Rebecca Barnett
Tell us a little about who you are and what brought you here.
I guess I would call it fate really, Marilyn and I connected online, I had been reading through the pages of a social media support page for individuals in Perth living with Ehlers Danlos Syndrome a genetic connective tissue disorder that her and I both live with. I was at the time waiting to have an L5/S1 spinal fusion surgery. Marilyn had been through the exact same surgery in recent times and she also lives with Endometriosis another condition I also have. I couldn’t believe my luck in finding someone in such similar circumstances navigating such similar terrain. As our conversations continued it became apparent that we in fact had even more in common. It was almost like meeting a long lost family member and as soon as we met in the flesh it felt like I had known Marilyn for my entire life. What an inspiration she is in every way and what a remarkable project this is that she’s created. I feel so grateful to have been given the privilege to be a part of this incredible experience. This has reminded me of a truth I have always witnessed and known to be true in my heart: those of us that experience profound life challenges and trauma are the ones that (usually) end up becoming the most empathetic, kind and compassionate. It is ironic and irony is life.
What invisible or visible part of your story do you wish more people understood?
That most of the time I am putting on a very brave and tough front, that I am always in pain and that it takes significant effort and use of tools simply to be mobile and exist as a human in this world. That often I don’t like people to know how badly I am suffering or the level of pain I am experiencing because I don’t want to bring others down or feel like a burden or a problem. That every day I absolutely give my all and my fullest efforts into improving, evolving and building despite massive amounts of pain and often other very uncomfortable symptoms. Ultimately too that my worth and value as a human being isn’t tied to how “well” I am. I don’t live with the conditions I live with due to my own wrongdoing or poor life choices the conditions I have are genetic and would cause profound symptoms irrespective of how well I take care of myself. That it is deeply hurtful to be continually gaslit and told that you look like you’re fine or well when you are most certainly not. Most of all though assumptions are cruel to make and if you don’t understand something about someone’s life then ask them and actually believe them when they articulate the truth to you. I find it very difficult at times to accept this kind of attitude from others as I just could never imagine treating another human that way in my entire life.
How did it feel to be photographed as part of Desire Lines?
It felt like a huge privilege, I was terrified initially and felt like I was way out of my comfort zone, but Marilyn made me feel so much at ease. I almost forgot that it was a photo shoot the whole process and experience just felt natural and it was wonderful conversation so this made my fear evaporate in the end. I’ve never been particularly comfortable with being photographed or being seen so this was new territory for me and it genuinely surprised me how much I ended up enjoying the experience and most of all it was just such an honour to participate in a project such as this, what a wonderful opportunity I’m so grateful to have participated.
Do you have anything else you would like to add?
Not that I can think of other than THANK YOU xoxo
This art is not for sale.
People’s pain and hardship cannot be commodified in this space. This space exists simply to inspire anyone who is struggling to cope or searching for a way through.
The art is a gift from myself and every participant. These images capture a moment in time that allowed us to realise that our pain has given us something priceless:
Wisdom and resilience.
They form the desire lines we walk as we move through each new storm we face, again and again.
marilyntuna.art 