Here's the most important thing: I want you to see me as a whole person, not as a disease, or a tragedy, or a fragile piece of glass. Do not look at me with pity but rather with all your love and compassion. Even though I am facing death, I am still living. I want people to treat me normally and to include me in their lives. Don't think that you cannot be completely open with me. It is okay to tell me if I am making your life harder, or that you are feeling afraid or sad.Wow. That first one was definitely true for my brother. True story. I'm staying down at a hotel with him while he got the radiation treatments. We were talking, a deep and hard conversation. Then there was a silence that hung in the air. I sat with him for maybe sixty seconds to see if anything else needed to be discussed. He broke the silence with, "why are you looking at me?"
"I was just making sure I didn't have anything else to say," was my response.
"Well, mom will just stare at me and it freaks me out." And with that, I retreated to the other side of the room. It's hard to hide in a hotel room. Not exactly a lot of corners and his condition precluded me from giving him his privacy by up and leaving. I know what he meant, though. He'd said it multiple times. He despised how this disease had come to define him through it's limitations. He wanted to be treated normally. But there were things he couldn't do so we had to do them for him. It left him feeling weak and burdensome. It was a constant struggle because the disease kept changing the rules of the game. We'd figure out what he needed help with and what he could do on his own. He had some semblance of autonomy for a period. But then the disease would take that away, too. So he'd need more special treatment which just further fed the feeling of being treated as a disease instead of a person.
That last sentence was not true, at least for me as I related to him. He hated feeling like a burden. So I always told him that cancer was the burden, not him. I never sensed that he was ok with that metaphor.