Saturday, March 31, 2007

And a Cast of Thousands.....

Over time, I have come to share my own health challenges relatively frequently here on Digital Doorway, from the humbling experience of being a patient, living with Multiple Chemical Sensitivity, long-term struggles with depression, and adventures with chronic pain. As my own healthcare becomes more complex and challenging, my personal, experiential understanding of my patients' struggles also becomes more keen.

As I have related before, the majority of my patients have multiple co-morbidities, many symptoms of which mimic, exacerbate, or otherwise interact with the other co-existing conditions and symptom constellations. The presence of multiple chronic illnesses and related symptoms generally leads to the individual in question navigating an increasing number of providers and medical specialists. As I have described in previous posts, I spend a great deal of my professional time assisting my patients with coordinating their complicated care, often serving as the liaison and conduit of information between multiple providers who may or may not freely choose to communicate clearly with one another in a timely manner. In many ways, I am the outside agent who helps the left hand of the medical treatment team to know what the right hand is doing. When there are more than two hands---which is generally the case in most instances---my work is multiplied, as is the room for mistakes, miscalculations, and poor (or absent) communication. The resulting day-to-day action draws on both the worlds of tragedy and comedy, with no lack of soap opera intrigue for those who like that sort of thing.

Lacking my own care manager vis-a-vis my multiple medical challenges (as do the majority of patients, really), I juggle multiple appointments, tests, and various treatments. Reviewing the litany of upcoming medical appointments in my Palm Pilot recently, I was struck by the growing cast of professional characters who I have enlisted in my own production known with the working title of: "Keith's Health Care; Being A Play With Too Many Acts, An Ever-Increasing Cast of Characters, and Far Too Few Intermissions." Most of the cast play themselves quite well, needing precious little coaching from the wings. The trouble these days, though, is that the curtain seems to always be up, and the plot just never gets resolved. Who wrote this thing, anyway, and where did that orchestra come from?

The Cast
(not necessarily in order of appearance)

Nurse Keith----played by none other than Nurse Keith (Who else could do it? Maybe a cross between Ben Stiller and Woody Allen?)


Primary Care Physician----important and consistent, sometimes seems superfluous

Psychotherapist----newest cast member, but sure to be a star

Oral Surgeon----hopefully making only a brief cameo, never to be seen again

Physiatrist----kind and professional but limited in scope, may fade to background

Psychiatrist----useful and insightful; only makes an appearance every six months, thank God

Dentist----infrequent cast member, as well, but still important, along with rotating hygienist

Environmental Illness/MCS Specialist MD
----the indispensable cornerstone of current care team

MCS Doc's Nurse----very important resource for information and support

Gastroenterologist----will debut in May, hopefully for a very brief appearance

Neuromuscular Therapist---someone I always look forward to seeing, even when it hurts

Chiropractor----currently on the back-burner, but a casting-call may soon be advertised

Acupuncturist----character in development

While the reviews are slow in coming, some positive press has been seen in the blogosphere. Some feel there are not enough holistic providers in the cast, while others think allopathic medical providers should dominate the ranks of the dramatis personae. Parts of the script may need re-working, while some critics have panned the whole effort as self-indulgent and wasteful. Nonetheless, the cast will push forward with the current season, mixing comedy, drama, tragedy, farce, as well as Theatre of the Absurd.

So dear Readers, feel free to add your reviews to that of the others, and join us at any time for another installment in this post-modern journey of human existence. The show runs daily, and admission is, as always, simply a small payment of your precious time and attention.

Thursday, March 29, 2007

The Army, Nursing, and a Crisis of Care

The recent developments highlighting the broken healthcare system which cares for American military personnel comes as no surpise. This crisis is, to a large extent, a distillation of the problems pervading the nationwide healthcare system in general. While I would not venture to say that the military medical infrastructure is a microcosm of the larger country's system of care and insurance---it is far too large an animal to be classified a microcosm---it stands to reason that challenges faced by the country as a whole vis-a-vis healthcare would be reflected in the care of injured soldiers and veterans.

A nationwide---or worldwide---nursing shortage is impacting every level of healthcare, from schools and community health centers to hospitals and dialysis units. With precious little financial incentive from the federal government to ease the economic burden of attending nursing school, the relative cost of college has put nursing out of reach for many otherwise qualified candidates. Government subsidies of student loans seem to be mostly a thing of the past, with most students going into greater and greater debt as they juggle family, school, and work responsibilities. As gas, food, and housing prices soar, many are driven to simply make ends meet rather than pursue higher degrees. With fewer Masters-prepared nurses, the number of nursing professors decreases as well, thus limiting the number of new students schools can accept each year. With competition more severe, perhaps many potential nurses are being turned away from new careers in healthcare, opting for other more promising and lucrative careers in business or technology. For myself, graduate school would mean at least an additional $40,000 in debt, not to mention the fact that my earning potential would not increase dramatically from that extra education.

According to some reports, nursing within the armed forces is also in a crisis. As more and more military nurses are shifted to serve in high-need areas, wounded veterans and those in various states of rehabilitation languish in understaffed VA facilities or are lost in the maze of VA outpatient care. As a Nurse Care Manager, I understand how a trained and knowledgable nurse advocate can make all the difference to a confused and ill patient as he or she tries to make sense of an unrelenting bureaucracy. It appears that even brain injured vets are left to navigate the labyrinth of veteran healthcare without professional case management by a nurse, and it's no wonder that so many have fallen through the cracks, essentially stymied by a system seemingly contructed to thwart their timely recovery and deny desperately needed benefits.

I am certain that the nurses who work in these VA facilities work long hours, with large patient loads, often butting heads with a bureaucratic machine which works hard only to slow their patients' progress towards the positive end of the health continuum. It must be a frustrating place to be, and I wonder to myself if the stressors far outweigh the benefits.

Major General Gale Pollock, the chief of the Army Nurse Corps, testified before Congress this week that there is no money in the military budget to hire more nurses to care for the soldiers returning from Iraq and Afghanistan. Nurses appear to be leaving the Armed Forces at rates double that of other officers, and crucial areas of nursing speciality seem to be suffering the lion's share of that hemorrhage of personnel. My blogging colleague over at Universal Health has written an eloquent series of posts which detail and explain the way that nursing shortages (and nurses' silence) has exacerbated the crisis within the VA healthcare system.

As I and my colleagues continue to burn to a crisp within a healthcare environment which squeezes us dry while offering fewer incentives to continue giving our all---other than the satisfaction of a job well done under great duress---our brethren in the nursing corps of the Armed Services suffer the same deprivations and low morale. Even as I have encouraged friends and students to pursue careers in nursing, I hope aginst the odds that these fresh faces will bring perspective and passion to an ailing industry, perhaps serving to assist in the transformation of American healthcare as a whole. Just as our national economy would collapse overnight if our investors in China and Saudi Arabia were to suddenly withdraw their underwriting of the once mighty American Dollar, our healthcare system and the vulnerable populations which it serves would also implode if attrition rates continued to climb faster than our medical and nursing schools can churn out new victims---er, I mean, recruits.

For many of us, we are nurses in order to vocationally express our desire to contribute to the health and well-being of our fellow human beings in a way which feels intellectually stimulating, economically feasible and emotionally satisfying. Caring for patients and serving to improve their overall health outcomes is a large part of what nurses do, and we strive for the same goals within the civilian and non-civilian healthcare systems. Sadly, we are all universally affected by a government which preaches care and compassion yet simultaneously invests its riches in arms, war, and corporate welfare. Poor planning and rosy visions of an easy victory in the Middle East by ignorant military strategists has only served to exacerbate the crisis faced by returning soldiers in need of adequate medical care for which no funds exist. Meanwhile, the national healthcare system self-destructs, Medicare Part D limps along, the numbers of uninsured Americans rises, and homelessness becomes more pervasive. As the working poor struggle to make ends meet, often choosing food over preventive healthcare, corporate CEOs walk away with their subordinates' IRA funds in order to underwrite lavish lifestyles that only their hard-working employees truly deserve. Perhaps Kenneth Lay now regrets his malfeasance as he slow roasts in his special CEO Purgatory, but Donald Rumsfeld is probably at this moment playing golf and travelling the well-paid lecture circuit as a retired (and generously pensioned) civilian leader of a miltary which he decimated with his ignorance and hubris.

The personal is indeed political, and when one chooses to serve his or her fellow citizens within the healthcare industry, one's politics can only inform one's view of the powers which hinder or buoy one's efforts to provide that care. There is much to be angry about as one gropes blindly for a foothold in this country which seems destined for self-destruction. Here on the front lines of healthcare, we dig in our heels, bow our heads, and continue to provide the optimal care that we are able, even as the Powers That Be seem hell-bent on our failure.

Wednesday, March 28, 2007

The Nurse and Psychotherapy

Having lived with depression all my adult life---and possibly childhood, as well---I am not one to beat around the bush when it comes to talking about mental illness, psychotherapy, and antidepressants, even when the subject is myself. It's one of my missions in life to normalize conversation around these issues, to take away the stigma, making it easier to be forthright about such matters, even in "polite company".

So, yes, I'm in psychotherapy again, after a three-year hiatus. The last time it was precipitated by the murder of a friend and the resultant acute post-traumatic stress. Now, work and career, chronic illness, pain, and life in the nursing fast-lane made me place the call. Insurance companies make choosing a therapist easier in one respect---one must choose from those providers listed on the comany's website, thus winnowing down the astronomical number of choices (especially in our area where you can't throw a stone without hitting a therapist of some kind on the head.)

That said, my brief game of telephone-tag with a number of local providers yielded an initial "acquaintance appointment" a few weeks ago with one of these individuals, but within five minutes of sitting on that comfy couch I knew that I had chosen well. Perhaps it was chance, perhaps not, but the happy result is a new therapeutic relationship of which I am on the receiving---rather than the giving---end.

On the work front, today's slog through the trenches of inner-city nursing yielded an intervention with a suicidal patient with a personality disorder who, twenty-two months sober, feels his life is at an end due to isolation and loneliness, refusing any help or psychiatric evaluation. This was coupled with a new patient with End Stage Liver Disease (ESLD) who's home with hospice care, drinking himself to death, mentally and physically taxing his 70-year-old caregiver who is quite ill herself. Add to the mix a young paraplegic with what appears to be a raging urinary tract infection, possible acute kidney failure, and a staunch refusal to go to the ER even though she can't produce enough urine to culture. Yikes.

So, the intrepid and exhausted nurse sits himself in the therapist's office at the end of the day and examines his proverbial navel. The conclusion is that a great deal more self-examination is in order, not to mention self-care, rest, and plans for further means of self-protection and healing in a world gone mad.

A nurse and psychotherapy go together like cheese and crackers, cereal and milk, culture and sensitivity. What took me so long?

Tuesday, March 27, 2007

A Reprieve

"I don't know why I did it," he said. "This guy came over. He knew I'd been through a hard time, and he pulled out this bag of heroin. 'I have something for you,' he said to me. I didn't do the whole thing, but I snorted a bunch of it. I'm such an idiot." He crossed his arms and rolled his eyes.

"Well, it happens. And now here we are. Let's start again, OK?"

"Yeah, OK. I'm such an idiot."

"You're not an idiot. You made a questionable choice under stress. Don't beat yourself up about it. Really."

We're sitting in an exam room, waiting for the specialist to come in.

"You've done a great job. It's been a hard year, you've been through alot. There's no reason you can't stay clean again for a long time." I hit his knee with the back of my hand playfully.

"I don't know what I'd do without you guys," he says. "You've all been so kind to me."

"Sure, we 're nice to you, but it's you who's doing all the work," I respond. "You make it easy for us to help because you really try. Plus we like you."

The gastroenterologist comes in and we get down to business. My patient praises the doctor for his "bedside manner" and thanks him for his patience with is questions.

"Just tell me, doc," he asks. "Do I have a couple of years to live?. Please be honest."

The doctor sits across from my patient and looks him in the eye. "Look, you're really doing OK. There's no emergency here. I can't make predictions, but just stay clean, eat well, get some exercise, take your meds, go to your appointments, and we'll talk again in six months. You're all right."

"Thanks, doc. I have a hard time believing that, but I'll take you at your word."

We leave the office after scheduling an important procedure and a follow-up appointment. The sun is shining, the air is warm. It's finally Spring. This patient certainly has his issues, and he often walks a knife's edge in terms of his health, sobriety, and ability to remain focused. But for today, we have a reprieve, a new start, another chance at change and growth. And tomorrow? Only time will tell.

Monday, March 26, 2007

A Snowball Gathers Momentum

Twelve days. For twelve days, disabled elders in the community where we work were stranded in public housing without a working elevator. A group of eight-story high-rise buildings, originally built in 1961 for low-income families, now house poor, disabled elders. Constructed before the Americans with Disabilities Act (ADA), these decrepit buildings have only one elevator each. Nowadays, this would be unheard of, but in the 1960's, I'm sure it wasn't given another thought. And evacuation plans were probably just a pipe-dream, with occasional lip-service to assuage the bleeding hearts and housing advocates.

Public housing authorities do not exactly have stellar reputations, and in this city of ill repute, where cronyism and corruption are seemingly imprinted on the city's official seal, stealing from the poor to benefit the undeserving rich has been de rigeur for decades.

A public meeting today in the local community room brought outrage, measured argument, cynicism, paternalism, the media, and politicking at its most tedious. The city councillors expressed their official outrage. The housing authority director pointed fingers and blamed the weather and the victims, claiming ignorance, poor communication, and any other excuse that seemed plausible. Those of us in the room who know the score are only hell-bent on making sure our seniors and disabled community members are provided for, heard, respected, and accomodated. It will be an uphill battle.

Whether we verbalize it or not, we all know that if this group of seniors had been white, with white families and connections in the community, this intolerable situation would never have mushroomed into the crisis it is today. Outrage certainly has its place, and enough outrage was expressed today to perhaps succeed in lighting some hot fires under a few choice buttocks.

Communication, cooperation, foresight, and meticulous planning are needed to overcome barriers which place the elderly, the poor, and the disabled at risk. Coupled with outdated architecture, bureaucratic stupidity, organizational chaos, and a lack of anyone willing to take enough responsibility for what went wrong, only a coalition of community leaders and key agencies can partner with the residents to effect change. Change may be organizationally painful, and there may be kicking and screaming along the way, but a snowball was pushed towards the top of a hill today, and one can only hope that it will continue to gather momentum and mass, crushing any bumbling bureaucrat who gets in its way.

Sunday, March 25, 2007

Family and Elders

A spirited celebration of my step-father's 80th birthday was the purpose of a weekend sojourn to New Jersey. Living with and fighting against pancreatic cancer, he has had quite the year, as have we all by extension. Life-threatening illness often has a way of underscoring the importance of family, and we are no exception in this regard.

In just over a month, my father will mark his 77th birthday, and that occasion will again facilitate a gathering, a celebration, a day to acknowledge the passing of time and the ageing of our beloved elders.

There are so many elders in our society who are overlooked and forgotten. The next time you pass an older woman or man on the sidewalk, consider for a moment their plight. Are they alone? Are they loved? Are they warm? Are they fed? Are they blessed with the closeness of family, the warmth of younger generations venerating their wisdom and age and perseverance? You don't have to talk to that person if you don't want to. You don't even have to catch their eye. But really look, really see, and take into your heart that person's long road of survival until this very day when you behold them. And then remember this with the utmost certainty---you will some day walk in those shoes.

Saturday, March 24, 2007

A Niece After My Own Heart

My niece Sabina, already a seasoned activist at 18 years of age, just returned from her "alternative Spring Break" trip to the Dominican Republic under the auspices of Tufts University. Calling from the Atlanta airport on her way home to Boston, she breathlessly expounded to me the eye-opening experience which she had just undergone. Dispensing medications to isolated rural villages, her group targeted Haitian refugees living in substandard conditions, often without access to medical care and proper sanitation. Having done similar work myself in an impoverished region of rural Jamaica, I can fully relate to the transforming power of such an experience, as well as the challenge of reintegrating back into the "normal" day to day life which you may now seem to have outgrown.

With sights set on social justice, activism, community organizing, and a Masters in Public Health, this young woman is poised to change the world, along with many of her peers. I am in awe how such a young person can accomplish so much, seemingly burning her wick at three ends, balancing school, activism, and speaking engagements at colleges and universities around the country. Just recently, she succeeded in helping to organize a protest in New York City to underscore the economic support which China is providing to the Sudanese government vis-a-vis the on-going genocide in Darfur.

An enormous phalanx of spirited young activists are poised to take the world by storm, and I am inspired and proud, happy to stand at their side. Hope is certainly a thing with wings, and this young woman who I love has wings powerful enough to lift us all.

Friday, March 23, 2007

Healthcare Disparities and Providers Who Care

It was incredibly refreshing and inspiring to attend an open house this evening for a new Infectious Disease (ID) practice in our city of employment. In the last 25 years, the role of the ID provider has greatly expanded, taking center stage in the fight against AIDS. This particular physician, having emigrated from Puerto Rico to attend medical and public health graduate school here in the US, was struck by the disparities being experienced by her own ethnic community. This realization led her to pursue a specialization in infectious diseases, taking up the gauntlet of HIV/AIDS treatment and the stemming of the waters engulfing the Latino community.

In her presentation, the director of this organization drove home the point that disparities in healthcare vis-a-vis the care of ethnic minorities is an area requiring the utmost attention and sensitivity.The centerpiece of the presentation, other than introducing her staff, revolved around the notion that the target population---mostly HIV- and Hepatitis C-infected low-income Latinos---need culturally competent and flexible healthcare which caters to their special needs and challenges, not only medically, but also within the psychosocial and socioeconomic realms.

Low-income patients face many challenges in terms of childcare, transportation, financial constraints, social stigma, as well as disempowerment and disenfrachisement from the society at large. Complex multi-generational family structures, chronic illness, and other challenges complicate the pursuit of care for diseases as complex as Hepatitis and AIDS, and this particular provider clearly stated that her practice strives to be flexible to the patients' life circumstances which may inhibit or challenge care. Flexible visit times, allowances for late arrivals, and asistance with transportation, childcare and other psychosocial issues all pay dividends in terms of the potential for successful treatment.

As we have learned in our practice, flexibility and understanding go a long way towards fostering positive relationships between provider and patient, and it is upon that foundation that successful treatment is achieved. If a patient does not feel seen, understood, and welcomed as they are, the ability to provide holistic and comprehensive treatment is immediately handicapped and may eventually backfire. It is clear that other practices are pursuing the same laudable goals to which we also aspire, and when I feel that another provider is singing my song and walking the same path, that is indeed a heartening experience which I do not take for granted.

Thursday, March 22, 2007

Drawing a Blank

Having not posted for two days, I'm feeling this nagging feeling that I "should" blog. That said, I feel no surge of compelling information or stories to share. Sometimes, the ideas flow without effort, and I madly scribble notes on scraps of paper which I stuff into my pocket to expound upon later. At other times, I send myself emails to archive with ideas for future posts. Still other times, a crystallizing moment arrives and the words spill from my brain to fingers to keyboard to your eyes in a flash.

At this moment, nothing grabs my fatigued mind. I draw a blank. I come up empty. The well feels dry, or at least unyielding to my supplications for inspiration. Sure, I could probably conjure up something if I tried hard enough, squeezing out a pallid story or observation. But for now, I simply allow that well to be in its chosen state as the emotional water-table rises of its own accord. I know, before too long, ideas will flow without effort, words stringing together a picture, an image of life through my eyes.

For now, I choose to sit with this sudden literary muteness, knowing full well that this too shall pass, most likely no later than tomorrow. Til then, be well.

Tuesday, March 20, 2007

Vernal Equinox

Tonight
the Vernal Equinox
bestows its luminous gifts;

Sickle moon,
Venus shining bright,
A lone coyote crossing a snow-covered field,
illuminated by our headlights.

Monday, March 19, 2007

Birthdays, Loss, and Forgiveness

Today would have been the 43rd birthday of our dear friend Woody, unjustly killed in his prime by the police five years ago. He and I had always talked about celebrating our 40th together---we were both born in 1964. Sadly, he never made it to 40, so these subsequent birthdays and holidays can sometimes be like salt in a wound.

Today, his family came to Mary's inner city senior center to celebrate the English as a Second Language (ESL) class which they have funded in his memory. The students demonstrated their learning, expressed their gratitude, and we all shared carrot cake (Woody's favorite) together. His death has brought to life so much, and his memory fuels the dreams of many.

Time is an interesting agent in this human world of ours, and its passing can bring many things: healing, forgetfulness, faulty memory, nostalgia, forgiveness. I long ago forgave my friend for leaving us so soon. I am yet to fully forgive those who took his life. They apparently did so in full belief that they were carrying our their duties. For me---for us---their miscalculation and blindness towards human nature left us bereft of a loved one and family intimate. Forgiveness can come in many guises, yet I still do not know in what guise my ability to completely forgive will arrive.

For now, sweet memories flood my mind, and the special place in my heart where his memory lives is sweetly sad. His physical absence is palpable, and the desire for him to walk through the front door is tremendous. His friendship and kinship are irreplaceable, and his loss is undeniably harsh. This suffering is a meditation, a place from which to learn non-attachment and release.

This day is, for us, a holiday, and in recognizing its importance and sacred sweetness, we honor not only our departed friend, but ourselves.

Sunday, March 18, 2007

Foot In Mouth Disease

Just this afternoon, Mary and I were at our local health food supermarket---Whole Foods---picking up an enormous carrot cake. Tomorrow is the birthday of a dear friend who was tragically killed by the police in the December of 2001. Every year, we buy this cake---his favorite---and share it with friends (and sometimes his family) on the anniversary of his birth.

This time, we took our half-sheet cake to the checkout counter and I gingerly lay it on the conveyor belt. Taped to the top was the original invoice with our specific requests for the wording and decorations, with "HAPPY BIRTHDAY!" in large letters.

Being friendly and inquisitive, the young twenty-something gentleman at the register bantered with me as many cashiers will, especially at this particular store. Sliding the cake along the conveyor and ringing it up, he looked at me and said, "So, I see it says happy birthday on the cake. Who's birthday is it?" He smiled widely.

At that moment, my world seemed to come to a grinding halt. Mary told me later that my face turned very red in that moment as she watched me from nearby. So many things can go through one's mind in the split-seconds it can take to respond to an innocent question. I consciously wondered if I should just say, "Oh, it's for a friend" and leave it at that, or choose to match his inquisitiveness with an authentic answer. I must have weighed the pros and cons of both in a nano-second and chose the latter.

"It's for a friend who died five years ago," I responded. "Tomorrow is his fifth birthday since he died."

"Oh," he responded blankly. " I feel like such a jerk."

"That's OK," I said. "Thanks for asking."

If he had left it at that, he would have been able to quit while he was (sort of) ahead. However, instead of removing his foot from his mouth, he chose to insert it even deeper into that most misguided but well-meaning of orifices by cheerfully adding, "At least you've had enough time to get over it."

I don't know what color I turned at that point, but I again found my mind racing, and my awareness of the hustle and bustle around me was nil. I considered mentioning that he had been murdered in cold blood by the police and that, no, I have not "gotten over it", but chose instead to simply let it drop.

I thanked him, let Mary take the receipt (because I could not look the cashier in the eye), thanked the bagger, and picked up the heavy box with Woody's memorial dessert safely inside.

Exiting the store, Mary and I processed the interaction, distractedly failing to locate our car for several minutes. Sitting in the passenger seat, my laughter bubbled up as I considered that the cashier may never dare to ask another customer whose birthday it is. I imagined the conversation he had about it with his coworker who bagged our groceries, and Mary said that Woody was probably having quite the cosmic chuckle about the whole scenario.

Saturday, March 17, 2007

Compassion and Enlightenment

As you continue to meditate on compassion, when you see someone suffer, your first response becomes not mere pity but deep compassion. You feel for that person respect and even gratitude, because you now know that whoever prompts you to develop compassion by his or her suffering is in fact giving you one of the greatest gifts of all, as you are being helped to develop that very quality you need most in your progress toward enlightenment.

That is why we say in Tibet that the beggar who is asking you for money, or the sick, old woman wringing your heart, may be the buddhas in disguise, manifesting on your path to help you grow in compassion and so move toward buddahood.


---Sogyal Rinpoche

Friday, March 16, 2007

Snowy Friday and its Denouement

He called on this snowy afternoon to tell me that he didn't feel well. With a history of cardiomyopathy, hypertension, atrial fibrillation, and atrial flutter, I knew "not feeling well" could mean many things. Bearing in mind that this patient had been sent to the ER by his doc directly from the clinic 12 days ago, I also recalled that he left the hospital AMA before a full cardiological workup could be completed. What to do? I suggested calling 911 and was met with a stony silence on the other end. Against my better judgment, I offered a home visit in 30 minutes.

"But that's so far away. What if I die before you get here?" he asked.

"If you think you may die in the next 30 minutes, you'd better call 911 right now!" I responded.

"No. I'll wait." He hung up.

The roads were almost unbearably icy, the snow blowing hard. With schools letting out early and my office closing up shop on this ugly Friday at 3pm, I was heading out on an urgent visit armed with a blood pressure cuff, a stethoscope, and a whole lot of nothing.

He was sitting on the couch looking like death warmed over. Blood pressure: 90/50. Apical heart-rate: 44/minute. Respirations: 24/minute. Skin: pale, dry and warm. Symptoms: chest pain, shortness of breath, headache, dizziness. His ten birds, locked in cages, squawked relentlessly. I turned off the TV to decrease the extraneous noise. I was beginning to regret agreeing to a urgent home visit. Why didn't I just call 911 from the warmth of the office? Super Nurse strikes again.

"Did you take your meds today?"

"Yes. But I was out of my Lisinopril. My cousin was here. She has high blood pressure too. I told her I was out of one of my blood pressure meds. She said we should split her pill. She broke it in half and we each took a half a pill. She said it was for blood pressure, anyway." His face crumpled with exhaustion.

"What pill was it that you took?" I asked calmly, running his other meds through my mind quickly. I prayed for patience.

"I dunno. Some pill. It was white. Ooooh, my chest hurts now."

"Can we call your cousin to find out what she takes?" I ask hopefully.

"I don't know her number."

I dialed 911. The paramedics arrived in 15 minutes. The portable ECG looked initially OK. The patient: ghastly, ashen, short of breath, moaning.

"Thanks for coming out, guys." The paramedics wheeled him out into the blustery late afternoon.

I scrape the ice and snow from my car. The traffic is crawling. The usual five minute ride to the office takes about fifteen minutes. My desk is piled with unfinished notes, charts, the detritus of a day wherein time to sit and organize is a lost cause abandoned at about 10am. Several colleagues still struggle to finish the day and head home before the roads get any worse. Reports of accidents are coming in on the local radio station. Mary's at the Senior Center waiting for me to pick her up.

I stuff the papers in my bag, close the computer and head out the door. I know what part of my Friday night will consist of: finishing paperwork, making notes for Monday's to-do list, and then blogging about the day as a way to exorcise the stress, and watching the snow drifts grow outside the window.

Monday seems so far away right now. Let's keep it that way, shall we?

Thursday, March 15, 2007

Diagnosis: Loneliness

Visiting a patient today who has been out of touch and difficult to reach, I realized how isolation and loneliness will inevitably undermine any effort to improve an individual's health over the long term. The details of his many comorbidities aside, one of the conditions from which my patient suffers most is loneliness, and the prescription for its treatment is not easy to elucidate or prescribe.

"I hate everyone and everything!" he yelled, staring at the high definition television he purchased last month. "I have no one to do anything with. I do everything alone. When I was drinking I had friends. And now? Twenty months sober and I have no one!"

When I arrived, his bottles of medication were strewn across the floor of his apartment.

"I ain't takin' this shit no more! F**k medication! F**k my health! I should just f**ckin' die!" He continued to stare at the TV, changing the channels.

I gently took the remote control from him, turned off the TV, and placed the remote behind me on the couch.

"What the f**k are you doing?" he yelled.

"I'm getting you to listen," I said.

The conversation continued in earnest, peppered with laughter, some return to swearing and yelling, and an eventual handshake and promise to talk tomorrow. I felt fairly certain that the suicidal talk was just that---talk, and nothing was going to happen to him tonight.

"Look," I said. "I know you feel bad. I know you're lonely. You're sick of your meds. Let's get together and talk about what to do and how to start over, OK?"

"OK." He smiled. "Hey, tell your wife I said hi, eh?" He met Mary at my office once a few months ago and now gives me advice on what movies to take her to see.

"I will. No problem. Are you gonna be OK?" I hold the screen door open, making eye contact with him one more time.

"Yeah, I guess. F**k it! I'll talk to you tomorrow."

"Good night."

"See ya, and thanks."

Solitude. Loneliness. Isolation. There's no pill, no test, no easy solution. And often, as clinicians, we're flying by the seat of our pants and pulling rabbits from hats. My rabbit today was simply being present. And the hat? An old-fashioned nursing cap.

Wednesday, March 14, 2007

Of Voices and Visitors

We sit in an exam room as I prefill her med box, our new Wednesday ritual at 11am.

"There are alot of people in my apartment lately," she says.

"Oh, do you have visitors?" I drop meds into the box's compartments---click, click, click.

"No. I see my parents, my grandparents, my dead sister, and some people I don't even know. They just walk through the living room and bedroom."

"Do they scare you?" I continue to drop the meds in the box.

"Not really, but I also hear voices. They call my name and say hi."

"Do the voices ever tell you to do bad things, to harm yourself?" I finish the meds and bring my chair close so that our knees are almost touching.

"I don't think so, but sometimes I go in the kitchen and look at all the knives."

"Does that scare you?"

"No. I never want to actually do anything. I just look at the knives. But then, sometimes all of a sudden I find myself standing facing a wall in my apartment with my nose about this far from the wall." She measures an inch with her thumb and index finger in the air in front of her face. "Then," she continues, " I realize I'm against the wall and have no idea how I got there or how long I've been there. So I look at my hands and feet, and remind myself that I'm in my body. And at other times, I can see my body across the room. I like that feeling."

"Have you told anyone else about these experiences?" I place my hand on the back of her left hand which is resting on her knee.

"Well, it's different now. I'll tell my therapist about it next month."

"Do you mind if I call your therapist to tell her what's going on?"

"I would appreciate that alot. Thanks." She signs the consent form that I offer her.

"Is there anything else?"

"Just that sometimes I forget who I am. It takes me time to remember my name and where my apartment is. Is that bad?"

I put my arm around her as we walk down the hall towards the waiting room. She has convinced me that she's safe, that she has no thoughts of self-harm, and that the voices and visitors are not causing her undue distress.

"I'll see you next Wednesday at 11. Promise to call me if you feel bad?"

"Oh, yes, of course! Thanks so much."

She exits the clinic into the sunny world outside. I walk back to the office to place the call to her therapist.

Just another day........

Tuesday, March 13, 2007

HBO Addiction Project Launched

In a recent post, I mentioned the fact that HBO, in partnership with the Robert Wood Johnson Foundation, the National Institute of Drug Abuse, and the National Institute on Alcohol and Alcohol Abuse, is beginning a comprehensive effort---The Addiction Project---to bring addiction to the fore of the American mind. The main thesis of the project is that addiction is a preventable, treatable, chronic brain disease with identifiable patterns of remission and relapse. That project launches in earnest this Thursday, March 15th at 9pm, with the initial airing of the 90-minute centerpiece film, followed by subsequent airings as well as 14 additional short films targeting specific aspects of addiction.

This project is a "multi-platform" undertaking involving cable television, the HBO website, podcasts, a DVD, a companion book, four independent documentaries on HBO2, and a 30-city community outreach program reaching across the country. You can access Robert Wood Johnson's site dedicated to the project here. The HBO Addiction Project website is designed to respond to the visitor using "dialogue navigation" which utilizes information entered by the user to guide the visitor to specifically targeted information regarding treatment, family support, or other aspects of addiction and its multifactorial effects on life, health, healthcare, and community. HBO will also be making all 15 films available for free on their website once the initial airing has occurred on March 15th. Additionally, the entire series will be offered for free to all cable TV subscribers from March 15th to 18th---regardless of HBO subscription---if your local cable provider is supporting that offer. Community-based events will be organized, including house-parties with local film screenings, utilizing the AddictionAction website as a clearinghouse for tools to assist in organizing, networking and community outreach.

I am privileged to have been sent an advance copy of the four-DVD set and accompanying press kit, and recently sat down to watch the 90-minute centerpiece film. Presented as a number of separate segments, the film uses interviews with national addiction experts, personal stories, and scientific data which all serve to underscore the new science of addiction, its psychosocial and economic impact, and the overall ramifications of addiction for our country as a whole. The film touches upon many subjects, whetting the appetite for more information rather than saturating the viewer with only one point of view.

The segments include "Saturday Night in a Dallas ER" which treats more than 15,000 alcohol- or drug-related injuries per year; "A Mother's Desperation" portraying a mother's attempts to assist her addicted young adult daughter; and, "The Science of Relapse", which provides new scientific evidence for the physiological reasons for relapse based on the latest brain imaging technologies. Other segments illuminate, among other things, treatment with buprenorphine and methadone, adolescent addicts, and insight into a clinical trial of Topiramate for the treatment of alcoholism.

No discussion of addiction and its treatment would be complete without a discussion of the ravages which managed care and the health insurance industry have wreaked upon the treatment of addiction. The filmmakers are keen to point out that 44% of Americans who cannot access substance abuse treatment claim that prohibitive costs or inadequate insurance coverage are the prime factors for that lack of access. A very moving story---"Steamfitters Local Union 638"--portrays how a local New York union has chosen to become self-insured in order to make its own decisions regarding accessibility of healthcare for its members. The union has created a 24-hour hotline for members seeking assistance locating substance abuse treatment, and then provides intensive peer-run aftercare in order to increase the chance of successful recovery. Rather than solely paint a bleak picture of addiction treatment vis-a-vis the insurance industry, the filmmakers chose instead to highlight a small group who has taken responsibility for access to quality healthcare. However, the filmmakers also make it exceedingly clear that families and addicts themselves are taking the fight for addiction treatment to state legislatures and Congress, fueling activism on all sides of the treatment equation.

As a layperson with no real knowledge of filmmaking, I can safely opine that the 90-minute centerpiece film being presented on HBO is of the highest quality, offering insight, hope, scientific fact, heart-wrenching stories, political and economic perspectives, and a place from where a larger national conversation can begin. The scope of the first film is daunting enough, and one could walk away feeling that each individual segment deserved 90 minutes of its own, and that conclusion would not be a misguided one. However, I am sure that the folks at HBO know that in the Information Age, the American attention span is short, and presenting a film made up of easily digestible segments introducing much broader topics is a good way to engender interest and spark desire for further conversation and learning. To that end, it appears that the very richly endowed web-site will provide just the tool for allowing interested parties to further explore the issues at hand.

First, I must pause to praise HBO for even attempting to comprehensively tackle so unpopular a subject as addiction in an era when "American Idol" and other less intellectually stimulating fare dominates the airwaves. Being a premium cable channel, one reality that hits home is that a great number of people most in need of seeing these films may very well be left out of the picture altogether, although it appears that many local cable providers will make HBO available at no cost for the three days of the project's launch. Still, outside of those three days, a woeful number of Americans will not have ready access to such stellar information, and these gaps are where HBO's planned community outreach programs could make a difference. Hopefully, organizations, individuals, schools, businesses, and government agencies will take advantage of this project's scope, bringing this conversation into classrooms, workplaces, and statehouses across the country. This is obviously the aim of the project's organizers and developers, and much credit to them for the valiant effort.

In terms of further challenges, I urge HBO, The Robert Wood Johnson Foundation, and all other parties involved in the project to remember that many languages are spoken in this multicultural society, and that dubbed versions of this film should be made urgently available in as many languages as possible, so that the reach of this project can go deep into the many subcultures and distinct racial and ethnic groups which comprise our country today. Subtitles can be quite useful, but we also do not want to overlook those illiterate segments of the population which also need to hear the addiction message loud and clear. Many first-generation grandparents living in culturally isolated pockets of numerous American cities also need to hear this story so that they too can be recruited into the effort to stem the tide of addiction among the younger, English-speaking, assimilated generations which they are helping to raise. The message is a hopeful one, and will only be more hopeful if these segments of society are appropriately reached.

I have no criticism to offer The Addiction Project at this time, prior even to its public debut. The scope of the undertaking is enormous, and if enough communities and key players within those communities can access this information and actually spur citizens to action, then the project will be an unmitigated success. If HBO and its partners are equal to the task of reaching out to communities of color, the disenfranchised, the uninsured, and the populace at large, while advocating for pressure to be put on managed care companies to increase coverage for addiction treatment, then a great deal of success and broad influence will be assured.

Unfortunately, I am fairly certain that the current Administration on Pennsylvania Avenue in Washington, D.C. will turn a blind eye to this rising movement, even as its embattled military veterans suffer disproportionately from Post-Traumatic Stress Disorder and the addiction which can often result from such trauma. As citizens, it will be up to us to push our legislators for the drafting of legislation to force insurance companies to increase coverage for the treatment of addiction, and only we can hold their feet to enough fires to ensure even a modest change.

Perhaps someday, when universal single-payer healthcare is an accepted fact and an inalienable right of all citizens, our grandchildren will wonder how we ever could deny treatment to those among us suffering from addiction. Perhaps some of these stories presented by HBO and The Addiction Project will be faint memories, with affordable treatments for addiction as ubiquitous as medications for hypertension are today. We can only hope that this will be the case in the future, with addiction relegated to the ranks of other chronic diseases. Until then, an undertaking like The Addiction Project is a crucial and timely one, and we can only hope that its influence will be felt far and wide.

Sunday, March 11, 2007

American Journal of Nursing Addresses MCS

The American Journal of Nursing recently published a continuing education article on Multiple Chemical Sensitivity (AJN, March 2007, Volume 107, Number 3, Pages 40 - 47). Although the medical community has yet to recognize MCS as a valid physical condition, AJN has chosen to publish an article which clearly outlines the symptomatology of MCS, explains the controversies vis-a-vis its etiology and validity, and concludes with concrete steps that healthcare providers and facilities can take to accomodate patients who report having MCS. The article comes across as relatively non-biased, presenting information based upon fact, published data, and direct caregiving experience, using a cae study as the focal point of the article.

As a nurse with mild MCS, married to someone with more severe symptoms, I was undeniably pleased that AJN would take such a step, and I praise them for their efforts to educate nurses about a condition often denied both public and professional attention. The perceived thesis of the article: "What must nurses know in order to safely accommodate patients with MCS?", is a breath of fresh air to this nurse who is constantly striving to educate and enlighten others.

The article concludes thus: "Clearly, further investigation and research are needed in order to establish the best practices for caring for these patients. In the meantime, facilities should consider adopting protocols that establish comprehensive policies and procedures in order to protect chemically sensitive patients in all departments. While some accommodations may seem complex and exacting, many are straightforward and fairly easy to accomplish through thoughtful planning and interdisciplinary collaboration."

Bravo, AJN.

Saturday, March 10, 2007

Linking Up

I recently signed a contract to provide content for a new social/professional networking site for nurses---Nurse Linkup---which is now in beta. My blog apparently caught their eye (go figure!) and they have invited me to have a space for blog posts and articles within their domain. For contractual reasons, my posts to Nurse Linkup will not be allowed to be copied directly to Digital Doorway, but I will post links to them here once they are published. For those of you who are stalwart readers of Digital Doorway: thank you for your readership and never fear. This new opportunity in no way means that this blog will be neglected. Au contraire! Digital Doorway will still be the prime location for my personal reflections on life and nursing.

Thanks for tuning in, and I hope this opportunity will prove to be a worthwhile venture, perhaps leading to (gulp!) future paid work as a blogger/writer.

Friday, March 09, 2007

Cubicles, Nurses, and the Passing of Days

We all sit at our desks---solitary figures reviewing care plans, writing notes, answering calls, reading emails. Occasional jokes and conversations break the spell---often by the mailboxes or fax machine, or literally at the water cooler---but then the conversers return to their pens to continue their many tasks. Douglas Coupland, author of Generation X, coined the term "veal-fattening pens" for these cubicles where so many workers spend their days. My own pen sits in a corner, catching some glints of sun as the shadows and light play outside the windows.

Around 3pm, the sounds of children heading home from the school across the street envelop the office. Sometimes fights break out in the park and we call the police. We don't like to get involved, since the protagonists may be among those who occasionally break our windows during the weekends. Kids bang on our door and tap on the glass as they walk by, the ground strewn with candy wrappers, soda bottles, and discarded homework. I try not to leave the office to do home visits between 2:45 and 3:30 due to the massive armada of school buses that jam the city's roads, stanching the flow of traffic like so many errant thrombi.

Sometimes I'm struck by our solitude---even when surrounded by colleagues---as we go about our tasks. Each of us has our seventy to eighty patients to watch over and care for, the demands of which can at times be staggering. You never know when it will be your turn to have a day when all hell breaks loose, and it feels as if you're losing your mind. Those of us who are more tuned in to one another's struggles will reach out a helping hand at such times, the offer of which is like balm to the spirit of the afflicted nurse.

An almost surrealistic image comes to mind: a room filled with worker-nurses toils away silently and efficiently. Suddenly, one of the formerly silent workers breaks into a Saint Vitus's Dance of activity and stress. Hands gesticulate and limbs quake as sweating and shaking commence. The nurse under fire is momentarily stunned with stress as one patient crashes and burns in a cataclysm of drug abuse as another is rushed to the emergency room with chest pain. Meanwhile, the patient for whom the nurse has painstakingly arranged a liver biopsy and cholecystectomy simply decided she would rather go to the mall, blowing off the biopsy. The surgeon---who scheduled with this patient as a professional favor to the nurse in question---is on the phone, furious, spewing venom across the phone line. Another patient walks into the office and may very well have active pertussis, and there's a pregnant patient in the waiting room. What to do?

Even if one does not actually help the nurse who is now in full-fledged panic, a hand on the shoulder or comforting word can go a long way. Sometimes an offer of help can be a god-send. "Would you really be willing to fill these syringes for me? You can't even imagine how helpful that would be!" The gratitude for such small favors can seem out of proportion to the actual assistance rendered, but the magic is not in how much help is received, but in the receiving itself.

An emotional weather report of the office environs can differ from hour to hour. At times, the mood is stable, the activity subdued, with nary a ringing phone. Then, a tumult of activity and sound begins as if on cue from some off-stage director, and one can almost hear the cymbals crashing and the brass section welling up in a crescendo from the orchestra pit as the tension rises like a wave through the room. And again, relative quiet before the next surge.

There is a poetry to the comings and goings of the day. There is also a ballet of movement, perhaps more often like modern dance, disjointed and disorienting. If a video camera was positioned on the ceiling for a week, I wonder what we would see in the patterns of movement in the office. Come to think of it, if we recorded the sounds of the office for a week, what patterns of sound would we hear, what music of stress would we create and record? What cacophony would result? God only knows.

Friday evening at home, it's easy to wax poetic about the vicissitudes of the workweek. But in the midst of the storm, it is anything but creative--it is simply survival. Peace of mind is often at a premium in our line of work, and one can always worry about the toll being taken on one's body and mind and spirit. The sacrifices are many, as are the rewards. And here's to one more Friday evening when we have lived to tell the tale.

Thursday, March 08, 2007

Some Ideas for the Winter Blues

Fly to the Caribbean.
Quit your job.
Go to the casino.
Refinance your mortgage.
Have a Hot Buttered Rum.
Call an old friend.
Drink too much coffee.
Eat chocolate.
Play the lottery.
On second thought, don't play the lottery.
Flirt with a co-worker.
Buy a new toothbrush.
Jam the copy machine on purpose.
Boycott the staff meeting. Twice.
Surf the Internet on work time.
Make fruit salad.
Eat fruit salad.
Shoot rubber-bands across the office.
Take an extra dose of Prozac.
Eat enough fiber.
Throw away all of your socks with holes in them.
Start a new blog.
Join the gym.
Quit the gym.
Don't even go to the gym.
Go to bed early.
Wake up late.
Dream of Spring.

Wednesday, March 07, 2007

Intelligence and Ignorance

In his very first teaching, Buddha explained that the root cause of suffering is ignorance. But where exactly is this ignorance? And how does it display itself? Let’s take an everyday example. Think about those people—we all know some—who are gifted with a remarkably powerful and sophisticated intelligence. Isn’t it puzzling how, instead of helping them, as you might expect, it seems only to make them suffer more? It is almost as if their brilliance is directly responsible for their pain.
What is happening is quite clear: This intelligence of ours is captured and held hostage by ignorance, which then makes use of it freely for its own ends. This is how we can be extraordinarily intelligent and yet absolutely wrong, at one and the same time.


---Sogyal Rinpoche

Tuesday, March 06, 2007

Days of Fatigue, Dreams of Succor

defatigable \De*fat"i*ga*ble\, a. [See Defatigate.] Capable of being wearied or tired out.

indefatigable \in-dih-FAT-ih-guh-bul\, adjective:
Incapable of being fatigued; not readily exhausted; untiring; unwearying; not yielding to fatigue.

___________________________________________

For so many workers plying their trade and running in the proverbial race of the rats, fatigue is sadly the name of the game. As the world speeds up and the unrelenting pace leaves us in its dust, one would think that the ranks of the indefatigable must be exponentially decreasing.

When we turn twenty, Neil Young has reminded us for decades now that we must leave Sugar Mountain. The days of luxurious irresponsibility fade away, and the burdens of adulthood begin to work their magic on one's youthful vigor. Debt, work, career, relationships, ageing parents, children, health, one's own inexorable march towards death---the list itself can engender fatigue.

There are always those who seem to retain their youthful glow. Some people appear to find the way to remain energized, vigorous, athletic, pain-free, healthy and whole. What is their secret, we wonder? Is it genes? Diet? Attitude? Luck?

When I talk to friends and colleagues, fatigue is the overarching symptom which seems to embrace us all in these post-modern times. We are tired of working, of cleaning, of driving, of email, of shopping, of moving, of driving, of the media, of the war, of the violence, of the killing. There is just so much to be tired of, it seems. It's no wonder we're exhausted.

But what enlivens us? What drives us to our highest potential and success? What gives us energy and life? These are the places to take our tired minds and bodies, if only we could shake ourselves loose from our individual and collective lethargy long enough to contract those underdeveloped muscles of joy.

Here in New England, the seemingly relentless grip of winter can drive us to the brink of exhaustion. As the thermometer drops below zero this week, the windchill a veritable coup de grace upon our spirits, we bow our heads and grit our teeth, shoulders hunched against the cold. A sunny sky outside the window belies the bone-chilling cold waiting just beyond the panes of glass. It's days like this when hibernation looks so good. Emails from friends vacationing in Maui and Mexico do little to ease the pain. And when one thinks of the homeless, it is unfathomable.

We all need places where we can turn for sustenance, for succor. We all must find those places, be they within or without. We also need to know when the circumstances of our lives are only exacerbating our defatigability. I am walking those edges this week, skirting the abyss, looking for a place to rest my head. May you yourself find your place of rest, your fountain of succor. And if you want to share it with another, there's always enough to go around.

Monday, March 05, 2007

Where To Turn?

Where does a nurse turn when it seems that the end of one's rope has been reached? How does the nurse---or other healthcare professional---finesse on-going self-care in the midst of devastatingly overwhelming work? When does the nurse get to care for him- or herself? How long can one abdicate self-care as the work-weeks grind along?

These are questions which I ask myself, and the answers are slow to come. When the workload has been untenable for too long, one begins to shut down, to lose focus, to become resentful and cynical. No matter how much one is enamored with the sociopolitical mission of one's work, blinding stress can eventually erode the glow of that mission, the patina of moral and political righteousness lost in the tumult of the every day.

Priding myself on never having worked in a hospital, my nursing experience has allowed me to remain for more than a decade in the community health sector. Happy in this role, I have honed certain skills and learned to be a relatively self-sufficient, autonomous clinician. That is a strength, and I refuse to allow it to be a weakness.

How to decide to move on? How to make that transition gracefully? How does Multiple Chemical Sensitivity impact the job search? How do I let go? How does one simply say goodbye to eighty patients?

The answers are few and far between.

Saturday, March 03, 2007

A Theory of Relativity

A child is born amidst war, learning that hunger, pain, isolation and suffering are part and parcel of a life inherited by circumstance of birth.

Another child is born amidst the splendor of wealth and luxury, lacking in no material comfort or opportunity for societal advancement.

Yet another child is sold into slavery at a young age, or perhaps forced to become a child soldier, learning to kill blindly and unthinkingly as a matter of course.

Other children are "born into brothels", their mothers trapped in lives of prostitution and inescapable debt.

Still others find themselves born among the middle class, the working poor, the mentally ill, the addicted, the dysfunctional, the successful, the chronically ill, the powerful.

Do we all have a relative chance at self-actualization? Don't some overcome seemingly insurmountable obstacles, managing to climb their way to positions of influence and prestige? Do others seem to never be able to rise above their circumstances and move beyond the realm of their parents and families, their squalid or fearful environments? What allows one individual to find his or her way through a maze of suffering into a realm of beauty and healing while another cannot? Rhetorical questions are so easy to ask and so very difficult to answer.

If life truly is suffering, then what is the path out of suffering? Is it the Four Noble Truths? Is it Jesus on the cross? Is it the majesty of Nature? Is it the power of the mind? Is it karma? Is it luck or chance? Is it personal power?

Yesterday, I discussed my own challenges, both physical and mental. Yes, the potential for joy is limitless, but don't I have a relatively easier opportunity to get there than the child born amidst war and famine beyond his or her control? Am I deluded to even bemoan my personal challenges when others across the globe suffer unspeakable horrors which might break me like a matchstick?

I can see that relativity is the central theme here. Writing this entry, I have no grandiose answers, no plan for the salvation of the world, no scheme for the attenuation of suffering. What I do have is clearly before me---a mind, a body, a home, a family, relative ease, and a world in which to make my mark. That world is a dizzying place, almost stifling in its complexity. My place in it---and what I do with that place---is really all I have. As Robert Fripp once said, "May my living repay the debt of my existence".

Friday, March 02, 2007

The Mill

We've all been through it. The proverbial "mill" tests the tenacity of each of us time and again. The ability to cope, survive, and learn from those tests is, I think, our paramount task on this earth.

Many of my patients have been through more than a mill---it seems as if they've survived a war. Abuse, neglect, violence, incarceration, addiction, disability, oppression, racism, classism, chronic and acute illness---it's sometimes a wonder that some people simply get out of bed in the morning.

As for myself, my own personal mill has also left its teeth-marks on my soul and spirit. As I have recounted in these electronic pages, chronic pain and Multiple Chemical Sensitivity have certainly come to the fore in the last two years. Other chronic physical illnesses---gastroesophageal reflux disease, benign prostatic hypertrophy (BPH), hyperlipidemia, Restless Legs Syndrome (RLS)---all inform my understanding of what life is like when the body and brain seem to run amok in a field of apparent dysfunction. I love my body, but its seeming predilection for such instability can certainly give me pause.

A lifelong struggle with depression has provided me with an almost constant companion with whom I tussle and fight. Perhaps my compassion and empathy for many of my patients' psychoemotional and spiritual challenges stem from my intimate acquaintance with the needy and persistent face of depression. New Agey types urge one to "break free" of depression, to disallow its grip, painting depression and mental illness in general as personal flaws to be overcome by the power of the mind and the will. Certainly, the mind is a powerful tool and can be focused towards the positive or the negative, but I believe that there is simply always a light and a dark, a yin and a yang, and one's passage through the clouds---whether brief or long-lived---can also be fodder for growth and self-actualization. When my best friend was murdered in 2001, it was difficult to imagine ever being happy again, and PTSD became more than just an abstraction. But five years later, joy is still possible, although the pain still lingers. Contradictions abound.

Some of us live lives relatively free from tragedy and pain, while others seem to swim in the waters of suffering from early childhood. Eastern philosophies speak of the laws of karma. Other spiritual teachings speak of the choices we make prior to our birth. Still others will say that your life is the manifestation of your thoughts, be they fearful or wondrous. Many will simply admit that the universe is governed by chaos, and we are all unwitting victims of a random and often savage game of chance.

Samuel Beckett once said that the amount of tears in the world is constant. And Nietzsche once went so far as to declare that "God is dead", to which, it is said, God ironically replied, "Nietzsche is dead". The fact is, any argument for or against the necessity and reality of suffering is worthy of discussion, but from my point of view, what one actually does with that experience is the key. The assignment of blame for the source of the suffering (while often entertaining when discussing the suffering of others and not one's self), is at the very least counter-productive, and at worst cruel and unusual.

Are we all responsible for our lives? Of course, but we cannot always be held solely responsible for our life circumstance, our physiology, our social standing, and our genetic imprinting. As much as I would like to "get over" depression and neatly dispose of it in some psychic coffin in my graveyard of personal moral failings, perhaps the best I can do is learn to live with its presence, control its grip on my life, and rise above the alleged limitations which it appears to impose on my life's trajectory. Or perhaps, some how, at some point, I could even defeat it utterly.

The challenges of life are enormous and frequently overwhelming, and I do my best to not envy others their apparently "lighter load". Sure, those enormously successful individuals with multiple PhD's, a trust fund, and four months of vacation abroad each year can certainly engender great envy or jealousy on my part. That grass on the other side of the fence can often look mighty soft and inviting. But my little garden, crabgrass and all, is what's on the proverbial plate, and this body, this mind, and this life are the apparently flawed tools with which I have been granted a very short opportunity for cultivation and contemplation. If the number of tears in the world is actually constant, then the amount of joy in the world must be limitless. And that's where the story begins.

Thursday, March 01, 2007

When Shingles Strike

In Monday's post, I mentioned a patient who had shown up out of the blue at the clinic with lesions on his scalp which raised my suspicions and caused his doctor to allege the potential diagnosis of herpes zoster infection, or shingles. We sent him to the ER for evaluation, isolation, and empiric treatment with IV antivirals until we could be proven wrong. Well, the doctor was correct in her diagnosis, and my patient is currently in isolation receiving intravenous treatment for herpes zoster. Phew! Another close call.

For those of you who are not aware, shingles is caused by the same virus which causes chicken pox. After a child has chicken pox, the virus becomes dormant and lives in the nerve tracts, or ganglia, which emerge from the spine. The virus is usually reactivated by stress, aging, or an immunocompromised state such as AIDS. The lesions will often manifest along a "dermatome", an area of skin innervated by one nerve. The classic area for such an outbreak is the trunk, curving from the spine to the sternum in a narrow band, but lesions can appear on the face, neck, arms, even in the eye or mouth. Post-herpetic neuralgia can result, wherein the patient may have short- or long-term pain in the affected area, long after the lesions have healed and treatment ended. The pain can often be debilitating, especually in the elderly.

In my patient's case, he had relapsed into intravenous drug use, had disappeared from care, stopped all antiretrovirals and other meds, and his immune system has been weakening by the day. I knew that he would crash and burn, it was just a matter of when, how, and whether he would have the presence of mind to seek care before it was too late. In his very atypical zoster infection---disseminated zoster---the lesions are few and mostly hidden on the scalp. Untreated, he may eventually have developed lesions on his liver and kidneys, eventually succumbing to liver failure and a most unpleasant demise.

Even though I have a cold, I went to the hospital on my way home from an abbreviated workday today to visit him. Donning a mask in the hospital to not infect anyone else (and washing my hands frequently), I added my two cents to his chart, warning the team to please refrain from restarting the patient on AIDS medications while he's hospitalized. Knowing him well, I need to assess his readiness and eventually start him on meds when I think we have a chance at success, otherwise it's an exercise in futility and could further deplete his chances for future treatment due to his already multi-drug resistant HIV.

Since he is in respiratory isolation due to the ability to spread varicella via respiratory droplets, he was already acclimated to people wearing masks upon entering the room. I informed him that I had a cold and that I was wearing the mask as much for his protection from my cold as for my protection from his illness. He nodded and smiled, looking small in his bed.

"It's a good thing you came to see me on Monday. You know that this is a very dangerous illness for you." I sat down on the empty bed next to him.

"Yes, I do," he replied. "They explained everything."

"You know why you're in isolation?"

"Oh, yes. They told me that, too. I'll be here about ten days." He frowned.

"I want you to know that even though you relapsed and started using [cocaine] again, I'm not angry. It happens. But you have to get serious about treating your HIV. You've been off of meds for a while now."

"I know, I know," he replied gravely. "I just got so tired of all the pills. Then I started shooting up, and that was that."

"OK, but you were smart enough to come see me, and now you're here. You know that this could have killed you. What would your kids do? When you get out of here, we have some serious talking to do, my friend."

He smiled. Under different circumstances, we would have hugged, but we hugged with our eyes instead, the mask hiding my smile which I'm sure he could sense.

"I haven't abandoned you. If you do your half of the work, I'll do mine, OK?" I head for the door and wash my hands at the sink.

"You go home and rest," he says almost maternally. "We'll talk next week."

"OK," I reply. "I'll be thinking of you."

I exit the room, leaving my mask on until I leave the patient care area. Stopping in the men's room, I wash my hands and look at my bedraggled face in the mirror.

"At least he's safe in a bed and we know where he is," I think to myself. Now this nurse needs some rest as well, or I'll be of no further use to anyone.