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.
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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.