Epilepsy and aphasia with Tom Ryan

Chantal Boyle:

Hello, I'm Chantal. And joining me today is Tom Ryan-Elliott. Thank you for coming along to join me today. Tom, do you want to tell us a little bit about yourself?

Tom Ryan-Elliott:

Hi Chantal. I'm Tom Ryan-Elliott, and it's great to meet you. I'm 30 years old and it's quite scary I'm about to reach 31. So, I'm getting quite old I'm afraid.

Chantal Boyle:

Some people would say that 31 is still quite young, Tom. Depending on who you're talking to.

Tom Ryan-Elliott:

Yeah.

Chantal Boyle:

And what are your interests Tom? What do you enjoy doing?

Tom Ryan-Elliott:

Well, actually over the last, I'd say five years, I've been studying photography. So, that's my main passion. So while I'm talking to you now, if I wasn't, I'd be out and about exploring around London and taking pictures and videos all around. So yes, as soon as we end, I'll be out and about. The only time I'm usually home is editing.

Chantal Boyle:

That's a really nice way to spend your time. I know that with the pandemic, lots of people, including myself, you couldn't do anything apart from have your daily walk and exercise, where sort of reconnecting with nature and looking at things that they hadn't seen before and snapping them on their phones and sharing them on their Instagram. And there's a thing isn't there? You can look at the same thing several times and each time you look at it, it will present something different?

Tom Ryan-Elliott:

Yes. When we were stuck at home, it was quite hard because I'd never done it beforehand, taking pictures inside. And it's surprising how much you can get in your own, even bedroom. And I guess it's what some photographers do. Even with a cup of coffee or something like that, how many great pictures you can get.

Chantal Boyle:

What are your health conditions, Tom? And how long have you had them?

Tom Ryan-Elliott:

So in terms of my health conditions, I started all the way back in 2014, I went out on a... It sounds fun. A trip out to San Francisco with some of my good friends and that was fantastic. But then after then, that's where I really do not remember a thing because apparently, we flew over to Las Vegas. But as I said, I do not remember anything. I've seen pictures of us in Las Vegas, but apparently I fell down 51 steps on said stairs and cracked a large section of my skull, which caused me to have a cranioplasty, which is a large section of my skull on the front left-hand side. And I spent four months in hospital in Las Vegas, and my parents were flown over out to Las Vegas with the fear that I was going to die. Luckily, I was flown back and then essentially visited almost all hospitals in London. I've written down a list of all the hospitals, and I think it is my aim to meet them all.

Chantal Boyle:

That is a horrific story. If you don't mind me saying. You've gone out there with friends, having a great time and then something like that... Was it just a slip? Did you just slip or trip? Did you find out what caused the accident to happen?

Tom Ryan-Elliott:

Apparently there was a video but as I said obviously, I never want to see it because I don't remember. If I see it, it would make it even worse.

Chantal Boyle:

Yeah.

Tom Ryan-Elliott:

There probably is an option to see it, but I don't even want see it because I think it would make even worse. So I do not want to see it.

Chantal Boyle:

I can understand that. So you were in a coma, right?

Tom Ryan-Elliott:

Yes. So I was in a coma, I think, four months. And then the first thing I remember, I was flown back and the first hospital that I came back to was in London, it was Charing Cross. And I was there for a couple of months. And obviously, half of my skull was removed. Apparently, my parents told me I did wake up then and I could speak a little bit. But as I said, I do not remember. The first thing I remember was when I was taken over to Kingston Hospital and I remember talking. From the brain injury, I've also both epilepsy and aphasia.

Chantal Boyle:

Can you tell me a bit about your epilepsy and aphasia? How do they affect you?

Tom Ryan-Elliott:

Well, to be honest, both of them when I was in hospital, I didn't know anything because doctors and the nurses handled it all. And they gave me the medications that I needed and you're fully controlled within the hospital. Essentially, you can't move, you don't really do anything, you're in bed most of the time. Then as soon as I left the hospital, the first thing I remember was I went out with my sister and her boyfriend, fancy place. We went to Wagamama.

Chantal Boyle:

Yeah? Classic.

Tom Ryan-Elliott:

Near Waterloo. And all of a sudden it was known as a simple focal seizure and that's essentially where, in terms of seizures, that's where you just cannot talk. It's not a tonic-clonic seizure, where you fall on the floor and twitch and can't move or nothing, it's just simply where you can't talk. And everyone was worried. And because it was my first ever seizure, the ambulance had to be called.

Chantal Boyle:

Can I ask, are you conscious the whole time? Is it like you're locked in? So, you know what you want to do, but it's just not happening? Or do you forget what has happened?

Tom Ryan-Elliott:

With a simple focal seizure, you know what you want to say, you just can't get it out. You can see everything around you, you can see people looking at you, you can see they're worried. You just want to reply to them and say, either it's fine, or don't worry. You just can't open your mouth and say it. Which is worse because it makes you frustrated.

Chantal Boyle:

If you are feeling stressed in that situation and that you can see people are looking at you and they're really worried and you can't let them know that you're okay and you will be okay. Does that intensify it? Does it make it last for longer or does it not work like that?

Tom Ryan-Elliott:

Some of the doctors said it's the best to just try and stay as calm as you can. And even some of them say that it's best when that happens, if you're at home, sit down, even lie in bed as if you're going to go asleep. Because, if you do get stressed, it could lead up to what's known as a tonic-clonic, which is where you can... I don't how to say it apart from pass out almost. And that's where you personally do not have a clue what's going on.

Chantal Boyle:

You are listening to the Sunflower conversations with Chantal. To learn more about the Sunflower, visit our website. Details are in the show notes. Did you mention that you have aphasia as well?

Tom Ryan-Elliott:

Yes. Aphasia is what you might be able to you personally seeing and anyone else hearing me, will be able to notice because that's where my speech and language, isn't what it should be. Because in my head, I know exactly what I want to say, but I just can't get it out exactly how I want to say it and exactly that I can't get it out professionally. Yeah, exactly that way. Again, it's frustrating. Aphasia also affects my reading and writing.

Chantal Boyle:

What effect does it has?

Tom Ryan-Elliott:

I can read just sentences. But if it's a long book or something like that, I read the first few lines and then almost it's like, "Oh, I can't be bothered to go on further." Which makes me seem like I'm really lazy. But that's why I use tools such as... There's loads of different tools, such as Grammarly, I use a lot. And when I'm writing, I use that to double check my writing, because if I write things pretty quickly, when I'm reading it, it seems like they're fine. But when other people see them, they will notice that I've missed words. So I always slow myself down and ensure that I double check what I've written before I send it to people.

Chantal Boyle:

That's like a web based tool?

Tom Ryan-Elliott:

Yeah. There's multiple different tools. There's Grammarly, Google Translate. Sometimes for the news, I read a website called unitedresponse.org.uk, which makes news a lot shorter. Rather than a whole page of news, it makes it a small paragraph.

Chantal Boyle:

That's really useful, actually, isn't it? You can end up not knowing what's going on if it's too overwhelming, overpowering, difficult to digest and understand. So it's making news accessible for everyone. So with regards to your epilepsy, the first time you experienced it was when you went out with your sister? And aphasia, did that happen straight away or again, was that something that you realized after a little bit of time?

Tom Ryan-Elliott:

It started straight away, but personally, I just thought everything was fine. I met friends, I met my parents and I thought my speech was fine. Unfortunately, it isn't the case. If, for example, you broke your leg and you were in hospital, as soon as I expect as you step out, you're fine. It doesn't seem to be the case with brain injuries. Which is frustrating, it goes on for life. I'd say it's taken me about six years now and I'm slowly getting to a stage where I can actually have a discussion with someone. Whereas about three years ago, I wouldn't be able to do this at all.

Chantal Boyle:

It's remarkable then and basically you've had to rehabilitate yourself. And do you take medication for your condition Tom?

Tom Ryan-Elliott:

Yeah, not for aphasia, but for epilepsy, I do.

Chantal Boyle:

Do you get side effects from the drugs?

Tom Ryan-Elliott:

Very much so. There are things like... Even obviously with having aphasia, the different medications do affect your speech and they can make you sleepy. But it's something I think personally, you don't notice because you're taking the medication, it's a personal thing. It's other people that you're talking to notice that you seem very different.

Chantal Boyle:

What's a typical day like for you in regards to your health?

Tom Ryan-Elliott:

I'd say at the moment, due to aphasia, it's quite lonely because the speech and language disability, speaking to other people is quite difficult. Online is very easy because I have the time to prepare before replying to other people. But if people speak quite quickly, it's very hard to reply. And that's why I'm enjoying my photography because it's something I can do personally. I would like to get more involved in other groups. And that's why hopefully, when we can get out and about more, I joined teams like Meetup and other groups like that. Because even if it is just an evening, I can go out and go out with other photographers.

Chantal Boyle:

I've worked with people that have a stutter. And I think if you don't have a stutter, sometimes when people are talking to you and they have one, there can be the impulse to try and finish that person's sentence for them. How does that feel? Do people do that to you? And how does it make you feel?

Tom Ryan-Elliott:

It is frustrating because it's just in your head. I'm not an idiot. I know exactly what I want to say and what you're implying or trying to respond to me just sounds like such a simple thing. I enjoy going to a group called Aphasia Re-Connect, because then at least you're seeing other people who have aphasia because, at least they have almost the same condition that you do. So you can take the same amount of time, which is great because... But at the end of the day, I don't want to be stuck with other people who have aphasia, because that just almost ties me down and I'm never going to get out of that position. I'm never going to move higher than where I am at the moment. If I just stay there, I'm stuck. You're never going to get a job if I'm stuck in Aphasia Re-Connect. I'm never going to find a job if I'm stuck in that position.

Chantal Boyle:

Can we just talk a little bit about what your life was like pre-trauma. So you had a job, was sales job where you've got to be on the ball, reacting to things quickly, every minute. So you're lost kind of-

Tom Ryan-Elliott:

Yeah, I guess one of the things I did use to do, but obviously with epilepsy, I can't which is a bit of a shame because I did love driving. With epilepsy, you can't drive, which is frustrating. But I guess the benefit of epilepsy is you do get a Freedom Pass, which as I live in London, I can travel everywhere. So if anyone else who is listening and also have epilepsy and loves photography, you can travel around everywhere for free. So it's amazing. If I want to take a picture, even though I live in West London, but want to take pictures out in East London, I can travel over there for free. It's amazing.

Chantal Boyle:

Having the Freedom Pass, you've got your independence haven't you?

Tom Ryan-Elliott:

When I first started and came out of St George’s, which was one of my last hospitals, I didn't know we have Freedom Pass.

Chantal Boyle:

It's good and it means you can get out and do the things that you enjoy. And how about relationships? Have they been affected? I think you said that initially, the people around you who love and care for you were able to recognize the aphasia, but you hadn't seen it. So I'm feeling like there was a nurturing environment happening.

Tom Ryan-Elliott:

When I first started, because I didn't know what it was, the family had to almost fake my responses and just nod that I was saying the right thing back to them because, I was just apparently making no sense. You make all your friends at work, so I've lost all of those. And just being stuck at home, you lose all your friends. So that is one of the downsides of having a disability, you lose all your friends. So yeah, I suppose that is something that does suck with having a disability. One of the benefits of having a disability is the fact you can go back into college and you can get the benefits of going back into college for free. I decided to go back into college and study photography.

Chantal Boyle:

You are listening to the sunflower conversations with Chantal. To share your story, details are in the show notes. What is harder to live with? Aphasia or epilepsy?

Tom Ryan-Elliott:

I'd say aphasia because my speaking, reading and writing is not as good as I would like it to be. I'm still glad that it is okay, because we're still having this discussion. A lot of people who have aphasia can't even talk. But it is still not at the level where I want to be, where companies actually accept me and want me to be at work.

Chantal Boyle:

Do you wear the Sunflower? What do you wear and why do you wear it?

Tom Ryan-Elliott:

It depends. I either wear it around my neck or I wear it from my pocket. If it's really busy, I'll wear it around my neck to make sure I'm going to have a seat if I think I'm going to have a seizure. Because I find if you have epilepsy, if you don't wear it, people just will either not let you have a seat, or if you do have a seat, people straight away, if for example, if someone was older or someone has... How would I say? If someone has a walking stick, but other than that, they're fine. Simply have a walking stick, straightaway, people are rude. They will simply say, "Get out." And I think if you have that around your neck, people straightaway would be like, they won't say anything, they'll see that you have a disability. If you don't have it, they are rude.

Chantal Boyle:

How premise is the sunflower risk? If you see somebody wearing it, be kind, it's not difficult. Be kind, be understanding, be patient, show a little bit of care. So, for what you've told me, I feel that you get that when you're wearing it.

Tom Ryan-Elliott:

Yes. Because people are very rude. So it is best if you have a disability and need to have a seat, then definitely do wear it.

Chantal Boyle:

Would you recommend the Sunflower to other people?

Tom Ryan-Elliott:

Yeah, very much so. If you're at the till and you're taking time, people behind you are so rude and they'll be like, "Hurry up, hurry up." And if you wear it around your neck, they'll realize you're taking some time because you have a disability.

Chantal Boyle:

Do you think the Sunflower is needed in society?

Tom Ryan-Elliott:

Yes, very much so.

Chantal Boyle:

Looking into the future, you're a keen photographer, what's your hopes for the future? And you mentioned something to me when we were talking before about volunteering?

Tom Ryan-Elliott:

Yes. So at the moment, I'm volunteering for the transport for London Museum. I also help in RNIB as well.

Chantal Boyle:

What do you do with the RNIB?

Tom Ryan-Elliott:

I help simply on their desk. Because, my granddad is leading towards being blind so, I wanted to study a bit more towards that just to help him.

Chantal Boyle:

We've spoken quite a bit about your desire to be employed. With your experience of life pre-injury, working busy work-life, et cetera, and your situation now, do you see ways in which employers can adapt to help people such as yourself?

Tom Ryan-Elliott:

Yes. So I'm hoping so that in the future, more companies will start to understand this. As I said previously, that more companies, well obviously, being the valuable 500 are starting to learn more about it. That they'll adapt to start with disability and just take the time to understand. And as I mentioned earlier, that there's lots of software to help their staff adapt to what's needed. With myself, speech and language, reading and lighting, I've got it all. But rather than staying till it's solved, get it done in 15 minutes or something like that.

Tom Ryan-Elliott:

If you give me the task, I will get it done. And almost a hundred percent, I will get it done better because I use all this software to ensure it's right. Because I double check back, do everything because I know if I do it quickly, I will get it wrong. That's why I check everything I do to make sure it's right. So I think these companies needs to look back and just not straight away saying, "Oh, someone who has a disability should not be hired."

Chantal Boyle:

Do you have any advice for anyone that has received a brain trauma resulting in epilepsy or aphasia?

Tom Ryan-Elliott:

There are many different options that can help you, should you need it. And I would highly recommend you to be using them if needed. For those of you who've had a brain injury, Headway is a great organization that has many different local groups across the whole country. Headway as an organization helps you do things, actually very simple things that when you first start at the hospital, you never really think about. Things such as... As I mentioned beforehand, Freedom Pass. Actually if you're always taking the train, Disabled Persons Railcard, also Aphasia Re-Connect, if you have aphasia. It's a great group to meet other people with aphasia, just to ensure you meet other people with aphasia and learn what is possible, such as reading, writing, and other things such as that. To make sure we keep practicing rather than just letting it go. And as I said beforehand, no matter what, never give up.

Chantal Boyle:

Tom, you are an inspiring individual. And I'm so glad that you had decided to share your story with our listeners. You have never given up, you are fully focused on returning to work and starting with your volunteering. If you feel that you have any of the health conditions discussed in today's podcast, please contact your GP. Any of the support charities that Tom spoke about in today's podcast, Sunflower story video will be in the show notes.