These days I am back on the treadmill. Not many people see my day to day. Maybe my 24/7 care aides know it best. This crude video sums it up. I dont like even watching myself on camera seating in a chair,shoulder slumped. Being hosted up into the access a ride. Driving from here to there for doctors appointments or to go to my office. I am just trying to keep some semblance of the Jason that I wanted to be.
However, this is not easy. Sleeping in a bedroom on my own. Day after Day stretches into weeks after weeks stretches into months after months, stretches into year after year. My expectations have been run over, Ive always pictured myself with a family that was nuclear and simple. But that is not the case. Being loved, being touched, being held, they are no more, in this reality, pushing and pulling of my body is by the occasional medical practitioner and by the man hands of care workers. Is my new normal. Roll me over, pull me out of bed, put me in the wheel chair, brush my teeth, give me a shower, dress me for the day, the routine is dark with my wife and son sleeping in a separate bedroom, on the other end of the apartment. Is there no relief? It just feels like I am not part of the life I thought I was part of. Pile this on top of being severely disabled, life has become beyond my imagination.