Wednesday, November 29, 2006
He looks at me quizically. I can tell his brain is working overtime. He's lying in his bed, a Batman DVD playing with the volume low. The Joker fires guns and Batman saves the day.
"You're my friend," he replies uncertainly.
"That's right, I am," I smile into his eyes. "But I also have a name that you know."
With a little prompting, he actually comes up with my name. He shakes his legs under the covers in childlike delight when I tell him he got it right. He seems so innocent, so pure.
He looks at me in earnest. "I was in Puerto Rico yesterday. I bought a dog and an airplane."
"Wow," I respond. "I thought you said you were in Puerto Rico on Sunday."
"I went back again and bought the airplane. I paid the guy a hundred bucks and I fixed the engine. "
He has AIDS dementia. Classic. Virus completely suppressed for years. Some changes to his white matter but no masses or lesions. People didn't used to live this long with a suppressed virus, so we're flying by the seats of our pants. He complained of devils and battled with them in his dreams. (Does watching violent movies help this situation?) An antipsychotic made him hallucinate. Now we'll try some steroids to decrease what we assume is brain swelling (he has a history of cerebritis). I'd love to take him to an acupuncturist or a naturopath. Maybe a shaman would be of service. But insurance doesn't cover such luxuries, so we have to use the tools at our disposal, thus more meds. We will eventually watch him slip away. Meanwhile, a local priest pays visits and helps to keep the demons at bay through faith and prayer. Maybe watching Animal Planet would be better.
Another patient also shows signs of AIDS dementia, but his virus is not suppressed and never has been. He can't tolerate meds well, has a history of poor compliance with treatment, and the virus has mutated exponentially in his bloodstream. Pockets of various strains are probably biding their time in distant corners of his body, waiting for a chance to circulate and propagate. His brain has been attacked by toxoplasmosis a number of times, and other illnesses have plagued him over the years. How long can he hold on? This weekend, devils sat on his shoulder and tormented him. A visit to church helped to calm his hijacked mind. The best we can do is treat the virus, keep it as suppressed as possible, support him in his compliance to meds, and send him to a therapist for treatment of his underlying depression and PTSD. The more serene and clear his mind from day to day, the less painful psychic torture he'll endure.
When faced with such conundrums of suffering, one can only be grateful for the small things that make life worth living. These gentleman are peaceful warriors, and we simply provide some tools for the battle, the least of which is a smile and a kind word. Love, after all, may be the best medicine around.
Monday, November 27, 2006
When hospice at home failed, and wet sheets, untaken meds, and benign neglect demonstrated that being alone in his own apartment was not working, his family whisked him away to Puerto Rico, where he could come to rest surrounded by the smells and sounds of his motherland. I was sad to see him go, but happy for his reception into the welcoming bosom of family, and honestly relieved that my years of urgent calls and emergencies were over.
I had considered going to Puerto Rico to say goodbye, to visit him in his native land, but our financial situation and my responsibilities here stayed my hand. I also was just not sure that my appearing at his bedside would be truly beneficial to him, or only painfully remind him of all that he left behind, perhaps giving rise to unnecessary remorse and regrets that would have otherwise have remained blessedly subterranean. If I had gone, it would surely have been for me, not him, and I just wasn't convinced that it would be for the best. Instead, I erred on the side of caution, following the ages old adage, "Don't just do something, sit there."
We did have one telephone conversation about four weeks after his departure. I called the home where he was staying in Puerto Rico and we chatted for a while. I told him that I loved him, and that God would bless him and his family. He blessed me as well, and we hung up. Although I had planned to call again, the number on a sticky note by my desk, it just didn't happen.
Another goodbye, another letting go, another opportunity to say "I did enough". And I can say it truthfully. I did enough. No room for regrets. It's simply goodbye.
Sunday, November 26, 2006
Our lives, the Zen master surmised, consist of the journey between the top of the cliff and the bottom, thus in our free fall through life, we think that we are solitary individuals, but we are truly just an intrinsic part of the larger river, only as separate as our thoughts allow us to be.
Saturday, November 25, 2006
On this annual day of rampant consumerism, Mary and I generally just stay home, refusing to buy anything, use a car, or take part in the mad rush to consume. I had forgotten that I was scheduled for a haircut some four miles from our house on Friday, and was disappointed to learn that our local buses would not be running, thus, thanks to a balmy 50-degree afternoon, I biked to my appointment, a cold wind making the trip only slightly arduous. Paying for a service (rendered by a local merchant) rather than goods, I still felt that I was honoring my commitment to not participate in the universal shopping spree, and I felt especially good as I raced along powered by my own physical exertion, cold wind be damned.
This week, stories abound of people sleeping on sidewalks for two days in cold rain to be first in line to a buy a PlayStation 3. Fistfights broke out as consumers waited in impatient lines to be the first through a store's open doors, some stores even opening at midnight to assuage the greedy claws of hungry consumers ready to pay their hard-earned cash for unnecessary frivolities. Is it really worth such extravagant effort?
Now, how many of these Black Friday sidewalk campers would spend two nights in the rain if it raised money to feed the homeless? Who would line up at midnight to serve the hungry in a soup kitchen, throwing punches in order to be the first to hold the ladle? Why isn't service to the needy as enticing? Why isn't fighting homelessness as sexy as shopping? Wouldn't it be radical if Wall Street announced that, next year, Black Friday would be called "Service Friday", and all consumers would be urged to get out and volunteer their time to those most in need? What if WalMart announced that it would sell nothing on that day, and instead, local relief organizations would have tables set up for citizens to connect with a volunteer effort of their choice?
While we love to give gifts, and send our share of humble packages to family and friends for the holidays, we attempt to do so in a way in which the impact of our purchases is as low as possible. Cheap gifts made in Chinese sweat-shops are eschewed, replaced by the most meaningful, affordable, and simple gifts we can manage. Our beloved nieces and nephews and godchildren love to receive gifts at holiday time---and we love to oblige them---but none of them have illusions that our gifts will reflect the latest trends in American consumer culture.
I always have mixed feelings about the perceived need to spend and give at this time of year. While I love the sentiment and the spirit of giving, I loathe the obligatory consumption that is part and parcel of the whole package. I still look for ways to express love and caring without the conspicuous expenditure of money for items built with planned obsolescence in mind, but it is a fine line we walk when we live and participate in this misguided society.
So, as this holiday season opens its doors, may we all remember the true meaning of it all, and refrain from being lost in the artificial pressures that transform this season of warmth and love into a season of frantic need to part with our earnings and create unnecessary debt. May the true spirit infuse our hearts and calm our harried minds, realigning our priorities in this time of increasing hunger and need. Our cultural priorities are skewed, and only we can make the choice to realign them once more.
Some selected sites for "alternative" holiday shopping:
Giveline: generates charitable contributions to your favorite non-profit with each purchase
The Hunger Site: special gifts which benefit those in need with each purchase
as well as....
The Breast Cancer Site, The Child Health Site, The Literacy Site, The Rainforest Site, The Animal Rescue Site
And not forgetting...
The Wildlife Adoption Center
Thursday, November 23, 2006
Whether I like it or not, being a white, middle-class, college-educated American grants me more privileges than I can even imagine. I have no idea what it's like to be a person of color in this world where light skin is still a ticket to lower mortgage rates and more opportunity, as unconscionable as that seems. My class- and race-based advantages are myriad, and that is something to never take for granted. Watching an episode of Morgan Spurlock's 30 Days in which he and his fiance live on minimum wage for a month in Cleveland underscores the fact that so many people run that treadmill their whole lives with little hope of ever improving their lot.
In this blog, I have sometimes written of the guilt I feel when I go home to my cozy, well-heated home filled with health-food, while many of my patients struggle with survival issues of the most basic kind long after my 9 to 5 is over. What does that mean? Where is the learning edge for me? For them? How does one calculate one's privilege and come to terms with its reality? What is the calculus of privilege and what is the solution to that equation?
How many people ate alone today? How many people didn't eat? Who was friendless? Who is orphaned? Who was dying? Who was in pain? Who was crying? Who was contemplating suicide? Who despaired? Who cried themselves to sleep?
Yes, problems and challenges are relative. I cannot solve others' hunger by going hungry myself. Sure, Morgan Spurlock tried it, George Orwell tried it too, with honorable mention to Barbara Ehrenreich. Walking in another's moccasins is surely an eye-opener, but it's not the only way to class/social/economic enlightenment. Still, these "experiments" by others give us an insider's view, re-focusing our lens and challenging our compassion. Last night's film, "Turtles Can Fly", told the heart-wrenching story of children struggling for survival in a refugee camp in northern Iraq, a theatrical representation of lives that are being similarly lived by millions around the world as I type these lines. It's overwhelming.
Where to from here on this Thanksgiving evening? My belly full, my house warm and insulated from the cold New England rain and wind, my wife asleep on the easy-chair under a blanket, Tina the dog dreaming the dreams of a well-fed and well-loved animal. It's an eternal conundrum, one which can be approached from many angles. Is it the luck of the draw that I'm here in this room, typing on my computer, in this house, in this safe and prosperous neighborhood, the fridge bursting with Thanksgiving leftovers? Am I grateful? Oh yes. Do I feel I "deserve" such luxuries? There is not a single person who does not deserve at least this or more. But can they ever expect to have it in this life?
At times, the thought of others' suffering is too much to bear. The cruelty and poverty and famine and war and violence which permeate this world is just astronomical. I can walk out of my house with no fear of landmines or snipers' bullets. I can rest assured that my car will get me to work on Monday, and my credit card will pay for its repair if it breaks down, AAA towing me safely when I request their assistance at any time of day or night. Is there 24-hour on-call service for the soul? Will AAA tow away our broken society and take it to the shop for a tune-up? Where is the button I can push to make it all better? Rhetorical questions all, and the answers are not easily forthcoming.
Gratitude is the least that we can muster. The abundance is all around us, and the blessings just seem to multiply without asking. In this consumerist society, how easy it is to always want more, to always be striving to have the next great thing. Today, let's look at what we have, count those multitudinous blessings, and remember those who have so much less. It's the least we can do. And there's so much more.
Tuesday, November 21, 2006
Monday, November 20, 2006
What struck me so clearly is how far we've come in the treatment of AIDS, the voluminous knowledge breathtaking in its scope. I can hardly begin to describe for the uninitiated the dizzying array of terminologies and diagnostic tools currently at play. It is simply astounding, as is the very international effort to further the research and share the results of that research worldwide.
When hanging out with providers or scientists who work in this field, there is a vast nomenclature which can leave the neophyte stymied and confused. Terms like "treatment-naive", "wild-type virus", "genotype and virtual phenotype" are bandied about in a way that demonstrates how they are second nature to those in the field. It is an intimidating ocean of knowledge in which I splash tentatively by the shore, sometimes up to my knees, and only several times have ventured too far and felt as if I was drowning. Not being a prescriber, I am free of the responsibility of prescribing such toxic medications, although my job entails monitoring my patients for side effects and helping them work through the potential misery while staying on course.
Towards the end of the talk I asked our presenter how these terms come into popular use among the AIDS community. For instance, how did the term "viral fitness" come into being? Who introduced it? Who coined it? Is there some governing body that announces the adoption of such terminology? Our presenter acknowledged that, no, there is not a governing body that hands down decisions on which terms will "stick" and which will be jettisoned to the nomenclature dustbin. Generally speaking, influential researchers will use a term for the first time in a published paper, and that term will be picked up by others, make its way into the literature, be adopted into PowerPoint presentations, be repeated in articles and professional talks, and eventually fall into general use by providers on the front lines. I wondered aloud if it would be interesting to write an article or a book on the nomenclature of AIDS, from the early days of ARC (AIDS-Related Complex) and PWA, to some of the current terms like "deep salvage" and "lipodystrophy". I wondered if I could (or would) write such a treatise.
After the lunch was digested and all of the talk somewhat assimilated, day to day life on the aforementioned front lines continued. One of my patients who has been living with AIDS for years, his virus currently suppressed for more than five years now, stopped by for a chat. Despite his excellent adherence to meds and our relative success in his treatment, he is wasting, losing weight alarmingly fast with no discernible cause. He smiled broadly, handing me a letter that came in the mail today, telling him that he was approved for 120 cans of Ensure per month for 12 months. My letters and applications had succeeded, and he would be assured of an extra 1000 calories a day for a year, not to forget the other nutrition therein. He beamed at me, and we even noticed that he'd gained a few pounds this month. Small victories mean alot.
On the other hand, a long-time patient of mine who just can't seem to beat back his virus was once again in the hospital. His daughter called me on Friday, saying that her father had a high fever, difficulty breathing, and very marked irritability and confusion. Due to his history of toxoplasmosis and seizures, I urged a call to 911 and facilitated his care at the ER by phone. Sent home hours later without conclusive evidence of anything being wrong, he was back in the ER on Saturday with a higher fever and even more severe mental status changes. He's like Job, it seems, beset by complications and symptoms at every turn, poor guy. I was so sad to hear that he had taken a turn for the worse.
On my way home tonight, I stopped at the hospital. His wife was placing a cool cloth on his forehead as I entered the room, and I held her as she cried on my shoulder. She' s HIV positive as well, but his health is always on the edge while hers holds steady. I've bent over backwards for this man, and I'll continue to do so, no matter how exasperating he can be.
He looked at me as his eyes brimmed with tears. I put my hand on his forehead and felt its heat. His misery was palpable, although when I asked him how he felt, he said in Spanish, "I feel a little bit OK". I reassured him that everything possible is being done for him and that I'd be back tomorrow.
Ducking into the nurses' station, I conferred with one of the residents following his case. She listened intently to my take on his last few years of treatment, and we bantered professionally about his case, those familiar words bubbling up into our conversation: opportunistic infections, toxoplasmosis, immunosuppression, fever of unknown origin, antiretrovirals. Our conversation centered on the clinical aspects of the case, but I also tried to infuse it with some of my understanding of the patient himself. We can all sometimes get so lost in the words, and we must sometimes make sure to remember to re-inject the patient back into the conversation.
While the description of the lunch juxtaposed with the face-to-face patient contact may seem somehow incongruous, I guess the point that I'm trying to make is that there is a balance between the clinical separateness---all of the words and concepts that make up our understanding of an illness---and the patients themselves, their stories, their humanity, their flaws and strengths. Where there are reams of papers detailing resistance profiles, mutations and the genotypic profiles of various viral strains, we can never escape the reality on the ground, the human side of the equation about which there is scant research and relatively little attention. Those lunches and talks feed our minds and sharpen our skills, improving the clinical aspects of our care, the intellectual work which is part and parcel of the struggle. But we must always remember that all of these words and names and labels mean something about an actual person, a being of flesh and blood who cries, laughs, sleeps, and dreams.
These are the places where the science and art of medicine and nursing intersect, and where the art, informed by the science, brings it all back to a simple hand on a forehead and a hug and a tear. The balance is easy to see, harder to attain, but crucial for us to truly deliver our best care each day. There is the nomenclature of science and the nomenclature of love and compassion, and we must speak them both equally fluently.
Sunday, November 19, 2006
Saturday, November 18, 2006
"OK, I understand," he replied.
"You know," I continued, "when you come in for your bloodwork, it's because I need to check your blood's clotting time. If your INR is too high or too low, then we have to adjust your Coumadin dose, otherwise you could end up with a clot or a bleed."
"OK." He smiles.
It's like talking to a ten-year-old.
"When you come in for bloodwork, I need you to take an interest and call me for the results. I can't be chasing you down every week. This is the deal: when you have your INR drawn, I want you to call me aggressively the next day until we talk. I want you to think for yourself how important it is to know how much coumadin to take."
"OK. I'll call you tomorrow, for sure." We shake hands.
The next day is Friday. I wait until 3pm for his call. No dice. I wait til 4. Still no call. I leave a message on his voicemail with his dose for the weekend, chiding him for not calling me. Am I undermining my teaching by calling him and letting him know the dose even though he didn't call me? Yeah, probably, but I also can't let him run the risk of throwing a clot this weekend either. Hmm.
So, I called my little ten-year-old in a forty-year-old body. Again. Better luck next time.
Thursday, November 16, 2006
"Oh, I was doing something and I slipped and cut it." His eyes darted around the room as he muttered his answer.
The hole in his arm is almost perfectly round, about 4 cm across and maybe 1 cm deep. It's granulating nicely, the edges clean. I dab on some Silvadene with a sterile tongue depressor after first cleansing the wound with sterile water. I cover it with 2 x 2 gauze sponges and wrap it nicely. I wish him well and head back to the pod to confer with the doc. The visiting nurses will watch it closely for signs of infection.
"Don't tell me," I say, "an abscess from poor technique while shooting up, right?"
"Of course," the doctor says. "What else?"
It could pass as a large cigarette burn, but it's too deep. He was hospitalized for acute heroin intoxication (just shy of an overdose), plus a forearm abscess which had to be excavated by the surgeon. Not his first abscess, plus a little bacteremia for good measure. Poor guy.
When I was a Baccalaureate nursing student, we had to do a community health project. Due to my persistence, my small group chose a inner-city drop-in center for IV drug users. We had health fairs and taught them proper technique for shooting up and how to clean needles with bleach solution. Our venue for learning was not a popular choice among the faculty, but if we could prevent a few infections along the way and befriend some addicts, wasn't a little harm reduction OK? We hung out with prostitutes, passed out condoms, and distributed bleach kits in "shooting galleries" around the city. It was quite an eye-opener for some of my suburban classmates.
Oh, the things people will do to their bodies for pleasure, for forgetfulness, for escape from pain. Memories of trauma fade away as the heroin courses through the veins or the effects of the crack go straight to the brain. To sleep, perchance to dream. It can feel so good but only lasts so long. And the abscesses and infections and cellulitis? Call them occupational hazards.
Compassion goes a long way, and if the abscess makes the nurse's heart grow harder, time for a vacation, or perhaps a new career.
Wednesday, November 15, 2006
"Great!" I thought. "What do those numbers look like?"According to some study or other, "only" 35 million Americans experienced "food insecurity" in 2005, as opposed to 38 million in 2003. Imagine the headlines in newspapers around the country: "Less Hunger in America! Have a Guilt-Free Thanksgiving!"
I was dumbfounded. First of all, "food insecurity" is just another euphemism for that all-American, old-fashioned phenomenon called "hunger". Secondly, 35 million people going hungry---or close to it---every night in our country is not something to be boastful about. On the radio, the statistic seemed to almost be treated as something that might even engender optimism in the listener, until a commentator from an anti-poverty organization painted the picture in the starker terms it deserved. And that gap of 3,000 between 2003 and 2005---can it be trusted? Is it accurate? How were they counted? How many go uncounted?
Whatever happened to the War on Poverty? Why has the War on Terror superceded every other societal "war"? Why is there a War on Peace? A War on Love? On Understanding? Why do we even need these wars?
The Civil Rights Movement was not a war. Martin Luther King, Jr. made sure of that. It was a "movement", bringing notions of change, forward thinking, and the future. The Gay Rights and Women's Rights Movements did declare "war" on the status quo, in a way, but again, "movement" was the operative word.
Labels, names, and titles only do so much, and euphemisms blind us to reality. Of course, language helps us to frame our struggles, contextualize our goals, and rally around a central cause. Language and the use of words is part and parcel of the human experience and we should embrace it as a potential force for good. That said, when we say "less hunger in the U.S", let's be realistic about what that means. Luckily, NPR was thoughtful enough to counter the statistics with a dose of what they truly mean. Other news venues would simply report the shiny, happy news and move on to the next item, never taking the time to contextualize or critically examine the data and its announcement.
So, as we sit down to our Thanksgiving meals next week, many of us will think of others less fortunate than ourselves, or offer prayers for those without food and a table upon which to serve it. Some of us will give money to feed those less fortunate, and still others will spend the day serving those in need. Whether one serves on Thanksgiving Day (the day when countless volunteers pack the soup kitchens) or on any other day of the year is beside the point. Compassion, awareness, and a realistic view are what is most needed at this historical time. Euphemisms and labels do little to assuage suffering, often serving instead to mask the reality and cushion the blow for those too frightened to truly accept what's on their doorstep.
If we truly have a need for a new war, maybe it should be a War on Ignorance. There are many opiates of the masses, and it seems ignorance born of fear is the most blissful opiate of them all. Let's declare ignorance a thing of the past, embrace Truth, and cast euphemisms aside for the chaff that they are.
Food insecurity? It's Hunger and Poverty, my friends---don't let them fool you. And if that doesn't threaten national security, I don't know what does.
Tuesday, November 14, 2006
Working in this unfortunate city, doing outreach to patients' homes, navigating the pock-marked streets, I have come to know the city more intimately than I had ever cared to. Compared to my somewhat bucolic college town where I reside, the city is a troubled landscape of poverty, drugs, corruption, and mismanagement.
Driving in this city---like in most inner-city environments---the generally accepted rules of conduct do not necessarily apply. Stop signs and red lights are apparently seen as no more than suggestions, hints at what action the driver or pedestrian might choose to take if they were so inclined. As I pass down many a city street, if I come upon a light just turning green for me, I will defensively slow down as I reach the intersection, assuming that a car or SUV could come careening from the left or right, through the red light, striking me as I cross the intersection in which I appear to have the right of way (at least as far as the traffic signals are concerned, that is). I sometimes feel my body contract ever so slightly as I drive through a green light, as if I'm just waiting for that eventual broadside impact delivered at the hands of a reckless city driver.
In this city's culture, cars seem like weapons, and no one---literally no one---considers making a kind or considerate gesture. Coming from our genteel college town thirty minutes away---thirty minutes which might as well be one thousand miles---I'm used to drivers stopping in their tracks to wave other drivers on, people allowing a bus to cut into traffic, or pedestrians to cross the street. Here in the city, pedestrians pay no attention to "WALK" or "DON'T WALK" signs. Adults model for children that cross-walks have no meaning, that on-coming cars are something to challenge, not to respect. Children dart out from between cars, adults cross the street at any time, from any direction, bicycles go against traffic, and miniature motorcycles (often called "Crotch Rockets") blast down the side streets, piloted by absurdly young (unhelmeted) children or similarly absurd middle-aged men, perched precariously on these toy motorcycles with powerful and noisy engines that belch smoke and fumes. Utter chaos.
How many times have I seen a car simply ignore a school bus and its flashing red lights? How many times have I seen an ambulance struggle to make it through a line of cars which refuses to follow commonly accepted practice and move aside for the screaming siren? How many times have I wanted to stop at a crosswalk to allow a pedestrian to cross, only realizing that another impatient car is sure to pass me illegally on the right at full speed and take that pedestrian's life in a nano-second? The Russian Roullette wheel seems quite busy in this topsy-turvy place, and I would never wish to hasten another's demise simply because I was trying to be nice, only succeeding to put another in unnecessary danger.
City life---another reason why I choose to live in my semi-rural sub-suburban haven. Being in the city from 9 to 5 is quite enough, but full-time existence in this chaos of spurned rules and broken laws would just be too exhausting for words.
Here's a quiet prayer for the city, its inhabitants, its rules that are constantly broken, and for those of us who travel its streets with frequent apprehension. May all red lights be honored, and may we all traverse the streets in peace.
Monday, November 13, 2006
Sometimes there are people who I just can't find. Sometimes they just don't want to be found. Sometimes they don't know they're lost. Sometimes they're dead (and then I certainly hope they know where they are). Anyway, being lost is a relative concept, after all.
Today I saw that a patient I've been looking for over a 18-month period was actually in the hospital. Based on his history---alcohol abuse, uncontrolled diabetes, end stage liver disease, and intermittent homelessness---I figured we might just find him "in house" some day, or hear that he was dead. Luckily, he checked himself into the ER last week, inebriated beyond mentation, his ability to identify himself precluded by the alcohol coursing through his blood. Admitted as "John Doe", he eventually revealed his identity, and although he could not state the name of the hospital, his address, the date, day or year, he was eventually able to state the year of his birth. Thank God for small favors. This piece of information led to his "John Doe" bracelet being removed and our peripatetic patient labeled as no one but his own true self. Hallelujah.
Enter the Outpatient Nurse Care Manager, alerted to the presence of said patient on today's in-patient roster, diligently dashing to the Neurological floor of the hospital to make some semblance of a connection with the lost lamb. Although said lamb did not seem to completely understand the purpose of this writer's visit, he was able to produce a crumpled piece of paper with what turned out to be an accurate telephone number for his brother, who thankfully answered his phone and agreed to drag his infirm brother for a visit at the clinic in a few days, following discharge later today from the hospital/hotel.
What struck me at the time of my visit was this patient's similarity to a past patient who I once described. This gentleman had ignored the needs of his diabetic and diseased body, choosing to drug and drink and abuse himself beyond a level that could be imagined to actually support life. One day, despite dire warnings that a disaster was imminent if he didn't change his ways, this unfortunate gentleman began to vomit so uncontrollably and for so long that he eventually blew apart his esophagus, gastric contents pouring into his (previously sterile) abdominal cavity. Miraculously, he survived, and is now institutionalized, and will perhaps be the recipient of an artificial esophagus some day with any luck, but his battered body will never fully recover from the insults visited upon it. His response to us after he awoke from a weeks-long stupor: "I wish I had listened to you sooner." This is regret of the saddest kind. And we wonder if we could have done more to convince him.
So, here we are, faced with yet another train-wreck of a patient, taking his body to the edge, taunting death and disability with a uncaring sneer, all of that alcohol pouring over a diseased body like gasoline on a fire. Can I convince him to change his ways and avoid a fate even worse than death? The odds are slim, but we'll try.
Does he truly conjure the ghosts of patients past? Oh yes, but in many ways his own inner ghost is just waiting with baited breath for the opportunity to leap from its mortal vessel and cavort among the other ghosts haunting this city of ours. And if he's dead set on releasing his ghost, then there may only be so much I can do to deter his trajectory from this overpopulated path of self-destruction. Unfortunately, he has a great deal of willing company on this sad and nihilistic journey, and the influence of his compatriots may completely overpower any dent I could ever make in the armor of addiction.
Ghosts, armor, disease, destruction---just par for the course on a very average day. God/dess help us all.
Sunday, November 12, 2006
Saturday, November 11, 2006
This film, which riffs on the notions of perception, existential angst, and the relativity of reality, brought especially to mind the recent struggles of a patient. On Hallowe'en night, I wrote of a very unfortunate man who is now debilitated by a miserable constellation of ailments, the most disturbing of all being his sensation that he is fighting with the Devil himself every day, barely resisting mental and psychic torments that eat away at his sanity and diminishing sense of comfort. His pain is palpable, and we feel helpless in the face of such suffering.
Leaving the theatre and talking with Mary, I realized that there are sometimes no rational explanations for conditions or symptoms with which we are faced as providers. There are times when patients present with such intractable psychic suffering that we are helpless in our inability to make any headway in alleviating that most acute distress manifesting before our eyes. How I have watched people cry in fear, tortured by demons I cannot comprehend, only to go home to my cozy house at 5:00 and try to forget what I heard and saw. And sometimes I ask myself, "How can s/he live like that? How can they go on?"
Will Ferrell's character hears a distinctive voice in his head. He entreats his friend---and even strangers---to listen. They cannot perceive the voice that he does. A psychiatrist suggests schizophrenia and medications to alleviate the symptoms. Any moderately well-trained medical professional will, upon hearing a patient speak of internal voices, begin the differential diagnosis by considering a thought disorder or peronality disorder. And why wouldn't they?
But what would a traditional medicine man think? What would an exorcist say? How would a Wicca practitioner approach such symptoms? What, pray tell, would a priest or rabbi surmise? This film made me realize that, of course, there is always a place for antipsychotic medications---which, in fact, our patient is currently taking---but are there not possibly layers of reality and layers of belief that supercede and resist all medicalized and compartmental thinking and treatment? How many of these manifestations simply will not respond when treated within our Westernized box? And, even so, what are we to do in any case?
I recently attended "Psychiatric Grand Rounds" at a local medical center wherein a speaker from the New York City area lectured on the phenomenon of "Ataque de Nervios", a set of symptoms generally manifesting in Latino subjects wherein the patient experiences extreme states of mind---including hallucinations and hearing voices---that does not respond to normal medical/psychiatric treatment. At The Columbia University Medical Center Department of Psychiatry, a specialized bilingual-bicultural staff has created a treatment center in which Latinos are recognized as experiencing psychiatric manifestations which are singularly culturally distinct, necessitating sensitive and non-traditional methods of treatment and diagnosis. Without offering a complete explanation of why Latinos in particular experience such extreme states of mind distinct from what we know as "mental illness", alternative methods of treating such individuals are practiced and fine-tuned through ongoing investigation.
Other organizations ---be they Buddhist, religious, or strictly non-spiritual---offer a variety of patient populations myriad approaches to what some call mental illness or others simply call "extreme states of mind". We must also consider the fact that in cultures like India, those who here in the West would be considered mentally ill are in that culture often revered as sages, individuals particularly "touched" by the Divine. And who are we to say that they are erroneous in their thinking?
Will Ferrell's character presents with a manifestation of symptoms which challenge those around him in their ability to understand and accept his perceptions. Seen as crazy, he is convinced---and perhaps can convince others---that his perceived strangeness is not necessarily what it seems to be. As with my suffering patient, is it not entirely possible that there is something else at play to which we are not attuned, something which only he can sense and experience? The other day, my psychologist colleague and I were discussing this patient's case. She looked at me with perplexity and asked, "So what do you think is going on with this guy?" I responded with a simple question: "Possession?" She looked at me and realized at that moment that perhaps I wasn't kidding. I wasn't. But did I write that in my notes? Take a wild guess.
My point here is this: there is so much we don't know. In fact, I'd wager a bet that there's alot more we don't know than we'll ever know. (Oops, now I'm sounding like Donald Rumsfeld---and that's scary.) We can thump our copy of the DSM-IV, recite from tomes of psychiatry, point to case studies and cohorts, and expound upon our vast realms of knowledge, but in the end, we are not inside our patients' heads, and there are aspects of existential angst that we simply cannot neatly codify. Even so, where do we go from here?
Do I think an antipsychotic may help my patient cope? Yes. Do I feel he might benefit from culturally sensitive psychotherapy? Assuredly. Do I feel that these measures will permanently and irrevocably assuage his suffering? Negative. Are there perhaps aspects of his behavior and psychic distress that we will never understand? Absolutely. Do I wish to see him free of his distress and pain? More than words can say.
We have only scratched the surface of the doors of perception. Consciousness and thought are only primitively understood. The spiritual nature of human beings is even less clearly perceived (and in some quarters baldly mocked and denigrated). I do not understand what is apparently destroying my patient from the inside out and do not pretend to know the answer. We have some tools at our disposal, however insufficient they are, and we can only suggest that treatment which our patient will accept as plausible. But if my patient wants to see a "curandero", or attend a Pentecostal church where he can speak in tongues and be possessed by the Holy Ghost, I will encourage all approaches and their potential for healing. In this world of unknowns and inexplicabilities, the powers of faith and love and compassion can sometimes heal that which is unaffected by science, medicine, and technology. So, is it all stranger than fiction? You bet. And perhaps the only thing we can truly do is let the mystery be and offer what we can. An unsatisfactory answer for the Western mind, but one with which I choose to sit for now, until my own doors of perception open in a as-yet-unforseen way. Until then, reality may continue to simply be stranger than fiction. And maybe that's OK.
Friday, November 10, 2006
This is today's meditation which I received by email from Sogyal Rinpoche. I receive these missives daily, and this one touches my deepest heart on this day, my mother's birthday.
Evoking the power of compassion in us is not always easy. I find myself that the simplest ways are the best and the most direct. Every day, life gives us innumerable chances to open our hearts, if we can only take them. An old woman passes you with a sad and lonely face and two heavy plastic bags full of shopping she can hardly carry. Switch on a television, and there on the news is a mother in Beirut kneeling above the body of her murdered son, or an old grandmother in Moscow pointing to the thin soup that is her only food. . . .
Any one of these sights could open the eyes of your heart to the fact of vast suffering in the world. Let it. Don’t waste the love and grief it arouses. In the moment you feel compassion welling up in you, don’t brush it aside, don’t shrug it off and try quickly to return to “normal,” don’t be afraid of your feeling or be embarrassed by it, and don’t allow yourself to be distracted from it. Be vulnerable: Use that quick, bright uprush of compassion—focus on it, go deep into your heart and meditate on it, develop it, enhance and deepen it. By doing this you will realize how blind you have been to suffering.
All beings, everywhere, suffer; let your heart go out to them all in spontaneous and immeasurable compassion.
Thursday, November 09, 2006
There's a patient that I've written about in the past who is on my mind. Being white and about my age, he shares with me certain cultural common denominators, despite his coming from a very different socioeconomic background---working class, alcoholic abusive father, no high school diploma, stints of homelessness, alcoholism, and life-threatening chronic illness. Taking those similarities and differences into account, it's no wonder that we get along on some levels, but are universes apart on others. And it is here that the codependency begins.
My patient, having given up the drink and hopped on the wagon, no longer has the alcohol-soaked social connections which previously filled his life. While he is proud of his sobriety of almost two years, he also feels lonely in that sobriety, failing to find a social milieu in which he can make new friends and acquaintances. Underlying mental illness does indeed make his social life more challenging, and a curmudgeonly demeanor only adds to the boundaries which keep people at bay or on their guard when around him. Although he constantly complains that people look at him like he's crazy, his predilection for talking aloud and laughing to himself certainly keeps strangers at arm's length and precludes normal casual social interaction. Like I've told him before, if you act like the crazy guy on the bus, that's how you'll be perceived and treated. One reaps what one sows, even inadvertently so.
Since he has lost his social circle, this gentleman looks to me, one of our counselors, and the administrative staff of our office as part and parcel of his social life. He sometimes exclaims that we are his "only friends", and he periodically cycles through undisguised crushes on various members of the front office administrative staff, at times bringing gifts (other than small offerings of candy or snacks) which cannot be accepted. He even went so far as to give our counselor (for whom he proclaimed undying love) a $200 portable DVD player which was refused on the spot. He was crushed for days.
Several times, I have taken this patient out to lunch, as I will occasionally do with my more isolated clients. As he complains of his loneliness and isolation, I sometimes feel pangs of guilt over my privileged life, comfy home, circles of friends, supportive wife, loving family, and ability to vacation and recreate (in moderation, of course) as desired. When he tells me that he has no one to go to a football game or movie with, my heart sinks. When I hear of his many solo trips around our region to various events, I cringe. Knowing what town I live in, he drops hints that he had looked for me downtown on a recent Saturday at the Farmer's Market but didn't see me. He comes to my town to see local college football and basketball games, sometimes sleeping on a couch in the Student Union if he misses the last bus back to his house (forty-five minutes away).
Many a time my mind has wandered to a scenario in which this gentleman---or another patient---visits my home. How would it appear to him? What would it tell him about me that he does not already surmise? What further levels of envy or jealousy would it engender? Would I end up in a situation similar to that of Richard Dreyfuss' character in What About Bob? He's even made comments that he may simply find my house one day and surprise me. Oh dear. What would Richard Dreyfuss do?
How many patients have I honestly considered taking home and caring for? Far too many. How many have I actually gone so far for? None, and never will I do so. How many former patients have I promised to maintain contact with after leaving a job for another? One, and that contact remains active. How many patients' children have I given Christmas presents to? Quite a few. Will I do it again? Seguro que si!
So, when is it codependency and when is it simply being human? When is it OK and when is it going too far? How guilty does one allow oneself to feel vis-a-vis the lacks in others' lives when compared to one's own? These and other questions loom large in such work, and no matter how firm one's boundaries, they will always rear their heads again.
Wednesday, November 08, 2006
There are many more firsts to recount, but my aim here is not to be a political pundit---there are plenty of talented bloggers for that. Rather, my aim is simply to express my hope and optimism for a movement towards more humanism, more inclusivity, and long overdue diversity of leadership in government.
Despite my deeply ingrained cynicism about politics in general, I am allowing myself an experience of joy today, tempered by realism and the knowledge that power, although often used for the good, is also seeded with the potential for corruption. For now, my cynicism is overidden by celebration, and I allow hope to fill my heart.
Sunday, November 05, 2006
This index can be utilized in ways both trivial and profound. While cooking dinner, a curious spouse might query the other, "How's your Quality of Life Index today, dear?" The elicited response to such a general question could be sarcastic, flippant, or thoughtful, and could very well engender quite profound and intimately soul-searching dinner conversation. There is obviously a great deal of room for interpretation by both interlocutor and responder, and wine with dinner may or may not appopriately lubricate the conversation.
Additionally, the QOLI can be something by which we somewhat objectively measure the actual quality of an individual's day-to-day existence. When examining the life of an individual with cancer, for instance, the QOLI takes on an entirely more dire connotation, and divers questions abound. How does chemotherapy impact quality of life? How are side effects altering lifestyle? Are numerous appointments causing strain on patient or caregiver(s)? Are emotional needs being met? Are their financial, transportation, or nutritional issues? Have end-of-life concerns been addressed? Is pain well-controlled? Does the patient truly wish to undergo treatment or simply wish to receive palliation of symptoms brought on by illness?
Quality of life is often associated with chronic and terminal illness, and is also frequently bandied about when discussing communities, cities, and regions of a state or country. In the face of a cancer diagnosis, for instance, the "community" of the family, friends, and loved ones of the patient are directly impacted by the diagnosis and subsequent treatment. Building upon this thought, one can look at the patient him- or herself as a "community" or country, replete with systems and processes which necessitate maintenance and attention. In the medical field, we often lose sight of these "small" areas as we rush ahead towards cure, flailing madly in the face of death. Do we sometimes forget quality of life as we railroad our patients through the labyrinth of pills and treatments? Do we forget to look them in the eye and ask, "Are you okay with this? Is this working for you?" Their humanity---that aspect of them which cries out for quality of life, quality of connection---can sometimes be left out of the medical equation.
So, in our rush through our personal lives---or through the crush of details filling our days as medical professionals---we must take time to assess, to contemplate, to digest what that elusive quality really is, for ourselves and our patients. If we cannot take the time to examine our own lives, to put our own proverbial houses in order, how can we assist our patients and clients to navigate those rocky and turbulent waters themselves?
With a close family member undergoing intense and life-altering treatment, our "family atom" is itself undergoing a transformational process. Not only are we examining our relationships closely, seeing the places where healing is needed, and mustering our strength for the days and months ahead, we are also looking at our loved one, attempting to ascertain his quality of life, and assist him to determine its trajectory. It is a moment of universal truth, of existential angst, and of all-too-human frailty. We will cut a swath across these well-travelled waters, hopefully leaving outmoded ways of being in our wake, taking on new, more empowered qualities when needed, and in times of relative calm, enjoying the view from the deck.
And you, dear Reader, as you sail along in your craft, floating in those same psycho-emotional-spiritual waters, how would you measure your quality of life and that of your loved ones? What objective number would you assign? What subjective phrase would you use to describe your plight? How would you come to terms with the reality before you? How, pray tell, would you characterize your life? It is a question which begs an answer, yet the answer can change from moment to moment.
This, then, is our charge: to never lose sight of the fact that our quality of life is subject to change, subject to the whims of circumstance, and equally within our grasp to direct to some extent. Let us all grab that rudder and steer for the shore which best represents our aspirations. And may those who have lost hold of that rudder---through illness or other unforseen events---be guided to make the choices which will serve only to improve and augment the quality of existence which is still possible. This is a tall order, yet one for which we can all sincerely pray, in hopes that all suffering individuals beset by the waves of misfortune or illness find their way to the shore wherein they will be embraced and their dreams fulfilled.
Friday, November 03, 2006
Thursday, November 02, 2006
Wednesday, November 01, 2006
Taking life seriously does not mean spending our whole lives meditating as if we were living in the Himalaya Mountains or in the old days in Tibet. In the modern world, we have to work to earn our living, but we should not get entangled in a nine-to-five existence, where we live without any view of the deeper meaning of life.
Our task is to strike a balance, to find a middle way, to learn not to overextend ourselves with extraneous activities and preoccupations, but to simplify our lives more and more. The key to finding a happy balance in modern life is simplicity.