記憶喪失の真実【CC (The Truth About Memory Loss [CC])

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(cheerful music)
- [Clara] Five, four, three, two, one.
- Rainbow, there was a rainbow thing.
Rainbow confetti.
Ears.
There was a think that relates to sound.
Ah!
- [Clara] What day is tomorrow?
- Friday.
Not Friday.
- [Clara] What did you have for breakfast?
- The two words that are coming into my mind
are pistachios and Cheerios, and neither of those are right.
Hi, lovely people, I"m Jessica,
and for those of you who don't know, I have memory loss.
Quite bad memory loss, due to being slightly brain-damaged.
It's fine.
If you really want to find out why,
watch some of my other videos.
I've decided since I work from home
as a full-time YouTuber, I think my life
would just be a lot more sorted and productive
if I tried to take all of the scrappy bits of paper
that I leave around in an attempt
to mold my memory into something,
and just stuck them on the wall.
So with me, you are going to create
an amazing pin-board of my memory.
I'm going to call it Jessica's brain,
and it will be on the wall forever.
And while I do that, I'm gonna answer
some of your most-asked questions about memory loss
and what living with it is really like.
There are things that I will definitely never forget.
I never forget that my name is Jessica,
I never forget that my wife is called Claudia,
I never forget that we live in Brighton.
I don't forget where I am when I wake up in the morning.
Those aren't things that I generally forget.
The things that I do forget are things
that are more like actions that I have done
or that have been taken.
Technology is obviously massively important aid
when it comes to memory loss.
I don't know where I would be without my Google Calendar.
It's amazing.
Even little tasks that I need to do,
like, oh, fill in this form, I'll put in my Google Calendar,
and then if I don't get it done that day,
I just move it to the next day,
because then every day it sends me a reminder
to tell me to do it.
It's also really helpful to be able to share things
like to-do lists with people,
rather than on 50 scrappy bits of paper.
Technology has really helped memory loss
in the fact that I can look something up.
Who is that?
Sometimes I just have a gap in my ability to do maths
when it relates to myself and my own experiences,
weird thing, but Google tells me.
I don't remember when I first got memory loss.
I don't remember when my memory...
No, I have...
No, no...
I have a very clear memory, I think, of my childhood,
but I also have a problem where I can't tell the difference
between a memory and something I just thought once.
Especially with my childhood,
where it definitely didn't exist,
but my brain tells me that that is a honest-to-god memory.
Like, it'll have a unicorn in it,
and my brain's like, yep, that happened.
Ooh...
So I have a real problem when I tell someone,
I need you to write this down for me,
because I have memory loss, and I will forget,
and their immediate response is, oh, I get that too.
And I'm like, no.
I think normal memory loss is forgetting your shopping list
and only being able to remember half of the things.
For me, memory loss is crying because you got
to the top of the stairs, and you kind of think
that you've maybe been going up and down the stairs
for 20 minutes now, and you don't know why.
Your mind is a gap, it's a very physical gap in your brain
that I feel and I'm aware of.
It's a cube of emptiness inside of my mind
that's never coming back.
I got nothin'.
Can you say that again?
- [Clara] Yes.
- Tricky.
I think that you have to give up a certain amount
of independence, because I am perfectly aware
that when left alone, I'm a crisis.
Claudia will come home and she'll be like,
have you moved in the last five hours?
And I'm like, oh, I guess not.
Can you feel your feet still?
And I'm like, no, I thought it'd been five minutes.
That's another thing about memory loss,
you kind of have no sense of time.
So you could leave me alone in a room,
come back in five minutes later,
and I might be like, why did you leave me for a day?!
You're fine.
Does that answer the question?
What was the question?
(laughing)
What you're saying I guess is mothering,
but just don't present it in that way.
If you're not presenting it to me in a like,
did you remember to take your pills?
Don't.
(record scratch)
So I know so far this video has been really upbeat
and chipper, because that's me all the time,
but it's not, and I kind of wanted to make sure
that this video was very balanced,
because living with memory loss can be awful.
It's a really difficult, trying, upsetting thing
to wrap your head around.
We've just moved to the new house, so got a new pharmacist.
Ordered for the very first time from them,
yeah, Clara called through to the doctor,
who called through to the pharmacy,
we then phoned the pharmacy and said,
have you definitely got this prescription?
Just checking everything's gone smoothly.
The pharmacy said, yes, we've got it.
And this was Thursday the 27th,
and I was like, woo, good, because I'm gonna run out
of that pill in two days' time.
Clara said, can we put Jessica on the delivery list please,
and they said, oh, well the delivery list
is actually only for elderly people.
And we were like, is it, really?
They were like, yes, it's only for housebound people.
Clara's like, oh, right, housebound people,
well actually, Jessica has a disability
and she can't leave the house by herself.
She is a housebound person technically.
So if you could put her on the delivery list,
that would be great.
And the pharmacist said, sure thing, will do.
Friday, nothing, but Saturday,
we know they're open and they deliver, no.
Ran out of my pill.
Realized that that was not good, that was not good.
Sunday, we were like, mm, well, okay,
it's a Sunday, yeah, we just moved in,
we kind of messed up our days,
I guess the pharmacy just couldn't deliver in time,
and they're closed, but they'll be delivering
on Monday for sure, but we just need pills for tonight.
So rang 1-1-1, which is the service we have in England
where if you have a medical thing that isn't an emergency
that requires an ambulance, you know,
you'd ring 9-9-9 if your house was burning down
or someone was having a heart attack,
but if you're unsure as to what you should do
about that weird rash, you ring 1-1-1,
and they talk you through it very helpfully.
Or if your prescription has run out,
and you really desperately need some medication right now,
you ring 1-1-1.
So this time, we used 1-1-1, they were like, sure,
we're gonna send your prescription
to the closest pharmacy to you.
We had enough pills for two days.
That's enough time for the pharmacy to deliver, right?
And then many things happened during the week.
Monday, stuff, you know, work stuff.
Clara phoned the pharmacy again,
just checkin', just checkin'.
The pharmacist was like, yes, your pills are here.
She's like, great, delivery?
And they were like, oh, well, you know,
delivery's only for housebound people.
She was like, okay, fine, fine, we'll...
Fine, fine, fine, fine, look, again, just deliver.
And they were like, oh, okay, yeah, no,
that does sound like she should be on the delivery, sure.
We wait.
Tuesday was a very special day,
because I'm not really left alone ever.
Memory loss is one reason,
because literally anything could happen.
All I do know about Tuesday is that I learnt
how to digitally paint, because I released a video that day,
and a Tweet which said, I learnt to digitally paint.
If you're wondering whether I check my own life
by going through my social media, the answer is yes.
Got to Wednesday, and yeah,
had completely forgotten about the pharmacy.
Got to Thursday, still forgotten.
Friday, didn't enter my mind.
Saturday, nope.
And then Saturday evening, which is always the best time,
isn't it, to think of something?
I looked down at my pill case,
and I thought, huh, where are my yellow pills?
'Cause I should be taking three yellow pills in the evening.
Yes, because if you stop taking them,
a myriad of bad things can happen.
Like a stroke, apparently.
Why am I always at risk of a stroke?
I don't know, it's magic.
I'm sorry, I'm being far too chipper about strokes.
I just can't not be chipper, especially when upset.
On Tuesday, did they deliver, and I don't know,
and I've put my pills somewhere,
and I don't know where they are right now?
And we ran, we ran around this entire house
on Saturday evening going, oh, my god,
where are they, how could they have come, and...
No idea, and I kept trying to like,
force my memory, I kept trying to think, like,
on Tuesday, did a man come to the door
and hand me a bag of pills, and I put them somewhere?
The bins got collected, have we thrown away the pills?
And I say, we, but we both know who it would be.
Did Jessica receive pills on Tuesday,
and rather than putting them into her pill box,
put them in the bin?
Because that's a thing I sometimes do as well,
'cause I forget what an object is,
and then I do with what I will do with another object
that I'd earlier seen.
Mind blown.
So again, we had to phone 1-1-1, be like, sorry, emergency.
And of course, because we'd already done this
the weekend before, they were like,
we kind of have to check that you're not drug dealing.
Not that you can even have fun with these pills,
they're not even fun.
So we spent all of Sunday with 1-1-1,
and the doctor phoning, and then get out-of-hours doctor,
and then out-of-hours nurse, proving over and over again
that we're definitely not drug dealers, definitely not,
it's just that Jessica has memory loss,
and she doesn't know where the pills are.
I was just, I was so upset, I was crying my eyes out,
like, am I worse than I think I am?
Went to the pharmacy on the Sunday,
and Claudia was like, could you just tell me
whether these were delivered, because she doesn't know.
Were they delivered or not?
And the people were like, oh,
well, mm, we don't always work here,
we're just like temporary workers on the Sunday.
So we're like, fine, fine, we'll come back on Monday,
because Claudia's got annual leave this week, woo,
so she's not going to work.
So Monday, we were like, right, went back to the pharmacy.
Hello, can you just tell us
whether these pills were delivered or not?
That's all we need to know.
If they were delivered, then Jessica
has thrown them in the bin, and we must go
to the doctor, and apologize profusely,
and say, genuinely not drug dealers,
please, please, please, can we have more pills?
And if they weren't delivered,
where the frick are the pills?!
And they were like, mm, well, the records show
that we have already claimed this money from the NHS,
which means that we must have given you the pills.
That's not evidence though, is it?
You having taken money for providing a service
isn't evidence that you provided the service.
That's not how that works.
When someone delivers pills, you have to sign for them.
Can you show us the sheet that says they were signed for?
No, no, apparently she couldn't.
Okay, fine.
We just had the most awful conversation
where this woman, again, was like,
oh, delivery is only for housebound people,
you wouldn't be on the delivery list,
and Claudia's like, she is housebound.
I'm aware, I've driven her here today,
but she can't leave the house by herself,
therefore, that's what that means.
And the lady was like, no,
it's for elderly housebound people.
Like, giving me all of the sass, all of the sass.
Thank you for belittling my entire existence,
because obviously, as a young disabled person,
I already feel like I don't matter, but elderly people do.
I'm sorry elderly people, you're great.
I just, it's ageism, we don't the help that older people do,
because, I don't know, that's terrible ableism,
but that's what it says inside my soul,
so there we go, internalized ableism,
you just gotta live with it, haven't you?
And Claudia was like, look, we're telling you,
I didn't see this pill packet on Tuesday when I came home,
I genuinely do not believe that these pills were delivered.
And the lady's like, yeah,
but it's your word against ours, isn't it?
And we've claimed.
So sorry, are you just calling me a liar?
What?!
No, what?!
And just, they were so rude.
And I can't even remember everything they said.
And she was like, nope, we've dispensed them,
you have taken them, and now you're saying
you don't have them, so you're gonna have to go
to the doctor and prove yourself.
We'll just go then.
And so as we were driving in the car back home,
we got maybe two minutes, two minutes away,
and she phoned up again, and guess what?
They found the pills.
They had moved them from the delivery shelf
to the collection shelf, and then for some reason
didn't tell us, or mark them as collected.
They just took the money from the NHS,
so that's great, and not at all fraud, except it is fraud.
Wow, okay.
So we went back, we got the pills,
we said we're gonna make a formal complaint,
and I still cried, because I genuinely believed
that I was losing my mind.
I mean, I know I'm forgetful, but am I also the type
that would put my pills in the bin?
I mean, maybe, I don't know.
Maybe I've done that before.
This was meant to be a really brief interlude.
It's gone on.
Back to the fun stuff.
- [Clara] Sorry, I was taking a photo of your dog. (laughs)
- All you do is take pictures of my dogs, my god.
I would describe my memory...
It's a circular track on which a railway train
goes around and around, and the railway train is life,
and there are just some tracks missing.
I can't put anything in that hole,
but also don't know when the hole's coming.
In my personal experience, my memory loss
affects my short-term memory
more than it does my long-term memory,
but having said that, I can't tell.
It's very difficult to keep a hold of something
that is like sand.
I see the effects of it in my short-term.
Maybe if I had to deal with things
that were in my long-term memory more,
I would see the gaps there.
But yeah, there are long periods of my life,
that is, two years, where I have no idea,
I have no memories from those two years.
Anything could have happened.
The strategies that I use to help remember things
are called a million notebooks and scraps of paper.
I write down at the start of a day a to-do list,
I have to do it at the start of every single day.
Even if it's a day off where Claudia and I
are just having fun at the weekend,
and then I tick it off, or cross it off.
It really comes apart when I forget about the list though.
This is very depressing.
Memory loss is fun though.
It sounds really stupid, but memory loss is fun
because I don't remember the bad things.
I got no receipts, no.
It's gonna be interesting when I have children.
I guess they will just have to be very patient with me,
as my dear wife is very patient with me,
and know that it's not my fault.
It will have to be like, if you want mummy
to know something, you write it down,
and you stick it on the wall, the wall of mummy's brain.
That's what that wall's gonna be called, mummy's brain wall.
That's both tragic and like, kind of sweet.
You have a direct access to my brain.
See, other kids don't get that with their parents.
Um... (laughs)
It's not the best movie to portray memory loss.
That's not how most people with memory loss works.
It isn't, oh, this day, and I can never remember
anything past this day.
Memory loss tends to be much spottier.
But no, I think 50 First Dates is a very fake way
of portraying memory loss, and it's kind of weird,
and feels a bit like she's being taken advantage of.
Just saying, you know, it was a bit...
It's a bit not okay, guys, it's a bit not okay.
My number one most important thing that you need to do
if you've just been diagnosed,
side-note, if you've just been diagnosed, it probably means
that you're already aware that you have memory loss,
because you sought that diagnosis, so...
Just let go, that's it, just let it happen.
Let it roll over you.
Clinging onto a memory doesn't necessarily
make it stick in your brain,
and it can also very much pollute the memory.
Like, the moment that my wife and I got married,
that I don't actively seek out.
It's like, if I'm swimming in my mind,
and I can kind of see it there on the horizon
out the corner of my eye, but I don't look at it
too closely, because I know if I do,
it will put some other things over what's there,
and then it mushes together.
It's very easy to get very upset when you have memory loss,
because it's very frustrating.
You get the feeling that you're annoying
to everyone around you, because you've forgotten something,
you've forgotten to hang up the wet washing
that has been sat next to you for an hour,
completely forgot that wet means hang,
and you just have to be okay with that.
So yeah, that's my number one tip.
You just have to be okay with it.
Other people around you have to be okay with it.
Don't fight against the force of memory loss.
You just have to enjoy all of the good parts.
Just think, that terrible thing, I forgot it,
I remember the feeling of love from that good day
that I had, even if I don't remember
what actually happened itself.
I remember that I was surrounded by people that I love,
I remember that they came there for me.
I remember feeling joy.
Those are the kind of things that I keep in my mind,
and I just allow the not so great ones to slip away.
This adorable Jessie and Claude Lovely People poster
ships worldwide, and is available now from my merch shop.
You can find it either in the merch shelf below
or via the link in the description.
(cheerful music)