Sydney Marathon 2026: A meeting of a lifetime

G’day friends and welcome back to another blog post!

Where do I even begin to summarise perhaps one of the most fulfilling and memorable weekends of my life?

It went by so fast that my brain is constantly saying, ‘Did that even happen?’

They always say never to meet your heroes. Never meet the people you aspire to become, the people you look up to, the people that give you hope that somehow everything will be okay.

Well, sometimes, that advice is so incredibly wrong. Sometimes meeting your heroes heals your soul in a way you didn’t even expect. It completes a part of your heart you were missing.

That is what happened when I met the woman whom I have idolised, looked up to, and aspired to become. Who has given me hope for my own life.

If you read last week’s blog (if not, catch up here now! https://livingabled.com.au/sydney-a-trip-six-years-in-the-making/), you would know I was catching a flight to Sydney to meet my friend Amy and her husband Jamie, who flew in all the way from Indiana in the United States, to run in the Sydney Marathon.

Amy has Bethlem Muscular Dystrophy. And even though on paper I am classed as having Ullrich MD, I also have the symptoms for Bethlem. Both she and I have the same collagen 6 deficiency that causes our type of MD. So, essentially, we have the same type of MD, just with different severity and progression rates.

This was the first time for both of us meeting someone with the same type of MD. Amy has waited just over fifty years to meet someone like her. For me, 27 years.

Safe to say, it was a huge moment for both of us.

And a moment it sure was.

As I left my hotel room to go and meet up with Amy and Jamie for the first time, the nerves had kicked in. Yes, we have been friends and pen pals for six years, but I almost felt a sense of pressure going in because I knew how much this meant to Amy, and I wanted it to be everything she had dreamt of and more. I was thinking, ‘Is she a hugger? What if I go for a hug and she is like, ‘stranger danger!’ What if we just look at each other and it’s awkward, and no one knows what to say or do after saying hi. Meeting in person is so different to talking on FaceTime and messages. What if the in-person chemistry isn’t there?’

Besides the nerves, it was also excitement. I felt like a kid at Christmas. Amy and I had been talking about this moment since we first started talking online, and knowing we were only a couple hundred meters apart and that it was about to happen, the anticipation was through the roof.

Exiting the lift, rounding that corner into a sea of people, and knowing Amy was somewhere among them all, my heart started racing a million miles a minute.

And then it was as if it was a scene from a movie. The crowd parted, and there Amy and Jamie were, sitting overlooking the harbour.

As soon as we locked eyes. I almost begged my father to push me in my wheelchair faster to get to them.

The minute we got to each other and we embraced, it was everything I had dreamt of and more. All my nerves and worries went out the window. We clung to each other for what felt like hours. Revelling in the fact that finally, after six years, we were in the same country, same city, hugging each other.

What do you say to someone who is finally sitting right in front of you? I think both of us were completely stunned and couldn’t believe we were finally next to each other!

There were introductions and hugs all around, and after a bit of chatter about the flights and their experiences so far, we decided to head up to the Opera House before finding somewhere for lunch.

There were so many things I wasn’t prepared for or expected to feel going into this trip. One of those things happened as soon as we started to make our way to the Opera House.

Amy and I had an experience that everyone who walks gets to have; we were able to ‘walk ’-okay, technically wheel- next to each other, be at eye level, and have a conversation.

There are so many things as disabled people we just get used to: constantly straining your neck to look over and up at the person walking next to you to speak to them, having to repeat yourself because they are too high up so they can’t hear you properly, not being a part of the conversation at all because its easier than not repeating yourself to those behind you.

I was filled with gratitude and happiness to be side by side with Amy, at eye level as we all walked along. Jamie was pushing Amy in her chair, and my father was pushing me. It was as if Amy and I didn’t need to say anything to the guys about pushing us next to each other. They just did it.

Even though it was a new experience, it felt so natural, as if we had lived in the same town forever, going for a weekend stroll, chatting about the marathon and marvelling at all the sites, all while not ending up with a neck cramp from having to strain to talk to each other.

We spent all afternoon together chatting over pasta and pizza (hello marathon carb loading! And really, do you actually need an excuse to eat carbs?) before we made our way back to Amy and Jamie’s hotel room, as they needed to be ready to be picked up at 3 am the next morning to head to the start line!

However, we didn’t part ways just yet. Amy and Jamie left us for a few minutes, but came back with their duo bike in tow! For those who don’t know, the duo bike is what enables Amy to compete in marathons. It’s essentially a wheelchair made for marathon running! Amy sits in the chair (I compare it to a recliner; it is that comfy!) and Jamie runs while pushing her.

I have seen them on social media run marathons and train on this bike, but to see it in person was mind-blowing! How someone was able to come up with this concept to allow people with disabilities to participate in something that for the longest time was deemed impossible was just unreal.

As I was admiring it, Jamie looked at me and said, ‘Jump in!’ I was so nervous about breaking something, considering they had a race the next morning! But as I looked to Amy for reassurance, I could tell she was just as excited as Jamie was to see me in this bike. And was I actually ever going to say no to that opportunity?

With the help of my parents and of course Jamie keeping the chair steady, I got myself settled into the bike. I couldn’t hold my head up as the chair was in a slight recline (I blame my rods in my spine), but I didn’t mind, because I easily could have fallen asleep in that thing! 

But at the same time, I was blown away by how tight a fit the bike was, and that was without all of Jamie’s water and fuel, plus the extra layers Amy usually wears because, believe it or not, it gets cold on that bike when it’s moving. I couldn’t get over how much they have to fit on either side of Amy and still make it all work so she can easily grab things and hand them to Jamie when he needs them!

Again, I just thought I would sit in it, and that would be that. But before I knew it, Jamie said, ‘Let’s go for a spin’, and just like that we were jogging! Okay, correction: he was jogging, and I was sitting there pleading in my head, ‘oh god, please don’t pull your calf muscle now! Don’t do a hammy! Just don’t hurt yourself now, right before tomorrow!’ But at the same time as my head was begging the marathon gods to keep Jamie injury-free for the few metres he jogged, I was laughing my head off with Jamie. But it was also a case of if I don’t laugh, I will cry.

For the first time in my life, I felt what it felt like to run, or jog. The wind in my face, the freedom. I could understand why people who run say it’s the best feeling in the world. Because for those couple of minutes, I felt free. Little did Jamie know it, but in that moment, he gave me something I had prayed for my entire life. “Let me run just once. And in my own way, even if only for a couple of metres, I did. That moment is something I will never forget.

Fortunately for Jamie’s legs, the number of people around made it tricky for us to go any big distance, so we pulled up to a stop next to Amy, still giggling, while I was frantically trying to blink my tears away.

The following morning, the buzz in the air was electric! We managed to get to the accessibility platform a couple of metres from the finish line, and got ourselves comfy to see the elite group and the wheelchair division come in. I had the television coverage on my phone, and at one point, several people were next to me on the other side of the platform, watching it with me. All of us started talking about who we were there to see run, and marvelled over how fast the elites were running. I still cannot fathom how it’s possible to run a 2:30/k pace!

During the race, I occasionally checked in with Amy to see how they were doing, while she kept me up to date on their position on the course, since their tracking didn’t work on the marathon app for some reason! (Technology got to love it!). At one point I asked how they were going, and she responded with ‘Jamie is really struggling. It’s one of the hardest marathons we have done’. I didn’t have any doubt about them finishing, but I got slightly nervous for them as many people were falling and getting slightly injured on the last bend of the course before the last straight to the finish line.

My family and I started looking at the top of the hill because we thought we would be able to see their duo bike run down it, so we could really cheer them home and film. I was laser-focused on the top of the hill before I heard a scream. I looked to the last bend, and Amy and Jamie were right there! For some reason, we completely didn’t see them come down the hill, and they were almost in front of us!

As they ran past, fist pumping the air, I couldn’t believe what I was seeing. Once again, I was so overcome with emotion. I was watching my friend compete in a marathon, her husband making sure it was possible, and they were doing it together. The perfect team. I was in awe watching them, and so relieved for them that they had completed arguably the toughest course on the major marathon list. Not only were they running for themselves, but they were also running for all of us who can’t.

After they finished, we knew it would take them a while to navigate all the finishers and reach the reunion zone at the Botanic Gardens. Originally, my family and I said, ‘We will just wait for them at their hotel, as it’s right around the corner’. But something was telling me we had to get to the gardens. If Jamie was struggling during the course, he may need a hand walking back to the hotel.

So we found the accessible crossing and made our way to the gardens. I said to Mum, ‘How hard will it be to find them? They are the only ones with a big chair!’ She, of course, looked at me and said, ‘ Um, considering we almost missed them running past us, I would say it truly is like finding a needle in a haystack’.

We figured out where they were, which was down the bottom of a ridiculously steep hill. I asked Amy if they needed help. She responded with, ‘I think so; I don’t know how Jamie is going to be able to push me up the hill’. So Dad told my mother and me to stay at the top, and he would go find them. Fortunately, he did, because he ended up having to push Amy up the hill because, after a marathon, Jamie had no gas left in the tank. And I don’t blame him!

We had one little hiccup at the accessibility crossing on the way back to their hotel (which honestly is a story for another day. I will probably talk about that either in a separate post or just a reel on social media). But we eventually crossed the road, and let Amy and Jamie get to their hotel to recover, with a plan to meet up for a celebratory beer and dinner that evening.

Nothing prepares you for saying your final goodbyes to someone who has essentially changed your life. I think Amy and I both knew it, sitting next to each other at dinner, with none of us prepared to say it was time to head back to the hotel. To be honest, I think none of us at the table were prepared to say it.

As we made our way back, the usual excited chatter we had during our walks that weekend fell silent.

We finally came to a stop at the entrance of Amy and Jamie’s hotel. All it took was one look at each other for us to be sobbing messes. We embraced for what felt like a lifetime, not willing to let each other go. I watched as my parents gave the person who gave their daughter hope, and I suppose also gave them hope, a warm, gratitude-filled hug goodbye.

Jamie and I embraced and thanked each other, and he then said to me, ‘Never forget this weekend’. I didn’t know what to reply so I simply said ‘ditto’. What do I say to someone who has also had a profound impact on my life?

Both Amy and Jamie have changed my outlook on life in a way I never expected when Amy and I first started talking six years ago.

Seeing them together, working as a team, I didn’t see ‘patient’ and ‘carer’. I saw ‘husband’ and ‘wife’. Something that society has long told people with disabilities we aren’t allowed to have, or that it is gross to ever think of a disabled person in a relationship. But Amy and Jamie are proof that those people don’t know what they are talking about. People often think that an inter-abled relationships are unbalanced or ‘unfair’ or not normal. What I saw was ‘normal’ and then some.  He shows up for her; she shows up for him. Both on the marathon course and off it. Exactly how you would expect any couple. Why? uh maybe because they are human?! 

But in all seriousness, that is Amy and Jamie. They are a team. Through everything, they do it together. Throughout the entire weekend, I was so happy for Amy because she deserves the absolute world, and she found an absolute gem in Jamie. And watching them together made me so hopeful for the rest of us mere disabled singletons.

 It is clear Amy didn’t just give me hope about what is actually possible when living with Muscular Dystrophy; she singlehandedly quieted all those voices in my head that told me to believe what hateful people were spewing about dating, marriage and disability. I knew this weekend would heal me in ways I didn’t expect, but quieting the mental goblins was something I most certainly didn’t anticipate. 

As we parted ways for the last time, with promises to see each other again one day, I sobbed all the way back to my hotel. I knew the weekend would be special, but it truly became a weekend I will never forget. The fun, the freedom, the normalcy, the friendship. It was everything and then some. 

If I could leave people with disabilities with any advice, it’s this: meet people with your disability! It’s healing, and you will discover your version of ‘normal’ you didn’t even know existed! Also, get out and about! Don’t stay at home if you have the option to get out and do new things. There is so much of the world waiting for you to discover, and you don’t know whose life you will positively change just by doing things that make you happy.

Amy and I took a chance six years ago when we started talking. We were strangers who found each other on Instagram! But that chance has turned into one of the best friendships I have, has healed me in ways I didn’t expect, created my version of ‘normal’, and has led to some of the best conversations and experiences of my life.

Will we meet in person again? I know we will. Maybe it’s my turn to go to Indiana.

Till next week,

Rhi.