My Diagnosis, Disability Journey and Gratitude

G’day my friends and welcome to another week and another post!

I have been writing these blogs for 2 years now, and have spoken about a lot of topics.

However, I feel like there is a topic that I haven’t really discussed properly.

And that is my disability diagnosis!

So I thought for today’s post, I wanted to reflect on what I have learnt in my 23 years of being someone who has an MD diagnosis.

So lets jump right in shall we?

My Diagnosis

a photo of me and my dad taken the day of my diagnosis. I am wearing a white and pink top with grey tracksuit pants sitting on a tree branch. Dad is standing next to me holding me so I don't fall off the tree. Both of us are smiling at the camera.
Taken the day we received my diagnosis

I believe I have spoken a bit about this before, so I will leave a link here…..

But I had my muscle biopsy done at the age of 3. I honestly don’t remember that time, but my parents remember it like it was yesterday receiving the results.

My mum often recalls that she knew while getting me ready to go to the doctors to receive the results, that life from that moment on will be different.

And sure enough she was spot on.

She knew when the doctor came out to call them into his office, the look in his eyes gave it away immediately.

My parents asked the questions he couldn’t answer as the type of MD I had was not the most researched about, and I was only one of a handful of people in Australia to have been diagnosed with Ullrich MD. When you think about that it is crazy! I have no idea how many people now in the country have it, but it is still rare to my knowledge.

But he gave my parents the same information that he told parents who had children diagnosed with Duchenne; a very severe and rapid type of MD.

Go home, love her because the outlook isn’t good.

Never trust dr Google.

http://Photo by Brett Jordan:

My mum did the one thing I tell almost anyone not to do. Consult Dr Google. But she wanted to be prepared for what the future had installed. It emotionally destroyed her and it scared her to read stories and reports from other parents or specialists. What she was reading was not what my type of MD was, but it still scared her.

But my parents got to work on finding me and OT, Neurologist, Therapies and the works to try and help me the best they could to slow down my condition.

Stubborn is my middle name

a photo of me wearing my first pair of night afo's. I am pulling an excited face with my hand in the air.

However, I was so stubborn. I didn’t want to do my stretches, I wanted to run around in the play ground, and I would chuck a tantrum the minute my night AFO’s (or as I called them Moon Boots) would be put on my feet to stop my achilles from contracting. My parents were fighting a losing battle, and soon enough didn’t force me anymore to do Physio or stretches, which they do regret to this day and feel guilty for.

I didn’t fully understand what my parents were telling me about my condition. I also didn’t fully comprehend that I was any different to my peers at school. Which is some ways was a good thing.

But it also meant I was confused which then lead to sadness when I fully did comprehend what was happening to my body when I hit puberty.

I was angry, I hated my parents and I blamed them and I blamed God for doing this to me and not allowing me to live like kids my age.

My parents would allow me to do pretty much anything I wanted and allowed me to make the choice to not participate in something when it got too challenging for me. But they also did wrap me up in cotton wool to prevent me from injuring myself which could have been disasterous.

I found a love of performing arts and did drama for almost 10 years and wanted to become an actress and even did dance for 18 months, before pulling out because I became self conscious and the moves became too difficult for me to modify.

I was told I wouldn’t be walking by the time I hit grade 7, and when I was still walking then, the doctors told me I would be in a wheelchair by year 12. I was not. I am still very proud of that!

Listen, Understand, and Adapt.

a photo showing my brother carrying me off the beach out backs are turned to the camera.
one of my favourite photos ever!

I became very good at adapting to my surroundings and problem solving.

Sure I still had moments of pure frustration and still do when I can’t open a jar or fall over.

But it is part of the journey.

I am lucky my condition is slowly progressive (or so they say), and am still able to do most things that I want to do.

Yes I need help and I always will. I need help standing up after a fall for the most part, getting off low chairs if I am having a bad day, getting changed out of swimwear, and yes even toileting when in public. Because despite disabled toilets being designed for disabled people, they aren’t really Rhiannon proof. Which then makes it even more hilarious seeing the looks I get when leaving the disabled bathroom with my mother following close behind! That’s a story for another day though!

But that quickly becomes your normal and you don’t even think about it. Once you get to a point in your journey where you understand how your condition works and ways to adapt to the world around you, living with your condition is easier.

Is it still challenging? my goodness yes, and it always will be!

But it doesn’t only challenge you as the person with the diagnosis but those around you as well.

Grateful for my disability?

10 year challenge from a few years back – 2009 and 2019

People often question me about why I say I am grateful for my disability. Over the last few years I have really tried to figure out exactly what I mean by that.

Truth is, not only does my disability give me awesome seating and parking spaces, and experiences that not everyone will be able to have, but it is so much more than that

I have learnt to appreciate life on a new level. Having a shorter lifespan has forced me to enjoy every moment in life, and try and find a deeper understanding of the highs but more importantly the lows.

My disability has enabled me to have an incredible imagination, which in turn helped with the creation of this blog and creating the life I truly want.

My disability has made me the woman I am, and that I am truly grateful for. And I hope in some way I have repaid my parents for all their sleepless nights consumed by fear and worry all those years ago.

Till next week!


Leave a Comment

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.