Over the last six months I have shaped and squeezed the project into multiple funding applications. I have jumped through hoops, ticked as many boxes as possible and I have not been successful.
Each time the project is tweaked for a new grant application to show ‘how worthy‘ it is for invisible voices to be heard, my heart sinks. It seems to shift further and further away from the simple wish to place our voices at the places we cannot get to. To amplify absence from the lives we used to have.
And I am also angry, there are so many of us. None of us signed up for a life that is so restricted from the one we used to have. It is complicated explaining varied and fluctuating conditions. But simply answering the question “Where would you be if you could?” has illustrated so many different lives living with these conditions and what they have lost. I have found it truly humbling to be sent such honest messages for the project.
At a time when funding for art and investment into society as a whole is shrinking, this feels even more important that this project should happen. Charging about the UK with a mirrored box, should disrupt, amplify and challenge a society that doesn’t recognise that so many people are still here but by their absence invisible.
It has been hard to write this, as for now the mirrorbox visiting message locations will be postponed until 2025. My old life in business means I am not scared of asking if there is anyone who knows a company or person who might be able to make it happen?
Already, so many people have already come forward to help. People with friends and family living with M.E./CFS or long COVID. People simply moved by their own connection with absence from places and people that are important to them.
As someone living with (currently moderate) M.E. This takes a lot of energy but I am determined and I will not give up.
With grateful thanks for your support and patience
Alison