I woke up this morning feeling blue. I'm tired--tired of growing ever weaker, tired of everything being such a struggle, tired of "being brave" and "handling it so well" and all the other things people tell me I am doing. It's funny--for the person who dies, just suddenly keeling over and dying in an instant is probably the easiest way to go, but hardest on the survivors. Conversely, dying slowly gives the survivors lots of time to work through their feelings (although the death still comes as a shock), but it sure is hard on the dying person.
Lauren arrived to check me out and I told her how blue I was feeling, so she started out with a hug. Hugs are always good. She and the hospice medical director have decided to try me out on a form of long-acting, time release morphine, a pill taken every twelve hours, to see if that will regulate my breathing and occasional pain better than the short acting liquid morphine I've been using. I'm going to start it on Sunday and she will see me on Monday morning to see how it's working. I've been good about doing breathing treatments and it really has drastically cut down on the amount of coughing I've been doing, so it certainly is worth the jitteriness that I hate.
Marie arrived while Lauren was finishing up. It's cool and rainy again so we couldn't sit outside, but Marty set things up in the dining room. Marty is definitely not a morning person, but he went out to the bagel place (which has genuine New York City H&H bagels), only to discover that because of "production problems in New York" they were out of a number of varieties, but he did get onion, sesame, poppy, and egg. He had two kinds of cream cheese (chive and plain), sliced onions, and sliced tomatoes, along with a pot of tea, so it was quite a feast. We ate and talked for awhile until I was too tired to sit up, at which point we moved into the living room and Marty brought in my chair from the porch (which he thought might be too wet but wasn't).
We then had a long and fascinating conversation about spirituality (I usually describe myself as "the least spiritual person I know," which Marty is skeptical about). One of the few experiences I have ever described as spiritual occurred in Helsinki in a church carved into solid rock ( www.galenfrysinger.com/helsinki_stone_church.htm) a beautiful, peaceful, unadorned space with incredible acoustics. On the day I visited there was no service and the organist was practicing (he actually asked me if I minded!), and I just sat there and let this incredible music wash over me.
Picking up on my feelings of being blue and tired Marie asked whether I saw any meaning in my suffering, and wondered whether I had ever blogged about it, so here goes. I know some people believe that everything has a purpose or is part of god's plan, which does nothing for a confirmed atheist like me. My dad, another strong atheist, used to say that if you need any proof of the non-existence of god just visit a children's cancer ward, and I agree with him. So I don't see meaning in all this exhaustion and struggle, and I'd just as soon have it over with.
Marty is planning some outings for us. Tomorrow may be the one nice day in a bunch of rainy ones, and if so, we might be able to get to the carousel at Nantasket, and he says he's been searching for other interesting things within my abilities. He is so amazing, taking care of me not just physically, which is hard enough, but trying so hard to cheer me when there's not much to be cheerful about.
Marty and Marie also talked a lot about his experiences in Israel and how hard it is to work for peace in Israel and Palestine when it is such a minority position; so similar to my work countering the "conventional wisdom" of mental illness as brain disease. Both of us feel compelled to do this work, and for me it's so good to know that so many others are picking up what I am having to put down.
When Marie left I came back to bed (Ann having made up with fresh sheets, which always feels so good) and I slept for an hour. I wish I could say I feel refreshed but I still feel tired.