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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)

(cheerful music)

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