It’s been a year since the surgery to place this feeding tube. To the day. Originally there we
It’s been a year since the surgery to place this feeding tube. To the day. Originally there were promises of it alleviating symptoms but it quickly became clear, that in reality, this thing is just saving my life. I’ve had no end of troubles with it since the very day it went in. Many of my problems with it have been atypical or rare; my experienced GI team having never even heard of them. Too numerous to list, and too complicated to explain with words alone. At first this tube frustrated me so much it triggered some of the worst meltdowns of my life. Then there was the depression because of the lingering pain that should have disappeared when it healed. The anxiety of how this thing made my body look and how uncomfortable it was. Now it’s just there. It still causes pain, it still gets in the way. I still catch people staring. My body is still not a ‘normal’ one but then it never has been, so what is a tube and what is a stoma to such reality? The things I live with every day with this thing 99% of people couldn’t comprehend. But now, it’s just me. A year isn’t a very long time in a life time and a year is even less time in the great big picture that is humanity. Still, in such a short time, it became part of me. 40 years ago I would have died from starvation. Now I can not only survive, I don’t even have to do it in a hospital. At first, having a tube coming from a hole in my actual organs seemed barbaric (as does much of modern medicine). ‘Surely, we are more advanced than this?’, I thought. But, no, no we are not. Medicine is barbaric; it may always be that way. 40 years ago I would have died from starvation and now this is my normal. {please don’t remove my words} -- source link
#anniversary#one year#starvation#self portraiture#self-portrait#feeding tube#portraiture#disability#disabled#enteral nutrition#enteral feeding#mitochondrial disease#mitochondrial myopathy#gastroparesis#intestinal dysmotility#intestinal failure#non binary#gender fluid#tom boy#survival#surviving