The story of Mandy
No one could have prepared me for this journey. No one could have assured me I had the strength to endure the countless trials and the endless pain. Swallowing the courage to proceed with the first brain surgery was an emotionally exhausting effort. Doing it again 23 other times for various other surgeries was a tall order for any brave soul.
The hard thing about rare disease is the nearly perfect trust we must have in the doctors treating us, but by the very nature of being rare it seems the doctors are learning too! Mistakes happen. Setbacks happen. Living a life pressed against the edges of medical knowledge is harrowing at times. This reflection would be too long if I listed the catalog of the many things that have been tried to ease my suffering. I am also deeply humbled to be treated by doctors who are invested in my health. They suit up with hopeful treatments over and over again too. My team has kept me alive. I am deeply grateful.
The truly transforming thing about rare disease is the unique intimacy you have with your own body. Though it can feel like a broken vessel; its also rather mystifying because it is wired to help you endure the journey. Likewise on this course of suffering you also get to know the capacity of your own spirit. The fight is in you. It does not always need to be big, it can be a small persistent whimper refusing to say quit! You’ve got this! Even if you must nap first!
Carry on you brave and courageous friends! Deep love to you all.