Apparitions and Laughter

Since everything is but an apparition,
Perfect in being what it is,
Having nothing to do with good or bad,
Acceptance or rejection

You might as well burst out laughing!

LONGCHENPA

Here With the Lord Beside Me

She sits on the double bed in her studio apartment with great dignity, the early morning light streaming in the window. Gospel music plays on a small CD player on a table by the kitchen door. This is our first meeting since I'm just covering for her usual nurse.

"How are you this morning, _________?"

"Oh, I'm OK. I'm here with the Lord beside me," she says with a nod of her head towards the CD player. The music plays on.

"Did you sleep well last night?" I ask.

"Well, I only slept a few hours. I can't sleep much since the doctors killed my daughter last year."

I look her in the eye, and she stares back. Her gaze makes me slightly uneasy, but I hold it.

"I am so sorry for the loss of your daughter. That must be so hard."

"Yes, but He sees me through."

We listen to the gospel music for a moment.

"The music is really beautiful," I say sincerely.

"Can I give you your meds now?"

"Sure, honey," she replies.

I put her morning meds together, prefill her evening meds to take with dinner, and ask if she needs anything else.

"No, I'll be alright. My PCA will be here in a few hours."

"OK. I hope to see you again some time, my dear."

"God bless you, and thanks for coming."

She stares at me with that unsettling gaze again. Sometimes the chronically mentally ill can be socially awkward or unaware of how they look at people or how they speak. But in this case, I just feel like she's looking at me very deeply, and I simply try to meet her gaze.

"God bless you, too, and I'm very sorry about your daughter."

"Thanks you. Bye bye, dear," she says as I close the door.

Walking to my car, the ubiquitousness of loss and grief hits me, and I take a deep breath as I open the car door.

Just another day on earth.

A Neighbor, A Death, and Thoughts Thereof

This morning, I was walking our dog and noticed a line of cars in front of a neighbor's house. All of the people walking up to the house were dressed in dark colors and the mood seemed very somber. Arriving home, I told Mary that I had the feeling that someone had died. We checked the local obituary and discovered right away that our neighbor---a man of 57 in the prime of his life---had indeed died twelve days ago of cardiac complications. Luckily, the memorial service was today, and we were able to attend and join the community of mourners.

The service was held in a local church, the altar still brimming with Easter flowers. The music of Van Morrison played in the background as people filed in and found their seats amongst the pews, and the service itself was a lovely event, replete with moving readings, poignant music and poetry, funny stories, and shared remembrances. The wife of the deceased spoke of their thirty years of marriage, and his adult children each took a turn to honor their beloved father whose absence will be all too keen as they themselves move toward their own parenthood.

Over the course of the service, I remarked to myself how this particular event was just what it should be. For those familiar with the person who had died, it was a reminder of cherished stories and of his particular idiosyncrasies which made him unique. With friends coming from near and far, I'm sure some new stories came to light and provided even more elucidation of his very singular mark upon the world.

For those of us less familiar with our neighbor, the service provided a very intimate snapshot of a life well lived, and the varied sharings left one with a very strong impression of a man, a family, a life, and a brilliant personal legacy.

Mary and I did not know this gentleman well, but we would cross paths with him and his wife while we walked our dogs over the years, and I recall that she even came to our house for a party once upon a time. Luckily for us, the last time we saw him was in the autumn. We were sitting by the pond near our house, and he sauntered over with his dog and sat himself down next to us, something quite uncharacteristic for a man who was generally much more socially reserved. I recall that we were at first feeling rather private, but he was very good company that day and we enjoyed our conversation with him very much, and never saw him again throughout the subsequent long and cold winter. What a blessing that we had that opportunity to be with him, and how glad I am that we have that memory of our last interaction.

Now, a new widow is in our midst, and within the privacy of her home, she will continue this process of grieving that is only weeks old. She and her children will go to the university to clean out his office, go through his papers, and will perhaps be at once perplexed and overjoyed by the things that they discover. How little thought most of us must give to the fact that, upon our untimely death, our loved ones will need to rifle through our things and settle the dust of our lives. There will be much to settle in that household after such a creative and productive life, and I do not envy that family the difficult task at hand.

With two dear friends so recently in surgery and now the death of our neighbor, I'm reminded quite starkly of the fleeting nature of life. As I struggle with chronic pain and some recently significant depression, I hold my own life up for close examination and wonder what conclusions would be drawn about me at my own funeral. I know I need to smile and laugh more. I also know I need to have more fun and take time to relax. While I struggle to earn enough money, I can say with certainty that no one at my funeral would begrudge my earning power or lack thereof. Still, life proffers many challenges, and we strive to honor our earthly responsibilities while also taking time to smell the roses.

Life is tenuous at best, and this week's experiences in my own life demonstrate that it can be saved or snuffed out at any moment. I am aware of this tenuousness, and I only wish to make that awareness something that informs my every breath.

Friends at Risk

As I write this missive, two friends are undergoing surgery, placing their lives in the hands of doctors and nurses and anesthetists on this very morning.

One friend is having a total hysterectomy in order to control Dysfunctional Uterine Bleeding (DUB) which has been unresponsive to hormones and other non-invasive treatments.

The other friend has been suffering from severe headaches and back pain which could not be controlled with any medications. An MRI of the brain revealed a 2-centimeter tumor in the frontal lobe. There are many risks to the surgery, including nerve damage which could result in paralysis or other consequences.

I will also mention that the husband of an old friend has multi-organ cancer which has not responded to conventional chemotherapy and he will now undergo a clinical trial at a major East Coast cancer treatment center in an attempt to slow or reverse the disease process.

May the surgeons and nurses and other surgical staff be guided to perform at the height of their skill. May my friends recover from surgery fully healed, without negative side effects or complications. May the cancers be contained and eradicated. We prayed for them last night here in our house, and we will hold them in our thoughts this morning and throughout the day.

What are my problems in the face of such suffering and life-altering disease? May we all find perspective and some modicum of peace when we examine and consider the suffering of others.

Back in the Saddle

Dear Readers,

I have been out of town for the long holiday weekend, visiting family along the Eastern Seaboard. If you and yours celebrate Easter, I hope it was joyous. And if you celebrated Purim, joy and merriment to you as well!

Traveling by Amtrak had its ups and downs, but overall it was worthwhile not having to drive all of those arduous miles. (I am also aware that train travel is a good choice vis-a-vis environmental impact). Still, getting around by train in the U.S. is nothing like it is in other countries, and I found myself pining for the timely, clean, and comfortable trains of Europe.

Now, here I am back at home, happy to be in my own space, and ready to get back to work once again. Stay tuned for the usual frequent blog posts, and please keep those comments, cards, and letters coming!

Blessings!

Change of Shift, Vol. 2, No. 19

The newest edition of Change of Shift is now available for your reading pleasure. Change of Shift, the brain-child of Kim McAllister at Emergiblog, brings you some of the best blogging by nurses anywhere in the blogosphere. I highly recommend a perusal, and many thanks to Kim for keeping Change of Shift active and dynamic.

The Ides of March

"Beware the Ides of March" was the soothsayer's warning to Julius Caesar prior to his assassination in 44 B.C., and the saying was apparently ingrained in the English language by William Shakespeare in his play Julius Caesar as a warning of impending doom.

According to Wikipedia, "the term ides was used for the 15th day of the months of March, May, July, and October, and the 13th day of the other 8 months" (in the Roman calendar).

In my life, the Ides of March signifies one of the most difficult times of the year. Living in New England, mid-March generally manifests as a blustery and damp time of fickle weather, fluctuating temperatures, chilly winds, and a deep longing for a Spring that is painfully slow to arrive. In the latter portions of March and early April, "mud season" arrives as the ground thaws and fills with the moisture from melting snow and ice. In March, our warmth- and sun-starved faces turn towards the sun whose appearances are still frustratingly brief. Still, with extended Daylight Savings Time and the natural course of solar events, sunset comes later and later, and the return of the light is upon us.

As I so recently opined, March also brings several death anniversaries, as well as the birthdays of a number of deceased loved ones, a potentially unfortunate synchronicity. But perhaps this inward and historically melancholy time is naturally and simply perfect for reflection and grief. One must remember that, on the heels of this most interminable winter, Spring is just around the corner, bringing with it longer days, brighter sun, blooming trees and grasses, and rising temperatures.

I wait with baited breath for those heady days when we can lay on soft earth and grass, soak in the sun, and turn our faces towards that beloved golden orb with relish and joy. Until then, we allow the Ides of March to come and go, looking forward towards the dawning of April and the coming of Spring.

Pain: The Unwanted Hitchhiker

Chronic pain is so very inconvenient. It is so limiting and restricting, like a belt worn unnecessarily tight.

Pain effects one's sleep, one's ability to exercise. It can curtail the enjoyment of sex, and even the most burgeoning appetite. It restricts one's activities, precludes some activities altogether, and can be a demoralizing agent whose influence cannot always be ignored.

Pain is like a hitchhiker who has worn out his welcome but cannot be extricated from the passenger seat. Perhaps his first appearance was not overly worrisome, and he exited peacefully when requested to do so. Maybe he was even helpful that time you had an emotional flat tire and needed an excuse to rest. But months later, thoroughly ensconced in the back seat, wearing an iPod, drinking a Coke and ignoring your every plea, this aberrant guest now refuses to let you be. The welcome mat---if it had ever been in place---was long ago jettisoned, but this vagabond ignores the rules and clings to you like a needy child.

When did this pain become such a burden? At what point did I realize that my life was being taken over? When was it that I picked up a passenger whose very presence makes me scream with impatience?

And so, with no other bright ideas, I embrace pain as a teacher. I follow his lead, peering into dark alleys which have long been ignored. He leads me to painful emotional places riddled with doubt and self-loathing. His mere presence is yet another vehicle for cultivating a mindful response to life, acceptance of what is, however difficult or ugly.

I am mindful of my pain, but also mindful of my innate ability to rise above its undo influence on my life. He is an unwanted hitchhiker, it's true. But even the most unwanted guest may hold in his hand a gift of great beauty, and since he is slow to reveal his secrets, I will continue to pursue them, even as I wish him gone.

So, dear Pain, my most aberrant passenger: reveal your gift and be done with it. I am ready for the message now, and ready for you to move on. The damage has been done, and I am poised to reclaim my life from your messy grasp. Relinquish me now, and leave your gift by the door. And please, don't look back. You will not be missed in the least.

A Brief and Pleasant Exchange

She's waiting for me in front of the tired clapboard house on a busy city street. I'm doing a visit for a colleague (in my new consultant position), dropping off some meds and checking in on this very lively couple with whom I am totally unacquainted.

"Hey! Thanks for coming over with the meds!" her partner yells. He is jovial and talkative, slapping my back and shaking my hand.

The house is a boarding house: shared kitchen, office downstairs with staff during the day. Pretty clean inside, a little rough around the edges. Their room is one large bedroom with a bathroom and a closet. A little small and dark, I think.

"How long have you been here?"

"About a month," she says.

"It's great. You both seem really happy. Can I check your blood pressure while I'm here?" I hand him his prefilled medication box and give her the rest of the things I've brought over: medicated shampoo and cream, Lidoderm patches for his muscle pain.

"It's so much better than the shelter," he adds. "I've been clean two, maybe three years now. See my tracks?" He shoves his arm at me as he rolls up his sleeve. I examine his forearm and the crook of his elbow, which he obviously wants me to inspect closely. Sure enough, track marks galore, but quite old and healed.

I take his blood pressure as he sits on their only chair. When it's time for me to check hers, she sits on his knee.

"This woman," he says, motioning to his partner. "She's my life. Don't know what I'd do without her."

"You all obviously care about each other a lot," I say in response.

"Yeah, through thick and thin," he says. She laughs.

We talk briefly about their health. I question them, nurse-style, about their bowels, their urinary status, pain management, respiratory status, the usual line of questioning. They answer each question with kindness and patience.

"Hey, thanks for coming, man. We really appreciate it." He shakes my hand and slaps my back again, just like he did when I arrived.

She leads me down the stairs.

"You have yourself a man who loves you, don't you?" I ask.

"Oh, he's the best. We've been though a lot together."

"Well, you keep taking care of each other. I hear you're both doing a great job."

She smiles. "Yeah, I guess so. We're tryin'. That shelter was awful, but things are better now. Thanks for bringin' our stuff over. Sometimes it's so hard to get to the clinic."

"No problem. Glad to help out," I reply. "I hope to see y'all again."

"You're always welcome here." She smiles as she closes the door.

So polite. So welcoming. So amenable to my presence, despite never having met me before. A thoroughly pleasant interaction, made easier by the fact that I bear no responsibility for their care, just for this brief and satisfying exchange.

International Womens Day

Today is International Womens Day, and I want to take this moment to recognize this very important day for women worldwide, a day which saw its genesis in the Socialist movement of the early 20th century. The website of the World Health Organization points out that this year's theme is "investing in women and girls". Investment can mean many things to many people. In my view, we could best invest in women's health, girl's education, violence eradication, an end to war, and socioeconomic justice for women, to name a few places to begin.

As the son of a woman, the husband of a woman, the uncle of several women, the brother of a woman, and the brother-in-law and son-in-law of several women, I feel that I have many significant and powerful women in my family and in my life, and I am grateful for them, as I am for all of the women who touch my life, both personally and professionally.

Having always considered myself a feminist, and working in a profession which is 95% women, I am sensitive to the plight of women and aware of the struggle for power and recognition which women have waged for hundreds of years. Today, in many countries worldwide, women still fight against the threats of rape and violence, not to mention the constancy of war. With rape being used as a tool of war, and human trafficking---mostly of girls---still widely prevalent, girls around the world are still at a great disadvantage.

International Womens Day is but one day when the world's attention is drawn towards the struggles of women for justice and parity in a world which has yet to fully offer either unequivocally. I urge you, dear Reader, to pause and consider how you might contribute---financially or otherwise---to the advancement of women's causes today and beyond, and then perhaps make a plan to follow through. Whether it be a contribution of time to a single young girl, or a check to a women's organization of your choice, consider how you can invest one small piece of yourself in the struggle, and honor yourself for being a part of the solution.

Happy International Womens Day.

The Flu Still Fits....

The flu is infamous for making it seem like it's on the way out, and just when the unsuspecting victim begins to expend some extra energy----ZAP!----down he or she goes once again.

I am trying to avoid this pitfall by laying low, sticking to home, begging off all work, and basically treating myself like an invalid. Today's menu: a wonderful Israeli movie which I highly recommend (whether you're sick or not); a few ever-so-brief walks with Tina the dog; some emailing; some phone-calls; some computer-based work; a nap or two; another movie which I cried my way through; and an evening with Mary. All in all, not a challenging schedule by any stretch.

And tomorrow? I'm afraid to even plan........

If the Flu Fits.......

Woe to anyone who suffers the flu this season, and I can now count myself among the chosen who have been visited by this most hard-hitting of viral illnesses. Arriving home from a trip to see my parents, I began to feel unwell on the train as I traveled through New York State. By the time I arrived home to New England, a fever, chills, and unbelievable muscle aches had taken over, and I moaned my way through the night as my amazingly patient and solicitous wife tended to my every need. Now I'm lethargic, with a head that feels like it's filled with cotton-candy, and muscles that ache unceasingly (although a hot bath worked wonders this afternoon).

According to the Centers for Disease Control, the week of February 23rd---the 8th week in this year's flu season---saw widespread reporting of influenza by epidemiologists in every state but Florida. You can see the epidemiological map here. According to the data, the entire country seems to have become "lit up" with flu, so to speak, during the month of February.

It is often difficult for people to tell whether they have the flu or a common cold. There are many tools available to assist you in making that determination before you call your doctor, and I offer several useful links forthwith.

A handy quiz on About.com will guide you through a series of questions to determine the potential source of your illness.

C Health offers this table comparing various symptoms.

The good ol' CDC offers general advice on the difference between the flu and the common cold.

And the U.S. FDA also chimes in with a basic table of symptoms.

As far as treatment for the flu, there's really nothing more to do than rest, hydrate, take a non-steroidal anti-inflammatory for pain and headache, and then rest some more. And did I mention rest? If your fever becomes precipitously high---especially in children and adults with other underlying conditions---a trip or telephone call to the doctor is probably in order. However, the majority of flu sufferers can usually stay home and recover without unnecessary use of medical resources.

As for me, even more rest is now in order, and I hope to be back to my usual self in a few days. Luckily, transmission of real viruses is impossible over the Internet, thus blogging while suffering from the flu is still allowed by the CDC.

More soon from Influenza Central.

Thoughts and Happiness

We are what we think.

All that we are arises with our thoughts.

With our thoughts we make the world.

Speak or act with an impure mind
And sorrow will follow you As the wheel
follows the ox that draws the cart.

Speak or act with a pure mind
And happiness will follow you As your
shadow, unshakeable.

----THE BUDDHA

The Nurse as Ogre

I enter the exam room with a tray in hand and a smile on my face. The tray holds four vaccinations, and my smile is a nervous one, since I know that in a few short minutes, the child squirming in her mother's arms will hate me.

"The doctor sent me in to give your daughter her shots," I say.

"Yes, she told me. Can you give her some Tylenol too?" the mother asks.

"Oh, yes, I have some here for her." I give the baby some Tylenol, and already she's eyeing me with suspicion.

"Here's some information on the vaccines. Do you have any questions?" Sometimes I hope the parent will refuse the vaccines, just so I can be spared the trauma of administering them, but my trauma is nothing compared to the child's.

I ask the mother to lay the child on the exam table, and now the baby starts to cry because she knows that something unusual is about to happen. She can also probably pick up on Mom's fear and my tension, and by now the child is gripped with terror.

Giving four or more vaccines at a time is always a drag. First, if the child is already walking, we like to give the shots in the arm so that he or she will not be discouraged from walking due to pain, but those young deltoids are so small. If the child is not yet walking, we go for the large thigh muscles, but I'm no fool, and I know that even if they're given in the leg, these vaccines burn like a really bad bee sting, at best.

When I clean the baby's thigh with alcohol, she begins to scream. And I mean blood-curdling. My stress level is already probably high because we just had an 11-year-old autistic boy pinned down in another room in order to give him a shot and draw some blood. He was strong, and he pulled his mother's hair so hard I thought he would rip it from her scalp. The vaccine was fine, but we couldn't draw his blood since he moved so much.

Anyway, the baby is screaming, and I still hear echoes in my head from the caterwauling autistic boy. I steady my nerves, and I give the baby two painful injections in each thigh, about 1 or 2 inches apart. She screams some more, and I apologize profusely and hope that she won't be deathly afraid of men with goatees forever. Maybe she will.

This ogre business is truly awful, and I leave the room feeling bad. These Tuesday nights at the clinic are no fun, and with two pediatricians working, there's no escaping the old vaccine drill. I make a mental note to ask Mary to remind me not to work Tuesday nights anymore----Thursdays are so much more preferable with the lack of pedi providers.

There are just simply things that some nurses hate to do. For one, it's tracheostomy care. For another, it's wounds. For me, it's vaccines on little kids. I just hate being an ogre, and I'd give anything to lay that mantle down once and for all.

Mindfulness and Mindlessness

In this new iteration of my life, one of my most sincere areas of focus is the development of mindfulness, which Jon Kabat-Zinn simply describes as "knowing what you are doing while you are doing it". He also states that mindfulness "is cultivated by purposefully paying attention to things we ordinarily never give a moment's thought to. It is a systematic approach to developing new kinds of control and wisdom in our lives, based on our inner capacities for relaxation, paying attention, awareness, and insight."

Interestingly, when I began writing the previous paragraph, I rose from my chair in front of the computer to search for my copy of Full Catastrophe Living in order to find the quotes by Kabat-Zinn that I wanted to use. Apropos of the subject of mindfulness versus mindlessness, I ended up wandering all over the house to find where I had last left the book. This was a prime example of mindlessness in action a la Keith.

So, mindfulness can be about meditation, something I am now attempting to integrate into my daily life. But it truly is about so much more. As Mr. Kabat-Zinn so aptly states, it is indeed "knowing what you are doing while you are doing it." When I walk in the door of my house, I always try to be mindful about where I put my keys, my cell-phone and my other important belongings. I have a little wooden box where these things are supposed to live, and when they aren't there when I need them, I waste a great deal of energy on finding them---energy I could be using for more important things. The case of the missing book was very illustrative to me, and serves as a reminder of a continuing need for mindfulness in relation to both the physical, emotional, and psychological worlds.

One might say that mindfulness could be used as an excuse by a person with Obsessive-Compulsive Disorder to more sharply focus on their ritualistic behavior. While this is true, and while I do admit to a personal level of OCD, these two ways of being can be synthesized into a greater whole which serves the individual without pathological underpinnings. My goals are certainly above and beyond personal pathology, and my plan of self-care includes time for formal mindfulness practice, integration of mindfulness into my daily activities, as well as time to simply "be" without any plans or practices whatsoever.

This mindfulness stuff can be tiring and can sometimes feel like work. But once it is fully integrated, I hope that the "work" will be something that happens in the background without as much conscious effort, and mindlessness will become more and more an occasional blip on life's radar screen.

Afraid to Die and Barely Living

"I'm so scared to die." She lays in bed and barely looks at me.

"So, what's most scary to you?" I ask.

"I'm scared that I'll look dead, and they'll think I'm dead but I really won't be. Then they'll take me away and bury me alive. That's what I'm really scared of---being buried alive."

I take a deep breath.

"Well, first of all, I'm going to tell you something. One day, when you die---and we all die---they will make absolutely sure that you're dead. I promise. Now, what do you think they'll do when they take you to the funeral home?"

"They'll make me up and and comb my hair and dress me in the clothes my daughters give them."

"Well, yes, but I'm gonna take a risk here and tell you something that someone else wouldn't tell you. The only reason I'm doing this is because we know each other so well and we trust each other, right?" (She's my former patient and I've been sent to see her as a nurse consultant to assess her increasing anxiety.)

"Oh, yeah. I trust you more than Dr. __________. You can tell me anything." She sits up in bed a little, a sure sign that I have her attention.

"Well," I continue matter-of-factly. "The first thing they do in the funeral home is look over the death certificate and make sure that it's you on the table. Then they check over your body and make sure that you are absolutely dead." (I'm stretching the truth here a little, perhaps.) "Then they remove all of your blood and fill your veins with embalming fluid. Believe me, they would only do that when you're dead." (And no one could wake up after that, I think to myself.)

"So, they won't bury me alive?" she asks plaintively.

"No, I'm absolutely sure. Now that we have that settled, what's going on with this anxiety?"

"I don't know, I don't know. I just wake up in the night and I can't breathe, my chest hurts, I'm sweating, and only my daughter can calm me down and distract me. I call her on the phone---even in the middle of the night---and she talks to me. Or my youngest daughter who lives with me tries to get me to play some stupid game. It doesn't always work. I just feel like I'm gonna die."

"Do you have bad thoughts, or want to hurt yourself, or feel like someone's out to get you?"

"No, nothing like that. I just get so scared---sometimes even during the day, just like that!" She snaps her fingers in front of her face. "I've always been afraid of dying. Always."

"Are you afraid of the pain of dying? What scares you?"

"It's just that I'm scared. I can't explain it. I hope I'll go up there," she gestures towards the ceiling with her eyes, "but I'm not so sure."

"Oh, I can tell you for sure---you've raised all of these wonderful children and grandchildren for all these years. You're goin' to Heaven, my dear, no doubt about that. You can quote me on that one."

She smiles.

We review some simple breathing techniques and talk about psychotherapy. She's housebound, agoraphobic, morbidly obese. Finding a therapist to come to the house is almost impossible these days. Her family is frustrated, and she's just afraid of dying. Period. Well, we could take into consideration childhood trauma and the like, but who's counting. She has a panic disorder, plain and simple.

"You try those breathing techniques I taught you, and I'll make sure Dr. __________ thinks about giving you something that you can take when the attacks are really bad. OK?"

"OK. Thanks. I hope you can come over again some time, but I know you're not my nurse anymore."

"Yeah, you know I don't work there full-time anymore, but I'm coming in to help every week or so. If you need to see me again, I'll come by, OK?"

"OK. See you soon."

"Bye, darlin'."

And with that, the visit is over. She may die today, tomorrow, or in fifteen years. The only thing I'm sure of is that she won't be buried alive and she'll go to a Heaven made just for her. The rest is up for grabs.

A Visit

As a part-time visiting nurse, one often enters a home blind, without a notion of what will wait behind the door. Often, the outside will tell a story one tries to quickly decipher before even entering the home. And then the story unfolds.

As I approach the stoop, I notice a shopping cart filled with returnable bottles and cans to the left of the crumbling steps. I climb those steps and look into the yard to the left. Detritus of urban life litters what could have been a yard at one time: hub-caps, an eviscerated washing machine, the fenders of several cars, rotting lumber, moldy carpets. What looks like it may have been a cage for a few dogs now holds bag upon bag of trash. I hate to think how this will all smell in the summer heat.

I knock. I knock again. And again. I'd rather this person answer the door so she can get her meds and I can get paid for this visit. I knock yet again.

The door opens following a short period of undecipherable noise from inside. The room smells of stale cigarette smoke. I put my bag down on the table in what seems to be the cleanest spot. The young woman who sleepily opened the door says, "She'll be right there." I put my paperwork down on the table and I notice that it sticks to the wood. Hmmm.

There is yelling from the bedroom around the corner. "Why do these nurses come so early? I'm so tired!" I note that it's almost 9am and I should have been here at least 30 minutes ago.

"Is she OK? I ask. "I thought her regular nurse usually comes at 8."

"Oh, she just likes to complain." The young woman goes back up the stairs and I'm left to wait. A few minutes go by, and there is rustling and complaining from the other room as I ruminate on the other visits I still need to make.

"I'm coming, I'm coming," she yells, and enters the room in a bustle.

She smells of urine and maybe a hint of sweat and feces. I greet her warmly in both English and Spanish.

"Buenos dias, hello, how are you?" I smile. "Where's your med box and the paperwork?"

She opens a cabinet and produces the box and the all-important folder which any nurse who comes to the home can use to guide him or her as to what to accomplish during the visit. I have a secret piece of paper with the combination to her med box. She can't be trusted with her meds---like so many of our patients---so a locked box is kept in the home.

"Thanks." She smiles wanly and sticks her finger out so I can check her blood sugar with the glucometer on the table.

The machine beeps. "105. Muy bien," I say as I hand her some gauze to staunch the blood from her finger that I just pricked.

The visit is inconsequential as visits go. I am one more face, one more nurse who has come to check her sugar and blood pressure, administer her meds, and then be on my way. The fact that I speak Spanish seems not to impress her. She answers in English no matter what language I use. How tiring it must be to have a virtual stranger in her home each morning. What an imposition when one wishes only to sleep one's depression away. Her blank stare and flat affect belie her underlying mental illness, and I feel compassion for her even as I reel from the smell of urine that surrounds her. I wonder when the home health aide will visit her next, or if her family will make sure she bathes.

Not being a case manager has its rewards, and having relinquished the management of the intricacies of more than eighty people's lives, this momentary glimpse into a life on the edge of chaos reminds me why I so recently quit my full-time job. In my current position---covering for absent nurses and stopping in on patients who need a visit---there is no management, no follow-through. It is simply a visit and nothing more. It is a fleeting clinical glimpse, a hello and a goodbye, and I move on to the next.

At the Hospice

"There always is an answer," he says, as I spear some pasta bowties and hand him the fork. "I just don't know what it is." I hand him another forkful of food---chicken this time---and he eats it with relish, relinquishing the fork only when he has licked every bit of sauce from the four long prongs. His puzzled mind seizes on one thought, and then the fork and its contents become his universe once again.

I visit another patient in her room, not having seen her for several weeks. "So, what's new?" I ask, as I sit on the edge of the bed. "Nothing that's good," she replies with a sigh. "Can I get you anything?" She reaches out her hand. "Just some black coffee and ice water. That's all." She's lonely, but chooses solitude as her health continues to decline, staying in her room throughout the day and night. I bring her some smiles and coffee, and honor her desire for quiet.

Another patient, quite new to me, asks for little, and does so apologetically. "I don't want to hurt you or cause you pain," she says, "but I'd like to get out of bed." Such a request is always honored immediately, and we reassure her that we are in no way inconvenienced by her requests, large or small. She is so sweet, so frail and thin. Her family visits and they look at photographs of happy and healthy grandchildren. Last time I was here, this room held another who has since left this world. It's a revolving door where death is concerned.

One bed in the house is empty. The last time I was here, that room was the center of attention, with a confused and agitated young patient, a morphine pump, and a devoted family sitting vigil seven days a week. He has since died, and for me there was no time for goodbyes. But working as infrequently as I do here, every leavetaking is a potential goodbye, and we make the best of each opportunity to be kind.

As for my friend eating the bow-tie pasta, he is always looking for answers, but the tangled neurons in his brain insist that the answers elude him. But still, he finds the wherewithal to ask the questions.

Tonglen: Giving and Receiving

Of all the practices I know, the practice of Tonglen, Tibetan for “giving and receiving,” is one of the most useful and powerful. When you feel yourself locked in upon yourself, Tonglen opens you to the truth of the suffering of others; when your heart is blocked, it destroys those forces that are obstructing it; and when you feel estranged from the person who is in pain before you, or bitter or despairing, it helps you to find within yourself and then to reveal the loving, expansive radiance of your own true nature. No other practice I know is as effective in destroying the self-grasping, self-cherishing, self-absorption of the ego, which is the root of all our suffering and all hard-heartedness.

Put very simply, the Tonglen practice of giving and receiving is to take on the suffering and pain of others and give to them your happiness, well-being, and peace of mind.

---Sogyal Rinpoche

Sweet Relief and The Great Unknown

I am currently reveling in the reality of no longer being a case manager. Spending time in both my former workplace and in the visiting nurse agency where I work as a per diem nurse, I was clearly struck dumb with pleasure yesterday as I realized the reality of my new professional standing. Working in this manner, I feel completely in control of my work life, calling the shots each week and making decisions with my own best interests in mind. What sweet relief!

The down side of such a situation is that I am no longer in relationship with any of my former patients, and am processing some feelings about having "abandoned" some of them. Also, coming and going from the hospice only intermittently does not afford me much continuity, and from one shift to the next I am generally in the dark as to who has died and who is still in residence. Thirdly, as a per diem visiting nurse, I have no control over who I am assigned on any given day, and while surprise and novelty can be exhilarating, some modicum of normalcy and regularity may at times seems somewhat alluring.

Still, this nurse who has freed himself from relative captivity is a happy man, and no amount of money would get me back on the full-time horse any time soon.

Finding My Way

This new life of not working full-time presents many of its own unique challenges. When one does not simply need to report to work every day at the same time, then one must realize that a great deal of thought must be given as to what one is doing when. Juggling various employment responsibilities and home-based business ventures then becomes one's full-time job. The problem with not "punching a clock", as it were, is that the self-employed person must then make choices as to when one is actually "working". The temptation is to always be thinking about work, planning work, making up invoices, drumming up work, and otherwise focusing on it 24/7. If this is the case, then it begs the question, "So, what's better about this scenario, anyway?"

For myself, I'm finding that I actually need to start scheduling "down time" wherein I have nothing to do and in which I explicitly deny myself the ability to do anything work-related. This entails blocking out my calendar for periods of "doing nothing" and then taking the reins of those hours by choosing a self-care activity for that period of time. Whether it be reading, napping, drawing, going to a museum or listening to music, those hours must be used for self-care and healing, otherwise I will most certainly fill them with activity and busy-ness, eschewing self-care for "productivity".

Today, with back pain flaring and physical discomfort at the forefront of my mind, getting someone to cover my hospice shift for tomorrow was my paramount activity. Luckily, a thoughtful colleague took my shift and I will spend some time truly caring for myself tomorrow, and severe pain is something that simply screams "Healer, heal thyself."

With the physical pain has come some grieving that still needs to be processed from losses incurred these last few years. Perhaps as grief slowly heals and changes, the areas of my body that hold such severe pain will begin to release. Until then, self-care must be a constant focus, or leaving my full-time job to decrease stress will have been a wasted and fruitless effort, and that, I must say, would be inexcusable.

Calling All Nurses!

Call for Stories from Nurses

True-life stories from nurses who know

Kaplan Publishing, the #1 educational resource for nurses, is launching an exciting new
series of nonfiction books that share the stories behind the relationships, experiences, and issues nurses encounter on the job—whether they work in a hospital, clinic, home setting, hospice, private medical practice, or elsewhere.

These slice-of-life stories are written by nurses from all walks of life and provide
unique personal insights into powerful universal truths. Entertaining and educational,
inspirational and practical, each book will feature 20–25 true stories about the experiences and relationships that inspire and enrich the lives of nurses and all those who come into contact with them.

We are now accepting stories for the following anthologies:

REFLECTIONS ON DOCTORS
No one works more closely with doctors than nurses. What is it really like to work with
them? Share a story about an event that explores:
* A positive working relationship with a doctor
* Dealing with interns
* Power struggles
* Gender dynamics
* What you do if a doctor misses something or makes a mistake
* The challenge of public perceptions about nurses and doctors
Submission Deadline: February 15, 2008
Send stories to: nursesdoctors@gmail.com

FINAL MOMENTS: DEATH AND DYING
Experiencing the death of a patient is a rite of passage for most nurses. Share a story
about:
* Your first encounter with the death of a patient
* A patient who made a life-changing impression on you
* How you have dealt with grief
* The controversies of end-of-life decisions
* The challenges of caring for people as they die
* The harrowing experience of telling family members their loved one has died
Submission Deadline: March 1, 2008
Send stories to: nursesondeath@gmail.com

MEDITATIONS ON HOPE
So many people want to know how nurses do it. Share a life-defining or life-changing
story that explores:
* How you stay positive and focused
* How you maintain hope in the face of patients' suffering, or finding the silver
lining in a dark cloud
* Experiences that have brought you understanding and healing
* A patient, an event, or a day that buoyed your spirits or that required your greatest
reserve of strength
Submission Deadline: May 1, 2008
Send stories to: nursesonhope@gmail.com

GUIDELINES

Payment: $100 if published, along with a complimentary copy of the book.
Story length: 1,000–2,500 words
Point of view: First Person
Nonfiction: All stories must be true, previously unpublished stories from your personal
experience.
Tone: Inspiring, poignant, and, when appropriate, humorous.
Format: Microsoft Word, 12-point Times New Roman, double-spaced
Contact info: Each submission should include your name, address, phone number, and
email address.
Remember: Tell a story that has a beginning, middle, and end. Write from your heart
about a life-changing or life-defining experience. Be sure to make your story
rich by vividly painting the characters, the setting, and dialogue.

Due to the volume of submissions we receive, we cannot acknowledge receipt of submissions or provide status updates. If your story is selected for publication, you will be notified by e-mail. Manuscripts will not be returned. Authors may submit multiple stories for any of the three books.

Before final acceptance, you will receive an agreement that outlines the terms and conditions of publication. All manuscripts selected for publication will be subject to editing.

To Submit Your Story

Typed submissions are preferred, but we will accept a hand-written submission.

Each submission must include your contact information, including your full name, mailing address, phone number, and email address, if you have one.

Each submission also must include a story title and word count.

Electronic (emailed) submissions are preferred; mailed submissions are acceptable.

Email: In the subject line, cite the story title and the anthology for which the story is
intended. Type the story into the body of the email or send an attachment in
Microsoft Word. One submission per email.

Mail: You can send more than one story per envelope. Include one self-addressed,
postage-paid envelope for each submission. Send only the paper copy of the story; do
not send computer disks or CDs. Mail to:

Nurse Stories
Editorial Assistant
Kaplan Publishing
1 Liberty Plaza, 24th Floor
New York, NY 10006, USA

We cannot accept phone calls.

Family Caregivers Are Speaking Up

I was fascinated today while listening to a recent health-related interview on NPR's Fresh Air with Terry Gross. The subject of the interview was Suzanne Mintz, author of the new book, A Family Caregiver Speaks Up, and co-founder and president of the National Family Caregivers Association.

Ms. Mintz is the wife and caregiver of her husband, a man living with Multiple Sclerosis since 1974. Over the course of the interview, she recounts harrowing tales of hospital discharges devoid of planning, of caregiver burnout, of turning to neighbors in emergent circumstances to assist with transfers and other activities of daily living. Ms. Mintz laments the American healthcare system's apparent blindness to the acuity of patients as they are discharged to home with woefully unprepared families and caregivers shouldering the burdens of increasingly complex care.

The subtitle of Mintz's book, "It Doesn't Have to Be This Hard", speaks to the fact that Mintz is a caregiver who cares about other caregivers, and has penned a book with the goal of providing resources and empowerment to those responsible for the care of loved ones living at home. Additionally, The National Family Caregivers Association appears to offer resources, connection, Pen Pal programs, advocacy, volunteers, workshops, trainings, and much more to the tens of millions of Americans who choose to care for their loved ones in this Herculean manner.

During the course of the interview, Mintz lamented the lack of seasoned professionals who can coordinate the care of chronically ill patients and provide support and resources to families. Having recently left my job with a Disability Care Coordination Organization (DCCO), I would like to know what experiences Ms. Mintz and her organization have had with DCCOs---if any---and how her organization and various DCCOs could partner with state and federal government to improve care management programs, and to increase access to such programs for families across the country.

Providing care for a chronically ill loved one at home is no small undertaking these days, and while sick family members were generally cared for at home throughout the early twentieth century, doing so in this current economic climate has become next to impossible for so many families. Hard evidence is available that the majority of home foreclosures and bankruptcies in this country are not caused by frivolous spending and credit card use on the part of homeowners. People in this country are losing their homes due to the high cost of healthcare and from losing their jobs and careers due to illness. Astronomical medical costs, a sour economy, a pharmaceutical industry run amok in the halls of Congress, and a healthcare system driven by profit and market forces have all contributed to untold suffering for patients and caregivers alike. It is a sad state of affairs, and heroic people like Mintz are working hard to assuage that suffering, one family at a time.

When Cancer Spreads Its Wings

Cancer insidiously spreads itself into remote corners of the body, with greedy fingers reaching out where it is most unwanted. With unmatched stealth, it manages to send pieces of itself to distant organs through avenues of lymph or blood. And strangely enough, even if the cancer originated in the lungs, any distant metastasis will always show microscopic signs of its organ of origin if a scientist or doctor cares to check. So, if a brain cancer eventually lodges itself into the femur or spine, there are cellular markers that will actually brand that metastasis as originating in the brain. It's like a postmark by the cancer post office which delivers nauseating information of its original port of entry.

As the cancer nudges its way into various body systems and organs, it chokes off blood supply lines, interrupts normal metabolic activity, and insinuates itself in places where it is wholly unwelcome. Once it invades an area, the tumor will then begin to grow its own blood vessels, co-opting a nourishing blood supply for its own devices. Deprived of adequate circulation of blood, important organs or tissues become compromised and begin to malfunction or die. Chain reactions of metabolic chaos are set off, and delicate biological balances begin to be altered. At a certain point, there is no turning back, and the body begins an inexorable decline.

If treatment is chosen, the damage done by both chemotherapy and radiation can often exacerbate previous symptoms or create new ones. Radiation can permanently damage certain tissues which happen to be in the way of the treatment, and chemotherapy is wholly nonselective in which cells it destroys. For this reason, hair and other fast-growing cells are killed, including the lining of the gastrointestinal tract. Many cancer patients will say that the effects of the treatment are worse than the disease. An ironic reality.

When a patient comes to hospice, no further treatments are planned, and the disease is left to run its natural course. Left to its own devices, cancer spreads its wings and lodges in brain, bone, liver, lung---almost anywhere. And while certain cancers have a predilection for metastasizing to certain distant lands, it will also simply begin to work its way into locally adjacent sites, pushing through tissue, breaking down walls, filling up cavities, destroying connective tissue. If the cancer is in a visceral organ like the pancreas, it will choke off vital blood vessels and take up more and more space in a crowded abdominal cavity. Back pain, nausea, and radiation of pain to the flank will only add insult to injury as the cancer slowly takes over more and more bodily real estate. Running amok, symptom management and alleviation of suffering become the only goal.

As the patient nears the end, all medications are stopped which do not directly treat specific symptoms related to the cancer or its effects. Eventually, much to a family's dismay, medications for underlying chronic disorders (like thyroid diseases or diabetes, for instance) will simply be discontinued. Just as the cancer is allowed to run its course, other underlying conditions are allowed to simply coexist with the cancer, and the management of symptoms and the alleviation of pain and suffering hold sway as the laser beam focus of care.

As a clinician or a family member, this decline of the body as it is taken over by unwanted forces is difficult to witness. Family members and friends may face denial, anger, or any number of reactions as their loved one declines before their eyes. With any luck, skilled clinicians can provide the emotional, psychological and spiritual support which is so needed at this pivotal time. Clergy and other members of the care team can also provide additional support as the situation spirals inexorably towards death.

Countless patients and families experience this series of battles and maddening losses when cancer moves to a stage beyond treatment or cure. With physical illness comes loss of independence, mental decline, spiritual questioning, and psycho-emotional changes. When hope of a cure has vanished, then hope for peace and freedom from suffering become the focus, and a thoughtful hospice team will treat the family as skilfully as it treats the dying patient.

Many of us have walked this road with a loved one or known someone who has. Cancer somehow seems to touch a majority of families, either by direct experience or at least by association. In my own family, every man on my father's and mother's side seems to have died from cancer, and my step-father succumbed to pancreatic cancer less than five months ago.

I have known cancer intimately in my personal life and my professional life, and while it is an acquaintance I don't covet, it is one which has brought me deeper knowledge of the human condition beyond anything I could ever have imagined. Without a doubt, even more learning will ensue as I work in a hospice setting, but also simply from being a human being in relation to other human beings who are facing illness and the certainty of death.

To anyone who has lived through the loss of a loved one to cancer, I offer my sincerest condolences, my prayers for your healing, my prayers for your loved one's soul, and my hopes that your life and family will be further spared unnecessary suffering. In the face of loss and death, we all must face our own mortality and spiritual pain, and I wish you, dear Reader, strength and peace in your own travels down this often turbulent and troubling path of human existence. Namaste.

Of Hospice and Free Agency

Life as a (per diem) hospice nurse has certainly altered what (some of) my workdays can be like. Instead of answering to the unending demands of more than eighty needy patients as a care manager, I now answer to the rather predictable needs of no more than six residential patients.

What is unusual about my hospice work is that, during any given shift, one nurse and one home health aide must not only provide direct care to six patients in varying states of illness, including medications, bathing, treatments, dressings, and toileting. We are also responsible for preparing meals, cleaning up after meals, feeding patients who need to be fed, doing laundry, answering phones, taking out trash and recycling, and doing general housekeeping. If it sounds like a lot, it is, and I often feel that I am torn in a dozen directions at once.

Just today, in the midst of tending to a patient's lacerations from an early morning fall and calling the medical director about orders, we were toileting patients, passing medications, answering call bells, preparing breakfast, and thinking about how to begin preparing for lunch as we cleaned up from the maelstrom of breakfast. Phew! With several patients who are at risk for falls, and several who may be entering the final stages of life, meal preparation can sometimes seem like the last thing one wants to think about. But it must be done, nonetheless.

Still, as a workplace wherein I come and go, it is still a relief to simply do just that---come and go. The benefits of not being full-time anywhere are still making themselves known. For now, I revel in the fact that there is nowhere I report to day in and day out. And that free agency is a blessing beyond measure.