The Empowerment Awards and Multiple Sclerosis with Elisha Samuels 

Speaker Key:

CB       Chantal Boyle

ES        Elisha Samuels

00:00:20

CB       

I’m Chantal, and I am joined on the Sunflower Conversations today with Elisha Samuels. Hi, Elisha. 

ES        

Hi. 

CB       

Giving a little wave here. So Elisha has just won Disability Personality of the Year at the Empowerment Awards, which was run by the charity called Talks with M.S. So we're just going to have a little conversation about Elisha and how she became nominated for this award and what it means to her. But first of all, we're just going to give a visual description of what we look like. So I am a brown-skinned female. I've got long curly hair, shaved on one side, and I'm wearing clear-framed glasses, and I have got pink lipstick on. Elisha?

ES        

I am a black female with short bob braids, with the Sunflower lanyard on and a pinky-purple jumper. 

00:01:27

CB       

Thank you. So welcome to the podcast, Elisha. 

ES        

Thank you. 

CB       

So first of all, why were you nominated for Hidden Disability of the Year? 

ES        

I believe due to the fact that I had a bit of a rough year last year. And friends, family, people on social media who messaged me like, hey, you've been very hidden, where have you been, kind of thing, and letting them know what I've been going through behind closed doors, and just the difficulty of stress, balancing it with my disability. 

So I believe my resilience of going through all of that, and I'm not keen on using the word resilience, but the resilience of going through all of that, I just think it was shining. And I have a lot of family who are very supportive, a lot, a large family who are very supportive. So they were just… Do you know what I mean? I believe this is why I was nominated also by Terry, and why then I won, was due to family, friends and people who have been keeping in contact with me via social media. 

CB       

And what does it mean to you to win the award? 

ES        

It means a lot, number one. It means a lot, because it was unexpected. Even though the votes were out and I knew people were voting, it was still unexpected. But it means everything. It means that I am seen. It means that I'm acknowledged. Do you know what I mean? It's the Empowerment Awards. It was empowering. 

Because I came home, I lay in my bed the next day, and I was just thinking, this is an amazing moment. This is an amazing thing that's happened. And it's just beautiful. I just think it's just so, so beautiful. That was beautiful.

00:03:32

CB       

And, yes, well, your reaction was beautiful when you won. I had the pleasure of awarding Elisha with her award, because it was sponsored by Hidden Disability Sunflower. And when Elisha approached me, she was visibly, physically shaking and in shock. And you were a little bit lost for words to start off with, weren't you? 

ES        

Yes, most definitely. But it all comes together, because it's a reminder, this is why you're here. And then just seeing everybody in the room, seeing everybody with different types of disabilities, and which were also hidden, you don’t know. Do you know what I mean? It was just, this is our moment to shine. We are here, and we are to be seen also. So the words just came eventually. They just came.

CB       

Yes, they did. And you mentioned resilience. So if you're comfortable to talk about, you have multiple sclerosis. 

ES        

Yes. 

CB       

And what type of multiple sclerosis do you have? 

ES        

Relapse-remitting multiple sclerosis. 

CB       

And can you share the symptoms, some of the symptoms that you experience? 

00:04:49

ES        

Yes. So all my symptoms seem to be from my throat upwards. So I have problems with swallowing, speech, my eyesight. Optic neuritis has caught me a few times. My heaviest relapse was in 2020, where it took out my eyesight for two months. Brain fog, memory problems. So that's where all the heavy symptoms lie. 

So now and then, my balance will also go, because if it's not functioning up here, everything starts to go left down there. So my balance will be off from time to time. But I attend the gym a lot to try and work on my balance, focus, slowing down, increasing certain things, just to try and help me out as much as possible. So yes, from my throat upwards, I would say. Fatigue. Oh my God, how did I forget fatigue? Fatigue has entered the conversation. 

CB       

Brain fog, that's why. 

ES        

Oh, it's just relentless. I will nap every single day, any time of the day, anywhere, any place. 

CB       

Really? 

ES        

Yes, any place, it doesn't matter, I will sleep. 

CB       

And when it comes over you, you just have to? 

ES        

Yes, just put my head down, and then I'm just literally like that. It can be anywhere from two minutes to 20 minutes to half an hour to a few hours. Do you know what I mean? Yes. It will also depend on how much I've done that day. 

CB       

Yes. So after the awards event, you had to spend the whole day in bed, didn't you, just resting and recovering from that. And that wasn't due to excessive partying or anything like that. It was just the physicality of being there. 

00:06:47

ES        

I was not drinking, nothing. It was just being there and interacting with everyone, talking, using up all that energy to the point, the next day, I was just still. I have to be still. I can't do too much because… Yes, I was just in bed. I felt like I had a hangover, but I had not been drinking or anything. I just needed to be still so I could rebuild back up the energy inside of me so I can get on with the rest of the day the next day, which would have been the Monday. 

And as I said to you, as I've said, the saving grace for me sometimes is I can spend the whole day in bed, knowing full well I'm not going to starve, because I prep all my meals, all my lunches and all my dinners throughout the week. So I always know I've got food. Do you know what I mean?

CB       

Yes, it sounds like you really manage your health very well, because you've mentioned that you do things to support your balance and your coordination and your health, and you’re strengthening your physical health as well as obviously the mental health side of it as well. Because I can't imagine what it must feel like to not be able to swallow, to start losing your vision, and to the point where you're completely visionless. So it’s a lot that you're dealing with. And you mentioned the word resilience as well.

ES        

Not my favourite word. Not my favourite word at all. I think it comes with, oh, you're so strong, you're resilient. And I just think, sometimes I'm not strong. Sometimes I'm not resilient. Sometimes I am. But sometimes I am strong, there in the woods. But sometimes I'm just not. I'm not. I'm not resilient. Do you know what I mean? I'm vulnerable on occasions. I am this on occasions. It's not always great. 

00:08:47

CB       

Yes. And, well, that's one of the things that we have to be very careful about with language and disability, that this person is so strong or this person is so brave. The reality is quite different, isn't it? 

ES        

Most definitely, 100%. 100%. Especially when your disability is invisible and you're trying to convey that to people or explain that, what's going on with you. I'm just tired. Oh, no, come on, just come or just do this or just… And I’m like, I’m spooned out. I’m spoonied out. Do you know what I mean? I don't have the energy for that. 

CB       

Yes. 

ES        

[Overtalking]. So there's a lot of pre-planning in my life. 

CB       

You are listening to The Sunflower Conversations with Chantal. To learn more about The Sunflower, visit our website. Details are in the show notes. 

So can you share some of the challenges that you have, that you face at work? 

ES        

Overall, my workplace is quite supportive of me and quite supportive of my disability and what I go through. I just think from time to time that there is a lack of knowledge, a lack of awareness for people who have invisible disabilities or disabilities in general, but in my case, invisible. 

00:10:19

Because it's not so visible, I think people find it quite hard or challenging to understand that there is something going on with her at the moment. And maybe it's not that she's unproductive or what, maybe it's the disability. How can we work with that? Do you know what I mean?   

So I've had a bit of a challenging year with work. But yet again, work is fantastic. But I just think from time to time, I think having everybody in the know of how disabilities work or don't work, do you know what I mean, I think it's  fundamental information that people need to have so they…

CB       

And you can only get that with that one-to-one conversation with each individual. Because I've spoken to a couple of Sunflower wearers now who have multiple sclerosis, and their symptoms aren't all the same. So it's really engaging on a level, isn't it, with your colleague… 

ES        

Yes. 

CB       

Or your employee to find out what would support them. 

ES        

Yes, no, 100%. But since my diagnosis, my employees have been fantastic. They have done everything to support me as much as possible. So number one, implementing working from home. Before COVID, before it was a thing, I was already working from home to assist me to be able to be in a job, stay in a job and be a part also.  So, yes. 

00:11:56 

CB       

And what do you think about the Hidden Disability Sunflower? You're wearing it. So it's the yellow Sunflower on a green lanyard, for anyone who hasn't seen what this looks like. You can also get them in pin badge form, wristbands, T-shirts. So it's really about looking out for the symbol, which is the yellow Sunflower on a green background. That's the crucial thing to look for. And then if you see somebody wearing it, then that person has a non-visible disability. So I'm going to let Elisha talk in her own words about what her thoughts and views are on that. 

ES        

I think the lanyard, which I have, I think it's discreet but loud. Discreet but loud. So I often see people wearing one. And if I'm walking or I'm rushing and I see somebody wearing one, take your time walking past this person. Or if I'm on the bus and they're standing up, take your time with this person, because it is showing that they do have a disability. 

More than likely, it's invisible. You don't know whether it's their hearing, their sensitivity to something. So take your time when you are around somebody who's wearing a lanyard like this. Do you know what I mean? It's discreet, but loud at the same time. 

This person, clearly, they have additional needs or need additional support. So be mindful when you are around them. You don't have to treat them like China of a sort, but just take your time. Be aware. Be aware of yourself. Be aware of your actions, do you know what I mean, and how your actions may impact the people around you. Do you know what I mean? So I feel like this is loud, but discreet at the same time. It speaks volumes.   

00:13:50

CB 

That's great. Thank you. And then finally, I know that Elisha is a little bit creative, and she does work with various charities. And she uses her written word to help raise awareness of multiple sclerosis. So Elisha has kindly agreed, at very short notice, to share a poem with us. So take it away, Elisha. 

ES        

Okay. So I wrote something when I was struggling at work. And this was called Burnout. And I was struggling with work and struggling with life. And it says, Hi, I'm Elisha and I am burnt out. Burnout is a form of exhaustion caused by constantly feeling swamped, said Dr Google. And I agree. For the past year, I have been acting like Superwoman and thinking I can do it all. No, I can't. And I write this today and I'm not ashamed of it. I've been up and down like a 90s yo-yo, because I felt that's what I needed to do to be normal. 

Earlier this year, I decided life for a second can kick rocks, just for a second. I am grateful for life and what I'm able to do. If I keep churning, there will be nothing left. So ask yourself, when was the last time that you stopped and just said no? This includes work, family and friends. When was the last time you solely just took care of yourself? 

I have taken a step back from work, and guess what I did? I slept. Yes, slept like Sleeping Beauty, and I waited for the sweet smell of spring to awake me, along with one antihistamine tablet. I referred myself to counselling as the conversations with myself were becoming a little bit too real. Yes, I’ve said it. I was banging my head against a wall of no return. Try it, and thank yourself later. If L’Oreal is worth it, why aren't you? 

00:16:03

My plumpy, curvy ass went back to the gym, releasing that tense and strained feeling. I don't even know what I'm doing sometimes, but it feels good, with the headphones on and to be blocking out everything that is not aligned with my equilibrium. Try it, wiggle your pinky toe if that's all you can do. 

Having MS is exhausting, working is exhausting and people are exhausting. Tip some H2O over that burnt out body and rebuild yourself. I don't even know if that makes sense, but you know what I mean. I no longer feel guilty for putting myself first, and neither should you. You can have all the support in the world, but it is you who experiences the symptoms and the damage which are being left. So with the greatest of respect, the world can wait, because I will be back, and you will be back. 

CB       

Bravo. That's lovely. That's really, really lovely. And I think that's a really great one that you’ve selected, because it really chimes in for why you were nominated for Hidden Disability Personality of the Year. That's a real insight into what you've been experiencing. And now, like you said, to be seen is what it's about. So well done and thanks for…

ES        

[Overtalking]. 

00:17:31

CB       

Yes. Thank you so much for just taking a little bit more time out to share your story with us, Elisha. And we would ask that people share this podcast episode to really help others get an insight to the lived experience of living with an invisible disability. 

ES        

Remember, [inaudible] discreet but loud. 

CB       

Yes, discreet but loud. 

ES        

Yes. 

CB       

Discreet but loud. And you can wear it when you need to wear it. It's absolutely up…

ES        

Yes.

CB       

Totally up to the wearer. That's the beauty of it. 

If you are concerned about any of the subjects discussed in the podcast, please follow up and seek support from your healthcare practitioner. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the Hidden Disabilities Sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.

00:18:26