A little update to explain why the first 'Sick Women Tours' has been cancelled and why 'Patience Podcast' has been dormant. I have Cervical Medullary Syndrome, caused by severe craniocervical instability and atlantoaxial instability a rare and life-threatening complication of Hypermobile Ehlers-Danlos Syndrome (EDS). Which means my cervical spine is extremely unstable, my vertebrae partially dislocate compressing my brainstem when I move my neck and are at risk of a full dislocation which would most likely be fatal. I need a fusion of my entire cervical spine to prevent this from happening.
In severe cases like mine, in which physiotherapy has not been beneficial and has actually made things were the international Ehlers-Danlos Community recognises that surgical intervention is necessary. Spinal fusions are performed routinely in the United States for this complication with excellent success rates; improving quality of life and life expectancy. However, this life-saving and life-changing operation is not yet offered on the NHS for patients with EDS.
I won't go into the details of my symptoms here, if you would to know more visit my fundraising website: www.chance4charlie.com
A lot of my time is currently being spent on fundraising for this surgery, but the process will go on to inform my art practise and activism, I am also in the process of setting up a campaign which aims to change the situation in the UK for patients like myself, Action for Spine Instability, which will also be informed by what I learn through fundraising, campaigning and having the surgery.
Sick of being Patient and all the projects attached to it are where my heart lies, I am dedicated to resisting and challenging the expectation that the 'sick' person be patient, passive and submissive to medical institutions and a society that is systematically falling the chronically ill and disabled. Although keeping myself alive is integral to that process, so I will try to add to this work when I can during this fundraising hiatus. And I will resume these projects in full when I am in recovery.