Monday, November 24, 2014

Wherefore art thou, mind?

Today someone who talks to me more than many people do got angry and said something about how he has to think of me as a little kid because I do not remember things. He has to assume I know nothing and repeat stuff.

I know he was just venting. But it hurt more than I felt at the time because on some level, he is kind of right. Many people who deal with me do so on a limited basis. So if I am not fully able to remember and do things, I think empathy and forgiveness might be more easily come by than for someone who is constantly having to deal with the way my mind isn't functioning.

It is getting more than annoying. It also seems worse since the last round of chemo treatments. I just don't know what to say at moments like that. They make me sad, and I am already sad by the fact that I feel diminished.

I was thinking since that conversation that it might be easier not to talk to anyone much, given how things are. I find myself often having to remind people that I am not how I once was. I can't tell you how much I hate doing that. But I also hate when I fail to live up to what I am supposed to be able to be capable of.

If you knew me before, you would know how much different things seem to be now. Now I may just seem really scattered, ditzy, irresponsible. So many never really get what happens with chemo. They never fully understand the toll it exacts, especially in the mental realm. They pay attention to the body, but when it comes to the mind, there are doctors who do not believe that chemo affects the brain.

Doctors may attribute what I am dealing with to stress and other things, but not chemo. I know what stress feels like, and I won't take it out of the equation totally, but there is a different quality to what happens in my mind since chemo. It has really affected my short term memory, especially. And because short term is affected, new things have a harder time making it into my longer term memory.

I talk about this stuff so matter-of-factly that unless I told you I was sitting here, teary-eyed, you might not realize how painful this really is. As a matter of fact, I would guess there are many times that goes for a lot of what I share and write about.

I am sitting here in pain. Tired. Crying. Overwhelmed. But all you can see are my words. You can't see my fear. You can't see how I sometimes wonder if I am making the right choices. You can't see the teeter-totter that I am constantly on, desperately trying to balance out because there is just no way to get off of it.

You have no idea what my day-to-day is like. You have no idea what it is like to feel like the clock is not your friend, and have many people not be responsive to you. You have no idea what it is like to also want to be more responsive to people, but unable to get to many things in a day, and sometimes forget to even do them for weeks. You have no idea how the part of me that is always trying to be balanced and understand things feels knowing that the first two sentences seem hypocritical. You have no idea how frustrated I am to think that I "need" to be treated differently and in a "special" way, but to not really want it at all.

The other day I was trying to do something. Someone offered me a different way. I was trying to do it the way that would have seemed "normal" before. I told her, "Sometimes I like to act like everything is OK and normal." As a result, I sometimes cause myself issues because I can't really do things like I have always done.

I hate watching myself change like this. It is partly what I feared and cried about on the train platform about a year ago. I don't want to watch myself deteriorate. When I talk like this many probably think I am going to die. Someone wrote something recently on Facebook that I was "very sick." I cringed.

I have never said that about myself, whether or not it is "true." I would never want to say that about myself, either. I thought about saying something to the person, but I have learned that sometimes words like that are needed to spur people to action and to want to help. It can also, however, have an adverse reaction in that people may not want to help a person they perceive to be dying.

There are so many ways I feel stymied and frustrated. People who think they know better don't help, either. I can't tell you how many times people ask me the same questions over and over or make the same suggestions as the line of people before them.

Yes. They want to help. I get it. But what many don't get is how much energy it takes to have to repeat myself over and over, and how much it takes to be "polite." Some people think that it's nothing to "just" respond quickly to their message, their text, their call. Sometimes it would take everything I have. But it is so difficult to convey that to people who have never had the experience I have had. It is difficult in a world that has certain expectations of how things should be done. If I don't act on something I must be ungrateful or not really want to help myself.

I saw a video about Zack, a teen who died dealing with cancer. In it, his mother talked about how he sought to live while dying.

In some ways that is what we all do. But no one claims that, except perhaps for the person who has been told by someone that they are dying.

I don't know that I ever want to go there, but for all I know that is exactly what I do each and every day. But doing something and claiming it aren't exactly the same things.

In the last few days a few people have stepped up to try to help. I am not sure what exactly has spurred them on, although I have been once again more vocal. Whatever it is, I am grateful for it, and hope that something comes out of it.

For a while now, I have said I don't need suggestions. I need other people to take action on my behalf. I am more grateful than most will ever realize for those who have stepped up in that way.

For the record (related and not), because I think it an interesting point of conversation, someone suggested that local churches can help. She offered to call three. One said they only help groups, and the other two have yet to respond. We will see how it goes.

I need help more than ever, but I am also so tired...It is really hard to have to deal with the stuff I have to deal with. I keep trying to push, and I am not sure if I am doing myself any favors.

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