Disability Pride Month - An interview with Carly and Ekow

Carly, can we start with your diagnosis story?

Carly: When I was about 20 I was working in a mobile phone shop. I was walking around like an absolute drunk. And a customer said: “you're drunk! I don't want you to serve me.” So, I said: “I'm not drunk!” He said: “OK, walk in a straight line from the front to the back of the store.”

So, I walked in what I thought was a straight line. It really wasn't.

And then my manager sent me home. When I got home, my dad and I walked to the shop about 10 minutes from our house. Within 5 minutes I fell over 7 times.

So, we went to hospital and my MRI came back positive. But the lumbar puncture came back negative. I was like: “but you need both for a positive diagnosis, right?” And they said: “yeah, we do. But it's probably MS”.

I was diagnosed on my twenty-first birthday. The neurologist said : “you've got MS, deal with it.”

Find out more about how MS is diagnosed

That sounds like you already knew about MS and the diagnosis process?

Carly: Yeah, my brother had it as well.

Ekow: Tell them about when you were a child.

Carly: When I was about 8, we were in Rome in the Coliseum. And it was so hot that my eyes went blurry, my knees were hurting, my legs were heavy, I couldn't walk properly.

I cried to my parents saying something's wrong. But they just thought I wanted to be by the pool. I told them something really wasn’t right. But at the hotel, the air con hit me and I was fine. So obviously, my parents thought they were right.

But that's sensitivity to heat, isn't it?

And when did you start using a wheelchair?

Carly: I think it was ten years ago. It wasn’t sudden, I just slowly found it more difficult to walk and used my chair more. 

I had no clue about wheelchair services to begin with.

It’s only since 2022 that I’ve had wheelchair services.

Ekow, can we go over your diagnosis journey as well?

Ekow: I had my first symptoms when I was 14. I'd been playing basketball on a Friday. I just learned how to alley-oop dunk and the following morning I went to leave my bed and my legs didn't move. I thought I’d just slept in a weird position. I went back to sleep and when I woke up again, they felt normal. I thought I’d just woken up before they did.

Then on Sunday, I went to show my friends my alley-oop dunk. But my knees would bend the wrong way. It felt like if I put any more pressure on them, they'd break in half.

I used to love going on walks, and this is how I track my symptoms. When I was around 14, I 'd walk for hours. By the time I was 16, I could only walk for about 2 hours before I felt like I'd been running all day. At university I was walking for about 15 minutes to an hour. And I'd trip over the smallest little curb.

I’d have to walk while touching things. Because even if it's just a finger running against the wall, it actually gives you more balance. I couldn't just turn corners. I'd have to stop, turn and then start walking again. But I didn’t want to draw attention. So, I'd find a pole like a lamppost, swing around it and act like a jovial teenager. But really, it was imperative.

By the time I got diagnosed I could walk 10 metres. But now I can't do that.

You’ve said you love your wheelchair, can you tell us about that?

Ekow: I never thought I'd be classified as disabled, because I could walk 5 or 10 minutes sometimes. And I thought I’d just forgotten how to walk properly.

I remember telling my friends: “You know, what? If I keep not remembering how to walk, I might end up needing a wheelchair but probably not till I'm like 80 or something.”

At the hospital they said you're probably going to need a wheelchair. I was like, oh, wait, what? It's not time yet. Right? Because I've only forgotten how to walk. And they said “No, you've got MS.”

The first time I sat in a wheelchair, I thought, OK, this is all right, because I'm sitting down. And I pushed for the first time and I went from here to there in about 0.5 seconds. 

I was like, what is going on? This is what being in a wheelchair is like? I can actually move. I can actually get around!

For those four months, I became known as that guy in a wheelchair speeding around everywhere.

But when I pushed outside for the first time and I could barely move. It wasn't the same gliding motion. I had to push and push to get the tiniest slow movement. It was difficult. I thought this is hard but I just need to practice.

In hospital, they'll show you how to move forward, how to move back, left, right. But what they won't show you is outside, nothing is flat.

So for the next four months, I did laps around the hospital. I gamified it. I’d go around the whole outer part of the hospital where it was all ragged, broken up rocks and pavements, and the hills were super steep. I called it the hard level. And then there was an inner ring which was a little more flat, still quite hilly. That was the medium level. And then inside the hospital was easy.

I practiced and worked my way up the levels.

Then there was this guy, Alan. I remember him saying he might have a prosthetic leg before he leaves, but he might be in a wheelchair.

He was worried about the wheelchair. So I took him on my laps. I saw him go from really struggling to doing the whole hard level by himself. I'm glad it helped him, but it actually helped me as well.

We were discharged on the same day, Allan had just got his prosthetic leg. He said: “I'm probably not going to need a wheelchair now. But for the days that I do, I feel so much better about it.” He wasn't scared any more.

Carly, you have an electric wheelchair and Ekow helps drive, is that right?  

Carly: Yes, I can move my arms a bit but not much. So now I’m like (to Ekow): “You can drive it!”  

Ekow: People are fascinated when they see us going about. They think it’s super hard, but I don’t push, I just drive Carly’s chair and hold on. It  works really well. The only time I have to use any kind of brain power is when we’re going single file.  

Carly: Yeah, that can go wrong pretty quickly. But we don’t crash anywhere near as much as we used to, so that’s good.

Do you have a message for people about what Disability Pride Month means for you?

Ekow: This came up recently. This man at our gym found out we had MS. And he'd  been diagnosed a couple of years ago. 

He wants us to speak to his son. I think he wants us to tell him don't worry, your dad won't need a wheelchair.

But instead, we’ll tell him: “Don’t worry if your dad does need a wheelchair, because it will make his life better and give him more independence than struggling on his feet.”

Be proud to be disabled. Because often society’s attitude  will try and make us feel less than others,  an inconvenience, or an inconsequential aspect of society.

We might have a negative interaction with someone in the outside world. But when we get home to the people that care about us, we know who we are.

Carly: Keep enjoying your life. Keep doing the things that make you happy. No matter how hard. Just keep living your best life because no one else’s gonna do it for you.

Ekow: And don't be apologetic.

Carly: Be unapologetic.

Ekow: Loudly, in fact. Very loudly.