I started life as a dancer. From the age of four my life was a constant round of ballet, jazz, tap and contemporary classes. I was lucky enough to go on and become a professional dancer - travelling the world on various contracts. For me, being strong meant the technique, the stamina, the ability to physically do things that others admired and sometimes even dreamt of doing themselves.
Fast forward to an accident on stage which ended in me not being able to walk for almost six months. This began my journey with pain, with disappointment, with patience, and with changing expectations.
I discovered along the way that I had Ehlers Danlos Syndrome (EDS) as well as some dodgy discs in my lower back - inoperable for many reasons. My life has changed completely, and these two worlds could not be further apart for me.
Some days I feel like giving up. I have spent almost twenty years in pain. It has impacted life events, holidays, relationships, work, and my finances. But it has also shown me my inner strength. I’ve adapted and come up with ways to work through developing my own business – working from home on my own time schedule allows me to deliver on deadlines for my clients, but to do so on my own timeline rather than the standard 9 to 5.
I've received amazing support and care from friends and from complete strangers. I've also seen the negative aspect - some people really don't want to make changes or exceptions for a person with disability. It is sometimes all too hard. If you don’t fit the box, then they don’t want to know. Or they make exceptions for you and provide options, but all the while making you feel like they have done you a huge favour!
I am still on the path to finding a manageable pain level. I’m working closely with my care team; my GP, my physio and exercise physio and we are constantly looking at new options and treatments that may have an impact. I have tried pretty much everything, but I try to remain positive. There is no cure for EDS, however. It is hard for other people to understand this particularly because it is a ‘dynamic disability’; one day I can be walking and even dancing potentially and on another day (for no reason whatsoever) I can wake up and not being able to even get out of bed.
But that is exactly what makes me strong. My disability. I have learnt empathy; I have learnt to see past the physical. I have learnt never to assume and never to take anything for granted. I am grateful for what I can do when I can do it.
And I'm grateful to the people who want to be in my life. For those that see past the things I cannot do yet love and laugh with me regardless. They also help make me strong.
As Paulo Coelho says, "The world is changed by your example, not by your opinion."
