I have been thinking about J and his transplant, mainly about how people react to him and to me when we tell them that he’s needed a new liver. People sometimes recoil, sometimes look shocked, some seem relieved. I think the relief might be because he is so frail and looks so unwell that people assume he has advanced cancer and it’s a relief to them when I say what’s happened to him because they assume then that he will recover and live a normal life. What annoys me most about every single interaction is my (and J’s) need to always clearly state that he has an autoimmune disease, he is not an alcoholic. He hasn’t caused this liver failure by being a drinker. As if somehow that makes a difference. I have tried recently to stop doing this. Alcoholism is as much a disease as PSC. I am the child of an alcoholic and I have a whole raft of stuff to write about that when I’m ready. It was a terrible thing to live with but thanks to that upbringing I recognise that it is a disease. And if that disease leads to liver failure, the person who needs transplant is no less deserving of health care (and by that I mean the transplant, the aftercare, and a structured and robust program of therapy to try and prevent re-dependence on alcohol post-transplant) or the respect and consideration of others. Every time I defensively say PSC I am demeaning people who are suffering from a different disease. Nobody WANTS to be alcohol dependent. Just like nobody wants PSC.
- "Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold." - Helen Keller
- "Don't compromise yourself. You are all you've got." - Janis Joplin
- "Take the risk of thinking for yourself, much more happiness, truth, beauty and wisdom will come to you that way." - Christopher Hitchens