Monday, December 31, 2007
"I want one of those things where they put a hat or something on your head. Oh, what is it?"
"An EEG?" I ask, grasping at straws.
"Yes, that's it! I want that!" she yells, dissolving into more tears. "And I think I have throat cancer, too."
The next call revolves around---what else? Narcotics.
"Why does the doctor want to decrease my oxycodone? I only did heroin once and it was just to celebrate. I won't do it again."
Again and again the calls come in, like everyone just seems to need to put their crises in my lap before the year is over. Maybe it's just pay-back for planning to leave altogether. Several patients manage to suck me in today, and I feel emotionally triggered by the ferocity of their trauma, my mind working with my psyche to mitigate the damage.
The highlight of my day is delivering bottles of sparkling cider to some of my favorite patients, leaving behind a smidgen of New Year's (non-alcoholic) cheer. A few shared laughs and blessings bestowed upon me round out the day, keeping me from sinking beneath the onslaught of unquenchable need.
Home embraces my weary bones like a treasured balm. Thoughts of what has proven to be a quite difficult and trying year lead to wishes and desires for a kindler, gentler year in 2008. Personal loss, worsening illness, and the physical manifestations of stress and burnout have all come home to roost this year. Through it all, I have tried to maintain a healthy "witness self" who watches the wheels without going under---a frequently Sisyphean task.
In 2008, I will leave my full-time job of seven years, piecing together a new way of earning a living, manifesting improved health, shrugging off the ills of undue stress, and re-embracing creativity and spontaneity. No resolutions, no promises, no enjoinders. Just a healthy desire for change, for health, and for a new chance to do it better.
Happy New Year, many happy returns, and may all beings everywhere be free from suffering.
Sunday, December 30, 2007
In terms of what I have done for patients, frequently going the extra mile---both literally and figuratively---I wonder if my going that extra mile has truly served them well. Having done so, their expectations may be that subsequent clinicians will do what I have done for them, and in this assumption they may indeed be sorely mistaken. If that is the case, did my going that extra mile only foster dependence and disempower them from a more proactive approach to their own care?
Enabling behavior among clinicians does occur, and in my (current) line of work---care coordination for the disabled and vulnerable---we are all guilty. However, if enabling does go so far as to disempower, then what has truly been served, the patient's needs or the clinician's own guilt?
For myself, this is the end of an era. It is the end of being in long-term therapeutic relationship with patients. It is the end of being a fixture in patients' lives year after year, through births, deaths, tragedies, and the inescapable comedies of error. It is the end of that feeling of responsibility of carrying the details of the care of so many on my own shoulders. I have gained much from that responsibility, and it has certainly fed my own need to be so needed. But is being so needed really all that it's cracked up to be?
As for my patients, they will survive, and they will navigate the new world without my presence however they can. Some will latch onto a new provider, some will simply fade into the healthcare woodwork. Abandonment issues will surface for some, and the more functional of these individuals will work through those issues and come out on the other side. For a few, I will just be one more well-meaning and earnest clinician who danced in their life for a while before spinning out of orbit like so many others before me.
In one exchange with a patient to whom I was breaking the news of my imminent departure, my patient said something about the fact that we had "done so much good work together" as if it was now all lost. My response was to counter that statement by framing it in the light of forward movement, of her new ability to build upon that foundation and realize more of her innate potential for self-directed advocacy. She agreed, but maintained her assertion that it was a loss of large proportions.
That day of finally closing the door on my seven-year sojourn---January 18th---is close on the horizon. What happens between now and then is only one part of the story. After that, a new chapter begins, and I will write that chapter with great interest and care. Perhaps it is already written and I only need to find it within myself.....
Friday, December 28, 2007
Wednesday, December 26, 2007
Facing a return to work today after a long weekend, this quote speaks to me. It speaks of one of the touchstones of being in a helping profession, and of a life-long journey centered around developing, nurturing, and propagating compassion.
In the face of professional burnout, one can easily turn away from compassion, lose sight of it, and move into less therapeutic and unhelpful territory. This is what one might call compassion fatigue. Pity is an ugly cousin of compassion, but burnout can lead into much uglier territory still, like resentment and anger. Leveled against clients and patients, these emotions whittle away at the therapeutic relationship, leaving nothing but the starkest of connection. These manifestations essentially poison the well of compassion, but hopefully not beyond repair.
For myself, I am extricating myself before the damage is done, to me or others. I am exiting stage left with my compassion fatigued, but still intact and heartfelt. While I may feel badly for those patients whose abandonment issues will be stirred up by my leaving, better for them to face their issues than to face my loss of compassion.
Transitions are never easy. As the year comes to a close, change is inevitable, and I ready myself for the shifting sands and the equally inevitable challenges that change will bring. I will also endeavor to help my patients to do the same.
Tuesday, December 25, 2007
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.
Monday, December 24, 2007
Even as some lay dying---either here in New England or in Baghdad---the celebration of the holiday season continues. While many are blind or deaf to the suffering around them, many indeed note the disparities of wealth and health around the world and take a moment to give thanks for their own good fortune.
Even as the storm of rampant consumerism threatens to overtake the true meaning of the season, a good many of us realize that there are ways to give and ways to consume that do less damage, wreak less environmental havoc, and possibly even contribute positively to the world rather than simply adding to the mountains of junk choking our lives and landfills.
In a newly released film, What Would Jesus Buy, Reverend Billy and the Stop Shopping Choir travel the country to preach to the masses about the misguided commercialism and consumerism that does indeed threaten to consume us all. Criss-crossing the country in biodiesel buses, Billy uses guerilla tactics to infiltrate the epicenters of American consumerism and enlighten the masses about the consequences of their actions. While some may take offense to Billy's faux religious trappings, his point is clear: blind consumerism with no thought to its human, environmental and economic implications is devastating the planet and the people living upon it.
Despite it all, I was raised with Christmas in the context of an utterly secular Jewish household, and I still experience that warm nostalgic feeling at this time of year. Having married someone who was raised Catholic, Christmas has always been a part of our family's tradition, and continues to be so to this day. This year, the majority of our gifts were donations to various charitable organizations in honor of our friends and family: high efficiency cookstoves for Darfuri refugees, "adoption" of endangered animals, etcetera. Still, we are consumers, and we simply try to consume consciously and cautiously.
At this time of year, we also tend to look back at the last twelve months, take stock of our lives, our choices, our failures and successes, and make plans for the coming year. For myself, the theme for the new year is one of self-care, stress reduction, improved health and well-being, and increased self-awareness coupled with increased awareness of the world around me. Since I will be leaving my job where I have been daily exposed to the trauma and challenges of inner city life, I plan to make sure that I stay connected with the struggles of those who live with less, and continue to contribute however I can to the fight for equality, equity, and parity in all areas of life and society. Even if one withdraws from daily battle on the front lines, a supportive role can still be effective.
So, dear Reader, I am wishing you well today as you prepare for your day, whether tomorrow is a meaningful day for you (religiously or culturally), or simply just another day off from work and school. In the wise and simple words of Garrison Keillor, "Be well, do good work, and stay in touch".
See you soon.
Friday, December 21, 2007
Thursday, December 20, 2007
"So," a voice says through the receiver. "Can I get my oxycodone prescription today?"
"Your oxycodone prescription?" I respond. "Is this __________ calling?"
"Yes, it's me. I need my prescription now! You've kept me waiting!"
"Now wait a second. You spent the whole weekend snorting heroin and I sent you to the ER in an ambulance because you were wandering your building naked and hearing voices," I say. "You also had a machete on the kitchen counter. I thought you were in danger. And now you want your oxycodone just like that?"
"Yes. I'm in pain and I need it and now you won't give it to me. Jesus Christ!"
"Listen." I try to be patient. "You were out of control this weekend. Even your son said so."
"But I was celebrating! Can't I celebrate like anyone else?"
"Well," I say. "You could have taken a friend out to a nice restaurant to celebrate. Or maybe gone to a movie and bought yourself something nice at the mall. Instead, you chose to go out on the street, buy some heroin, and then spent most of the weekend psychotic. How can we trust you with a bottle of oxycodone?"
"C'mon! I need my meds! You can't refuse to give me my meds!"
"Well, this is the story. I have decided that I will give the bottle of meds to your visiting nurse. She will keep the meds in the lock box and give you four pills every morning for you to take throughout the day. Then the next morning you'll get four more. That's the deal. Either you accept what I'm offering or you get no narcotics at all. No arguments. No bargains. Period."
"No, no, no. You can't do that. I need my fucking meds now!"
I sigh. "Look, _________. This is it. Take it or leave it. I have your prescription in my hand and I'm about to go find the doctor to have her sign it. I can just as easily shred the prescription and we'll talk after Christmas."
"OK. But I'd better get my meds!"
"I'll have the doctor sign your script now, as long as she agrees to my plan. But if you use any more heroin, take any street drugs, or do anything like that again, I guarantee you she'll stop writing those prescriptions right away."
"OK, OK," she grumbles.
"Merry Christmas, my dear."
"Yeah, yeah. Bye." She hangs up.
I hang up my phone and my colleagues applaud. An exercise in boundaries? Sure. And patience. And compassion. And insanity. Was I really on a leave of absence just five days ago? It seems like an eternity.
Wednesday, December 19, 2007
The practice of mindfulness, of bringing the scattered mind home, and so of bringing the different aspects of our being into focus, is called Peacefully Remaining or Calm Abiding.
All the fragmented aspects of ourselves, which had been at war, settle and dissolve and become friends. In that settling we begin to understand ourselves more, and sometimes even have glimpses of the radiance of our fundamental nature.
Tuesday, December 18, 2007
First, there's the patient with acute psychosis who apparently went on an inhaled heroin binge this weekend to celebrate finishing a very important multiple-month medical treatment. She told me that a friend had suggested going out to a fancy dinner instead of blowing her money on heroin. "It was actually a pretty good idea," she said with a laugh. After discussing the voices in her head and her non-compliance with taking her medications, she agreed to go by ambulance to the ER for an evaluation.
Another patient just seems to be having a hard time getting his life on track (a familiar complaint and observation here at "Train Wrecks 'r' Us". I feel deep compassion for his suffering, but sometimes it seems we just have to sit and let them work it out themselves.
The next patient complains about my long leave-of-absence, and says over the phone, "You mean, you've been back since yesterday and you haven't called me yet? I missed you so much!" How will I break the news to her that, in five weeks, I'll be permanently gone from her life?
Still another patient hears the news of my imminent departure and says, "Oh no! Another doctor leaving me behind? What next?" (She always refers to me as her doctor.)
These and other reactions are enough to make me feel guilty for leaving, but then I simply remind myself of the reasons why I'm leaving, the multiple stressors, the fast pace, the overwhelming feeling that I am running a race with no end in sight. I've been running like this for seven years, and working full-time for eleven.
We all run for our money in many ways, and any line of work will generally keep one running. This particular line has simply worn out the treads of my old Nurse Care Manager tires. I'm just due for a tune-up, some new treads, and a new place to run. In old-fashioned terminology, I'm "plum worn out" and have opened myself up to a new way to make my living in the world. The hardest part of that process is saying goodbye, and that is without a doubt par for the course.
Monday, December 17, 2007
It's easier than I thought to get started. I have to try to say goodbye to more than 80 patients, many of whom I have worked with for seven years, sharing numerous ups and downs and the challenges of poverty and chronic illness. Having begun, saying goodbye is not as difficult as I imagined. Then again, I have yet to speak with the patients with whom I have shared the most closeness and emotional intimacy. That is where the emotional rubber meets the road.
I was on the phone with one particular patient today. I told her I would be leaving the practice on January 18th. She seemed to take it in stride, said she loved me and would miss me, and agreed to get together next week for what would probably be our final visit. Another patient simply said, "Why are you leaving? Is it for more money?". Well, not exactly. Just more time at home.
One of my favorite patients, a vulnerable twenty-three year old young woman---a year younger than my son---was the most wrenching goodbye to date. When I broke the news to her over the phone today, I felt myself wince, and I could hear the strain in her voice. We agreed to meet at her home on Wednesday to check in. That therapeutic relationship will be one of the most difficult to terminate. That is the first small pain of this process.
So, five weeks of goodbyes, explanations, the transfer of crucial information, and the formulation of a new work life. An interesting way to end a year-----and to start anew.
Sunday, December 16, 2007
Resignation: first and foremost, during this period of time for reflection and self-care I came to the earth-shattering conclusion that I can no longer sustain the pace of my position, and I submitted my letter of resignation. While I return to the fray tomorrow at 9am, I enter only briefly, knowing full well that, come January 18th, my tenure at that position will have come to a timely end. Saying goodbye to beloved and respected colleagues will be difficult, but most challenging will be terminating my relationships with dozens of patients, many with whom I have shared a great deal over seven years. Be that as it may, the decision feels right, and I'm sure I'll process some aspects of it here on Digital Doorway. It's like giving up a part of my identity, both as a person and as a nurse, and the letting go (and grieving) process has already begun.
Hospice: I have applied and been hired for a position as a per diem hospice nurse at a small residential hospice not far from my home. I hope to complete my orientation there quite soon, and begin to pick up shifts as they become available. A goal long postponed.
New opportunity: I have contracted to serve as a Nurse Consultant for Nurse LinkUp, an online nurse networking community for which I previously provided occasional articles. When the site is re-launched, I will be providing original content, recruiting members and advertisers, and using my experience as a nurse to influence the development of the site.
Self-care: acupuncture, a sleep study, psychotherapy, rest, exercise, rejuvenation, solitude, writing, reading----I have had almost as much of these as I wanted (though a few more naps would have been nice......)
Home-care: laundry, organization, an enema for the basement, cleaning, winterizing---good medicine for the nurse with OCD.
Business idea: the development of stress management and burnout prevention workshops for nurses and other healthcare professionals.
Technological upgrade: we did it---we switched to Mac from Windows, and I am reveling in the change! Eat your heart out, Bill Gates!
The importance of decreased stress: the most crucial accomplishment and realization of these six precious weeks has been the need for decreased stress in my life. How else could I have cultivated the needed distance to realize that my stress level was leading me on a path of chronic stress-related illness and dysphoria? Without such a radical decision (with thanks to my wife Mary for pushing me), there may not have been a renewed commitment to self-care, and a realization that working full-time, 9-5, was just not working for me anymore. Not working? Nay, it was not working, and I was not fully living. I was caught in the maelstrom of stress compounded by a workplace wherein there was relentless demand with too few mitigating factors. A release was needed, and six weeks was only a taste of what that release might look like.
Granted, a professional life which is a patchwork of per diem positions, consulting, and self-employment may seem to some to be a self-made purgatory (and perhaps I'll feel similarly in a year or so), but for now, such freedom of movement and broader parameters are just what the doctor....er, I mean the nurse....ordered. Prescription received, and the co-payment? Priceless!
Good-byes: and now the goodbyes begin, and this long-awaited and dreaded separation can get underway. I realize that there is much to grieve, much letting go to do, and sadness and doubt are inevitable. Still, in my heart of hearts, I know that it's for the best, and I consistently remind myself of the line by Michelle Shocked which I have mentioned here before: "The secret of a long life is knowing when it's time to go."
Saturday, December 15, 2007
As a nursing student, hospice work was my stated career goal, and although I have not actually worked for a hospice organization per se, I have coordinated and taken part in hospice care for a number of my patients over the years. As a visiting nurse, terminal patients would often remain on our service, with family members or an automatic pump administering morphine around the clock. I was honored to pronounce a number of patients dead, signing provisional death certificates and facilitating post-mortem arrangements.
Now, with my new official position as a nurse in a free-standing hospice, the opportunity to provide focused and specialized care to the dying has become a reality, and I'm happy to assume this new role, at least on a per diem basis for the moment.
Over the course of the day, my preceptor (a 30-year practical nurse veteran) and I monitored and cared for five patients with the diligent assistance of an equally experienced home health aide and one volunteer. Two patients in particular received the lions' share of our attention based upon their deteriorating health, non-verbal and semi-comatose condition, and apparent closeness to death.
Around 2:30 we entered the room of the one patient who we deemed to be closest to his life's denouement, checking his pulses and respiratory status every few minutes. His peripheral pulses became weak and thready, eventually becoming undetectable altogether as his body shunted all available circulatory volume towards his brain and heart and lungs. It was at this time that we also became aware that his hands and feet---previously painfully contracted with neurologically-based deformities---were now relaxed, the skin mottled and gray. Feeling his weakening and slowing carotid pulses, we marked the slow decrease in the force of circulation to the brain as his respiratory rate decreased, with quick gasping breaths marked by long periods of apnea (cessation of breathing). By now his rapid decline was obvious.
At 2:58 pm, I placed my stethoscope on his chest, detected absolute lack of movement of air in the lungs and completely absent carotid pulse. It was then that we pronounced him dead, signed the death certificate, and began the long list of phone-calls and documentation which follows a death in a facility such as ours.
Orientation or not, this death appeared to welcome me with open arms into the fold of hospice care. My comfort level with the dying process and the many clinical and interpersonal processes involved, all confirmed for me that this is a place where I would like to be. Bringing all of my training, clinical skills, compassion, and desire to serve to bear, I can now see that hospice and the shepherding of the dying towards their ultimate goal---a noble and comfortable death---is truly a place which I would like to call home.
As this gentleman's soul enters what the Buddhists call the Bardo stage, I wish him well on his journey, and I thank him deeply for the honor of attending his death. May he be free of his suffering, may he be at peace, and may we all be so blessed to die with such grace and nobility.
Thursday, December 13, 2007
Just a few hours ago, I returned home from an overnight sleep study. I always enjoy these diagnostic tests and studies since they afford me the opportunity to experience what my patients must endure. Just like my MRI, I treated the evening not only as a diagnostic test to ascertain the etiology of my own disordered sleep, but also as a study of the diagnostic study itself, and an evaluation of what these types of experiences are like for the average patient.
As I have consistently discovered, aside from the functionality of equipment involved, the personality and approach of the technician administering a diagnostic evaluation is likely the most important aspect of the test's administration (not to overlook the cooperation and open-mindedness of the test subject him- or herself).
Luckily for me, the technician who administered my sleep study was personable, affable, funny, competent, kind, compassionate, and apparently wholly interested in my need to have a positive experience, in spite of his own challenge of being a circadian-challenged worker. While he spent thirty minutes attaching numerous wires, tubes and electrodes to various parts of my body, our exchanges included an examination of his occupational challenges, the absurdity of the situation in an existential type of way, and the odd nature of sleep disorders. It is truly a gift when a skilled professional can transform a relatively uncomfortable experience simply through the power of their personality and approach to the task at hand. And at this, my technician was richly skilled.
Apart from the interpersonal aspects of the situation, I was mostly affected by the inherent irony of attempting to sleep "normally" under what are undoubtedly abnormal conditions. The room, while homey like a nice hotel, still had a somewhat clinical feeling, especially due to the necessary presence of the equipment, wires, infrared video camera, and tubes which give the room its clinical functionality.
Since this was a study to determine my sleep patterns, I was instructed to eschew my usual medication which keeps my Restless Legs Syndrome at bay for one to two days prior to the study. Consequently, I was thoroughly exhausted from two nights of poor sleep, as well as somewhat intimidated by the need to sleep on command. Exhausted, overtired, unmedicated and uncomfortable, the challenge was a steep one.
The picture: two cannulas in my nose (one for the measurement of oxygen flow and one for heat); six electrodes glued to my scalp to monitor brain waves; four sensors taped to my face to monitor eye movement; one on my throat to record snoring vibrations; four electrodes to the chest for an ECG; and two tight straps around my chest and abdomen to measure breathing patterns and depth---all attached to one "motherboard" which slept silently beside my pillow.
The initial result: two hours of tossing and turning, five hours of relatively solid sleep interrupted by interesting trips to the bathroom with the said wires and tubes along for the ride, and a grateful arrival home to my peaceful and welcoming abode following 20 laps at the pool to wash off the night's travails.
So, if I am again meant to sleep and perchance to dream, may the results of this most interesting and amusing study be edifying and useful to both myself and my trusted diagnosticians. If not, then it's back to the drawing board, and the overall elusive nature of healthy, restful sleep.
Wednesday, December 12, 2007
Doubt is not a disease but merely a symptom of a lack of what we in our tradition call the View, which is the realization of the nature of mind, and so of the nature of reality. When the View is there completely, there will be no possibility for the slightest trace of doubt, for then we’ll be looking at reality through its own eyes. But until we reach enlightenment there will inevitably be doubts, because doubt is a fundamental activity of the unenlightened mind, and the only way to deal with doubts is neither to suppress nor indulge them.
Tuesday, December 11, 2007
Monday, December 10, 2007
Laughter has been scientifically studied, and these studies prove beyond the shadow of a doubt that laughter is healthy, even if the laughter is "faked". Forced laughter and authentic laughter actually have the same physiological effects on the body: enhanced immunological function, lowered blood pressure, relaxed skeletal muscles, improved oxygenation, improved blood flow to the vital organs and brain, and the list goes on. Controlled experiments have also shown that blood levels of stress hormones like cortisol are significantly decreased by laughter, and there is no appreciable difference in the effects of "fake" or "real" laughter on such physiological benefits.
Just for fun, please take the time to watch the following YouTube video which portrays John Cleese of Monty Python fame as he travels to India to experience Laughter Yoga first-hand with our teacher, Dr. Madan Kataria. It is three minutes well spent.
Here's to life, and here's to laughter!
Sunday, December 09, 2007
In the unit which I recently visited, there is the poorly named “Relaxation Room”. Here, I was not surprised to find institutional furniture (what else could there be?), one bright fluorescent light fixture in the ceiling, and a maddeningly lame collection of plastic bins desultorily littered with colored beads, dry white rice (for “tactile stimulation”), an empty bottle of bubbles, and other detritus perhaps thought to have therapeutic and “crafty” benefits. In said relaxation room, there was no source of music. In an effort to create a sense of relaxation, one entire wall was covered with an enormous piece of wallpaper showing a life-size beach scene in a useless attempt to give the individual “relaxing” in the room a sense of being at the seaside. Two deflated bean-bag chairs sat lazily collapsed against the wall. The room is anything but relaxing. It feels more like a glorified closet, a dubious afterthought of pretend holism.
What might there be in a true “Relaxation Room”? A fountain. A selection of ambient, classical, and other calming music. A video monitor on the wall from which the patient can choose various nature scenes to watch and meditate on. Full-spectrum lighting and/or therapeutic lighting. Inspirational books written by spiritual leaders and others who offer words of comfort, solace, and empowerment. Meditation cushions. Clean and soft carpeting for doing yoga or stretching.
On a psychiatric unit, where can patients spend time? In the tiny “Relaxation Room”? A non-descript and highly uncomfortable “dining room” with hard wooden chairs and tables? Where is the exercise room, complete with yoga mats, exercise balls, and other non-threatening materials without sharp edges or other risk factors. Where can a patient really work off some steam? Where does one go to run, or to roll on the floor and stretch? How can physical health and fitness be so utterly overlooked when restoration of health is so paramount?
As for food, why can’t it be served “family style” at a long table, where patients sit together and pass food back and forth from serving dishes, fostering community, interaction, and socialization? Why must everyone receive their individualized institutional tray and sit---isolated and disconnected---as they “nourish” themselves?
Where is the garden? Where are the full-spectrum lights which studies have shown can counteract the ravages of Seasonal Affective Disorder? Where are the inspiring books, DVDs, and magazines? Where are the “healing clowns”, visiting musicians, poets and artists? Where are the plants and the stuffed animals? Where, dammit, is the comfort?
The “kitchen”, open for “nourishment” and snacks, sports Salada tea, tepid water, coffee, and crackers. Where is the fresh fruit? What nutritional choices are there other than sugar, caffeine and white flour? Where are the foods that truly nourish the soul, appease the appetite, and provide some modicum of sensual stimulation and satisfaction?
The most notable evolution vis-a-vis providing radically different environments within a hospital setting is the birthing room. Expecting parents have demanded that birthing suites and maternity wards within hospitals be designed in a way which provides the comforts of home within a hospital setting. This vocal and relatively affluent group has brought about enormous and revolutionary change vis-a-vis the nature of the birthing environment. Families in labor now ensconce themselves in wood-paneled suites with king-size, four-poster beds, birthing tubs, and numerous amenities meant to provide the laboring mother and her spouse and family a comfortable and home-like environment in which to undergo the process of birth. This is revolutionary, yet this revolution has not moved beyond the walls of maternity centers, and perhaps the psychiatric units are the next frontier in need of an “extreme makeover”.
I am sure that somewhere in this country (but more likely in Europe), there exist psychiatric institutions wherein humanism and holism are paid more than just lip service. For now, the majority of psychiatric institutions in this country are most likely similarly sterile and devoid of simple yet effective changes which could lend themselves to providing a much more pleasant, healing, and effective therapeutic environment.
In the end, money talks. Birthing is big business, and hospitals compete for families and continually try to outdo one another with their “birthing packages”, offering home-like experiences for deserving and demanding (and affluent) families who want a special birthing experience within the safety of a hospital.
As for the psychiatric patients, who will advocate for their experience of improved therapeutic environments? Will the families of those who need in-patient psychiatric treatment band together and flex their economic muscle, demanding change and improvement? Or perhaps there is a Victorian-era austerity or Dickensian horror which we collectively feel is still appropriate for those experiencing “madness”. Do we still negatively label those struggling with mental illness or extreme states of mind? Do we judge those who have attempted suicide as undeserving of a beautiful, calming, and truly healing environment?
Recovery from attempted suicide, mania, major depression, affective disorders, thought disorders or personality disorders can be a life-long process. Some never fully recover and must utilize psychiatric units as if they were equipped with revolving doors. If many of our most vulnerable citizens need to visit such places, why do we hesitate to offer them the most healing and supportive environments that we can? This is not just a medical question. It is moral question. And if this question was part of a pass or fail test, we would long ago have failed quite miserably.
Thursday, December 06, 2007
Tell Congress to Fund Darfur Peacekeeping Once and For All!
The United States has urged the international community to take action to end the ongoing genocide in Darfur. The United Nations has taken up the challenge and is aiming to deploy the most complex and logistically difficult peacekeeping mission ever. The UN is working hard to get the resources it needs for this mission and to put peacekeepers on the ground in Darfur, but Congress has yet to approve full funding for the United States' share of the peacekeeping!
Join with thousands of people across the country to take part in Darfur National Action Week. Tell Congress it is imperative that they provide the $724 million in emergency funding for the UN-African Union peacekeeping mission in Darfur, as requested by President Bush.
Lead your leaders! Call 1-800-GENOCIDE and talk to your representative -- urge him or her to make funding for Darfur peacekeeping a priority!
Wednesday, December 05, 2007
For myself, multiple chronic illnesses have insidiously crept up on me in the past few years, insinuating themselves in my life, making themselves at home in my personal orbit. Unwelcome and unrequested (well, consciously, anyway), they are nonetheless here for the moment, and hope for relief and recovery is an ongoing and daily process. Multiple Chemical Sensitivity, chronic myofascial pain, an apparent sleep disorder in the form of Restless Legs Syndrome, hyperlipidemia, gastroesophageal reflux disease, major depression, Post-Traumatic Stress Disorder---it's enough to make a nurse apply for disability. Still, hope lingers---sometimes by a thread---and I work towards relief, and towards remission if not cure.
Just a few days ago, I underwent five injections to my spine---medial branch blocks, to be exact---in the hope (there's that word again) that these injections would bear out the theory that the offending nerves can be temporarily shut down. If enough pain relief was experienced in the first few days after the injection, we would then proceed to schedule a Radio Frequency Ablation of those nerves, wherein the offending nerves are obliterated with radio waves, perhaps never to be seen (or offend) again.
Leading up to the injection procedure (which had already been rescheduled twice), I vacillated between hope and a resigned knowledge that, so far, nothing else has really worked. Based upon my reading of The Anatomy of Hope, my own perception of the potential for pain relief from this procedure may or may not have some bearing on the actual outcome. As Dr. Groopman explains, scientific subjects given placebos will often report the same symptom relief as the subjects given the "real" medicine or treatment. Why is this? It is seemingly based on a belief that the treatment will work, although the science behind the Placebo Effect is much more complicated than just simple belief. Still, based upon my previous experiences of mild or absolutely no relief from similar procedures, I have been hopeful yet guarded in my expectations of the potential outcome. So far, as of this writing, no pain relief has been experienced from the procedure.
In the course of his book, Dr. Groopman has an appointment with a well-known pain specialist, Dr. James Rainville, in an effort to seek treatment for his own chronic pain. The ensuing discussion is revealing:
"You are worshiping the volcano god of pain," he declared. "The volcano god of pain is your master. What do I mean that you are worshiping the volcano god of pain?" he asked. "You interpret pain as a red flag, a warning that you are doing damage to your body. So you sacrifice things that you love, activities that give your life joy, to be kept free from pain. You say to the volcano god: 'I will give up walking long distances if you keep me out of pain. I will give up lifting my children if you keep me out of pain. I will give up travel, because long trips stress my spine. Just keep me from pain.' "
"But this god is never fully satisfied with any offering; It is appeased for only a short while. So the more your sacrifice, the more the god demands, until your life contracts, as it has, into a very, very narrow space.
"I believe you can be freed from your pain. I believe you can rebuild yourself and do much, much more."
"Bullshit talks, results walk," he said. "You think what I am saying is complete bullshit. You've lived all these years without any real hope, and it's hard to open that door and glimpse a different kind of life. It's your choice: to try or not to try. You can walk out of my office now and believe everything you've believed for the past nineteen years, and live the way you have. Or you can test me. And I'll tell you I'm right."
Whether Groopman recovered from his pain or not (he did) is beside the point as far as I'm concerned. The fact that Dr. Rainville challenged Groopman's belief system about his pain, and offered him a hope of change and relief beyond his wildest dreams was, to me, as profound as any cure or remission. The explanation of the volcano god and his insatiable hunger for sacrifice of life's pleasures is striking, and an image that will remain with me forever.
Interestingly, since my pain began to be more debilitating, I maintained an attitude that I would not sacrifice things I love to do in the interest of the avoidance of symptoms. Yet, taking stock of my lifestyle, I can easily identify the changes I have made to accomodate my pain. Just this past autumn, I sold my cross-country skis. I refuse offers of kayaking with my brother due to the pain the paddling can cause. I don't go hiking in the woods and mountains like I used to. I curtail my bike-riding to shorter rides with fewer hills. Changes have been made, and pleasures have been curtailed. Is this a sign of giving up hope? Have I acquiesced to the volcano god of pain? Has he managed to override my powers of hope and faith in recovery? Do I dare hope for the eventual cessation of my pain? Is my constellation of chronic illnesses something with which I will struggle for the second half of this life, or is there a true possibility of remission or cure on all fronts? It is a wild ride and a tough row to hoe, and I would never wish such a struggle on anyone.
Life on this earth is meant to be embraced and enjoyed, but, as the Buddha said several thousand years ago, "Life is suffering." The Buddha did not simply mean that we must therefore unquestionably suffer in this life, as could be inferred from the statement when taken at face value. Rather, we suffer from our attachments, from our own human machinations, and by adhering to those fears and beliefs which bind us to our suffering.
I do believe that it is possible to escape the suffering of my illnesses through treatment, belief, and deep personal and spiritual work on myself. I also believe that it is possible to remain symptomatic without complete relief, yet to also succeed in lessening---or completely diminishing---my suffering, even if the symptoms still exist. The suffering is not the pain itself. The suffering is my reaction to the pain and its manifestations. Yes, I do worship the volcano god at times, and at others I flip him a solid middle finger and a firm "Fuck You!" Be that as it may, my pain is mine to live with, and it is also mine to release.
Tuesday, December 04, 2007
Entering the office, I am initially surprised to find a well-appointed waiting room which looks more like a hotel lobby than medical office (in spite of the ubiquitous receptionists’ window. Upholstered armchairs, stained glass lamps, an obvious absence of fluorescent lighting, wood panelling and wainscoting, a maroon carpet with Oriental-rug patterning, prints of famous paintings with sleeping figures, and low-volume classical music all set the somnolent stage.
Fittingly, an overweight man of 65 or 70 sits in a chair to my left, with well-trimmed white beard and mustache, arms crossed over his bulging midriff. He snores loudly, lulled to sleep, no doubt, by the calming atmosphere. He wakes abruptly and apologizes for snoring. “No problem,” I respond. “If you can’t snore here, where can you snore?”
“At home, I guess,” he says. We laugh, and the other patients in the waiting room join in.
In the exam room, Andrew Wyeth’s painting “Master Bedroom” hangs on the wall in a nice chestnut frame. The image is of a golden dog, fast asleep on a large four-poster bed, afternoon light streaming in the window. It’s a painting one could literally fall into and spend the day, or maybe a week. I’d give anything to curl up with that dog right about now.
The dog in the painting reminds me of my dear departed Sparkey and the way he would sleep in a curled up ball of utter relaxation. Back in the day, I would take every opportunity to cuddle and spoon with Sparkey, his 70-pound body warm next to mine. Sometimes, when I was desperately in need of grounding, I would lie on the floor opposite Sparkey, the tip of my nose touching his. I would then follow his breathing pattern, inhaling and exhaling with him, the comforting warmth of the air flowing in and out of his nostrils helping me to do the same. I sometimes lie on the floor and breathe with Tina, our little aging dog who has survived her big brother, but Sparkey’s breathing held a key for me that has so far been irreplaceable.
In the course of a 90-minute review of my health, as well as a brief yet thorough neurological exam, we discuss Restless Legs Syndrome and its miseries (which are sadly well-known to me), Periodic Limb Movement Disorder, sleep apnea, and other manifestations, signs, and symptoms of impaired sleep. It is an affable and very positive experience, both with the PA who examines me and the MD who comes in to wrap up the session and make a plan.
Following our lively discussion, I’m given a tour of the new facility, complete with hotel-quality sleeping rooms where I will be monitored for my sleep study best week. The rooms, like the waiting area, are well appointed, with fresh linens, private bathrooms, cable TV, as well as the ubiquitous artwork reflecting different aspects of sleep or sleepiness. The doctor, with whom I have actually shared patients in the past, has me check out the firmness of each bed and choose a room that I like. I go for Door #1. “Nice choice,” he says, making note of it on my chart.
I leave the appointment with a scheduled diagnostic sleep study next week (stay tuned for a blow by blow of that memorable experience) and a follow-up office visit in a few weeks.
Sleeping poorly---or not sleeping at all---often seems like a fate worse than death. When sleep is negatively affected, one’s entire life seems somehow altered, and not for the better, mind you. I imagine it is a relatively new phenomenon in medicine that sleep is even paid serious attention at all. This thing we do when we close our eyes for one third of our lives is both mysterious and necessary. What happens during those hours has been debated for years, and serious study has certainly made significant inroads in that regard.
As for me, my disintegrating sleep-life is in need of some serious attention, and it appears that today’s appointment is perhaps the beginning of just such a serious inquiry.
Although it often seems like just a pipe-dream (so to speak), I’ll say it anyway: To sleep, perchance to dream.......
Monday, December 03, 2007
Image courtesy of Gabriel Stauring, StopGenocideNow.org
The holiday season is upon us and people across the country are preparing to celebrate with their loved ones. This year, please remember the people of Darfur who do not have that luxury.
Every day brave women and girls venture from refugee camps to collect firewood, exposing themselves to harassment, kidnapping, rape and death. Their treks into the desert to collect increasingly scarce firewood make them easy prey for the roaming Janjaweed militias.
This holiday season you have the opportunity to give some of the two-and-a-half million displaced Darfurians hope for protection. Hope for safety. The Genocide Intervention Network runs an on-the-ground civilian protection program that supports safer cooking options such as:
- Alternative-fuel stoves
- Income-generating projects for women so they can afford to buy firewood when there is none to gather
- Guarded firewood patrols to protect women who leave the camps in search of firewood.
Our civilian protection program is the only one of its kind in Darfur, providing desperately needed security to women in the region, but it depends on the generosity of concerned citizens like you. Help us reach our goal of $50,000 and expand our civilian protection program by making a tax-deductible contribution today.
Contributions can be made as holiday gifts for your family, friends and colleagues. In this season of giving, what could be better than helping those who need it the most?
Our civilian protection program gives safety and hope to the people of Darfur, but we can't do it without your generosity.
Sunday, December 02, 2007
Our dear Woody---who was my wife's former partner, my son's best friend, mentor and honorary uncle, and my closest confidante---is as sorely missed now as he was five years ago. As much as I am able to embrace death as merely a continuation of life on another energetic and spiritual plane, his physical absence from our lives and home is still a palpable emptiness that has persisted over time.
The 2nd of each month also marks yet another month that our dear beloved dog Sparkey is gone. Sparkey and Woody were joined at the hip, twin flames who are inextricably linked in my mind due to their many adventures together over the years prior to Woody's death. When Woody would walk through our door, he would always immediately drop to the floor and allow the dogs to lick him ceaselessly, covering his red beard, mustache, eyes, and cheeks with their kisses of greeting. He would giggle as he lay there, the dogs intent on their right (and responsibility) to slick him down with joy and gusto. Once he was done greeting the dogs, we were next, and his entry was almost always a source of upliftment for all. Rene would have his "uncle" and playmate, I would have my best male friend, and Mary would have her old friend for whom she functioned as confidante, maternal figure, and spiritual sister.
When Sparkey died in September of 2006, we carried his golden and red body to his freshly dug grave in our yard. His coat always reminded me of Woody's hair and beard in its orange-red brilliance. It was like burying a part of Woody that day. Now a small dogwood (purchased and lovingly planted by our son Rene) sits on Sparkey's grave, some of Woody's and Tulane's ashes and Rene's baby teeth mixed with the rich soil of loss.
This first week in December carries with it a great deal of energy reflecting loss and grief. Yesterday, December 1st, used to be my parents' wedding anniversary up until their divorce in 1976 when I was 12 years old. Tomorrow, December 3rd, will mark three months since my step-father's death on September 3rd. Finally, the next day---December 4th---will mark what would have been my mother's and step-father's 30th wedding anniversary. Multiple blows of grief and loss billow through this week, and I/we just roll with the punches.
Still, I am grateful. These beings have fed me with their friendship and loyalty, adding immeasurable quality to my life's trajectory. My step-father (80), Sparkey (14), and Theresa (112) each died from natural causes---pancreatic cancer, renal failure, and old age, respectively---and they were all considerably old (especially Theresa!) based upon their respective species' life expectancy.
As for Woody, his demise was premature and tragic, although I give thanks in this moment for the wonderful times we shared together. Since we were both born in 1964, we had shared visions of our middle age and old age together, and had always looked forward to celebrating our 40th birthdays together. Sadly, we were robbed of that opportunity, and he left me to celebrate my birthdays without him---and there will doubtless be many, many more before I am ready to join him in the Great Beyond.
Woody's loss helps me to more fully appreciate and understand the loss experienced daily by people the world over who lose their loved ones to violence. Granted, I did not watch him be killed---a fate suffered by many individuals in Rwanda, Darfur, Burma, L.A., The Congo, and elsewhere---but he was still robbed from us, wrenched from our lives, and he is sorely missed.
So, here it is 5am and I am awake again. Morning has broken, mourning has broken, and we stand on this troubled planet looking up at the stars, wondering how our dearly departed are faring in their new manifestations, in whatever form that may take. Sparkey, Tulane, Theresa, Woody, and the many others: your days here are not forgotten, your departure still hurts, but we bless you and send you on your way. You are released, and when our blessed release comes, we will also know the sweet surrender of leaving this mortal coil, and entering those realms unknown to those of us still embodied.
May all beings be free. May all beings be happy. May all beings be free of suffering.
Saturday, December 01, 2007
Please join me in calling for the Department of Homeland Security to abolish the federal ban on travel for HIV positive persons to the US. It is beyond the time to address the outrageous discriminatory practice. Since 1991 the United States has prohibited HIV positive travelers to enter or cross its borders without obtaining a special waiver, which is then stamped on the traveler's passport as a permanent record of his or her HIV status. On November 6, the U.S. Department of Homeland Security (DHS) proposed new regulations on the entry of people living with HIVinto the US. These regulations, purported to "ease" the present travel restriction are, in fact, more restrictive.
In addition to disclosing their status, HIV positive travelers must now also provide documentation that they are financially able to pay for any healthcare needed during their visit, travel with all their required medications, make a commitment to adhereto these medications, and prove that they will not engage in any high risk behavior while in the US.
These proposed new regulations remain a serious violation of the human rights of those living with HIV. Not only is this policy an international embarrassment, it perpetuates on-going stigma and misunderstanding of the disease. The HIV travel ban is thesole reason that no international AIDS conferences have been held on US soil for the last 16 years.
The deadline to include your comment with Physicians for Human Right's submissions to DHS is 5:00 pm on Wednesday, December 5. Please follow this link to submit your comment via PHR's website.
AIDS Isn't Over
- Millions of Africans are infected with HIV each year.
- More than 10 million African children have been orphaned by AIDS.
- More than two million people died of AIDS-related complications this past year; 76% of those who died were in Africa
- In sub-Saharan Africa, 3% of the world's health workers struggle to combat 24% of the global disease burden.
- Health experts estimate sub-Saharan Africa needs 1 million more health workers.
- Collecting signatures for a petition to members of Congress asking for their support of African health professionals. Sign the petition.
- Sending a letter from leading health professionals to President Bush urging further US leadership in the fight against the AIDS pandemic. Read the letter.
- Collecting video postcards to the members of the US Congress from health professionals and health professional students. Create your own video message or watch one of our favorites.
- Featuring African colleagues in photo narratives. Meet Dr. Katumba and Ms. Byarugaba
- Telling the story of health professional members and their recent trip to Kenya for the first Health Rights Conference in that country's history. Visit the blog.
- Organizing members to comment on the proposed ban on HIV-positive travelers entering the United States. Read our statement or take action now.