This shoot is a celebration and not how I expected to first wear my #STEVEMADDEN shoes (I call them my Cinderella shoes because I had wanted to find super sparkly ones for when I finally get to go out for the first time in 8+ years after having to miss every single event due to illness)...and the most real and raw it could get: needing to wash my hair more often and yet really difficult to also do now, because of the seizures (sweaty temperature or hot and cold changes), dark circles from almost no sleep for weeks due to constant pain or symptoms, gloves on 24-7 to manage the pain from Raynaud's Disease and adverse drug reactions, lots of bruises, scars, bent legs (HEDS), the ruptured blood vessel in my leg in early childhood (a major marker for VEDS) and atrophic scar from an accident on my elbow (CEDS). I am having the most trouble using my arms and legs, walking with balance off, weakness, and constant numbness or tingling pain than I ever had before (FND). I also have major skin discoloration from blood pooling and insufficiency and also now the paralysis. I have no 'makeup' on and am not looking how I would exactly like to and yet everything is who I am right now. I know I am getting there, always in process, rediscovering who I really am underneath it all for the first time in my life.
So today, in fear and courage and hope, I put on my Cinderella shoes, wearing them for the very first time with half paralyzed legs and my 'new' disabled body. Even here...I feel a tiny bit closer to who I was always meant to be. Maybe one day I will come home.
- RKD
10-10-24