I am entering the hospital again this morning. After back-to-back pneumonias over the past few months, with three different rounds of antibiotics, my chest x-ray is now clear but my oxygenation has deteriorated to the point that I have to stay on the BiPAP mask 24 hours a day. The visiting doc says he is out of options and wants tests run that can only be done in the hospital. Transport there will be brutal, as usual. I am an indigent patient in a Republican-controlled state. Hold me in the light. I will update as possible.
Showing posts with label Personal Update. Show all posts
Showing posts with label Personal Update. Show all posts
Tuesday, May 5, 2015
Sunday, May 20, 2012
FAIRY BREAD
Thanks to Tammi's valiant efforts to keep the fridge and pantry organized, I now have a chart I can refer to when asking someone to locate an item. But that has not taken care of the problem. This morning, when asking the fill-in attendant to create breakfast and lunch, I kept track and she spent 22 minutes claiming certain items (tomatoes, already cooked pancakes, bread, roast beef) were not there.
In particular, she kept digging into the freezer, which is something Debra also does, not being to differentiate between fridge and freezer. I've learned to hear the difference in which door is being opened and kept shouting "NOT the freezer, the baby carrots are in the FRIDGE produce bin!" In each case, I would not relent and began insisting she bring me, for instance, every item from the produce drawer or every ziplock with a leftover in it. Then, suddenly, she'd be able to "find" what I was asking for.
I don't know what else to do. I had canned chili for dinner last night and saw Debra's face light up when I asked for that as dinner. It wasn't thoroughly heated through, but whatever. I feel like giving up on eating fresh dinners. Tammi is already worked to the max. She left me with prepared food which others have either trashed or spent an unconscionable amount of time denying it was there. I try to just be grateful I am eating at all -- three years ago I could only afford to eat every other day, and when I lost mobility, for six months I ate only from packages. Things have definitely improved since then.
Honestly, it does stir up being a hungry, helpless kid. I reacted then with anorexia, funneling my food to my little brother so he got enough, refusing to take a full share so maybe Mama would eat the leftovers on my plate instead of smoking cigarettes to kill her own hunger. It's insanely hard emotionally for me to ask for real food.
One time Daddy's check didn't come (we later found out because he had cashed it himself and decided we could wait until he came home with it) and we ran out of anything, even beans or greens from the garden. Craig went to stay at a friend's house, Mama holed herself up in her bedroom with books, and I was left to deal with Bill, who was five at the time. I was nine.
We slipped around the back of a few house to the orange trees of an old man who let them rot on the limb, and I picked a box full of them. Back home, whenever Bill began complaining about hunger, I'd peel or slice an orange and make up stories about what we were eating (venison brought down by Daniel Boone's gun, hard tack on a ship sailing around the Horn, space grub on our flight to Mars). As the days wore on, it got harder and harder to distract him, and then he got diarrhea from nothing but oranges. At the end of the third day, Daddy came home and Mama emerged to have a huge fight with him. As they raged, I took Bill out to Daddy's car where there were always cheese crackers and Tom's peanuts in the glove compartment.
But I can no longer afford to skip meals. Indeed, it is now past time for my own lunch. Have to take a sugar and eat a couple of bites. Once I do that, the hunger kicks in and I can eat normally. Pushing through usually does the trick.
Except when Margot is here, I don't have to use any tricks at all, or worry about food in any regard. Not yet resigned to her absence. Gimme a couple of weeks.
Friday, November 25, 2011
PERSONAL UPDATE
Or the antics of your furry rumate, of course.
It is that time of month to worry about rent, and I have more disconnect from the world than usual because almost all I see out there is a focus on shopping. (Not among most of my community, which is a relief.) I am trying to figure out how to do a fundraiser, since my immediate care expenses have gone up, Margot has overextended, and I need some extra help. Payment for a complete blood work-up to see what is going on with me before Medicare kicks in 5 months from now (at least $400) and yes it is either out of pocket or I call 911 for a stay at the hospital, which has risks I am advised against. A small generator to stash in my closet against power failures, or else I'd have to evacuate to a nursing home I might not get free from. Eventually a spare twin bed (rollaway?) against future visits from M or others. An extra set or two of good twin bed sheets to make up for those Jenny4Jesus mildewed -- ditto cheap bed-pillows.
Plus the DME upgrade which has cleared my skin issues but costs an extra $150 per month. If anyone has FSE funds they want to spend before the end of the year, I can send you privately a list of what eligible items I use monthly.
I woke up, though, thinking about Dinah's transformation. Perhaps it's merely Margot Majick of the same sort that makes my days joyous. But M says she thinks Dinah is responding to my new sense of security and peace -- now that Dinah doesn't have to Worry About Me, she has the room to explore affection instead of vigilance. If that is so, I feel so badly about what I have put that little kitteh through.
The fairy lights on the new timer come on more or less shortly after noon and go off at 7-ish. Not what I set it for but I need better eyes and hands to recalibrate it, and I am fine with it for now. Their colourful emergence each afternoon reminds me Margot has occupied these rooms with me, she has keys to the front door now which are on her keychain that jingles with the bells from collars of all the cats she's love, including now the bell from Dinah's collar. (Since Dinah is her kitteh now, too.) Margot has filled these rooms with the delicious scent of her cooking, we have slept and watched each other sleep in here, made passionate love, shared meals, pored over photographs, wept and talked and laughed without limit.
This room has stopped being a prison and is now a shimmery rainbow doorway. No wonder I need to sleep more to understand it all.
Tammy told me she feels reassurance and hope every time she comes in the door. What a great thing to hear.
Monday, November 21, 2011
2011 HOLIDAYS
My Thanksgiving plans are small-scale and in the comfort zone between avoidance and obligation. It was never a reliably "good" holday for my family, I care not for other folks' turkey nor any version of pumpkin pie, and since I had ancestors both at Jamestown and Plymouth Rock, I am not willing to forget what our arrival did to my other ancestors on this continent in the name of giving thanks.
So that day I will have my usual attendant care (they never get holidays and laughed gaily when I brought it up) and gladly not deal with family of origin. I plan to eat a midafternoon feastette of pot roast and gravy, mashed potatoes, spinach, cranberry jelly, and when I can return for dessert, pecan pie. Dinah is disgusted about the lack of a bird carcass but I will share freely of the pot roast, so she will get by somehow.
I do love cornbread stuffing, and REAL sweet potatoes (mashed with butter and cream, no sugar and jezus christ no marshmallows), and my Mama's cherry pie. If you want to drop any of those by, I'll eat some. Otherwise, I will bemoan the drek on TV and wait for Margot to get done with a regular workday for our impious skype. And be glad for the community I gathered for myself.
Sunday, May 15, 2011
WADING
(Photo at the edge of the Lea Marshes, London, taken by Margot Williams, April 2011)
I am living still in an altered state of "Be here now" body anchor and "Dream it forward" recovery, a swaying hammock that requires constant adjustment. And unlimited patience. I keep making 100 day plans, and at each new draft, there is definite movement but never as much as I had wanted. At those times, I have to staunchly resist the pull to Blame Self as best I can. Or blame at all. Blame is how my father glided through his oblivious life, and I want to do more than survive as long as he did, stepping over the bodies of those he claimed to love.
But Mama's pattern, of trying to assume responsibility for what which she could not change, is equally murderous. It is the lesson of being a girl in this country, and if you did not have it lacquered in thick coats onto your spirit before you were even a year old, I do not think you can truly Get It. It's a conditioning my generation, at least some of us, wake up to wearily every morning and mark the new perimeter, like a personal glacier's retreat or advance, so as to know our task for that day.
Has nothing to do with hormones or what attire we put on -- those illusions do not buy respite. Not for me. Not for Margot. I buzz my hair, she grows hers to below her ribs, and we are still both reacting to girlhood messages about female = wearing your hair for others. The Male others and their sheriffs.
Intimacy with another woman is a revolutionary act. It defies the most cardinal rule of the patriarchy -- Do not prioritize that which we call female. I don't mean love: "They" claim love for us. But here inside, we know what real love breaks down to, and thinking well about another female, valuing her intrinsically, is the act that threatens all the foundations and sets then whistling for the harriers.
The folly of the patriarchy is to try to control the Mississippi at all. The defining river of North America has traveled where she needs to for millenia, but within my lifetime men decided to stop its western advance -- because how can you own property near a force of nature otherwise? So now they are opening the Morgansas Spillway, saving New Orleans (this time) by flooding Cajuns. The hierarchy is always written plainly on the wall. Now that the Ninth Ward has been emptied of blacks, New Orleans is valuable enough to spend money on future lawsuits and a few insurance claims from those who will be under 25 feet of water by this time tomorrow. Blacks and Cajuns are both expendable. just at different points on the scale. But that difference is exploitable enough to get the Cajun vote for David Duke and Bobby Jindal.
Look deeper, bigger. See what the original watercourse was and get the fuck out of the way of her path. Women have always loved each other this much, when we could. I feel raw and uprooted only because I grew up with Boys running the world. I stand in rising waters that are from a broken dam, and I breathe, refusing to panic. And I have a strong hand firmly in mine, someone who for two years has not faltered with me, not once. A girl-hearted woman who keeps saying "We ALREADY have it." I stand on submerged granite and build leg muscle back. And think of the poem by Louise Glück:
THE UNDERTAKING
The darkness lifts, imagine, in your lifetime.
There you are — cased in clean bark you drift
through weaving rushes, fields flooded with cotton.
You are free. The river films with lilies,
shrubs appear, shoots thicken into palm. And now
all fear gives way: the light
looks after you, you feel the waves' goodwill
as arms widen over the water; Love,
the key is turned. Extend yourself —
it is the Nile, the sun is shining,
everywhere you turn is luck.
Friday, April 29, 2011
APRIL UPDATE
Yesterday after lunch I got a message from Betty at HAND (the agency which provides my caregivers) saying they had received a list of names who were due to be terminated from Medicaid by DADS and thus would be removed from paid care. My name was on that list. It was set to go in force n Monday.
Kids, I went off the deep end. I called my careworker at DADS (V., who is being replaced by a new woman, C., who has not gotten in touch with me yet) and the potential new aid program, and also called HAND back, and received only voice mail. "Please leave your name, social security number, and a brief message, and we will get back to you within one business day.'
I blazed out an email to Margot, whom I knew was at a piano lesson, and called Ixchel, where I also got voice mail. My MoW lunch was still on the table, uneaten, and because of a late start, I’d not had breakfast either. But now eating was out of the question. And I had that pounding headache.
Ix and Margot got back to me almost simultaneously, and it was a one-two punch of the Justice League. Ix bore witness as I freaked the fuck out, and Margot gave crisp directions about what to do next, darling, using all the middle class smarts I have tried to acquire but which desert me in emergencies, still – I still go into a raised-poor huddle, “figure out how to live without, because They don’t give a rat’s ass”. A lying voice in my head Ix knew was there, if I said it out loud I would recognize it as a lie as well.
I emerged able to think again, at least. Scared but not frantic. *Surely* it was an error. I looked for the emergency numbers Margot said would be there, called all those and left voice mail messages, and then reheated my lunch, ate it and felt my blood sugar revive.
I called the first round of folks again and this time reached Betty, who gave me another couple of numbers. One of these finally put me through to a live woman, a receptionist, who said all of DADS was at a daylong unit meeting that would last until 5:00, they would probably not call me back until tomorrow and even then it would be my new caseworker. She offered to look up my case on the computer but I suddenly could not remember my social security number, nor could I find the place where it is stored on my computer. An indication of how frozen my brain gets. She was nice but said my best course was to wait.
I drank some green tea and turned on Jeopardy, my standby relaxation show. I was shouting answers at the screen when Dee my attendant arrived. I told her about my dilemma – what if this was the last weekend I had her coming in the door, calling out to my cat Dinah “Girlie-girl, where you at?”
She grinned cynically and said “They do that to folks. It paperwork, it ain’t real. Happen all the time. You’ll be okay.” Which was like a warm blanket dropped over my shivering hide.
At 5:05 the phone rang and I said to Dee, “Grab it quick, I need to answer that.” It was V., saying she had noticed my name erroneously on a termination list two weeks ago and had dealt with it, dammit. She looked me up as she talked, and sure enough, I was current in the system. She renewed me earlier this month. She said to tell HAND that and not to worry, repeating firmly “You are NOT going to be terminated.”
Dee and I cheered, and Dinah came to see what all the ruckus was about. I fired off emails to Margot and Ix before we resumed my evening routine.
But my poor little adrenals were depleted. I ate a large dinner, watched Grey’s, talked with Margot and went to sleep early.
I cannot go back to how it was before, I can’t. Social services are saving my life. There are so many people like me out there, hanging onto a rope that the fucking Teabaggers are holding a blowtorch to. Living in the kind of fear I felt yesterday makes people stupid and cold. Corporate tools. It IS a calculated war being waged against us, never doubt it.
And I am lucky because I have community, I have brilliant and connected folks on my side, I have Ix and Margot for fucksake, I will not get sucked down the drain. But what about those good people out there who are not as lucky as me?
I know you are, each of you, already doing whatever you can. I am simply giving voice today to what it is like from this end. Voice and thanks, ardent thanks. Weepy thanks. A FB friend said this morning I am ferociously loved, and that is it, exactly. And I love you back ferociously. We are not simply an army of lovers, we are also an army of lions. As They are about to discover.
Friday, March 12, 2010
BREAKING THE FAST
I was reading Konagod's blog just now and his jonesing for french fries because it's been over a week since he had solid foo. I thought to myself "I went 10 days without food during the gut explosion incident." I had to go look at a calendar to make sure I wasn't mythologizing myself.
I got a grocery delivery the early evening of Sunday, Oct. 11. I was anticipating its arrival because I was hungry, had gone more than a day without food, because I had no money and no way to go get food on my own. The first thing I did was sit down and eat a handful of tortilla strips with some spinach dip and a glass of orange juice -- enough to give me quick, healthy energy. I saved the rest of my hunger for a real meal and began trying to haul the bags of groceries to my kitchen. That is when the final hernia rupture took place. I left perishables on the dining room floor and went to lie down from the sudden pain, hoping it would subside as it had before over the preceding year.
And, of course, the reason why these episodes of severe abdominal pain and vomiting had gone untreated by me for a year is because I had no insurance, no money to pay for an office visit or even to get transportation to a health facility. I didn't know what was wrong with me, had guessed it might be my gall bladder and so was trying to address it with a diet revision. I had not an inkling that it was two hernias slowly extruding through abdominal muscle and strangling my colon -- nor of the carcinoid tumor sitting like a time bomb in my appendix.
Lying down didn't help. I began puking every 15 minutes, and at midnight gave up on working a shift that night but couldn't get to my computer or phone to call in. I had water and gatorade by my bed, and tried to stay hydrated by sipping at it periodically, but vomited back up anything I swallowed.
Things get hazy after that. All my memories are of agony in the dark, but it couldn't have been dark all the time those two days. I know for a fact that I called EMS at 2 a.m. on Wednesday, Oct. 14, and since I had to get to my phone anyhow, I composed an email to Jesse giving all my passwords, emergency info, etc -- don't know how I did that, either, but the email is there.
I think I called Jesse, too, but I don't remember talking to him. Somehow I found and put on clothes that were nearby. I couldn't get to underwear or my shoes, so I greeted the paramedics without those items. Didn't have my wallet, either, but I was on sheer mercy by that point. The only thing in my pocket was my front door key. I didn't say goodbye to Dinah. I had no idea I'd be gone three weeks -- time had stopped for me.
Why I finally called the paramedics, instead of dying in the dark, is that I prayed to my mama. I had been trying to find a position where the pain would let up just a fraction, enough to give me a minute of rest. I think I said out loud "I'm in trouble this time, Mama. You gotta help me." And instantaneously the pain got much, much worse. I interpreted this as her saying "I can't help you, you have to ask somebody else." So I did.
I was at the ER by 3 a.m., where the angelic Lisa gave me Zofran and Dilaudid, erasing my agony within seconds. I remember being transferred to the 2nd floor only because of the nurse who was there, who kept calling me baby girl. That nurse is who tried to pass a nasogastric tube through my right nostril. Her attempts were not working, and when my right side was bloodied amd she was switching to my left nostril, I took the tube from her and did it myself. A feat I'm not likely to ever repeat, but it earned me a lot of street cred on that floor.
The NG tube began pumping out copious amounts of green gunk, more than seemed possible. I had an internal lake of backlogged bile from my halted alimentary canal, and removing it vastly helped my nausea. But they decided to let that process have a little time to work, keeping me on a push IV. The NG tube and oyxgen began drying out my mucous membranes. I remember I had five tubes and/or monitors in me because Jesse and I joked about me being "Five-Line Girl".
They gave me a tightly rationed amount of ice chips as my mouth and lips dried out. It became difficult for me to talk, and my lips began cracking. I wanted liquid, but I was vehemently not hungry at that point. It was fine with me if I never ate again. Eating meant vomiting. You never quite appreciate the miracle of your digestive system until it completely quits on you.
I had a couple of Dilaudid days because I also can verify I didn't have surgery until the early morning of Friday the 16th. I have a crystal clear memory of being prepped in the surgical suite, the older and extremely competent nurses around me, feeling beyond fear because it was get fixed or die. I also remember waking up, a calm dykey looking nurse telling me "All good, you wanna call anyone?" and me moving my body to see if there was any pain, but she was right, it was all good. More ice chips until I passed gas, then had a BM, which took three days.
The dryness of my mouth started making me miserable despite the Dilaudid. I was also hallucinating my ass off for a couple of days, which I kept to myself, not even telling Jesse. I saw ghosts in my ICU room 24/7, walking in and out the walls, and I decided they were hallucinations, not real ghosts, because one of them was a little girl in a long dress and a bonnet but that hospital was too modern to have an old-fashioned ghost like that, so it was all in my head. They were some sort of company and I didn't mind them much.
Once I started having BMs, though, the ice chips and IV were not enough, I was craving water, milk, juice, soup. It was on Wednesday the 21st that the tech finally got permission to give me something besides ice chips. Veronica, that was Veronica, I adored her. Hard-bitten and expert, teased me a lot because, as she put it, I was the only one in that ICU section who wasn't out of my mind. She came into the room holding a massive rainbow-striped popsicle, all artificial colors and fake sugar, the kind of thing I'd never buy for myself. But it looked like glory at that moment. She unwrapped it for me and I took one bite, then moaned, which embarrassed us both. She sneaked me another one before her shift ended.
I got sick of the popsicles within two days, so it was at least another two days before I got progressed on to lemon jello for a day, then finally beef broth which was truly excellent, they made it from scratch there in a real kitchen. Anyhow, it was 10 days without anything but ice chips, and another five days before I got the beef broth. But I was on Dilaudid most of that time, which makes it a lot easier, Konagod. You have my sympathy fer sure.
[To read Jesse's posts here as this all unfolded, beginning on October 14th, read Maggie Jochild In Hospital For Major Abdominal Surgery and then proceed forward. Eventually I was able to write as well and Jesse took those posts as dictation, got them up for me. Then Liza sent me a netbook at the hospital and I was back online -- that netbook is my lifeline in bed now, is what I use to write this and everything else. I have food and meds, rent and utilities, only because people send me money each month. Most days, I find joy in being around. Thank you for keeping me.]
Tuesday, February 9, 2010
ADVENTURES IN GRAVITY
We all have worst nightmares about our bodies -- what we think maybe we couldn't bear happening to us, maybe wouldn't want to survive. These fears are cliches in melodramatic screenplays, the dancer or athlete who loses their legs, the painter who goes blind. We're assumed to understand, on a gut empathetic level, how tragic physical loss is and see those who face it as inspiring.
But if it isn't quite so photogenic or melodramatic, we look away. Or if we can "blame the victirm", well there ya go: Gary Busey was asking for it in a way Christopher Reeve was not, right?
And because we know we're supposed to be ashamed if we're closer to the Gary Busey end, we're supposed to be contrite and hungry if we're poor, and we're supposed to get better. If we're losing ground, we know we should go silent.
I'm fighting all those internal voices as best I can. Every day.
Having had lifelong asthma and undiagnosed but limiting orthopedic issues, I've not had the dread a lot of folks carry about losing physical function. It's no fun but it's not particularly soul-inhibiting to not be able to do all forms of mobility. The nightmare I nursed was losing brain function, memory, communication ability -- all of which occurred in 2000 with the anoxia during my knee replacement surgery. It took me almost a decade to get over that actualized fear enough to face another major sirgery, which happened in October (no choice about it) with only the typical postoperative mental effects.
I'm still certain I'd rather check out than live without my fully functional mind -- I/we get to define ourselves, and for me, my brain as is remains the deal-breaker. I have some safeguards in place to keep me from a Schiavo existence, but of course there are no guarantees.
With my physical decline, however, I developed another subterranean fear, that of falling down and finding myself unable to get up by myself. I became aware of this fear the Thanksgiving after my knee replacement, when I went to eat with an extended clan of Texas yellow dog Democrats and wiccans. I sat in a rocker that was a few inches lower than my leg muscles could actually render me upright from. When it was time for me to go, I had to be shouldered to my feet by two pot-bellied hippies who smelled of weed and cranberry relish. I became very careful about where I stepped and sat down after that.
I guess I should be proud I went a decade, then, without a mishap.
Last Thursday I had a physical exam scheduled by disability services. It's impossible for me to get anywhere without serious help. Not long after I got home from the hospital, a gay man named Sheldon wrote me an e-mail offering help. He's a radical pagan cat-lovin' late boomer who lives west of Austin with Win who writes the Konagod blog I enjoy so much. Sheldon has turned out to be a real buddy, someone I enjoy intensely. And he's literally saved my life.
Sheldon got me to my doctor visit in January, which was a serious ordeal. I keep rediscovering how weak I am now. He's a natural at noticing pace, bearing witness, keeping company, and not doing more or less than I ask of him. Other crips will instantly know what I mean. I can relax around him even as I am in extremis.
So I asked him to get me to the disability exam, which I anticipated would be an even harder challenge. He said yes. That morning I got cleaned up and began making my way to my wheelchair in the living room, because I had clean clothes and shoes next to the chair and I planned to dress sitting in it. I was using my folding walker to get through a narrow spot and turned it sideways, then leaned on it sideways. Mistake.
The walker collapsed on itself, going down underneath me and managing to entangle one of my calves in the process. There was enough room for me to land on the floor, but that was it -- no space to roll over, I was wedged between immovable surfaces. I was on my stomach, naked, and getting to my knees was out of the question.
Help, I've fallen and I can't get up.
I wasn't hurting more than usual -- I was extremely lucky that I hadn't blown a joint on the way down. I was even more lucky that Sheldon was on his way to my house. I kept trying to shift, to find some way out of my imprisonment, until I was exhausted from the effort. If Sheldon had not been about to arrive...well, you can guess what kind of trouble I'd be in.
My cat Dinah came at a gallop. One thing that's always been true about Dinah before that day is she has an abhorrence of touching bare human flesh, avoids it with revulsion. She meowed interrogatively at me and I said "Kitty girl, I've done it this time. I'm in trouble here."
She walked down my bare back and stood on my big white ass -- Mount Jochild, as one friend has referred to it -- while she began yowling at the top of her lungs. I kept trying to reassure her but she wasn't listening to me. In retrospect, I'm certain she was calling for help. She didn't shut up or lower her volume until Sheldon knocked at the door, and even then our first shouted exchanges through the door were over her continued hollering.
I'd had a few minutes to consider my options. Sheldon didn't have keys to my door, but more significantly, I have a keyless deadbolt that was engaged, meaning no one could get in even with keys. I yelled this to Sheldon and told him he'd have to call 911.
Which he did, and they told him to get my apartment management to bring what keys they had. After a few more minutes of nude floor contemplation, I saw a flashing red light and paramedics banged on the door. Dinah vanished at that point, her work done. I yelled to both Sheldon and the paramedics that I was naked and I didn't want to be exposed through the door to whoever was gathering outside, just the rescue folks. They said they understood.
A maintenance guy from the complex who is always tracking people's comings and goings is who brought my spare keys. As predicted, the door wouldn't open. Paramedics began banging on windows, and finally got a lock on the living room window to give. A guy squeezed in and turned the deadbolt. I repeated my request that my nudity be shielded as the first paramedic came in. He and Sheldon both told the maintenance guy to stay out of view. Instead, he pushed through a view spot so he got a long look at me.
I saw him and I pointed at him, screaming "Don't you dare look at me, you creep!" He went away after that. I don't know his name but I've seen him on my patio looking in my windows twice in the past. Something I'll now have to deal with. Problem is, I think he's married to one of the apartment managers and my tenancy here is somewhat tenuous because of disability issues.
I was so mad for a day afterward I wanted to do violence to him, feelings I simply don't have very often.
The paramedics came in, intelligently assessed the situation and my limits, and started the process of getting me upright. The first attempt tore at my left rotator cuff, which took a couple of days to heal. On a second dead lift, they got me into my wheelchair. I heaped thanks on them, their burly sweet majest. I declined a trip to the hospital, saying "I'm actually due to go for a disability appointment right now." One of them grinned "Well, ma'am, you surely deserve it."
I dressed myself, shaking violently, and somehow Sheldon got me to his car. He had checked in with my disability exam office, and they had my appontment down for an hour later than the forms they had mailed me, so we had a miraculous pad of breathing room. I ate the Big Mac Sheldon had brought me -- few things have ever tasted so good, and I don't even like Big Macs especially -- but my shaking progressed on into rigors.
I made the exam, which was arduous and strange. My BP was very elevated and my pulse very low. The doctor was distant, insisted I wear a mask because of flu risk, and didn't give me much information. A couple of the physical maneuvers he asked me to perform were unexpectedly difficult, revealing loss of muscle tone or nerve function on my left side that I hadn't known about. He said he wanted me to get x-rays and left the room.
When Sheldon came in to wheel me out, he looked at me closely and suggested I wait on the x-rays, I looked done in. I agreed and said I need to use the bathroom. Turns out, their wheelchair accessible bathroom was blocked by equipment. Sheldon calmly moved things around, muscled me through, and I got onto the pot before having violent diarrhea a couple of times. Afterward, I was too weak and shaky to pull up my pants all the way, and Sheldon came in to do that for me.
I didn't think I could make it from the car to my bed, but I did. Sheldon set me up with groceries and supplies, and offered to come back to help clean my place. He's here as I write this, hauling trash. He brought me take-out Chinese (which I haven't had in over a year) and one of his home-made banana walnut muffins. He and Dinah have met, and she's not hiding from him in terror, a first for her.
I'm getting a prepaid cell this week I can wear around my neck when I use my walker at home. Sheldon now has keys to my house, and I'm still pursuing food stamps and home assistance as well as Medicaid and disability. I am a few inches up from the very bottom of the pit I found myself in. And now I've weathered another nightmare.
I want things to get much, much better than this. I have a month's worth of income left, not even part-time work any more, and my endurance is so threadbare, finishing this post has taken days. But I am not alone. I remember Sheldon's long grey hair drifting over my shoulders as he wheeled me into the fresh air, I have General Tso's chicken waiting on me, and I can still write. Plenty on this crisp day, what would have been my mother's 83rd birthday.
[Cross-posted at Group News Blog.]
Saturday, February 6, 2010
AS WE EXALT ATHLETICISM CHANNELED THROUGH THE ENTERTAINMENT INDUSTRY...
(1) Contestants must have cruciate ligaments of one knee removed entirely, other knee without cartilage or matching end-plate surfaces, tibial and talar surfaces must also meet at diverging angles, and visible bony outriggers beneath skin on both sides of one knee.
(2) Contestants cannot lift more than 5 lb and should not use abdominal muscles (which are not really avaiable for much anyhow) to change position or exert self.
(3) Current venue precludes rotation of left shoulder.
(4) Both hands exhibit strong tremors during fine motor activity.
(5) Some thumb and finger oppisition is limited or delayed, but this is intermittent (at referees' discretion.)
(6) Asthma flares after a minute of exertion.
CRIPTATHLON challenges to include:
Opening shrink-wrap around almost anything.
Opening "child-proof" medicine caps.
Opening juice and beverage bottles.
Transporting any sort of meal from one room to another while leaning safely on a rolling walker.
Tying shoes.
Pulling up pants if skin is sweaty from exertion.
Getting items from floor three feet away.
Filling out lengthy, repetitive forms in longhand because government websites are always down after 8 years of George W. Bush.
Answering dozens of emails wanting a personal response to "How are you doing? What's new?"
Wiping ass. (Bonus points if contestant has had explosive diarrhea.)
I'm due for a Gold medal but I can't get up on the winner's stand. And will someone please raise my clenched fist into the air for me during the national anthem?
Wednesday, January 6, 2010
MIDWEEK UPDATE
("Blue Moon", photo copyrighted to Oak S. LoGalbo)
I had trouble going to sleep, my mind on overdrive. Part of me was occupied with plotting issues for Pya, which is autobahning along on a multithread track and allows no room for fudge or dither. But I've also been standing under the canopy of a PBS docu I saw last week, What Darwin Never Knew, and relocating current issues in my firmament based on the new thinking the show stimulated in me: How to effectively respond to the utter repudiation of the Obama administration of the core values on which it ran; how to deal with a sizable percentage of the population which is functionally deranged from race, class, and gender conditioning; how to survive when I have no income, no health insurance, and no mobility/transportation in the midst of capitalism's collapse. Stuff like that.
Since getting up and going to another room requires an effort of muscle and will that leaves me weak to the point of lightheadedness and a fever spike, my ability to lead, inspire, or even respond is often measured in minims these days. I'm bored with this reality, the current moment by moment journey. It feels like there is no more to be learned from it. I'm old enough to know that in itself is a clue, that appearance of stasis. Oh, add it to the list of what I need to fix, will you?
To quote myself from the finale I wrote for Actual Lives' performance at the VSA International Festival in D.C. 2004: What if I don't get better?
I guess I'll find out.
On the fun-to-think-about screen is last night's episode of The Good Wife which completely tore apart a Glenn Beck/Rush Limbaugh hatemongering TV host hiding behind the right to free speech with the assistance of a liberal judge afraid to require accountability from those who are not journalists but instead are deliberately getting rich from inciting lie-based violence. It was an unequivocal expose of how this form of media among us is destroying lives, trust, and community health -- done with great writing and acting in the middle of a hour-long drama series. Wahoo.
Well, that's all the time and energy I can spare today for reporting. I have difficult items on my To Do list (as usual) and no immediate reward in sight. Except that the motivation is, at bedrock, love of self, and that's a return I can bank against tomorrow. Catch you later, sportsfans.
Thursday, November 26, 2009
THANKSGIVING JOURNAL
(Buttermilk pie)it was a tough night because i was thirsty and i'd run out of all bottled water, juice, or even soda near my bed. bad planning. i'd been up and around the house earlier, pushed to my limit, and the idea of repeating a foray to hydrate seemed too much to bear. (try to get upright with major joint issues, wearing an abdominal binder and not using any abdominal muscles -- it's an olympic event.) i tried telling myself it was about self-love, but even that didn't work.
dry-mouthed, i began watching a pbs docu about the mamas and the papas, and got engrossed in spite of myself. i was struck by michelle philllips' mature appraisal of her strengths and weaknesses, and her unstinting affection for mama cass -- she called her "huge" with a humor that had no tinge of fat phobia. she deftly put paid to the "choked on a sandwich" canard about cass, and outlined the reasons why cass would have gone on to be a superstar had she lived.
(Mama Cass, Mary Travers and Joni Mitchell singing "I Shall Be Released", 1969)
i intended to watch the independent lens docu which followed called objectified, about design, made by the folks who made the excellent "helvetica", but I fell asleep. when i woke up four hours later, i had the will finally to get up and bring liquid back to my nest. i took my hydrocodone for the day, recklessly not saving it for a pain crisis -- i think it will be okay today. i plan to have human conversation, excellent food, and do some writing. it's a day off.
i couldn't eat my threadgill's chicken-fried steak last night; my capacity and appetite are very diminished, and i begin meals with what my body is most craving, which last night was tomatoes and cornbread. this morning after i was hydrated, the cold meat sounded appealing, so i had it for breakfast while watching the start of the parades on TV. to my surprise, dinah offered to share the meal with me. she typically is skeptical about humin fud but she remarked that any dish containing the names of TWO meats was worth a look-see. she approved. still couldn't finish it so will save the rest, although with the other food here, something will probably get thrown out before being eaten. i do have a slice of buttermilk pie (my all-time favorite) which WILL be eaten.
quick question: is anybody else around my age who DOESN'T have joint problems starting to have serious difficulty loosening bottle caps and jar lids?
aside from cass's soaring voice, what else is intruding into my thoughts is the PBS episode of "secrets of the dead" yesterday about the terrorist attacks on mumbai a year ago. i had mixed thoughts about trying to watch it, but now i can't recommend it highly enough. two different set of survivors, married couples, one of whom (an elderly turkish pair) went through unspeakable slaughter which splattered all around them, gave riveting firsthand accounts which ended, eventually, with a version of compassion for the ignorant, terrified young men who were controlled by a remote terror network into becoming tools of murder and suicide. it was so damned good to hear a detailed, NON-American take on terrorism. catch it if you can, and be ready to grieve in a productive manner.
i'm experimenting with a shareware program that will cartoonize and/or make line drawings of photographs. the one i'm trying for free, photo to cartoon, is adequate but i suspect i could eventually make use of a lot more bells and whistles. anyone out there have recommendations to make? i'm not a skilled graphics person and i use PCs, so those are limits to keep in mind. also it must be either free or low-cost; i'll definitely use it for blogging but i can't justify high expenditure for this, all the same.
okay, it's 10 a.m., i'm going to eat the pie now. my daughter worked for amy's ice cream when she was a teenager, and their employee T-shirt was the first place i saw the adage "life is uncertain. eat dessert first."
i'm past the point of dying young and leaving a beautiful memory. i'm planning for happy, meaningful old age instead. that's new, folk. time to turn off this idiotic parade, eat pie, and untie my brain.
[Cross-posted at Meta Watershed and Group News Blog]
Tuesday, November 24, 2009
UPDATE
(Sappho, painting by Charles Mengin, 1877 -- hat-tip to Ian at Dykes To Watch Out For for this image)Thanks those of you keeping tabs and wondering at my silence. It's pretty tough right now: Extreme physical weakness and no nursing help, intermittent diarrhea, and not eating enough -- no real appetite plus making a meal leaves me exhausted. In addition, to get around the hit-or-miss wifi on my bedroom netbook, Barbara brought me a router which I couldn't get set up right for 24 hours, bumping me offline (which some of you noticed).
Good news is the wifi is now working and throbbingly strong, your donations continue to arrive, my incision is clean and tightly knit, Thanksgiving is not a holiday where I miss my family, and Dinah's devotion is striking. So I push on. Facebook is a fun diversion at the moment, as is the early release of Westward IV. I'll write more now that I can get through reliably. Love and cornbread stuffing to y'all.
Sunday, November 8, 2009
HUNGRY
(Maggie Jochild at Bean Hollow Beach near Pescadero, California, i980)HUNGRY
When Liza found out I had lost 85 pounds over the last two years without knowing it, certainly without trying to, she instantly said "No wonder you write about food all the time.' Indeed.
I have been starving in many ways. Fat people are as often malnourished as thin folks in our culture, especially if they are lower income and urban. Post surgery, my electrolytes were persistently abnormal, and they began giving me daily potassium and magnesium sulfate. The surgeon put me on a 2200 calorie diabetic diet -- I don't have diabetes but good insulin control promotes wound healing. I listened to my own cravings and for the first few days of eating solid food I stuck to veggies, cranberry and orange juice, and potatoes plus bananas with every meal. I couldn't get whole grains or avocados, the other items I was jonesing for. The kitchen dutifully limited my carbs but I never reaxhed my calorie limit.
After a week, when I began hard-assed physical therapy, my craving switched to protein and milk, and I ordered accordingly: I was starting to replace muscle. I asked for a comsultation with the hospital dietitian. When she arrived, I told her I wanted to know how to best address the specific malnutrition I had been living with for more than a year, assuming I could afford to buy fresh produce and seriously complete grains as I prefer in my diet. I also asked for a print-out of what I'd ordered through the meal service the past week with nutritional breakdowns I could study.
She had no idea what to do with me. She agreed that living as I had been on a poor person's diet, I should have gained rather than lost weight (my saving habit, I bet, is my inisitence on brown rixe/whole grains). She kept trying to turn our discussion toward calories instead of nutrition. Turns out the kitchen did not keep or report patients' daily meam records, and in the end, she urged me to go on an 1800 calorie a day diet, even after I flatly reminded her that 95% of all weight-loss diets fail and I had only become fat after I began dieting as a young adult.
I told her I loved my body, and after how it had just pulled through for me, ill-conceived calorie counting was not going to be how I rewarded myself for living. She left after giving me a print-out of a diet that relied heavily on white flour and caffeine as "snacks".
Fortunately, just as she was leaving, the Good Doctor came in. He recognized her and asked me how the visit had come about. I explained I'd requested it and gave him a thumbnail of what she'd said. A very nondemonstrative young man, he leaned over me and touched my arm to say "For countless reasons I'd ile to see you thin but PLEASE don't consider dieting, not for months until you are healed." Yet another reason why we call him The Good Doctor.
I stopped dieting during the same general stage of my life when I stopped hurting others via sexual messes. My weight plateaued for a decade, until my orthopedic disabilities drastically altered my mobility and I began living in pain. I gained to another plateau -- partly because in the advice of every expert I consulted, I returned dairy products to my diet. (Kinda need that calcium and minerals when bones are going whackamole.) I'd been the same size for a decade until this recent change.
The second oncologist who saw me this hospitalization, the one called in when pathology of my removed appendix revealed an occult carcinoid tumor, was wise enough to do an exam and take a thorough history of me despite the tumot's clean margins and staging indicating that carcinoma was neither a metastasis nor had it metastasized itself. She understood my level of weight loss, unintentional though probably the result of bowel strangulation and malnutrition, still warranted investigation to consider the idea of cancer elsewhere. In the end, she reassured me that as far as she could see, I had totally sidestepped death. Her face was so delighted: I bet she doesn't get to say that very often.
In contrast, I still remember the sneer on the face of the white gay male physician I saw at the free clinic in San Francisco in 1981 after having been flattened by fever and severe shortness of breath for a week. I was 25, unemployed, and broke, but my roommate Renee finally got me dressed and walked me two blocks to the nearest clinic in the Mission, paying the $12 office visit demand herself rather than let me waste precious oxygen answering their income questions. She also came into the exam room with me, thank g*d, because before even taking my temperature or listening to my chest, that doctor said "So, how long have you been overweight?"
I gaped at him, wheezing audibly. Renee said "She's not here for her weight, she's here because she's burning up with fever."
He turned on her. "Clearly her main problem is obesity, that's what we always see in here." At that point I was at most 25 pounds above the "ideal average" for my height, thick with muscle from walking everywhere.
Renee was slight but a working class Jew who was well-versed in fat liberation. In fact, she was who introduced me to the theory, and I'll love her forever for that fact alone. We shared our household food and she regularly ate circles around me. She stood up and raised her voice to demand that I be examined and treated for what was wrong with me, not given a lecture about obesity. An x-ray revealed advanced pneumonia, and a sputum culture eventually diagnosed me with Valley Fever. Antibiotics cured me and I avoided doctors for a long time after that, until I got insurance and searched until I found physicians I trusted.
Renee and I were in the habit that year of putting Alix Dobkin's latest album XX Alix on the turntable every evening when we got home from our respective jobs or meetings. One of my favorites was the haunting "Separation '78", which begins
Liza, you look more like your mother every day
Counting your calories, my how your body's changed
(Yes it's the same Liza as in my opening paragraph. We were not yet friends, although it's hard to see how we missed connecting back then it seems to have been an inevitability.)
Alix and Liza were lovers who became founding figures in lesbian-feminism, and because Alix's songwriting was frequently autobiographical, Liza's life was very public even when it wasn't through her own art and publshing. Liza was zaftig, buzzed her hair, defied fashion constraints -- including those dictated by dykes -- and had been a role model to me for years by 1981. I understood damned well that if Liza was paying attention to how she ate, it was in no way an attempt to be the kind of slender sex object dictated by heterosexual norms.
I also knew -- all of us who followed Alix's music knew -- that a couple of years earlier, Liza's beloved parents had been killed together in a freak accident. My own mother was still alive, but I felt keenly the poignancy of Alix telling Liza she looked like her mother. Our generation was mother obsessed, positively and negatively. Even more evocative was the fact that "Separation '78" is a love song written about their break-up, again very public. I wept the frst time I heard Alix sing the chorus, with melancholy and hope interlaced:
Going our separate ways
We're on our own
Trusting that only love will come between us
Thus, you can perhaps imagine my shock when I attended a live concert by Alix that year and from the all-lesbian audience came a chorus of boos when she sang her opening lines above about Liza. Alix was visibly startled but far too professional to drop a note, even when boos broke out again at the next verse
Everyone's noticed your new grey hair
Clearly, my darling, I put some there
And my head is carrying its own share
We're an aging pair
After the concert, I talked with one of the women who had booed (not a friend of mine) who said any reference to weight loss was fat oppressive and the grey hair lines were age oppressive. I argued vehemently that noticing changing bodies is not inherently oppressive, and in particular we had every reason to trust the process of Alix and Liza as individuals. Or, to quote a remark Maria Limon made last week when she visited me in the hospital, "Can we just put down the pitchforks?"
I don't know anybody who thinks completely rationally about eating. Or money. Or sex. Do you?
I'm in mid-stream here. I'm hungry for protein as I write this but probably won't go make the tuna sandwich I really want because my pain pills didn't come and that trip to the kitchen might as well be a hike up Bernal Hill used to be. I'll nurse my cranberry juice and wai till morning. At least Ihave this link to you all, typed in my bed on a netbook Liza bought for me and arranged for Maria to bring me in my isolation. Some empty spaces do get filled with just what we need, sometimes people listen and stick up for you and tumors get found in time and love lasts. Let's keep talking. As they say in the crip community, "Not dead yet."
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(Publicity photo for Dyke: A Quarterly, circa 1976; editors were Liza Cowan, left rear, and Penny House, front second from right; also in right front is Alix Dobkin; photo courtesy of Liza Cowan)Saturday, November 7, 2009
DIARY 7 NOVEMBER 2009
(Westward IV screen shot)Last night I watched a rather timely PBS Empires episode called "Holy Wars" about Salah Al-Din and his reconquest of Jerusalem during the Crusades era -- his decision to not slaughter or terrorize the Christian population made him a legend among Islamic and Arabic nations, but cut him no respect from the bloodthirsty Christianists of Europe. Like Bushies, they viewed compassion and respect for others as a sign of weakness.
When you have a nation (and city) where prevailing values are adherence to authority, a narrow and base-emotion definition of patriotism, and limited funding for "social" issues, internal violence will be the norm, not the exception.
Dinah finally left my immediate presence for a couple of hours to sleep, which I take as a sign of healing on her part. I'm still not sleeping more than a few hours at a stretch, related to pain. I myself sorted through some of my feelings last night with Martha, mostly having to do with being at the literal mercy of anybody who walked into my hospital room and having little room to say no or insist on autonomy. People think giving advice to those who are ill, pushing them to "do what's best", telling them stories about their own medical experiences or those of their friends & family, and/or generally assuming their thinking and decision-making is somehow impaired even in areas it is clearly not, are all manifestations of caring instead of actually simply being roadmaps to the advice-giver's own emotional blocks about what is going on -- i.e., "here's my difficulty with your difficulty, since you're lying there unable to get away or go find other resources, let me demand you deal with my difficulty right now". No wonder we can't think rationally about a simple health care plan, when we're all so bollixed up with panic about ever being truly sick and helplness ourselves.
Work on it, people. Work on it with each other, that's all I ask. Just like you work on your crap about brown people with other white folks, and your shit about women with other men.
Dinah has discovered the yellow "FALL RISK" bracelet from the hospital that I ripped off my wrist I got home and thinks it is a great toy.
My stamina is still so hammered, typing this much leaves my fingers trembling to the extent I have trouble keeping them in line with QWERTY. I guess I'm done for the time being, need to go lie down again. Dress your children in bright colors, not camouflage, and remember what Mark Twain said: "History doesn't repeat itself, but it does rhyme."
Thursday, November 5, 2009
PERSONAL UPDATE 5 NOVEMBER 2009
(Maggie and Nilmoni cropped from larger photo, 1958 Kolkata, India)Too long for Twitter, again: Dinah prowled and wailed every half hour all night long. I'd call to her and she'd come at a trot, need extensive contact to stop vocalizing. I had an endless fount of reassurance. I can hardly take in how painful this separation must have been for her. Finally, mid morning, she slept on my chest and then slept two feet away on the bed. Whenever I noticed her eyes opening, I'd tell her how much I love her, need her, missed her.
I found a long-lost cat toy near my bed, which nearly broke my heart -- I can imagine her trying to bring it to me, only to remember I was gone. We played with it for a while. Also have had regular dispensing of treats. Despite her food bowl being empty, she's not lost weight, and she's eaten from the refilled bowl but not ravenously. I think she figured out the big bag of cat food here by my desk was not sealed tight and helped herself, which is a relief.
Early afternoon the news about the shootings at Fort Hood broke into Rachael Ray locally and I followed that off and on, except when KBH or Chris Matthews were on the screen. I can't access wifi in my bedroom on my little netbook and don't have a cord to reach into my study where my main PC is, but at the moment the solitude -- or rather, being alone with Dinah -- is still an enormous pleasure. I need to sleep and dream a lot more. Scenes from Ginny Bates, past and not yet written, keep breezing through my head. They are some kind of palate cleanser for the hospital experience, I think.
I am lucky as Myra (the main character based on me in Ginny Bates, who wins the lottery as well as love). I know much of my luck has faces, names, heartbeats. I am reminded of the poem by my bed, written about in a post of mine at Meta from March 2008:
THE UNDERTAKING
The darkness lifts, imagine, in your lifetime.
There you are - cased in clean bark you drift
through weaving rushes, fields flooded with cotton.
You are free. The river films with lilies,
shrubs appear, shoots thicken into palm. And now
all fear gives way: the light
looks after you, you feel the waves' goodwill
as arms widen over the water; Love
the key is turned. Extend yourself -
it is the Nile, the sun is shining,
everywhere you turn is luck.
(by Louise Glück, from The House on Marshland)
(Dinah above my computer, May 2005)[Cross-posted at Group News Blog.]
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