One Love

Since my attempts to visit my (now former) patient at the nursing home were scuttled every day by the vicissitudes of my work-life, I simply went there today after work. I'm often exhausted on Fridays at 5, but seeing her before the weekend felt like an absolute necessity. Over the last few days, the tearful calls from my patient's daughter have been numerous, a great deal of my already busy days interrupted by panicked calls. Learning that she is now considered a hospice patient increased my need to pay a visit.

The nursing home visit was enough to reestablish our heart connection. I entered the room to find daughter, grandson, grandson's wife, and one-month-old great-granddaughter visiting my significantly skinnier patient. Although she denies trouble swallowing and is receiving daily radiation to her upper chest, I have no doubt that the realization of her terminal state is sinking in, depression becoming the underlying factor behind the loss of appetite, or at least the desire to eat.

After the family took their leave, we sat on the bed holding hands, the three other women in the shared room all sitting in their small spaces watching their separate TVs. This institutional room is cordoned off into four sleeping areas with those ubiquitous and oh-so-ineffective "privacy curtains" found hanging from the ceilings of hospital rooms everywhere. It's sort of like being in a dorm room with three roommates, but none of you are studying, you all have some chronic illness or illnesses, and the activities scheduled for the "students" leave much to be desired, as does the food. The smell of urine is as ubiquitous as those flimsy curtains, and many residents simply sit in wheelchairs with empty gazes, marking time between meals. The lucky ones are visited by family members who bring homemade food, flowers, crossword puzzles, and books. The less lucky residents simply languish and make the best of an inadequate situation.

Meanwhile, my dear patient and I sat looking into one another's eyes and breathing together. I told her in Spanish that our connection is one at the soul level, and that I would keep her in my thoughts and visit as often as I could. As expected, despite her suboptimal circumstances, she inquired after my wife, son, and dogs, and was genuinely interested in the details of my response. We blessed one another and verbalized desire to see one another on Monday "si Dios quiere" ("God willing"). I playfully tapped the tip of her nose and left her with a wink, her smile fading as I reached the door.

Listening to Bob Marley's "Exodus" CD on the way home, I was reminded of the lyric I had heard this morning on my way to work: "Ooh when the rain falls it don't fall on one man's house". Although Bob was then referring to the eventual fate of the "downpressors" who oppress the poor and covet the riches of the earth for their own gain, I took it at that moment as signifying the fact that any of those people in that nursing home---my patient, or the woman in the wheelchair who was sitting and staring into space---they are all me, my brethren, my family, my mother or father. It was yet another moment of seeing the bigger picture, the forest for the trees, the life taken for granted, the gratitude for life so easily forgotten. They are only a reflection of us, as we are of them, no more or less deserving of love and compassion. It was a truly human moment, a reminder of so many gifts. I smiled and continued down the road towards home.

One Love, One Heart.

A Sad Moment

I've sent my second patient in as many months to a nursing home, and it's always a difficult and painful decision. In this most recent case, it is my 69-year-old patient with AIDS, depression, psychosis, and a large mediastinal (upper chest) mass which has turned out to be spindle cell sarcoma, a rare cancer which is very difficult to treat and impossible to cure. Although her daughter has cried many tears over the decision, her brief time at home last week demonstrated for us quite clearly that she is far too complicated and gravely ill to be managed at home, but far too stable to remain in the hospital. Hence our decision.

Even though this patient is no longer in our program, I have been seeing her as a "free care" patient for more than a year, no reimbursement coming to us for my work. Now that she's landed in long-term care, my official job is over, and I will simply visit her as a friend and try to console her for her loss of freedom and increasingly serious illness. Long gone are the days of my weekly visits to her house to fill her med box and chat, almost always leaving with a gift of plantains and fruit. Although our conversations have always been in Spanish, she still has consistently gone out of her way to say "I love you" and "happy weekend", even as her discomfort and pain increased. And when I visit her in the nursing home---no matter how distraught she may be---she will still ask me about my son, wife and dogs, and will, as always, appear to relish the answer when I tell her that they are all well.

I know that I have added quality and love to this woman's life, but I'm saddened that her life may reach its denouement in an institutional and foreign atmosphere, away from the smells and sounds of family life. Can I mourn for another who is not yet gone?

Crack!

Two of my patients who've been clean for many months are now using crack again. In times of stress, many of us turn to food, TV, slothfulness, and other addictions. In some lives, the lure of a cheap and fleeting high is too much to bear.

Last Friday, I called a patient that I haven't seen for a while and told her she'd been on my mind and I wanted to pay her a visit. She said that she'd been thinking of me at the moment that her phone rang and was not surprised to hear my voice. An hour later, I was at her apartment. After the usual pleasantries and inquiries about her health, I could tell that she had something to say but was having trouble forming the words. Due to her hesitancy and the way she looked at the floor and avoided my eyes, I knew that she had "picked up" again. I moved from the couch across the room, sat down next to her on the other couch, and put my arm around her shoulders. "Digame", I said. "Tell me". She admitted to using crack and I quickly assuaged her fear of judgement and reassured her that these things happen and we would work with her to find a way through to the other side. Her shame was a palpable presence in the room.

After giving her a flu shot and several hugs and words of encrouagement, I took my leave and moved on to other people, other places. Today I received a call that her heat wasn't working but she reassured me quickly that her bill was paid in full and it was just the fault of the landlord, not her drug use. But it's a sign that things are not as they should be. Again.

Addiction coils around the reptilian brain like a slithering blight, blocking out the light of reason. Ah, the failings and treachery of the human heart and mind.

Headline: Recovering Nurse

New England: Nurse slowly emerging from a relatively tiresome pit of fatigue and stress, sense of humor intact, Compassion-O-Meter still active. Some R & R is in order, but Nurse will live to fight another day. Respiratory symptoms bothersome but improving. Nurse will care for self and home-life for several days. Stay tuned for further developments in this never-ending and self-centered story.

The Nurse Laid Low, Revisited

Can the caregiver ever really let go? That is the question today. Calling in sick for a day is intelligent and difficult. Calling in sick two days in a row is not only brilliant but excruciating.

First, there's the feelings of guilt for burdening one's colleagues with extra work. Second, there's the feeling that one is missing something, forgetting an appointment, abandoning needy patients in their hour of desperation. Once one gets over that, it's clear that: 1) the patients will survive and access other portals into the healthcare system as needed; 2) you will be called upon to cover for sick colleagues over the long winter months as well; and 3) the world does indeed keep turning when you are sick at home, tissues and tea bags flying every which way.

The body has a way of letting one know when it's time to rest and take a breather, and if one doesn't listen, often the body will force your hand by making it almost impossible to keep going without dire consequences. That is my predicament this week. I've been burning the candle at three ends for months. I've been feeling well (albeit receiving occasional signals that my body was trying to tell me something) while also knowing that I was running a risk of pushing too hard for too long. Although I took a week off over the summer and many long weekends, my schedule at work and at home has kept my motor running at high rpm's, and now is the time to do some basic maintenance and catching up on self-care.

Last night, feeling like the dedicated professor, I did indeed go to school to teach my class, cutting them loose an hour early. With my raw throat and foggy brain, it was a challenge to lecture on diabetes and the care of the patient in shock, but I actually think I did a good job. Being sick, I went slowly, chose my words judiciously, and felt like I got my points across clearly and concisely. Teaching can really be quite fun, even when one feels like death warmed over.

Many of us in the "caring professions" have difficulty caring for ourselves and saying no to work and its incessant demands. We all know that work will swallow us whole and spit us out in lovely little pieces if we're not careful, and it really is up to the individual to use the power of personal boundaries and eschew the gravitational pull of the workplace when under the duress of illness or burnout. While taking a sick day might temporarily inconvenience patients and coworkers alike, it also speaks volumes about how we value ourselves, setting a quiet but powerful example for others vis-a-vis the ability to care for oneself in a world that values productivity so highly.

Today, my productivity consists of how many cups of tea I can drink, how many naps I can manage to take (after the furnace guys are done making a bloody racket), and how many different ways I can think of to restfully entertain myself as my body recuperates and recovers its homeostasis once again. Now off to boil some more water.....

The Nurse Laid Low

Alas, a sick day for the dedicated nurse. Calling in sick is always fraught with worries: Will my colleagues be overburdened while covering for me? Did I forget some earth-shatteringly important appointment? Will my voicemail-box be full when I return to work tomorrow?

Nonetheless, I must go to school tonight and deliver some semblance of an educational experience for my students, sore throat be damned! I think I'll eschew the usual lecture for small-group collaboration.....Hmmm.

So here I am, home on a rainy and cloudy day, snuggled in a blanket in the living room. Sleep is a useless endeavor as the guys from the heating company install a new $5000 furnace in our basement, banging away like there's no tomorrow. The old furnace came within a hair of exploding (really!) so we are happy to spend many thousands to avoid untimely deaths. (As Mark Twain once said, "Reports of my demise have been greatly exaggerated".)

Work as Identity Redux

Eight months ago, I briefly explored the idea of work as identity. This morning I awoke to thoughts of a similar vein, thinking about how much my identity revolves around being "a nurse", and to a lesser extent, "a teacher". It is an idea worth exploring further. Interestingly, I was recently asked permission to be linked on a blog which studies and follows work-related blogs, and I took the time to answer a questionnaire by said Scottish blogger/researcher.

As I wrote back in February, most people respond to the question "What do you do?" by describing their work-life, as if this is their defining role/identity: "I am a teacher/doctor/programmer/consultant/etc." It is rare and unexpected that someone responds in a more creative and less acculturated way: "I am a mother/father/son/lover/gardener/reader." Is this the same in other cultures? I would love to know.

For me, I still struggle and consider what it means to be myself in the world. How do I define myself? What is my place in the world? Some would say that, at 41 years old, one should be well aware of one's place, one's significance in the larger scheme. But I would counter that an examined life involves frequent questioning and retooling of one's identity, or at least thoughtful examination of one's suppositions and assumptions about oneself. It's easy to be complacent, but the examination of oneself can be revealing (and hopefully not too disheartening, as long as one is open to needed alterations in self-perception).

At this juncture of my life, being a decade into my first real "career", my "nurseness" carries a great deal of weight in my self-identity. In my late teens and early twenties, I was an "artist"---attending (and subsequently dropping out of) both the Philadelphia College of Art and The Pennsylvania Academy of Fine Arts. With a lack of discipline and without the stucture of school, "artist" gave way to "waiter", "bookstore manager", then "massage therapist", "yoga teacher", "housecleaner", "personal care attendant", and eventually "nurse". So here I am, Nurse Carlson, or as many of my Puerto Rican patients say, "Doktor Keet" (you do the accent).

Whether I have written it here in this venue or not, I do sincerely long for a day when my identity does not revolve around work. I look forward to a day when I simply am an individual in the world, living a good life and doing good things in the world. I do not generally define myself as "an American", although I do define myself as a married forty-something man with an incredible son and wonderful wife. Even those and other labels: father, husband, heterosexual, man, homeowner, citizen--what do they describe? What do they say about me as a person? Do they describe my presence in the world, my contributions to society at large? The answer is yes and no, of course, but mostly no. Those words offer mental pictures, generalizations upon which larger suppositions can be based, but they do not define who "Keith Carlson" is, nor should they.

The next time I am at a party or social gathering, I would like to challenge myself to answer differently when questioned about "what I do". How can I finesse such a conversation? How long will it take for me to eventually blurt out, "I'm a nurse"? How long would it take for the questioner to say, "Yes, you are a husband and father and reader, but what do you DO?" How long until I give in and launch into my "tape" about my work? Can the other person be fully satisfied by our conversation without safely wrapping me in a box labeled clearly with a defined career?

There is something else to bear in mind that can easily reveal our cultural judgements about certain occupations. If someone we meet responds to the same question regarding work with a sentence that begins with, "Oh, I'm just a __________"---you fill in the blank---how do we respond to such a statement? What do we immediately think when the person says they are "just" a secretary, a janitor, a housekeeper, a clerk, a delivery person, a home health aide? What does it mean when an individual verbally apologizes for their work by preceding their title with the word "just"? Do they expect us to judge them? Do they expect pity? Do they feel less-than in the broader sense of work being intrinsically tied to identity and worth in our image-obsessed culture? They do not necessarily want pity, but they most certainly must feel afraid of being judged, and must often feel that their place in the world may be seen as less glamorous, less important, less crucial to the workings of the societal machine.

Let's be honest---an individual says that they are a mechanic or window-washer and many of us--myself included--will immediately think classist thoughts, or mentally pigeon-hole that individual as working class or under-educated. Do we know for a fact that the window-washer is uneducated? Do we know that he doesn't go home and study existentialism and publish a blog about his findings? Do we know whether he has eschewed another career for a simple life wherein he can pursue his intellectual interests without the burden of 40 hours of work and a long commute to pay for the student loans he never wanted? We must challenge our assumptions about others and their relative "value" in the world. We must try to define others by their actions, not their labels. This is a message to myself as much as to anyone reading this missive. It is a universal message, and one worthy of introspection and practice.

As for me, my identity is currently intrinsically tied to my career, my work, my self-as-nurse. Many nurses appear to feel similarly, even after retirement, perhaps because nurses are held in such high esteem in this culture. If one were asked about their instinctive desire to trust a dentist, nurse, or lawyer, I would assume most people would choose to trust the nurse, even before meeting that person. Whether that is a fair judgement or not, I believe it to be true, and our culture continually reinforces such stereotypes in myriad ways.

Thus, the challenge is to meet others and interact in the wider world with as little judgement and preconceived notions as possible, measuring others by their character and personality, not by their stated career or self-definition. The next time I speak to the janitor at the school where I teach, I will open myself to him a little more. I know his name because I asked, but what more can I know? What makes him tick? Why is he as interesting---or more interesting--than the president of the college? Yes, he is a janitor---that is how he puts food on the table---but he is so much more. And I am more than a nurse and teacher. "Human being" is a good place to start, and that definition levels the playing field for us all.

On Being a Witness to Suffering

What does it mean to be a witness to suffering? What impact does it have on one's psyche and soul to bear the very human burden of sharing others' pain? Is there a cumulative effect? Does one become immune or hardened against the pain of others? Is there a point where one just has to quit altogether? These are ostensibly rhetorical questions which I frequently ask myself in the midst of my work, especially during periods of exceptional stress and intensity.

What does one say to a patient who has an enormous unidentified growth in her upper chest for which very little may be done? How does one console the middle-aged man addicted to crack cocaine and destroying his life? What tactic of therapeutic counseling is best when dealing with a 50-year-old woman with addiction to migraine medications? How to assuage the fears of a lovely woman with progressive multiple sclerosis who can no longer cook or do laundry, let alone go shopping for clothes with her teenage daughter who hates her mother for being chronically ill? How can one offer hope to the gentleman with throat cancer, a tracheotomy, a feeding tube, and chronic pain? Is it possible to salvage a life which is apparently imploding before one's very eyes? These are examples of not-so-rhetorical questions which figure largely during my interactions with patients on a painfully frequent basis.

There are many answers, but each answer also raises further questions, rhetorical or not. And with each patient who leaves my orbit---either through death or another less dramatic form of programmatic attrition---another takes their place, individuals whose stories will also become threads in the fabric of my Monday-to-Friday life, seeping into my weekend consciousness all too frequently as well (an occupational hazard, apparently).

I sometimes ask myself why I choose such work, electing to continue to serve those in pain, those suffering, those whose lives are unorganized, chaotic, riddled with disease and dysfunction. There's not always an easy answer to such ruminations, and on days when I witness people making incredibly poor life choices and propelling themselves into further illness and dysfunction, I cringe at my dedication and wonder if my limit will soon be found, the emotional levees breached, the city of my mind flooded beyond its capacity to continue to witness such self-destruction and pain. Until that time, I imagine, it is the golden moments---such as the recent death of my sweet patient and the gratitude of his caregiver---which propel me forward and reinvigorate my desire to serve.

Please understand that, among my eighty-ish patients, there are a good number (15 to 20, perhaps?) who care well for themselves, make excellent choices, practice flawless self-care, and respond to their environment and circumstances logically and sanely, even under duress. Serving these individuals is a pleasure, and I will bend over backwards to assist those who are willing to meet me half-way, those who give 100% of themselves to their own care and survival.

But it is the others---a majority---whose care is burdened by the sense that one is working against psychic and cultural forces upon which one can have little influence. There are some patients who seem to completely lack all powers of personal insight, who lash out at the world, flailing in desparate loss of control and the inability to step outside of themselves and objectively examine their own behavior and place in the world. Yes, socioeconomic barriers, racism, and cultural dynamics are also at play here, but that does little to assuage one's feelings of hopelessness, frustration, and yes, anger, when banging one's head against a wall day after day appears increasingly futile and counter-productive.

Nonetheless, it is the human spirit which powers our lives and our choices, connects us to one another, and energizes our will to give to others. Yes, I have also suffered--most profoundly the unjust killing of my dear friend Woody, but yet my suffering seems small when compared to the trauma which others have witnessed, often first-hand. Drug addiction, physical violence, untreated mental illness, poverty, malnutrition, institutionalized racism, economic violence---I am free of such dramatic experiences, and thus I am afforded opportunities which others have never been blessed to know.

Sitting in my comfortable home, surrounded by my relative luxury, I rest from the week's travails, and revel in the fact that I have this glorious time and comfortable physical space in which to take in my many blessings---blessings which I can so very easily take for granted if I am not conscious of their transitory nature. No matter how difficult my path may seem at times, it is a path of priviledge---priviledge unknown by so many. Paradoxically, it is this very priviledge that allows me to recharge my batteries and return to the fray each week. Burnout is not an option but is an ever-threatening reality. The weekends offer time to wash the stress from my body, release the cortisol from my tissues, and ready myself for the days to come, the cycle of life and work, of service and giving, of the turning of the page. Thankfully, today's page was a gentle read, and I am grateful for the ease with which it unfolded.

As for suffering, it is still my karma to work to lessen the suffering of others, and to that end I'll continue my work for now with as much humility and patience as I can muster.

May all beings be free from suffering.

No Better Reward

Here is the text of a card I received yesterday from the incredibly kind and compassionate caregiver of my patient who recently died....

"It only takes one smile to offer welcome, and blessed be the person who will share it. It only takes one moment to be helpful, and blessed be the person who will spare it. It only takes one joy to lift a spirit, and blessed be the person who will give it. It only takes one life to make a difference, and blessed be the person who will live it (by Amanda Bradley).

"Keith, thank you for your support, care and love....God bless you every step of your life. Please give thanks and and love to those who cared for _______________ in his journey in life. Keith, I'll never forget you."

There are no words......