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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a type of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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Community Chat #1 Rhi

Hello and welcome back, or if you are new here, thanks for stopping by! Part of what has been life changing for me, since finally being diagnosed about 3 1/2 years ago, after 44 years of searching, is by far, connecting with others who share my same struggles. Finding others who truly understand what life is like with a disability, really can make all the difference in the world! Especially when it’s the same diagnosis. It fills a void that so desperately needs to be filled, in my opinion.

So, what do a 22 year old Australian woman and 47 year old American woman have in common? Turns out a lot actually. I met Rhi online (the memory of exactly how is a bit fuzzy for both of us 😊), and ever since we have had a great connection. We try to video chat regularly, and will usually talk for about 2 hours. We’ve also done an Instagram Live together, which was a lot of fun!  It’s fantastic. We not only talk about life with a disability, but loads of other things, as any friends would. We have a similar sense of humor which makes for some great laughs! We usually talk in the early morning for me, which is late night for her. What stood out to me the most when I “met” Rhi was her acceptance of herself and her disability at such a young age. It’s not always easy, but I was so motivated by her to keep working towards accepting myself and my disability. 

I got the idea of sharing some of my friend’s journeys with all of you. Sharing their perspective as a person with a disability. I want to highlight that, while we may share the same diagnosis and similar struggles, the term disability is not a one size fits all. We have different ways we adapt, and also the acceptance level can vary at different stages of our lives. There is no right or wrong, and we can really learn a lot from each other. I hope to share one story per month. Welcome to Community Chats with Humbly Courageous! So, without further ado, here is my interview with the beautiful and hilarious Rhi! 


Tell us a little about yourself. Name, age, where you are from, and maybe your current career path you are on.


G’day my name is Rhi, I am 22 and if you can’t tell already by my greeting I live the Land Down Under. Yep, the beautiful country that is Australia. I am a disability blogger, a Law Honours student and a Life coaching student. In my Spare time I sit on the University’s Law society committee, work with animals, Ride horses (yes you read correctly!), spend time with my family, reading (I am a massive book worm!) or now we are almost in Winter; watching AFL Football (search it on Youtube, it is better than NFL! Sorry!). 


2. If you are comfortable, tell us about your diagnosis and when you were diagnosed.


I was diagnosed at the age of 3 with Ullrich Congenital Muscular Dystrophy. However, as time has progressed, some specialists say I am in between Bethlem Myopathy and Ullrich. Which has its blessings and curses like everything else. I am blessed to be able to walk still (completed a 5km fundraiser last March which led to Amy giving 5km a go without training! It was impressive!) However, I struggle getting off low chairs, raising my arms above my head and have contractures in my elbows, Achilles, and shoulders. My lung function is currently around 42% capacity, so I am very cautious of any illnesses turning into pneumonia. I had it once when I was little, I don’t recommend it. 





3. How has meeting and connecting with someone who has your same diagnosis been beneficial to you?  


Growing up, I had met people with Muscular Dystrophy but never people with my diagnosis. Living in Australia, Muscular Dystrophy isn’t a common condition, so it is tricky to find people with the same condition. However, I met Amy a couple of years ago now via the World Wide Web. I know that sounds super shady but hey it is the 21st Century! 

The best thing about knowing Amy is having someone who understands exactly what you are going through, and to be that sounding board for each other. I can vent my frustrations and she just gets it. We support and encourage each other, and that alone makes you feel less alone in a way.  It is so comforting to also see someone who is living their best life. It instils a bit of hope for my life down the track. Knowing Amy gives me confidence that one day I will find my own Jamie, who is willing to help and love regardless of disability, and that instils a lot of hope! 


4. What are some challenges your disability presented and what has it taught you?


This is a question and a half! Watching yourself deteriorate from an early age, you are forced to mature very quickly. You deal with things not many kids do. You are constantly watching your step, so you don’t fall over, and checking accommodation or dinner venues to see if it is accessible. You have to get creative in ways in which you do everyday tasks. The bullying and the glare is something I took a while to get used to! 

However, what it all taught me from a young age was being resourceful. Every common household item fulfils more than one purpose. For example, a flour sifter is a great strainer for pasta! Having MD has taught me resilience, stubbornness, grit, and a glass half-full mentality. It has taught me to speak my mind when it comes to care giving. Not to mention hypervigilance! I can spot a pothole in the ground before anyone else does! 

 

5. How has your disability shaped your life?


In a lot of ways, I am so grateful to have the disability I have. I have done some incredible things that most people wouldn’t dream of. I have been on podcasts, been an ambassador, fundraised, spoken at business conferences and schools about living with a disability and bullying. I have even met some incredible people.  

My disability has made me super resilient as I said before, which fuels me to keep going in the gym, or raising awareness. In many ways MD has directed me to study law; I wanted to give a voice to those who don’t have one. 

I have a lot to be grateful for my disability. I think perspective is a powerful thing, and if I can impart one piece of wisdom, its that you need to work your disability, not let it work you. 


6. What’s one thing you would like people to know about disabilities that may be a common misconception?


That is a good question. There are many misconceptions that I would be here until next Christmas trying to list them all! 

But I think the biggest one is the misconception is that we are broken and need to be fixed. In my opinion we don’t need to be fixed. We need understanding, acceptance, and the chance to live the lives we want. However, to be able to do that, society needs to become accessible. We are all human at the end of the day, want to be loved and to give love, the opportunity gives back to our community and be seen the same as old Harry that goes down the street each day to the bakery. That will take time, but I have Faith that it will happen eventually!!!


See what I mean? At 22, I definitely did not have that kind of perspective regarding my disability. Bravo my friend. You are as humbly courageous as they come, and I’m so proud to call you friend! Stay tuned, as me and this girl have some big plans together for the near future! 💚 For more on Rhi, and her adventures in the Land Down Under, check out her blog called Living Abledhttps://livingabled.com.au/




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