Monday, May 30, 2005
Sunday, May 29, 2005
Rose has had AIDS for about ten years. We've never treated her with antiretrovirals (the drugs used to stop the virus from replicating) because her mental illness, anxiety disorder, and predilection for Xanax and other drugs has precluded us having a clear shot at success. She has had relatively few life-threatening infections or complications but she is wasting away and we know it. A killer infection is only around the corner. With her itinerant lifestyle and inability to stay in one place and on task for more than a few days, she has been a poor candidate for treatment. Her Hepatitis C is also a worry, but the treatment for that can cause such intense emotional distress and suicidality that she would never withstand it. Her seizure disorder is another issue altogether.
Since I "inherited" her from another nurse almost two years ago, it's been an ongoing struggle to figure out exactly what to do with her. She has dropped out of our program several times and left the clinic entirely, always looking for a doctor who'll keep her supplied with Xanax. Now she's back with me for six months, and I feel like I am battling time.
I have successfully introduced visiting nurse services and Rose now has a daily visit from the visiting nurse whom she loves. By offering her home delivery of methadone (rather than going to the clinic every day), we are assured that she'll be home waiting for her daily dose. Now that this relationship is established, the thought is that we can now introduce further treatment.
Rose is now living in a three-story walk-up, with several of her daughters living upstairs. The electricity for all three apartments is in her name only, so I have had to intervene several times to keep the electric company from turning off the lights due to a bill over $1000. Rose spends most of her days in a messy double bed in the middle of the living room, with the TV on throughout the day. The sparse furniture is old and in poor repair, the apartment almost empty except for a shower seat in the middle of the dining room and some nasty leftovers or other detritus in the kitchen. No cooking happens in the apartment. Her daughter brings her food once or twice a day, at best, and Rose spends the majority of the day smoking. Cigarette burns dot the unwashed bed linens and I know it's only a matter of time before she goes up in flames with the rest of the building. Until recently, Rose's four-year-old granddaughter was living with her in this apartment, ostensibly abandoned by her mother, Rose's daughter. The other daughter who is the most responsible of Rose's children has taken custody of the four-year-old. The Department of Social Services has been called on the family numerous times.
Last week I felt forced to call Protective Services for the Disabled about Rose. I hated to do it, but I felt it was the only way to possibly get other agencies involved and consider taking legal action to put Rose in a nursing home, at least until we can get her stabilized. Although I don't think Rose's daughters are necessarily neglecting their mom per se, Rose's living conditions are abhorrent and are like what you might see in a movie or TV drama. Life imitating art? At best, Rose is self-neglecting, and that is enough to call Protective Services and report her as a risk to herself.
My goal is to introduce antiretrovirals as soon as I can, give Rose some immune protection against deadly infections, and watch as she gains weight and loses some of the dementia that has begun to set in. Whether some of this neurological damage is permanent from the vicissitudes of untreated HIV infection and years of IV drug use, it's hard to say. Perhaps if she stabilizes enough, we can send her to detox and break her Xanax habit. I am not overly optimistic, but I'm determined to at least give a very sincere attempt at suppressing her virus and perhaps prolonging her life, simultaneously putting into place services that might improve her daily plight.
As I sit in my lovely screened-in porch, listening to the many birds in the surrounding trees, the dogs snoring on the rug, a cold beer beside me, a warm meal in my belly, I think about Rose. I think about her life which is what it is, continuing throughout the weekend when my work is on hold and I go about my personal life. It's profound to witness such suffering up close, and it's also profound to realize that that particularly reality is not my own, at least not in this life, anyway. On Tuesday, I'll continue the struggle and see what the next step will be for her, as well as for dozens of others, most much better off than her, several somewhat worse. I take a deep breath of the flower-scented air here in my home reality, and I feel grateful beyond words.
Saturday, May 28, 2005
That said, following are the lyrics to a song by XTC which touches on the idea of subverting the grey and loveless world that seems to be championed by so many these days.......
Wrapped in Grey
Lyric by: Andy Partridge
Some folks see the world as a stone
Concrete daubed in dull monotone
Your heart is the big box of paints
And others, the canvas we're dealt
Your heart is the big box of paints
How coloured the flowers all smelled
As they huddled there, in petalled prayer
They told me this, as I knelt there
Awaken you dreamers
Adrift in your beds
Balloons and streamers
Decorate the inside of your heads
Please let some out
Do it today
But don't let the loveless ones sell you
A world wrapped in grey
Some folks pull this life like a weight
Drab and dragging dreams made of slate
Your heart is the big box of paints
And others, the canvas we're dealt
Your heart is the big box of paints
Just think how the old masters felt, they call...
Awaken you dreamers
Asleep at your desks
Parrots and lemurs
Populate your unconscious grotesques
Please let some out
Do it today
Don't let the loveless ones sell you
A world wrapped in grey
And in the very least you can
Stand up naked and
© 1990 EMI Virgin Music Ltd, London WC2H 0QY.
Thursday, May 26, 2005
But seriously, spring is traditionally a time of cleaning house, both literally and figuratively, and I find myself partaking on both fronts. Exercise, weight loss, careful eating, house cleansing, tidying and organizing my desk at work, closing up shop after a year of teaching, cleaning the basement---out with the old and in with the new. I highly recommend a listen to the song "Sacrificial Bonfire" by XTC on the "Skylarking" album---a song of burning up the old and letting in the fresh winds....
Speaking of music, I have now listed links to musician/band sites that I feel are worth perusing. These are shameless endorsements of some of the music that I like, and also are sites which I feel are worth checking out from a design or content standpoint. The Radiohead site is most interesting and byzantine---there are loads of pages to wander through, some more dangerous than others. I have also added links to various art sites of interest, some of which are digitally-based art which necessitates use of Flash Player or other free software in order to partake.
Loose associations aside, it is a time of year when we await the coming of the summer heat (at least in this New England of ours) and, like the squirrels, we take time out to get our houses in order, store away our leftover winter supplies, and await the onrush of the verdant time of year. May all your pastures be green, dear Reader.
Wednesday, May 25, 2005
In terms of the "God-shape": if we can indeed find God within ourselves, then this vacuum is literally infinite in size and actually without shape, since the God(dess) within us is, in itself, infinite.
Monday, May 23, 2005
There are so many types of clutter, and one's physical surroundings surely reflect one's inner landscape--and vice-versa. There's a saying that a messy desk is the sign of a brilliant and active mind, but I think that's just too simple a statement. The condition of one's desk is simply a reflection of one's current mind state, not one's overall brilliance or lack thereof. For me, a clean and orderly desk allows me a clearer space in which to think, just as a tidier basement will help me to sleep more restfully tonight.
I think of Jack Kerouac's statement from Dharma Bums, which I hereby paraphrase: "Wee monks sweeping small temples"....
To any of you who have that natural resiliency, count your blessings. To those of you who do not, let's cultivate resiliency. It is an investment not only in the future, but in the present, as well.
Saturday, May 21, 2005
Friday, May 20, 2005
When one sees learned helplessness in action, it is difficult to just sit there smiling and say, "Y'know, I understand how you feel. Now let's talk about it". Instead, one wants to talk like you might talk to a recalcitrant child, threaten to take away priviledges, no sweets after dinner, no TV before bed. Instead, we plead, we cajole, we try good cop/bad cop techniques, we throw up our hands and decide to try again next week.
The diabetic patient who knows she should eat a small snack every few hours but only eats an enormous meal once a day and then has super-low blood sugars 12 hours later should know better--she just can't change her patterns of behavior. The woman with advanced AIDS who continuously buys Xanax on the street should know better, but her life of unbelievable trauma precludes such clearheadedness. The other patient with advanced respiratory disease should be able to stop smoking, since she constantly complains of not being able to breathe. But she can't. Her AIDS is fully controlled but the smoking will be her death. Can I change it? Probably not. Am I frustrated with her? Hell, yes.
I have a love/hate relationship with this work. I love the people, their humanity, their damaged selves. I love the ones who are self-sufficient and disciplined. I love the ones who are helpless victims of trauma. I've loved many who have died---the city is speckled with their memory as I make my rounds along the streets. I love many who will die, often due to their own inability to act conscientiously, and memories of them will also roam the streets and the corridors of my mind. I ask myself honestly if I am addicted to being a helper. Do I gain alot from being in this role? I'm sure I do, and only I can decide when the role no longer serves me (or them, for that matter).
Thursday, May 19, 2005
After sitting down to dinner on the screened-in porch, I had to get up to fetch something from the kitchen. As I rose from my chair, we heard a very distinct sound: "rrrrrrriiiiiiiiiipppp!" The back pocket of my favorite green corduroy pants caught in the bamboo backing of our new politically-correct Viet Namese porch chairs (all proceeds went directly to the craftsperson who made them) and tore two nice holes in the seat of my pants! Shen said that the look on my face as the fabric ripped was priceless. From their uproarious laughter, I assumed she was telling the truth.
Wednesday, May 18, 2005
So, what does "peregrination" mean? I turned to my friend, dictionary.com, and discovered that it means "To journey or travel from place to place, especially on foot; to travel through or over; traverse." Hmm. My loosely associating mind then took a few of its own peregrinations to find a causal link. "PeregrinTook", a hobbit character from the Lord of the Rings first came to mind, then came the peregrine falcon.
After some ruminating, I realized that this term simply relates to my personal journey, the one that began so long ago as I traversed the birth canal. Through the many trials and tribulations of my forty years on earth (this time around, anyway), I find myself here again, each day just another step along the peregrinating (yes, that's actually a word, but possibly very poor usage on my part) trail.
Today I complete the relatively short journey of teaching a group of 25 individuals as much about nursing as I can in nine months. Nine months, eh? An apt amount of time for the germination of many things....This is a peregrination of sorts, one which is more like a sidebar, a short time off the main trail, just to see what it's like on a different path. It was an interesting path, and I may traverse it again, perhaps. It left some notable dust on my shoes.
Meanwhile on another path, yesterday I had the distinct pleasure of meeting with a psychiatrist whom I have chosen to see for a while in the interest of my medico-psychological health. His Scottish accent and good eye contact put me at ease. We can work together, it's clear. I choose to share this here because alot of what this blog is about is transparency---my transparency---to the extent that I'm willing to divulge my personal life to anyone who happens to surf by, whether by chance or design. My choice to use antidepressants is another tributary of my identity, and it informs a great deal of who I am in the world and my relation to it. For me to function in this fast-paced and overstimulating world, pharmaceutical support is priceless.
Another path is that of my chosen work. This path leaves more than dust on my shoes. It can often be a cloud of dust enveloping my very sense of self. I cross paths daily with souls greatly damaged by trauma, disease and disenfranchisement. Such is the environment in which I choose to dwell from nine to five.
So, peregrination it is. We are all doing it, even when standing still.
Monday, May 16, 2005
-I spoke with a doctor about a patient who needs better diabetic care. We came up with a plan and I called the VNA to initiate the change.
-I visited a patient in the hospital, wrote a note in her chart, and later received a call from the hospital physician about the discharge plans.
-Later I sat in on a visit one of my patients had with his primary doctor. A great deal of useful information was exchanged and now I can follow up.
-Another patient didn't show for his appointment with his doc. I checked the computer and saw that he'd been in the ER. I printed out the notes and labs and will discuss them with his primary and initiate timely follow-up.
Just for a day, everything made sense and I could just do my work.
My colleague, meanwhile, was struggling with a patient who has a not-quite-broken arm which needs orthopedic attention. Unfortunately, none of the local ortho docs want to see a Medicaid patient if the patient's arm isn't actually fractured, so the patient languishes in pain. Another patient needs emergency oral surgery but no oral surgeons in the area accept Medicaid. We can load her up on narcotics but she needs surgery. What to do? Luckily, this was not my battle to wage today, but there for the grace of God go I......
Coming home, the dogs wag their greeting and we head to town for a book-reading at the local dog-friendly collective bookstore (see link to Food for Thought Books). The reading was cancelled, but we hung out with the friendly bookstore workers, the dogs soaking up the proffered love. We then wandered through the sunlit town, eating cookies and looking at flowers. The dogs only seemed interested in flowers that other dogs had peed on. What's up with that?
I give thanks tonight for a gentle day, a lifted depression, the peepers making their nightly appearance in the nearby swamps, and the knowledge that my love is on her way home.
May your days be gentle, fair Reader.
Sunday, May 15, 2005
This weekend, we made our rounds through the local campus on both Saturday and Sunday, under the threat of rain that rarely manifested in much more than a sprinkle. As usual, there were several serious collectors with work gloves, overalls and boots, climbing into the dumpsters and making short work of finding the best booty. Amateurs that we are, we poked around the perimeters of the dumpsters, opened some promising bags, and came away with some noteworthy finds, our main goal being to score some nice things for our son's new apartment. (Now THAT's back-to-school shopping, folks!)
My favorite treaures from the weekend's activities was a beautiful new paperback edition of Anne Karenina, as well as a well-preserved Signet Classic version of Dante's Inferno, not to mention In Cold Blood by Truman Capote. Some light summer reading.
Other finds included a lovely silver desk lamp for Rene, brand new hanging file folders, unused stationary, metal desk organizers (at least $10 each at Staples), and clean plastic storage bins for the basement. We saw other people make off with excellent halogen torch lamps and other flotsam and jetsam. The early birds definitely found some good worms. Someone must go around with a truck, collect loads of goods, and then hold a yard sale with a huge profit margin. Way to go. Capitalism at its best.
A good time was had by all. To all those undergrads' parents who sent credit cards to their kids for the purchase of desk organizers, stationary, and lamps---that was money well spent! Y'all c'mon back now, y'hear?
Saturday, May 14, 2005
How do I cope?
-Now with David Brancaccio on PBS on Friday nights at 9
-The Daily Show with Jon Stewart on Comedy Central
-Arse Poetica--see links to blogs
-Pinko Feminist Hellcat--another blog linked here on DD
-I avoid NPR like the plague these days
-Democracy Now! with Amy Goodman, if I'm up to the task
-Avoiding all media from time to time
-No radio in my car
The bumper sticker which says, "If you're not outraged, you're not paying attention" about sums it up for me.....
Friday, May 13, 2005
"Wow,"Mary says. "Glad I don't have that!"
Despite the underlying feeling that today was expected by many to be a cursed day, it wasn't too bad, or not relatively worse than any other day, that is.
The question on my mind today had to do with why I choose to do the work I do. Why do I want to work with the disenfranchised, the disempowered, the chronically ill, the poor? It is genuinely frustrating and frequently maddening work, and I often feel like I'm banging my head against a very uncomfortable wall. (Are there comfortable walls out there somewhere? Padded ones, perhaps?)
I have many patients who seem so disempowered, unwilling to make positive decisions for their health, unmotivated to change, unwilling to try something new. Today I visited my 69-year-old patient with AIDS, schizophrenia, asthma, and diabetes in the hospital---again. She just has to quit smoking. She complains of consistent shortness of breath and a dry cough; and she smokes more than a pack a day. Her AIDS is completely controlled. The smoking will kill her.
I also visited my 350+ pound patient with severe asthma and diabetes. She had a few weeks of rehab---exercising and such---and now she's back home, spending about 22 hours of each day in her bed. The smell of urine is sometimes overpowering. What can I do with her? We've had the same conversation for years.
Then there's my schizophrenic patient who feels fine despite wildly out of control diabetes. "I feel great," he said today. "I'm a health freak." That can be interpreted in many ways, I guess.
Granted, others are motivated, proactive, responsible and responsive. They make the days easier. And more rewarding, as well. What would I do without them?
In my rounds around the city, I drive past the homes of some of my patients who have died. I picture scenes, conversations, interactions, snapshots of days gone by. Many ghosts walk the streets, perhaps still uncertain exactly what caused their untimely demise.
Mary asked me why I don't just work in a nice little doctor's office or medical clinic here in Amherst. I responded that I might die of boredom---all those white people like me with sore throats and high cholesterol. Where's the challenge? Where would I speak Spanish? Mary's answer: "Wouldn't a little boredom be nice?" She added, "Struggling is relative. White people and other people of priviledge need compassion and care. They, too, could benefit from your kindness. Maybe that's the padded wall you need."
Triskaidekaphobia. I felt no fear today, but it sure was nice to leave that office---that city--behind for the weekend. Now for a pair of days focusing on myself, my home, my lovely partner, my needy and loving dogs. Then back to the fray, with all its frustrations and maddening moments.
Flick the switch. Turn out the lights. The day is laid to rest.
Thursday, May 12, 2005
That said, sadness still comes and goes. My recurrent depression (which has haunted me since childhood) does hold some gifts, and among the goals of this latter half of my life must be one which includes finding out what exactly those gifts are. This being human is certainly quite tiring, no matter how wondrous.
Monday, May 09, 2005
I wonder why I choose to wear my heart on my virtual sleeve here on this blog. Does it serve? Is it only self-serving?
Karen Peris of The Innocence Mission sings,
"Oh I want to fly, fly forward into the light,
be alive, to come alive....
turn around, see clearer ways to go now."
I also want to see clearer ways to go, ways to change, to be a better person, to be more whole.
I know it's possible.
Saturday, May 07, 2005
Whenever I see a college friend of mine who is an artist in New York City, we will often reminisce about our days in art school in the early 80's when we were in our late teens and early twenties in Philadelphia, staying up all night to make lithographs, eating eggs and toast at an all-night diner at 4am, slumping into class at 8, drugged on caffeine and lack of sleep. In some ways, it seems like yesterday.
Last summer, I turned 40, and I welcomed the notion that the first half of my life had more or less ended, the second half (statistically) now beginning in earnest. During that first half, the transitory nature of life never really seemed to hold any weight, the illusory idea of having "all the time in the world" holding sway. Retirement, old age, disability, grandchildren, the effects of ageing---none of this seemed to resonate, perhaps only in a distant and abstract way.
In my previous work as a visiting nurse, I had more opportunity to work closely with elders. Currently, my patients tend to be under 65, with only one over that magic number (who, in fact, I see as a free-care patient since we're not contracted to care for anyone who is Medicare-eligible). Thus, there is a personal feeling growing vis-a-vis the ageing process, since the elders I encounter in my work-life are fewer and farther between, my parents taking center-stage in my personal cosmological array. And when one contemplates the ageing and eventual death of one's parents, the more direct contemplation of one's own demise also enters the fray.
Mark Twain once famously said, "Reports of my demise are greatly exagerrated." I couldn't agree more, but I can also agree that my demise is now closer than further, and its reality is one which I can honestly embrace with relative equanimity. Death is not a fearful entity for me. It is neither something I fear nor something I relish the thought of. It is simply an inevitable passageway through which I will some day walk, only to then finally be enlightened as to the larger questions which go so woefully unanswered here on earth. The deaths of those close to me are more cause for concern, yet those events are also to be expected, along with the grieving that they will entail. While the death of the young is tragic (and feared---see my link to Justice for Woody), the natural death of the elderly holds a sense that, when a human is allowed to avoid all accidents and trauma, ageing and death will eventually assume their inimitable hold and waltz that soul on to its next incarnation. While I wish long and productive lives to all my friends and brethren (and myself), I also bow to the greater supernatural will that supercedes our own human desires for longevity.
I will continue to embrace my own ageing gracefully, as well as that of those around me. May we all be blessed with the ability to make our exit in peace and tranquility, free of undue suffering and trauma. May it be so.
Friday, May 06, 2005
It was lovely to see my parents---both sets---and especially wonderful to surprise my dad on his 75th birthday and see the joy in his eyes when he came home and realized that I was sitting on the couch. He expected my brother to be there, but my arrival was clandestine, my car parked secretly around the corner.
The highlight of the day was simply hanging out, playing frisbee in the park, flying some balsa-wood airplanes that I picked up in a stationary shop for the occasion. We used to fly those fun and inexpensive planes all the time when we were kids, generally with my dad. My brother, father and I spent some time reminiscing: childhood camping trips, memories, synchronicities, profundities, mundaneities. My time with my dad was sandwiched between two late evenings with my mom and step-father, followed by an early Mother's Day lunch before I braved the 4+ hour ride home. It was a time to spread the love around.
Sleep wishes to visit these tired eyes soon. Buenas noches.....
Wednesday, May 04, 2005
If possible, I will post from the road. If not, blessings to all
Monday, May 02, 2005
Sunday, May 01, 2005
She was right, of course, and I realize how many mornings I think to myself, "Good God, morning?!" as I turn off the alarm clock and shuffle off to the shower. More food for thought as the days roll by. Resenting the sunrise is a mortal loss of opportunity and joy. Welcoming a new day is an embrace. I would like to learn to embrace more and resent less.
Good morning, Goddess.