Narcolepsy Cataplexy Dyslexia with Marcus Morgan-Valentine

Chantal Boyle:
Hello. My name's Chantal. And joining me today is Marcus Morgan Valentine. Hello, Marcus.

Marcus Morgan Valentine:
Hello, Chantal. How are you?

Chantal Boyle:
I'm really well. Thank you. A little bit hot. [crosstalk 00:00:11] weather at the moment. But yeah, I'm really good. So can you tell us a little bit about yourself please?

Marcus Morgan Valentine:
Yes, certainly. Well, I'm 43 years old. I was born in wonderful London. And my parents, my mother's Jamaican. My father's South American. And I'm a [inaudible 00:00:28] professional. I have been for the last 25 years. But in addition to that, I do lots of other different things. I'm a professional singer. I run events. I speak at events as well. And really just want to be a voice to people who are voiceless, in whatever capacity that is, particularly people with hidden disabilities. That's my heart and passion and my place of real passion even more so now.

Chantal Boyle:
Well, I mean, that's a lot of stuff that you're into there. With your singing, what music do you sing? 

Marcus Morgan Valentine:
Anything really positive. Because for me it's really important about having a positive, not just anything that sounds good, but words which really represent the truth of what I want to present. So lots of things around either gospel or inspirational or those sorts of things.

Chantal Boyle:
Do you write your own lyrics?

Marcus Morgan Valentine:
I used to. I used to. I stopped that for a while. But I decided that from September this year, I'm going to start back again. And there's some tracks [inaudible 00:01:17] which is lots of fun too. So I'm really excited about that.

Chantal Boyle:
So you said that you want to be like an ambassador. Hidden disabilities are something that's really important. 

Marcus Morgan Valentine:
[crosstalk 00:01:28]-

Chantal Boyle:
Do you have hidden disabilities yourself?

Marcus Morgan Valentine:
I have a lot. So first of all, deal with a learning difficulty first. And that's around dyslexia. So my dyslexia particularly manifested in a particular way, which is around memory processing speed. So my percentile is two. That means 98% of the world remembers things in their short-term memory better than I do. So it makes it really difficult for me to recall information and that sort of thing. There's lots of things I [inaudible 00:01:53] in my head actually to remind myself of things. And that's a learning disability on one side.

Marcus Morgan Valentine:
Now to the physical and health disabilities, I have narcolepsy. So with narcolepsy, it generally means that in the frontal lobe of your head there's a hormone which you release which is called hypocretin. And what that simply does is it aids wakefulness. So it just means that you stay awake. So I could imagine, right now, you, Chantal, are experiencing this wonderful hormone. Myself, I don't produce it. And if I do, it's a very, very, very small amount. So consistently, throughout my day, I have a desire to sleep or nap. And it can happen anywhere at any time.

Marcus Morgan Valentine:
So just giving a quick example, you get into what we call REM sleep. And that REM sleep happens within about 45 minutes to an hour and a half in your normal sleep pattern. For someone like me that's narcoleptic, it's usually 15 to 20 minutes. But with me, it's four minutes. So I very quickly go into sleep and straight away into dream zone, if you like. And it's really quite awful. Alongside that, I have cataplexy. And the only way to describe that is if I have a strong emotion or if I'm sort of crying, upset, anger, fear, any of those sorts of things, the only way to describe it is like if you have muscle wastage. Which means I will literally fall on the ground, collapse anywhere, literally. And that's anywhere. So my friends who I have around me will make me laugh, and if they do, I'll say, "One minute," and I'll grab onto something because I don't know if I'm going to collapse. That's how serious it is.

Chantal Boyle:
When you feel a strong emotion, that's when you collapse?

Marcus Morgan Valentine:
Yeah.

Chantal Boyle:
Oh my gosh. So that can literally happen at any moment then. So if you're having a good time. So it's anger, fun, amusement.

Marcus Morgan Valentine:
Yeah. Any strong emotion. 

Chantal Boyle:
When did that start?

Marcus Morgan Valentine:
That started when I was young, very, very young. I mean, there's lots of research around narcolepsy and cataplexy. They usually work together. But what's been my one is they believe there's some kind of trauma that happened when I was younger, and I've had a lot in my youth. And they believe that's probably the onset of that. Whereas the brain now attacks the area of the brain and then no longer you're producing the hypocretin in the same sort of way. So since I was a child. Back home, in Jamaica, my mother's side of the family, they call it dropsy, which is actually a good term, because that's what it feels like.

Chantal Boyle:
So other people that your family know in Jamaica, they are familiar with this [crosstalk 00:04:13]-

Marcus Morgan Valentine:
It's just called dropsy, and that simply means that you just drop asleep anytime, anywhere. But it's almost like a laughable kind of a joke thing that's kind of added to it. So it's kind of seen in a funny sort of term. But when you bring it to areas like work and things like that, that's where things get particularly challenging. 

Chantal Boyle:
And so your narcolepsy, that also started when you were a child.

Marcus Morgan Valentine:
Very young. The first incident I can recall was after I had a car accident when I was seven, where I was thrown across the other side of the road. Everybody thought that was it. But I'm still here, thankfully. But I remember from after that then this dropsy thing started to occur. And there was one time I was working for an establishment, and a colleague of mine came to work next to me. And she was saying I would be typing, literally sitting right next to me, I would be typing away, and she would be talking, and suddenly she would see my fingers stop, and my head would just bow down. And she was talking to me and nothing would be happening. And then suddenly, about a minute or two later, I'd put my head back up and still keep typing but continue the conversation where we last was talking.

Chantal Boyle:
That's incredible. 

Marcus Morgan Valentine:
And she said to me, "Marcus, do you think you got narcolepsy?" I said, "What the hell is that?" I had no clue at all. None at all. That was in 2010.

Chantal Boyle:
So that's when you started to seek a diagnosis.

Marcus Morgan Valentine:
I certainly did. Because I'd never heard of it. It was just dropsy. That's what we knew it as back home. That's what it was. And everyone just accepted, "That's what happens with Marcus. That's just how it is. That's life." Until later on I found out all this information and detail and diagnosis. I went to a sleep clinic and all those different things. And so how serious mine was to other narcoleptics, which made me feel a bit more kind of concerned, really.

Chantal Boyle:
Oh, so that's interesting because one of the questions that we often ask is, did it make you feel better once you had your diagnosis to understand what was going on with you?

Marcus Morgan Valentine:
Yes and no. So yes, I was happy because at least now it wasn't just this dropsy thing that I have no control over and I couldn't do anything about. It was now a diagnosis, number one. I knew it was a brain condition. So it was neurological. In addition to that, I understood that there was medication I could take not to cure it, because it's controllable at the moment, but it's something that could help me to manage this sleep thing. I could actually say, "Well, this is why it happens, and this is what I have." And it added some context for the work situation and family and everywhere else too.

Chantal Boyle:
Were your work environment, were they sort of comfortable with that once you explained to them what was happening? Because presumably, you got employment before even knowing what it was.

Marcus Morgan Valentine:
Absolutely.

Chantal Boyle:
So it hasn't hindered you, that particular health condition, in the world of work?

Marcus Morgan Valentine:
[inaudible 00:06:42] employer, I just said, "Look, I've got this thing. We call it back home dropsy. I might fall asleep. But I'll do what I can to make sure that it doesn't happen." And I always chose the sort of workplaces i worked in to make sure that they were disability-conscious and confident as well, as much as I could. So I'd generally work for councils and charities and those sorts of things. And I also did jobs where I was sitting down most of the time. Or if I was teaching, it meant I was standing up and active. So if I needed to sit down, it would just be a natural process of that.

Marcus Morgan Valentine:
And when I first found out about the narcolepsy, as in knowing what the diagnosis was, the manager I had, she was out of this world. And I even [inaudible 00:07:18] about two or three months ago, just to say thank you for what she did in 2010 for me. Because she worked with me, and she really made reasonable adjustments. And even me having little 15-minute naps and just extending my hours of work, it was incredible. Incredible.

Chantal Boyle:
Just goes to show, doesn't it, what can be achieved, that you can still be in the world of work, if your employers are open to listening.

Marcus Morgan Valentine:
Often people look at things, they always speak about things being equal. And I always say to people, being equal is not fair for me because I'm not equal. I'm always working on the backdrop of things. But if we look at equity instead and think about in that sort of terms, they will do things equally but with an equity basis to it, we can make things work.

Marcus Morgan Valentine:
Unfortunately, other places I've worked, that's not been the case, and it's been a awful experience. And my health has exacerbated and got worse because of that. I also have something called osteomalacia. And osteomalacia simply means that my bones, because I've also got [inaudible 00:08:15] extreme low vitamin D. So most people's level of vitamin D is about 80 units. Mine's only 19, so only a quarter of the amount. And that means that my bones can break, bend, or snap, at any time. And it means I'm consistently experiencing pain every day of the moment, literally, all the time.

Chantal Boyle:
Do you get a feeling like arthritis with that as well?

Marcus Morgan Valentine:
It's a bit like that. But if you think about it this way, the way I describe it is, in the morning, when I wake up, and most of the time, my hands are asleep and so are my feet, so I can't feel them at all for about an hour or so. So I do exercise to help myself with that. Wear special gloves and all sorts of stuff. In addition to that, what it means is I have lots of pain. And that's all throughout my body, from my neck going right down to my toes. So I do lots of pain methodologies as in exercise and all sorts of different things. It just really varies. It's not easy. 

Marcus Morgan Valentine:
And my kind of process in the morning is tough. So everyone else, if they was waking up an hour before, I have to wake up two and a half hours before so I can just get into the process of things.

Chantal Boyle:
Yeah. That chronic pain day in, day out, must have such a grind on your mental health, I would imagine, as well.

Marcus Morgan Valentine:
Goodness gracious. If it was not for my family and my friends, I don't know where I'd be. That's the truth. So my mother, my father, my siblings, my friends, they all know what my different issues are [inaudible 00:09:39]. But without that sort of support, I wouldn't be able to be here. And also the support from other charities as well. Narcolepsy UK has been sterling in helping me, absolutely sterling. I have to talk about them because they're an amazing charity. And they've actually asked now for me to come and volunteer with them too.

Chantal Boyle:
So how have they helped you? What kind of things have you reached out to, is it Narcolepsy UK, isn't it?

Marcus Morgan Valentine:
That's correct. Yeah. So what I did is I spoke to them first around some issues I was having at my workplace. And the feeling of them not understanding narcolepsy, to help me to have more of a narrative around the whole issue, and to help me to be able to speak up and be able to speak out and help my workplace to better understand what I was going through.

Marcus Morgan Valentine:
Addition to that, with the PIP as well, the personal independence payment, it's really funny, I helped everybody else fill out their forms. I've been doing it for years. I didn't fill out one for myself. And one of my friends really challenged me and said, "With all you've got, you must get this stuff. Come on, Marcus." And so they helped me with that. Because helping everybody else is easy for me. But when it comes to [inaudible 00:10:36] for myself, it was harder. So they helped me to unpick that and look at that and understand it and then make my application, which I now get PIP now. So it's really helpful. I don't always have to take buses. I mainly take cabs because I can't manage it.

Chantal Boyle:
If you're in London, I'm assuming there's a similar scheme in other locations of the U.K., but you get a freedom pass. Is that right? So you can travel-

Marcus Morgan Valentine:
Freedom pass and access to work as well. You get an access to work referral. I mean, it depends on what it is your needs are, whether they're mobility led or whatever the case may be. It varies for different people. Because of my narcolepsy, cataplexy, and various other things, IBS, it goes on, and also dyslexia, access to work helped, and my workplace, to be able to look at what different things was needed. They made an assessment of me. And then after that, they was able to provide different tools that could help me to either do my job better, and that I could be at the same standpoint as everybody else. [inaudible 00:11:26] equity rather than just equality. And that was really good.

Marcus Morgan Valentine:
So they got me things like Dragon Speakeasy, which is an amazing tool for someone that's dyslexic like myself. So for me, if it's on white background and it's black writing, it looks like the text is jumping up and down. It's awful. Awful. But what that does, it helps me to put almost like ... We used to use a plastic acetate before. And now it's sort of I can just put this [inaudible 00:11:50] over the screen, and I can read it. Or it can look at different parts for me and highlight it for me and do various different things. It's just beautiful.

Marcus Morgan Valentine:
The other one is Read&Write. So what it does, that will actually scan different parts of the text and read it back to me. Or what I conversation an do is I can actually have a dictaphone and it goes into the system. Say it into the dictaphone, and then it would help type part of that out for me. I mean, it's just an incredible tool. It really is. And it puts me on the same level standpoint as everybody else, which is amazing. 

Chantal Boyle:
I've heard applying for PIP is really challenging.

Marcus Morgan Valentine:
It was awful. I did my first application in January, and it took me three applications after, because I couldn't finish them. I was broken and really upset and hurt. Because what it does, it makes you have to go back to where you were before thinking about any support you had and all of those sorts of things. And just going through the journey, you need some psychological support around that. And I don't think they necessarily understand what it's like for someone like myself having to walk through that. For them, you're just telling your story. No, but I'm experiencing the pain too and the trauma and the hurt while I'm experiencing that. And it was tough. 

Marcus Morgan Valentine:
And I'd forgot the application. I'd put in another one. [inaudible 00:12:59]. Didn't even finish that one. I couldn't. And the thing is, it's got to be handwritten. You can't do it online. It's awful.

Chantal Boyle:
If you have a disability, [crosstalk 00:13:07] that might be, accessing these forms and completing them is a challenge step too far for many, many people. So where does that leave them?

Marcus Morgan Valentine:
Well, they said that there's millions of pounds that has been underspent because are not coming forward. It's not that people don't want to come forward. The process of the forms is awful. [inaudible 00:13:27] and she's amazing. She's a mental health nurse and has been practicing over 20 years. And she really had an understanding of the language that I would use. Because sometimes when I was speaking to other professionals, they couldn't quite understand what I was saying when I was explaining what I was experiencing. And they couldn't understand when different things were happening at different times, and why if they called me at 12 I might be asleep. [inaudible 00:13:50]. I'm sleeping because I have a disability. But she really was understanding about that and gave me the fluidity to make those appointments, and also was flexible in that process. Hence why I chose her and went private, because I had to.

Chantal Boyle:
You are listening to the Sunflower Conversations with Chantal. To share your story and find out more information, details are in the show notes. 

Chantal Boyle:
Just goes to show the difference that that can make for an individual. It's a shame it's not available to everybody, isn't it, who needs it.

Marcus Morgan Valentine:
Changed my life. [crosstalk 00:14:19]-

Chantal Boyle:
Yeah. Can you take medication for narcolepsy?

Marcus Morgan Valentine:
Oh, you certainly can. There's various different ones. I take modafinil. I now take the absolute highest dose, which is 400 milligrams a day. So right now, I feel very alert and awake, but I have to do lots of different things to make that happen. And I think what people don't understand with someone like myself with hidden disabilities, you just present and see me, and I look well, and everything looks fine, and I sound well. But what you don't know is I've got [inaudible 00:14:45] socks on. I've had a special cream I've put on my legs and my hands. I've taken medication as well. My family have prepped me for the whole morning and last night too. See, all these different things you have to do and these hurdles so that they can present some kind of normality. But that doesn't change my need. Hence why this wonderful thing has been one of the other best tools that's really helped me.

Chantal Boyle:
So Marcus is showing us his hidden disability sunflower card. And what does it say on the front of your one?

Marcus Morgan Valentine:
So my one simply says that I'm face covering exempt. And then on the back of that, it just gives information about the fact that I've got a hidden disability, and it makes me exempt from wearing a face covering. But I've also got the 'keep your distance' lanyard as well.

Chantal Boyle:
[crosstalk 00:15:29].

Marcus Morgan Valentine:
Yeah. So I can't wear a face mask. If I do, I'll probably collapse or fall asleep, and god knows what will happen.

Chantal Boyle:
And you're currently working in a school right now?

Marcus Morgan Valentine:
I'm currently doing a teaching role. And that actually contract is finishing soon. I'm currently doing a teaching role, at the moment, working with primary and second school with young people that have got emergent mental health. So working with the young people, working with parents, working with the teachers themself, and also [inaudible 00:15:55], to make real changes for those young people that have got those emergent mental health, and also difficulties as well like myself and others, to help them to be able to win at education and to have the best footing. Because when we give them that sort of support, you generally find that they don't later on have much bigger mental health issues. You've given them support earlier. So that's the aim of the workings that we are presently doing.

Marcus Morgan Valentine:
Often, we kind of box in different needs and disabilities and expect people to fit in that. When someone like myself, I fit into nine different boxes, and it depends on what's working at what time.

Chantal Boyle:
So a word I learned recently is comorbidities.

Marcus Morgan Valentine:
That's right.

Chantal Boyle:
Is that how you would describe it?

Marcus Morgan Valentine:
Absolutely. But I also say to people, if we look at disabilities on an intersectional perspective, as in what happens in my intersection, and you support me at my intersection, then it helps me. Rather than just support me in my disability.

Chantal Boyle:
For our podcast listeners, I'm just going to describe ourselves. I should've pushed on it at the beginning. I am a female with brown curly hair, with glasses. And I have brown skin. And Marcus is a Black man with lovely long dreadlocks and a nice flat cap on. So Marcus, may I ask you whether you think having a disability, combined with the fact that you are a Black man, makes life harder? And if so, do you have any experiences to share?

Marcus Morgan Valentine:
I've got loads of experience. I experience racism and prejudice every single day of my life. Even to go to the new offices where we were repositioned, the security guards would let everybody else through and stop me to double check my pass. Just simple things as that. This is so weird. Even when I go into the ... What's it called? Goodness. When going to the lift, for example, people look at me and wonder, "Why are you here?" And that's because I'm a tall ... I'm 6'4". I'm a big, built guy. I'm quite, what would I say, well put together [inaudible 00:17:50] I dress. But I've got locks as well and dark skin. And people have a perception of that. So I already have those physical visible, if you like, issues to deal with as a Black man. That's the visible things. Then I've got these other hidden things to deal with that you can't see, and they don't present themselves unless I'm put in a particular environment. So I'm consistently seen as somebody that's a problem.

Chantal Boyle:
Yeah. I mean, and that's before you've even opened your mouth.

Marcus Morgan Valentine:
I mean, I'll give a quick example. I went to a school before. I never forget this. I went to a school. I went to reception. And I was supposed to be seeing the head teacher because we had a meeting. And it was to discuss what was going to happen around the next couple of days' training that I was going to be doing. 

Marcus Morgan Valentine:
And when I went to reception and I presented my name and everything, and the lady saw me, and she said, "Oh, okay. Just take a seat, sir." She didn't even wait for any information. "Sign in. Take a seat." She didn't even bother to look at the paper. So I sat there. I said, "I'm coming to see the head teacher." 15 minutes, 20 minutes, half an hour. I said, "There must be something wrong." So I went back to reception again, and while I did that, the head teacher just came into reception and said, "Oh, Marcus, you're here." I said, "Yeah, I've been here for the last half an hour." And the reception woman turned around and said, "Oh, you're Marcus. I thought you'd be," and then she put her hand over her mouth again. I said, "White."

Chantal Boyle:
Working in schools, you're London-based, so working in schools in London [crosstalk 00:19:05] very diverse in London. Do you find being in a school environment that's good for the kids to see a really strong Black role model-

Marcus Morgan Valentine:
Definitely.

Chantal Boyle:
... doing a great job, lots of life experience?

Marcus Morgan Valentine:
Yes.

Chantal Boyle:
That's positive for them, isn't it?

Marcus Morgan Valentine:
It's more than positive. Some of the things they actually come up and say is they actually say, "I want to be like you." I said, "Don't be like me. Be the best you that you can be." They're like, "That's why we like you, sir. You're so cool." And what it is, I'm able to really connect with them, not just because the way I am and my experiences, but it's because of my disabilities as well, because I constantly have to go over hurdles. Often, people don't understand the individual hurdles that those in the room are having to deal with. 

Marcus Morgan Valentine:
And something else I can never forget, and I always talk about her. I'll use an example. She's dyslexic, and she can only write on a very particular paper. It's gray paper with white lines. It's got to be specifically bought. [inaudible 00:19:57]. And she got to year eight now, in secondary school, and nobody had bothered to look at her file to see that's what she needed, and wondered why she'd been quite delinquent and behaving as she was. [inaudible 00:20:10]. By the next week, thankfully, I was able to get the paper. And she just looked at me and the paper, then held it in her hand, and burst into tears and said, "I can actually win for once." And I just broke. I thought, "My goodness."

Chantal Boyle:
When you get to year eight, you are about 13 years old.

Marcus Morgan Valentine:
Yes.

Chantal Boyle:
13 years old. And nobody had listened to that child to make that simple change.

Chantal Boyle:
You are listening to the Sunflower Conversations with Chantal. To share your story, details are in the show notes.

Chantal Boyle:
You're wearing 'please give me space' and the card. So can I ask why you decided to get them, and second question, which I can repeat if you forget it, is, what situation do you choose to wear them in?

Marcus Morgan Valentine:
You remembered. Thank you. Already I was getting nervous when you said second question. I was like, "Oh, god, I don't remember." Okay. The reason why I bought this is because I realize that I am a tall, big, Black man. And I realized that, when lockdown happened, this is when I first started it, and one day I'm wearing a mask, and I tried it twice. And when I tried it twice, I collapsed on the floor in the train. Now, I don't want anyone to know, so I never told anybody. I kept it to myself. So my family are probably going to hear now and think, "Why didn't you tell us?" But I didn't. I collapsed on the train twice. And the second time I collapsed was when the doors were open, and they shut on me. So I said, "I've got to do something."

Marcus Morgan Valentine:
So I did some my research. My friend said, "Oh, Marcus, you need to get the hidden disabilities," [inaudible 00:21:39]. I said, "I know about that." "But no, [inaudible 00:21:42]. It will help you. You need it. I've got one. It's been great." [inaudible 00:21:46] mental health, and it really helped her.

Marcus Morgan Valentine:
So I contacted hidden disabilities, found all the different ... You've got loads of stuff there. It's amazing. I love it. And there's more things I want to get as well like some of those cards that say, "I'm narcoleptic. I've got cataplexy. And if this happens," [inaudible 00:21:59]. I mean, it's just amazing having these tools that stopped the issue and aids my conversation, and also aids my voice.

Marcus Morgan Valentine:
and the other thing that was important to me, because I don't have a mask, I want you to be distanced from me because I don't have the additional protection that you have. So that's why I chose this lanyard rather than the flower.

Chantal Boyle:
So you've got the 'please give me space' lanyard attached to the hidden disability sunflower card.

Marcus Morgan Valentine:
I don't leave anywhere without this, literally. This has been the biggest voice I've had through the course of my disabilities ever. That's why I said I want to be an ambassador. I want to be a voice and an advocate for other people. Because I've seen what's happened to me. It's been awful. I keep saying, and I'm going to say it not because we're doing this interview, because I mean it. Thank you for this. I can't explain to you the trouble, and even going to schools and places, [inaudible 00:22:48]. "Oh, oh, okay. No problem." [inaudible 00:22:53].

Chantal Boyle:
How do you feel when you wear it?

Marcus Morgan Valentine:
I feel empowered. I feel strong. I don't feel like I'm going to get hurt. Sounds tough, but it's the truth. Unfortunately, people like myself with disabilities, we often are abused and all sorts of stuff, whether physically or any other way. Also, it just means that my voice is echoed without me necessarily having to say it either.

Chantal Boyle:
So would you recommend wearing the sunflower [crosstalk 00:23:17]-

Marcus Morgan Valentine:
Oh my goodness, darling. I'll make a song about it, whatever you need.

Chantal Boyle:
Yes, please.

Marcus Morgan Valentine:
[crosstalk 00:23:21]. I'm serious. I'm not joking. I've already started writing some lyrics. That's part of what I'm doing in September. And I call it My Open Door. That's what it's called. And I really want to do this, simply because I need people to understand the importance of this. I don't know where I would've been and what I would've done without it. Because most people make so much assumptions about you just because what you have is hidden. Just because it's not something they can see doesn't mean it's not there. And I needed to make the invisible visible. And this is what this did for me. It really helped me. And also gave me a way of talking to employers to say, "Are you looking at their charts? Are you [inaudible 00:23:54] to what the hidden disabilities is doing across the country? What are you doing?" And also outside of this country, because it's not just here in the U.K., it's happening all over, which is amazing. 

Chantal Boyle:
I was going to ask you, do you think the sunflower's needed in society. But I'm guessing [crosstalk 00:24:09] is yes.

Marcus Morgan Valentine:
My goodness. Don't make me scream. Yes, yes, yes. If we don't get the voice out there, then people, they're going to stay in home. If I didn't have this, I wouldn't have left my house. Because the abuse and stuff was horrific.

Chantal Boyle:
So I know that you want to be an advocate for hidden disabilities. What have you got in your mind?

Marcus Morgan Valentine:
I'm actually writing a poetry book at the moment. I'm doing that at the moment around hidden disabilities and what it's been like for me. To present a different voice towards that. And also the other things I'm doing, I told you about the singing. But apart from that, I actually run teaching sessions and training sessions and go to events and speak at events for people. And it was great being able to empower those members of staff and those leaders and those strategic leaders as well and directors, to help them hear my voice, to help other voices be alarmed and really echoed out throughout everywhere so they could hear.

Chantal Boyle:
That must be so empowering for you to see that you are able to change people's perceptions and drive forward change within maybe organizations that may not have considered that before.

Marcus Morgan Valentine:
Yeah. And I think the other thing is if you don't have them, you can't really understand it. I had them before, but I didn't have the narrative or the understanding around the language I do now to look at comparisons of what it's like, and the effects, and all those sort of things. It took me a long time to be able to give my family the understanding of what I experience every day. I mean, my family couldn't understand that they've knocked me. Why do they have to knock my several more times for me to get up or get out of the bed. That sort of thing. But being able to help other people, even in workplaces. Why is it your colleague was not able to get to work on time? Or why [inaudible 00:25:48] and they're saying they're feeling unwell? Or why do they need to have three heaters rather than just one? All these small changes, often, can really make people like myself be able to just be at an even platform with other people and be able to do our job roles and everything else well. But not just the actual employees but also the people we work with, those customers, and those people, those clients, being able to support them too. Why are they DNA-ing? Is it just what we think it is, or is there other things at play?

Chantal Boyle:
And when you say DNA, it's when you don't arrive for your appointment [crosstalk 00:26:19]-

Marcus Morgan Valentine:
Absolutely. 

Chantal Boyle:
How can people contact you about your cause and the different sessions that you do?

Marcus Morgan Valentine:
Well, I always say to people, and I'm a bit of a funny person, I don't like you to call me because I like to have more of a different kind of conversation. So I usually say to people instead, just email me or follow me on Instagram. Just look at Total Blessings UK on Instagram. Or look at TotalBlessings@Hotmail.com. That's my email. And just send me an email, and let's have a conversation.

Chantal Boyle:
You know, it's by doing this and these recording your personal story that we can help to kind of inform others who haven't had the opportunity to understand what it might be like to have comorbidities, one disability, or several disabilities. And I think also today the fact that we're talking about race I think has been critically important, something that everyone needs to stand up and listen to, have a little chat with themselves and think, "Oh gosh, did I have an unconscious bias there? I wasn't even aware of it." So I think this has been absolutely brilliant. I just want to say thank you.

Marcus Morgan Valentine:
[crosstalk 00:27:33].

Chantal Boyle:
Yeah. And I just want to say, if anybody listening has any of the symptoms that Marcus has discussed today, please contact your GP.