At this point it’s a creepy waiting out game. My brother made it to CA, barely, just to be admitted into the hospital near my sisters upon getting there. I find I can’t go into the finer details of his health on this blog–the slow process of the body putrefying–it feels sacrilegious–or private. Is that because death is taboo in our culture? I’m not sure. I’m finding the inability to talk about death in general in a frank manner in my family extremely frustrating–we certainly live in a death-denying culture. It, of course, on the fringe of what we talk about when we are discussing my brother but the cold hard fact of his death is dealt with superficially–not faced head on–are they scared we’re betraying him if we dare speak the truth. So I’m left to vent my anger and frustration about the relative silence to my husband and friends.
Sometimes I’m in their faces with my attitude. I don’t know if this is unkind. It probably is. My cousin yesterday, when I told him of yet another painful detail in his decline said, “shit, he just can’t catch a break.” He has been using this phrase repeatedly for the last several weeks when I catch him up to what is happening. I love my cousin furiously. He is like another brother to me–but this phrase is pissing me off. I said to him sternly this time, “he’s not going to catch a break–he’s dying.” I don’t know how comments like that from me feels to my family. No one ever challenges me. Usually there is just silence. Am I being cruel?
It’s not that they won’t entertain death as topic at all. It’s something subtler and I can’t put my finger on it right now. Anyway, in the moments that death was talked about yesterday I got thoroughly jerked around. Yesterday morning my mother told me she thought I should go out to CA early next week–what has been driving me most crazy is not being there. I want to be there now. I want to be of service, even if it’s just bringing him a glass of water. I know this is helpful. I’ve worked in hospice and being there to serve is the greatest comfort there is when someone is dying. There is another comfort and that is if the person accepts his death and talks about his life and hopes and fears about dying. That is a wonderful intimate experience.
Anyway, I bought a ticket for Monday. Later that same day my mom tells me she’s known since morning that my brother has only two weeks to live–this via my brother-in-law who is also a doctor. I freak–I say, “what the hell am I doing here?” I buy a ticket for tomorrow. Late last night I talk to my sister. She gets upset and says her husband doesn’t know what he is talking about–it’s not his specialty–it’s hers’. She says my brother easily has a month and he’s exhausted and told her that day that he had too many visitors. I shouldn’t come until next week. I reschedule my ticket for Monday–brought again to tears–I need to be there. I need to see him. 15 minutes is enough. I don’t want to disturb him. My sister assures me I will be able to be of help once he gets home and the chaos of the hospital is left behind.
I am the only one in the family far away now. Everyone else is there. As difficult as I experience my family’s communication style, they are also the only ones who really know the pain. I talk to no one else except my husband and two special friends. I can’t talk to anyone else–not even my therapist. People’s sugary concerned voices turn my stomach–make me go silent. They are nice well meaning people, but have never experienced anything like this. Is what I hear in their voices empathy or pity? Why can I not tolerate it? I tell them I’m sorry–I can’t talk to anyone right now. My family, even if unable to be completely open, hurt with me we share an intimate reality. I cling to them now.
The two friends I talk to? What makes them different. I certainly do not feel pity from them–and I can vent my frustrations openly. My husband is currently my rock. He understands somehow and challenges me when I’m not fair to someone in my family. He does it gently so that I can accept and love and let my family members deal in their own way, just as I am dealing in my own way. I am grateful I have the people I do.
My withdrawals? I’ve stubbornly gone ahead. Last night I cut another .375 mg off my Risperdal dose. I didn’t sleep well–but oddly enough–as sometimes is the case when I don’t sleep well–I woke up with extra energy and the desire to write. I haven’t written in a week. All that stuff I posted was backlog. Before this morning I thought I would write no more–at least not until this is all over. I thought about not bringing my computer to CA at all. But I will bring it. It can be a distraction even if I don’t write I can do my daily reading, commenting on other blogs etc.
I’m not sure about continuing to chronicle my experience with the dying process of my brother. I imagine it could get old. And I’m not willing to detail the slow break-down his body is going through. The painful daily news of how the cancer is poisoning his body–it’s amazing all that is happening–and how hard he is trying to stop it. He refuses to let go. He is still fighting for any minute of time he can add to his life. He is insisting on chemo even though it may literally be what kills him at this time given the state of his health. I want to scream “let go!” My family all supports this insane fight. I understand that I cannot presume to know how he feels. But I’ve asked my husband if I am ever in my brothers place to speak frankly with me–to tell me the truth. Everyone is tip-toeing around my brother. Aiding the denial. Is that normal? Is it okay? God, am I just being a god-damned bitch?
I think it will be easier to be truly empathetic once I’m in his presence. Once I can feel him–touch him. Now I rarely speak to him and the phone is a lame method of communication when someone is dying. I told you that I wrote him a letter. I sent it to New York before he left for CA. Apparently he didn’t get it. I want him to know how much I love him. I will bring a copy of the letter with me. Perhaps I won’t need to give it to him. Perhaps I can tell him all that’s in it. That would be preferable.
Please feel free to comment–even be critical. I’d like feedback. Strangers can sometimes see more than people close to you can. Also, I think that in some ways I’ve only offered one side of the story as far as my frustration goes. I am also quite sensitive to how everyone is dealing and would be happy to respond in comments to clarify anything that might be unclear. It is at times quite helpful to write all this out.