One of the attributes some people receive from prednisone is a mental clarity, perhaps raciness. Mine arrives in the middle of the night. This made waking up in the hospital at 1 am and watching the end of a Tarintino film, the sound mechanism under the covers, by my ears, just magical. Wasn't Samuel Jackson's dialogue brilliant? I would never have that understanding of this screen play if it wasn't on the TV at that moment. And now on to "Kiss, Kiss, Bang, Bang," oh, what a film that I unfortunately decided, by 3am, that I had to stop watching.
Sometimes the clarity led to watching Law and Order, one after another, again with the sound mechanism hidden just below my chin under the three, light, white blankets.
Last night it led to an English muffin and thinking, meditating, about the lessons of this smack down. But not writing in the middle of the night, much as I wanted to. (I watched a PBS on Betty Ford and one on the Hawaiian Representative, Mink, the first woman of color elected.)
As a friend was saying recently, she's learned a lot by talking to friends about illness. This is something that I'm assuming, without much evidence, that women do more than men. And we get hints on what actions we might take, clues, support, good advice. I suppose that the web now provides a lot of information that many people search.
In trying to figure out what I've done, what I could have done, I have to start with the first signs of this smack down that I profoundly noticed, but didn't take to the doctor. I could have, actually should have, said, "Something's going on here. Let's do a colonoscopy." I didn't.
But, after the smack down, I acted as quickly as possible, annoyed at the Monday holiday, and worked hard to convince him that it was the colon. I was afraid he'd want to do every other test, also, and I wanted some control in pointing out the direction.
Control. That's the word. I'm not on the slippery slope yet, but I totally lost control. Of almost everything including those precious bathroom habits and the need to eat. That's frightening, especially to someone who experienced so little control, so many effects of this disease, in early teenage years.
Lack of control has been my watchword, in many ways, as I careened along, making choices that almost always brought tasks I wasn't capable of managing, though I certainly pretended to be able to tackle them. The great pretense of the adult child of alcoholism.
I know I lost a dear friend over the last few weeks, and have learned NEVER to mention names in this blog, by talking about the ride to the colonoscopist. I have never gotten into a car, or almost never, without thinking it dangerous and imagining an accident. I'm phobic, sure this is born of being a person who rode with a drunk father, weaving too much, and lived in a house out of control, in frightening circumstances. The driving was probably the only fact I could hang onto because the other dangers were vague, explained away by a man who said I needed to have more sympathy for what the first step-mother had suffered as a child.
Being in control is a car, being a passenger with a driver who is cautious and slow, especially when I haven't eaten, am so sick, frightened, and preparing to lie my pants off about how much of the medication I'd taken to get into that examining room and get my innards looked at, was something I needed desperately. I apologize profusely for complaining so nastily when I didn't get it, not that it will go any good, and regret the loss of this person who has done so much for me. I don't expect forgiveness is in order.
I learned, in the hospital, not be be terrified of blood being drawn, a habit I'd retained for years, always feeling anxious. It's just blood being drawn and that person is trying her best. (Yesterday the woman, who is so happy with the job that she's had three years, and has an eleven year old, did mine at the doctor's office without more than a prick. Her cabinet is decorated with little stuffed cats that one of her patients brings her every month.)
It made me wild to be told that surgery on my colon was a possibility. I know that doctors now have to give the various possibilities, but by the time I learned this for the third time in the hospital, I went nuts, asked for doctors to be called, told this nice third-year resident who is going on to a geriatric speciality, that I was bullshit, didn't want to be told this again. That I needed positive encouragement (I must have learned this from my daughter!) and she promised to put a big note on my chart. The doctor who had told me this twice (after my specialist, about to leave on vacation, had also told me by my bedside), thinking I had asked, apologized. Actually, he was one of my favorite people, wearing a ski vest, kind and unassuming. I'd take him as a doctor anytime, except at that moment. He wasn't a gastro doctor, who appeared later with every promise to protect me. And he did.
I certainly regret being so cross with Krissy and Chris who just couldn't provide anything that I could eat when I was trying the medicine I stubbornly demanded, not wanting prednisone. I was like the queen rejecting food after a few bits, certain it was because it had been cooked too fast, wasn't moist enough. I can't imagine what it was like watching me get worse and being unable to do anything. Clearly I let that go on too long. Clearly. I was so sick I couldn't stand the smell of anything, especially the dogs, but certainly food.
I was terrified, to the point of palpitations, of thinking about the hospital. I couldn't imagine it as a positive place that would offer a protective shield, kind care and solutions. I was in negative over-drive and full of terror. I'd had one blood transfusion for ulcerative colitis when I was a teenager, taken by the step-mother to Chicago for one of her long visits to her second husband who never knew she was married to my father. The hospital was my respite from that situation, the colitis stopped immediately, but the transfusion was hideously painful and no one could help with that.
I know that certain people have specific skills. For some reason, my ability to accompany my Cuban friend to the doctor a year or so ago was a gift to him. I am calm in those circumstances, was capable of waiting during his long bathroom runs, listening to the doctors, providing some background, listening to his complaints and much horse talk. It was just a dove-tailing of my particular ability with his need.
One friend has been able to dovetail her calm ability to come into this embarrassing chaos that has gotten even worse over the last two months and pick up things, do the dishes. She is waiting for a knee replacement, so my steps upstairs are hideous for her, but she can bend down with no trouble, and has come over twice, hung around for forty-five minutes, chatting and washing dishes. (I washed some in the middle of last night!)
Other friends have wanted to do errands, and I've refused because Krissy and Chris are so able, it's so easy for them to get in the car and snap something up, while for some of my friends, the sheer effort would be fifty times greater. So it must have felt as if I'm ungrateful, incapable of asking for help, rejecting their kind offers, but when you're so sick, you have to take the easy route and that's the young people downstairs. (I apologize for seeming so ungrateful.)
Yesterday I left for the doctor's at 8:15, was in the waiting room or office until 11, got his blessing that this is a slow ride that is heading upward, that I look much brighter than I did at the beginning of this trajectory downward, and that I have to go slowly. My appetite will improve, he promised. And by lunch time, as I dragged after K. and C. toward the restaurant, it had. I had a meal, delicious.....a real meal, in a tavern-like thing, the 8/10, in Everett. I have a photograph to prove it. I was up until 2:00.....able to get down hallways, talk to a doctor with my list of problems in hand, have blood drawn, ride in a car, give directions to poor C who agreed not to take the highway because I'm phobic. What patience. And I could creep along the sidewalk after them as they joked about getting to the restaurant long before me and ordering before I peered in the door. It was raining lightly and that felt wonderful.
I had been disconcerted by the hospital release form that said I was capable of resuming my life. Since I so welcomed the wheelchair ride down to wait for the car, I knew I was no more capable of resuming my life than I had been at the beginning. I was better, but weak. Very weak. (Perhaps I left a day or so early because the new woman in the next bed was so seriously, seriously ill. but the doctor's thought I could do it.) How had I failed? Why wasn't I like that nice little, lady in her eighties, who'd come in for a test and been admitted, so sick, but who skipped when she was released? (She still has many tests to go to find the reasons for her malady, but she was being driven back to the cape by her boyfriend and going to watch the ducks and birds at the many feeders he'd set up.)
I don't know how many friendships I have left. I have to go about strengthening them. And am thinking optimistically about the next ten years, which is where I was trying to start off five or six months ago. Try again. It's been fascinating. Hard. Frightening. I hope I've learned some lessons. Proactive is crucial. Faster proactive. Even faster. I'm grateful. Tired. Hoping I can teach on Monday. But before that, that I can walk around the block.... I haven't walked the dogs since the middle of February.
I'm still not back to reading blog. But I'll get there. Thank you all.