missing time, and he's depleted for a while. Is that an experience that you've had, Ryan? And how does that compare to what we're talking about here with, you know, using your spoons for the day? I mean, if you have a seizure, you know, what does the rest of your day look like after that? If I have a good one, I'm basically spent. It I'm just tired and just want to either just sit, you know, in a chair or or in a lot of cases, just lay in bed.
And then I'll eventually, you know, get enough energy to be up and around, but even then, I'm not, like, raring to go. I'm just kind of hanging out, and I'm like, alright. I'm just gonna chill out. And it usually takes a day, day and a half depending on how big the seizure is. If it's a little one, it might just be the rest of that day, and then I'm okay. But it really just kinda depends.
That makes a lot of sense. And I had a feeling that's what it was, because, yeah, those can really wipe a person out. And so in addition to everything else you might have going on that day, if if you've had to do some reading with braille or, you know, listening to some other things or, you know, whatever else has been going on in your life. And then all of a sudden, a seizure comes on. It's like, alright. That's it. I'm done. Yeah. Pretty much. It's over. I'm I'm
done. I'm a go over here and watch some football now. Bye bye. So no. That that makes sense. Now Charles, Ryan was talking about, you know, going to convention and, you know, hundreds or thousand other blind people and canes and dogs and chittering and chatting and, you know, screen readers probably going off everywhere. You know? And just all the the echoing of a hotel and and all that kind
of stuff. Then you've got the exhibit halls and say you're a presenter and you're, you know, you have to read from braille or listen from a screen reader to give a presentation or just listening to one and trying to take notes on a on a braille reader or something like that, you know, interacting with people, trying to find different things, that's an extreme example. But, I mean, I'm sure it's similar to if we go to a restaurant or we go to a movie theater or we go to a concert.
Those experiences for most anybody, but especially if you're somebody with low vision, no vision, the the extra kind of effort that it can take sometimes and then take out of us, I mean, there's a lot going on there in there, Charles? Yeah. There definitely can be. I while I was listening to Ryan, I was reminded of a moment when I was at one of the Orlando conventions for the NFB.
And, I had my guide dog, and my guide dog and I kind of lost spoons at the same moment because there were just too many things happening. It's exactly what you were saying. There were canes everywhere. There were dogs. There were people. It was loud. There were, they call them talking signs, the people that you were talking about, Ryan. You know, Exhibit hall this way. There was that going on. It was so
much. My dog was too overwhelmed by the unpredictability of all the blind people trying to figure their way around things. He had gotten tapped and smacked by a bunch of canes. He'd already gotten his leash tangled with another dog whose owner wasn't paying attention and got mad at us. It was a whole mess. And both of us just sort of slumped at the same moment, and we're like, we can't handle anymore. And, I had to actually leash guide him out of the super crowded area. He was
done. He he couldn't work anymore. I didn't have a cane on me at the time, which was actually rare for me because usually when I travel, I do keep a spare cane on me at all times, but I didn't have it then. And I had to leash guide him out of the crowd, and then he stepped back up into guide position and basically took us back to our room because he knew where it was. We've been there a couple of days at this point. But, I mean, you just sometimes don't know when you're going to get overwhelmed.
And I am lucky enough to be able to talk about spoon theory in the sense that when I run out of spoons, I still have a little bit of base energy to deal with whatever happens. But for a lot of people, spoon theory is a very literal representation of how much energy you are you have you are working with or how much ability that your disability allows you to have in that moment. There are people, when they say they have no more spoons, they mean it. They have
no more spoons. They cannot do anything except lay in bed because they hurt too much, because they're too tired, because their senses are going haywire, because they've had seizures. And so I wanna make sure that it's very clear to the listeners that I think for the three of us, when we say we have no more spoons, we might be able to do something small. We might be able to have a conversation or get up to go to the bathroom and go back to bed or something, but that's not always the case.
So, before we move on, I just wanna make that very, very clear. Now to your point, Tim, there are situations, though, that I actually find kind of invigorating. I actually did go to a concert a couple of weeks ago, and I had a lot of fun. It was a rock concert. It was loud. It was crowded. There were flashing lights everywhere, and I loved it. I loved the whole four hour show or however long we were there. I don't remember. It was time was meaningless. Alright?
And we had with us it was me and my girlfriend, and we had with us two of my other blind friends. And all four of us were in the upper level in our seats, and the two other blind people experienced the show similarly to I did. But what I noticed was on the way home, they were really tired, whereas I was energized. I wanted to do more. I kept telling my girlfriend, like, I would love to be down in the mosh pit right now. Like, we almost did, honestly.
And for me, it's an interesting comparison to know that a lot of people might have found that overwhelming, but I did not. And I almost wouldn't have cared if I would have gotten auditorily overwhelmed or visually overwhelmed because I have enough sight to see the the laser lights and the flashing and the and the smoke machines and all that. And it's it's different. Right? I I went there almost intentionally to be overwhelmed in in a weird way.
And I think it would have been a very different experience if I wouldn't have had a sighted person with me, But I did, so I knew that I was sort of safe if it did wind up being too much. And so that enabled me to kinda let go a little bit more than maybe I would have if I were on my own.
Yeah. It allows you to go into the experience a little bit more relaxed than maybe you otherwise would have if you had been just you and a couple blind people trying to navigate, like Ryan was talking about, you know, at an exhibit hall or at a convention where, you know, we're all playing, you know, stick swords, you know, cane swords, you know, like, oh, hello. Excuse me. Sorry. Oh, hello. You know? Played that game quite a lot where you you stumble upon other blind people. Oh, yeah.
Exhibit halls are fun. Yeah. Oh, yeah. Yeah. Yeah. But but that's a but that's a great point because, you you know, when I was talking earlier about the the fundraiser that I went to, we'll go back to that because the music was awesome. You know, the band that was playing, you know, they were very good. They were friends of the person that we're raising money for, and the band was great. They were playing some really great music. A lot of songs that I really, really love and enjoy.
You know, they were covering a lot of, you know, classic rock songs and and eighties rock songs, stuff like that. So it was really cool, and I enjoyed what I could enjoy, if that makes sense. Like, for what it was, I could enjoy it, but it added to everything else. You know, any everything else in in that building, everything else that was going on around me, it was just that, you know, the pressure cooker just blew. And I think it can sometimes be the environment itself
added to other things. But I've been to concerts where I've had the same experience you did, Charles, where I was invigorated, and I was excited, and I had so much fun, and I was screaming and yelling. But the sound in my memory was totally different. You know, it's one thing to be up in the stands. You know, the crowd's all facing the same direction, so they're not yelling around you. They're yelling at the same direction you're yelling, you know,
away from you. The band isn't right up on you and right in your ear next to the speaker. I mean, you could be, I guess, if you got those kind of seats, but in my experiences, I don't usually do that. So, you know, you don't have that full three sixty sound around you of of an audience. I mean, I guess, unless you're way down to the front, you've got everybody behind you. But you know what I mean? Like, the some of the audience is still gonna be in front of you, and and you've got
the the band there. And so I've had that experience where I'd come out of it going, oh my gosh. That was freaking awesome. That was the best concert I've ever been to. That was so great, and I'm so energized. But then there's those other moments where it's just like, nope. Uh-uh. There's too much around me. You know, it sounds like it's above me and around me and, you know, penetrating everything of my being, and I just can't do it. I think the other aspect of that is what you
bring into it. So if you're already coming into it, having a bad day or a bad couple days or you had a stressful you know, something happened, an event happened before you went and and participated in something like that, you might have already depleted said spoons for the day, you know, or depleted half of them and you only have
so many left. And that that goes back to what the original, you know, Spoon Theory blog was about was, okay, I might go into something like that having already depleted some of what I could do for the day. And so I may
not have enough left. But if I go to a concert or something where I really haven't done anything else the rest of the day beforehand, you know, I got up, I I, you know, got cleaned up, got got, you know, something to eat, just sat around the house for a little bit, and then just went straight to the concert and really did nothing else. Well, then I might have my full allotment for the day that I could just spend at the concert and afterwards
still have something left. And so I think that is something key to keep in mind.
Another analogy, I think it's obvious analogy, but, you know, think of a gas tank or think of a bucket or think of, you know, anything that you can fill up that can be depleted and, you know, there might still be, as you were saying, Charles, you know, if you're thinking like, you know, put water in a bucket and you just keep spooning out water, you know, until you're done with your energy for the day, there still might be that little bit of, you know, water there at
the bottom, little droplets that are left that you might still have just some to do something with. But it may not be a lot or it could be a lot. And so I think that's why this is an important conversation because to visualize or to to think through that process of what can I do, what can't I do, when can or can't I do it, you know, how much do I have left? It it will vary person to person, experience to experience, but we're all gonna be going through it in one way or another.
Yeah. And you just touched on an aspect of spoon theory we haven't talked about yet, and that is the ability to take a spoon from a future day or prepare yourself so that you can have extra spoons if you know that you need them. Now, of course, that comes with a cost. If you, quote, unquote, take a spoon from
tomorrow, that's less spoons you have tomorrow. And it is totally possible if you do that a couple of days in a row to wake up and only have maybe two spoons, and you're like, well, I guess this is a rest day. So you have to be careful with that. And, again, it comes back to your personal experiences and your personal abilities. So some people are better able to prepare spoons ahead of time.
You could maybe intentionally have a slow weekend to prepare for a very busy workday on Monday, for example, and you may have 20 spoons where you may have only usually had 10, especially on a Monday. Or maybe your Monday is supposed to be slow, but it turns out to be incredibly busy without any warning. You might borrow from Tuesday's spoons because you can't adjust Monday's routine anymore. You have to push through it. You're already
at work. You're committed. Right? But it may mean that you have to duck out of a meeting or you have to not go to that luncheon on Tuesday because Tuesday has turned into a partial rest day because of what you had to deal with on Monday. Well, and I think to to kinda go backward a little bit to where you guys were talking about going to, the concerts and stuff. I mean, like you guys, I've been to, you know, all day
metal shows and stuff like that. And it's, you know, thousands of people and five and six bands, and it's just really intense, you know, start to finish and been perfectly fine. And, you know, walked out like you, Charles, and going, dude, I want more. And and why is it what do you mean it's midnight already? What are we doing? Yeah. And I think you can do you kind of can do that because you're prepared for what's coming before you got there. It's not that, surprise. You're right in
the middle of a metal show. You kinda you knew what you were going to when you went to it. We did intentionally prepare ourselves for that. Usually, my girlfriend and I play D and D on Sunday afternoons. We canceled D and D. Well, I shouldn't say we canceled. They played D and D without us. They were perfectly fine. We didn't go to D And D. We instead went to my friend's apartment and hung out for a couple of hours, ate some pizza, chilled,
and then went to the concert. So we definitely did give ourselves that ability to not only did we not spend spoons that we usually would have, and so those got allocated to the concert, but we gave ourselves to accumulate a spoon or two more because we gave ourselves some chill time beforehand. Oh, yeah. I've done the same thing, you know, knowing I'm gonna go to, you know, whatever the
festival is or whatever. Drink plenty of water before you go and have, you know, not a huge meal, but have maybe a meal with, like, fruits and and whatever to just chill out and relax and keep calm you know, everything kind of calm and mellow it out before you get there. And then just have that release when you're there and you're like, man, this is great and and fantastic and and let's go again. Yes. Exactly.
And there are some things where I will spend spoons to gain spoons, if that makes sense. Like, we're talking about hiking in a couple of weeks, and preparing for a hike as a blind person is sometimes a little bit more involved than just pulling up to the trail and walking. Right? We can't follow signs, for example. So I need to learn the shape of the trail ahead of time so that I have an idea of where we are when we're on the trail. I might need to make sure that I
have the right gear. But all of that said, once I'm hiking, I have spent spoons to prepare for the hike. I have spent spoons to get to the hike. I am spending spoons to hike safely. But it also gives me spoons because I'm out in nature doing something that I really enjoy away from the city as much as I can be. And I I get a couple of spoons doing that. And so sometimes it's all about how
you invest your spoons too. Well, I wanna talk about that because preparation in general for anyone who's blind or visually impaired, and really for anybody, but especially for us, preparation is a big deal. Because if you know ahead of time and you don't always know ahead of time, of course. But if you do know ahead of time you're gonna be somewhere, you're going somewhere, or vacation or a concert or whatever it might be, you know, going hiking like you said, Charles.
We as blind people almost have to, not all the time, but almost have to plan and prepare. And so it's a matter of, okay, how am I getting from what point a to point b? Am I gonna be able to get a ride? Do I need to get an Uber or a Lyft? Or do I need to, you know is there a bus? Is there a train? Is there a whatever, you know, that I need to find out
how to do that? Is their app accessible, or do I have their phone number programmed to my contacts so I can call somebody, you know, and get somebody on the phone that can can help me if I need some? You know, figuring out, okay, where's the hotel and what are the restaurants around that? And, okay, when we leave to go from there, I I need to know how to get to here. You know, all those kinds of things that a lot of people might take for granted.
You know? And, again, I'm not saying that people without a disability or that aren't blind don't deal with these kind of things, but we almost like I said, we almost have to. And that can be depleting all in of it, you know, in and of itself because you're getting yourself mentally prepared, emotionally prepared to do all these things. But then once you do them, it could be relaxing, could be stressful. Does you know, it could go
either way. For example, we've got a a vacation coming up here, and part of that vacation, we're gonna be, in Orlando. And so we've talked about a Saturday, we're gonna be at Disney Springs where all the shopping and, you know, restaurants and all that kind of stuff are. And that's gonna be a lot of walking and a lot of just, you know, going in and out of stores and all the different kind
of things that go along with that. And so Sunday, the next day, we've already planned that's a rest day because I know it's gonna be overwhelming for me just sensory overload. For my wife with her nerve issues and and back and knee issues and things, she's definitely gonna need a rest day. And so that Sunday is gonna be at the
hotel by the pool. We might go out to dinner, or if there's a restaurant at the hotel, we might just stay there and go, you know, go to the restaurant there, or, you know, just stay close to the hotel, basically. And then the following day, we're gonna go out. And as of right now, we're talking about going to SeaWorld. And we know that's gonna be, again, walking and and all kinds of overload. But that day between, we've already had to plan that and say, okay. Does the hotel have a a pool?
Yes. Great. You know, what are the restaurants around the hotel, or is there one there? And, you know, what what else could we be doing that could just be low energy or or easy on us that we're we're not expounding more energy and using up those spoons, you know, as it were. So it you you have to look at that kind of thing. And and even the preparation itself can be stressful and and use a couple
spoons. But like you said, Charles, you might use a couple spoons in preparing for something, but then once you get there, you can get reinvigorated and you can get rest. And if you plan rest days, that definitely helps get through, you know, the depletion of of the other things you're doing. Yeah, Tim. And it is really that investment mindset. You know, they they always say you gotta spend money to make money.
Sometimes you gotta spend some spoons to make spoons, and that might be something as simple as spending some spoons to go to a bookstore to find a new book to read. Right? You know that's going to be a tool that you can use later on a rest day or, on a day that you didn't expect to be a rest day. You pull out a new book. And for a lot of people, that's a good investment.
Whatever it is that helps you get more energy, that helps you find the the resources to continue to accomplish what you need to accomplish is a good investment, not just in that energy, but also in your mental health and your physical well-being. I mean, you know, bettering one aspect of your health betters every aspect of your health. So it's it's something that everybody develops their own strategies for, and it it does vary from person to person.
The book example is a good one for me, but I know plenty of people who don't enjoy reading hard copy braille. I mean, procuring hard copy braille is not as simple as going to the bookstore. But oh, I wish it were. Anyway but it, you know, other people, it might be video games, or it might be music, or it might be going on a walk. Some people are lucky enough that they don't have a disability that impairs them from walking, so people will go on a walk around the block, and that
helps invigorate them. Right? So whatever it is for you, everybody has these activities. So before we wrap up here, guys, I just want to get each of you to give you kind of your final thoughts and and opinions and any other, you know, examples that you might have if you have any left that you wanna talk about as it relates to, you know, the original idea of spoon theory and how it relates to being blind or visually impaired and and what we go through. So, Ryan, we'll go ahead and start with you.
I just think a very important thing to recognize, and it's not always the easiest, and it may be just that you don't realize it. It could be stubbornness. It could be all these different reasons as to why that you may have trouble admitting to yourself or your family as to, look, I'm spent, I'm tired. I I I need, be it an afternoon or maybe a complete day, and recognize that and do it.
That you're better off in the long run of taking that afternoon or the day to recoup because you haven't ruined the rest of your vacation or whatever it is you're doing because you built in time, like, Tim, you were talking about earlier, to relax by the pool for the day and and have a chill out day. You're still having fun because you're at the pool and you're still with the family and doing and doing that thing, but you're recovering at the same time.
And it takes some people a long time, myself included, to learn that to learn that, wow. Okay. This is what's going on with me. This is what I can do to speed the recovery process up. This is what I can do to not spend all my spoons and can, you know, recover that much faster and and be good for, however long. Yeah. I kinda wish I kinda wish we had a, self updating user manual that, like, teaches us these things as we move through life. And when we find better strategies, it just auto updates.
I agree. That would be cool. Everything that Ryan said. All of it. I I agree with I agree with Ryan a thousand percent. Everybody's journey looks different. Everybody's recovery processes are different. Everybody's allotment of spoons on any given day is different. Physical, mental, and emotional spoons, I believe, are all separate but equally important categories to keep track of. And it doesn't really matter what number you assign to which activity. It doesn't really there's no, like,
scale. Right? It's not a a specific unit of measurement. But if you are trying to explain the challenges that you run into and the toll that those challenges can take on you to a loved one or a curious friend or even a stranger, this might be a really good tool for you to use. Absolutely. Well said by both of you. This is why I I love having you guys be a part of the show so much because you were so thoughtful and and passionate
about these topics that we discussed. So thank you both for, for opening up and and talking about these things because it's not always easy to talk about these kind of topics and and and really diving into them because sometimes these are things that people, I'm not gonna say can't talk about, but just have a hard time talking about and opening up about and, you know, and saying, hey, let's look at ourselves and look what we have to go through and how we handle that and how we get from point
a to point b and or do we have to skip point b sometimes just to get to point c? You know, it it it it can be so difficult. And so to talk about it openly and honestly and being able to give personal examples, I think, is really, really important, but, can also be very hard. So, again, thank you both so much for, for, you know, being here with me and talking through all these things. And to the audience, thank all I wanna thank all of you for continuing to join us and supporting the podcast.
Again, if you have questions, comments, suggestions, anything you wanna get in touch with us about, if you have, suggestions for future episodes, things you want us to to talk about, send your emails to Tim@lifeafterblindness.com. Don't forget to find us on social media at Facebook, at Labcast or just, you know, search for Life After Your Blindness on Facebook and join the group there and the page and join that discussion or find us on Twitter
at Labcast. And again, the Patreon, patreon.com/labcast. Once again, thank you, Charles. Thank you, Ryan. And thanks again to all of you for joining us. Join us again next time where we continue our journey to find that there truly can be a life after blindness. Take care, everybody.