Meeting of a lifetime

Traveling to Sydney, Australia, to complete our fifth World Marathon Major, was obviously the goal for our recent trip to Australia.

Getting to meet my online friend of six years, who lives with the same genetic disease that I do, was the thread that weaved this part of my life tapestry together. While the marathon was a goal to carry out, meeting Rhi was more of a dream come true.

It is no secret for those who know me or have gotten to know me through reading my columns or blog, that I have lived with a gaping hole in my being for most of my life. I have always wanted/needed to meet someone “just like me.”

Living with a rare disease can make that difficult. I have met others with Muscular Dystrophy, but never anyone this close to my diagnosis.

When we started chatting on Instagram six years ago, we began dreaming about the day when we would meet face to face.

After arriving to Sydney on the first day, we soon realized that being in the same time zone was quite the novelty. We began excitedly messaging one another in real time!

I told her that I was struggling to stay awake until my new bedtime for the next 10 days. It was tough! She suggested that we hop on a video chat while she made dinner to pass some of my time and help me stay awake.

I eagerly accepted and soon I was watching her cook dinner for her family. I felt like I was watching myself as I watched her walk across the kitchen to get things. There were subtle nuances that I completely understood. The ways she was adapting to things was identical to me. Something others may not have even noticed.

Fast forward a couple of days to the morning of her arrival. I woke to a message from her saying, “Ahhh today’s the day! Just got to the airport!” (She lives about eight hours from Sydney, so it was a short flight for her to get to me). My stomach was full of butterflies and nervous anticipation.

A few hours later, my husband and I anxiously waited outside of our hotel where we were to meet. Waiting those last few minutes felt like an eternity.

What would this moment be like that I had pictured thousands of times in my mind? Would I feel peace from the repair of the gaping hole? Would I meet all her expectations? It felt like a lot of pressure to put on one moment.

My heart raced as I repeatedly scanned the crowd for any sign of another wheelchair.

Suddenly, I saw her dad pushing her towards me, with her mom by their side. As soon as I started to roll towards her, a lady stepped into my pathway for an instant. It felt fitting that there would be one final obstacle to meeting someone “just like me.”

We both reached out for a hug and clung to one another. It was astonishing how quickly my gaping hole shrank. I could have endlessly sobbed in that moment, but I did not want to scare my Aussie friends away.

That moment was healing for all of us in our own ways.

As the day progressed, we strolled along side by side. The chemistry was natural and there was an aura of deep understanding surrounding the two of us. That thread that connected us together, weaving one of the most beautiful images in our tapestries of life.

One thing I really wanted to do for her was let her take a spin in my duo bike. I knew exactly how much that would mean to her. I would encourage you to read her blog post that she wrote on our experience meeting. It was beautiful to read her description of that moment (livingabled.com.au/sydney-marathon-2026-a-meeting-of-a-lifetime).

With her and her family at the finish line the next day, we had the motivation we desperately needed to reach the end.

On our final evening together, we enjoyed a nice dinner and had a wonderful time laughing together and getting to know each other more. There was an undertone of sadness knowing our time together was quickly ending.

How do you say goodbye to someone you waited your whole life to meet? We headed back to our hotel and were all struggling to leave one another.

With tears in all our eyes we hugged goodbye. We needed one final hug and vowed to see each other again someday.

Traveling across the world to meet Rhi and her family was everything I had ever hoped for and more. My soul felt at peace knowing hers was too. The meeting of a lifetime for both of us.

Until next time …

Amy Shinneman is a former National Ambassador for the Muscular Dystrophy Association, disability blogger, freelance writer, wife, and mom of two boys. She is the recipient of The Reporter’s Winter 2025 Ink-Stained Wretch award. You can find her blog at humblycourageous.org and reach her on Instagram @ashinneman.