Friday, September 28, 2007
Resilience is defined on Wikipedia as "the ability to recover from (or to resist being affected by) some shock, insult, or disturbance". In my case, and in the case of many others who walk this troubled planet, resilience is a skill or quality which cannot be taken for granted. Our American culture seems to be built upon values of positivity and self-reliance, as well as the innate ability to "pull yourself up by the bootstraps". Consequently, depression and mental illness, as well as the slow recovery from "some shock, insult, or disturbance" are often seen as character flaws and are frowned upon as a sign of personal weakness. Oh that it were so simple.
For those of us for whom mental illness (and I do not use that term lightly) is a lifelong struggle, recovering and moving through grief or personal tragedy can be inordinately slow and arduous. Support and patience from our friends, family and colleagues is of the utmost importance. Beyond the care and succor of others, what is most crucial is the gentleness of quiet and consistent self-care.
Many of my patients lack the benefit of strong personal resilience. This commonality which we share is perhaps the reason why my compassion for suffering runs so deep, but also perhaps why my well of compassion can sometimes run dry. When there is suffering both within and without, emotional fatigue may become the order of the day. Today I pray for resiliency and gentleness, and the ability to nurture them both.
Thursday, September 27, 2007
Take mental health, for example. For our Medicaid patients, there is a small handful of behavioral health agencies which accept new patients. Most of these agencies have long waiting lists, and our patients in crisis often go without mental health services at the time that they truly need them. Due to the backlog of needy individuals, the local psychiatric emergency service is reknowned for turning away even the most blatantly suicidal patients. In a broken system, broken clients are served by broken clinicians employed by broken agencies which limp along on poor funding and frequent mismanagement. Sometimes, the streets seem to be teeming with the Walking Wounded, and we well-meaning clinicians who truly want to make a difference wring our hands in desperate impotence.
One of my patients desperately needs mental health treatment. This person would like to undergo treatment with Interferon and Ribavarin for chronic Hepatitis C, but the Interferon can cause debilitating depression and suicidality, thus, before beginning Interferon, the client must establish a relationship with a mental health professional. Unfortunately, there is at least a three-month wait for a mental health intake appointment. Following the intake, it could be another month or two before the client finally sits down with a new therapist. When it comes to seeing a psychiatrist or Clinical Nurse Specialist who can prescribe psychotropic medications, it may be another four months for that appointment. Sadly, due to our patients' frequently chaotic lives, missed appointments are all to common. If one too many appointments is missed, the client is put back on a waiting list and left to their own (often suboptimal) devices.
A broken city simply cannot provide a strong enough safety net for its neediest citizens, and our little city often falls flat on its face vis-a-vis this ultimate responsibility. Be it mental health, environmental safety, public safety, transportation, substance abuse treatment or housing, many American cities fall far short of what they should be able to provide. With billions spent to support a seemingly pointless (and endless) War on Terror, where even returning veterans with PTSD are left out in the cold, our cities struggle to meet even the most minimal of their responsibilities.
Here in the trenches of human service, we cling to whatever lifeboats we can find, as do our clients. At times, we succeed in saving those in our care. At other times, we watch as our unfortunate charges slip away on the currents of social problems too large for us to tackle alone. Occasionally, the vicious undertoe will obliterate a client, and we face our failures alone on the shore. In this Little City That Couldn't, each day is another opportunity for success or failure, and we simply accept that both potential outcomes are part and parcel of the day to day struggle.
Monday, September 24, 2007
"Yeah," he replies. "I felt so sick. They sent me home after a while, though."
"Do you know that your urine came out positive for cocaine and alcohol?"
"Well, yeah. Let me be truthful," he replied. "I was in New York with my cousin, I was stressed out, and I did some cocaine. No lies, OK? Urine tests don't lie, and if I lie to you, I'm really just lying to myself, right?"
I took a deep breath. "Yes, that's right. Now, the other problem is that your urine came back negative for opiates. We've been prescribing you morphine for pain, and your urine should be positive for morphine. What happened there?"
"OK, OK. Like I said, I was in New York and forgot to bring my morphine. That led to me stressing out and doing the coke and alcohol. I know you're not gonna trust me now. I'll do any urine test you want, any day you want. I want to earn your trust back." He was pleading now.
"You just have to understand," I explained. "When we prescribe you morphine, we expect to see it in your urine. When your urine comes back negative for morphine and positive for cocaine, what do you think we suspect that you're doing with the morphine?"
"Selling it on the street to buy cocaine?" he answered faintly.
"Exactly! And that's a big no-no in our book, I'm afraid." I pause for effect. "The last thing a doctor wants is the medication he prescribes to end up being sold at the bus station, and believe me, alot of what we prescribe IS sold at the bus station."
He was worried now. "Look, I'm so sorry. I'll do whatever you want, but you can't cut my morphine off. My pain is still so bad. Tell Dr. ___________ that he can order any tests he wants. Please."
"Don't worry, we're not cutting you off yet. That would be cruel. But you've got work to do." I continued my diatribe. "There will certainly be urine tests, but they'll be random. And you can't say you can't make it when we call you to come down to the clinic. You signed a pain contract, so now you have to honor it."
"OK, OK. I'll do it. Tell the doctor I'll do it. I'll show you that this was a one-time thing."
"OK, just relax, and we'll talk to you soon. And stay out of trouble, y'hear?"
"Yeah. I'll talk to you soon." He hung up first.
I hung up the phone and took a deep breath. I hate these conversations. I also hate dealing with narcotics. I hate the whole system. Pain management is a total drag for the tired Nurse Care Manager, and narcotic diversion onto the streets haunts us daily. These are the times I play Good Cop/Bad Cop, and it's no fun for anyone, including me.
Was he telling the truth? Can I trust him? Will his subsequent toxicology screens be negative? My sense of hope and faith say yes, but only time (and urine) will tell.
Friday, September 21, 2007
Tuesday, September 18, 2007
I am painfully aware that the last several weeks' blog entries have all focused on my step-father's dying process and my subsequent grieving. While this blog is generally a "nursing blog", I have injected it with a great deal of my own personal journey with chronic pain, depression, and Multiple Chemical Sensitivity over the years. If all of this grieving is tiresome to some readers, please know that grief is not forever (thankfully), and more front-line nursing stories and patient anecdotes will be forthcoming.
Thank you for bearing with me through this experience, and please stay tuned for our regularly scheduled blog.
Monday, September 17, 2007
Stroke, stroke. Grieving is like swimming through water which sometimes seems syrupy thick, and at others more like a gauzy film.
Stroke, stroke. The resistance I feel against my body as I swim is like the resistance I feel to the emotions which continue to well up at inopportune times.
Stroke, stroke. Around lap number eight, my goggles fog up and my vision is murky at best, just as my mental vision has been subsumed at times by the powers of grief.
Rest. The exertion of swimming becomes overwhelming, and I tire around lap nine. I take a respite, just as one must from the tiresome exertion of grieving.
Stroke. The pool is representative of the well of emotion one must experience through this process of loss and recovery of self.
Stroke, stroke. I continue along my trajectory, but now my arms feel leaden, like the water is actually made of sand. Grief can make life feel this way---heavy, thick, almost impossible to wade through without exhaustion.
Rest again. The water now feels like a protective cloak, and my body can also revel in its enveloping softness.
Stroke. I push through the resistance, overcome inertia, just long enough to accomplish a small earthly task.
Can grieving end with such certainty? Does one just exit the pool, towel off, and head for home? Certainly not, for better or for worse. And the swimming has only just begun.
Saturday, September 15, 2007
Returning to work after a three-week absence to tend to my step-father's dying process and death, I gingerly returned to work and was immediately dizzied by the frantic comings and goings of my colleagues. Standing in the office on my first day back to work, it seemed as if I was a reluctant swimmer poised on the edge of a raging river, considering touching my toe to the water yet highly aware that the undertow would drag me under at my first sign of surrender to its horizontal power.
Of course, my compassionate colleagues welcomed me with hugs and kisses and offers of assistance. Several individuals went out of their way by offering concrete tasks which they could shoulder: filling med boxes for my more dependent patients, making phone calls I was reluctant to place. Still, as I sat at my desk, the cobwebs of absence began to clear, and the onrush of details needing attention quickly filled my brain which until that moment had been busy with other processes of a more personal nature.
Stepping (however reluctantly) into the rapids of the workplace, I realized quite readily that my colleagues' stress and my patients' neediness neither lessened nor took a break while I was otherwise engaged with family. Our "disability care management" office is without a doubt a rushing rapid of information and nursing care which has a laudable goal of keeping the most disabled and chronically ill inner-city patients aligned with the overarching pursuit of preventive health, self-care, and crisis management. In pursuit of that goal, we nurses, nurse practitioners, and medical assistants bend over backwards, often pulling out our hair in order to deliver the quality care which we see as necessary to the well-being of our patients. That said, in order to accomplish this goal, it seems widely accepted that our workplace must function like a battleship at full bore, the ammunition (of health) at the ready, and the crew in a constant state of hypervigilant combat against disability, addiction, disease, and poverty. In delivering such care, the caregivers wear themselves pretty thin.
So, in walks the bereaved nurse, fresh from a parent's illness and ultimate death, still reeling with emotion and saturated with stories of my own family's newest evolution. At 9:00 on Monday morning, I again took on the yoke of the needs of more than eighty people, fifty of whom consider me their first line of defense for most any situation related to their health and well-being. And a yoke it seems.
For more than two weeks, the travails of my patients (and my colleagues who cared for them in my absence) were shadows which would flit across my consciousness, yet danced on the periphery of my mind. With the care of my step-father and coordination of his own care team as a top priority, the worries of the workplace slowly sank to the bottom of my cognitive well. However, even as my enfeebled brain again made attempts to grasp the enormity of the task before me, this first week back was an enormous challenge, and the journey from Monday to Friday seemed at first Herculean, but ultimately felt most Sisyphean.
The boulder is now at rest during this blessed weekend, balanced delicately on my desk some twenty-one miles from our home, patiently awaiting my return. Come Monday, it will again be time to shoulder that burden, and also to continue to seek ways which will decrease said burden's impact on my physical health, grieving process, and emotional well-being.
Yes, the reentry is difficult. When the Space Shuttle is reentering the earth's orbit, the fires of the atmosphere will put the Shuttle's outer layer of protective skin to the ultimate test. That skin is all that protects the astronauts within from the searing and destructive heat of the earth's gaseous envelope. And so for me, my emotional "skin" is what similarly protects me from the vicissitudes of nursing practice, the double (and at times paradoxical) challenge of embodying the noble goal of self-care while I deliver care to others in need.
This Saturday evening, I am grateful for the weekend, for the winds of late summer, for the fickle September weather, for the peace that home affords, for the love that buoys me in times of trouble. I also give thanks for the skin which protects me from the elements, be they emotional or physical in nature.
Dying is hard work, but the dying person is eventually (and thankfully) released from that process, moving beyond all notions of corporeal suffering. But here on earth, the grieving must release themselves from their suffering, all the while maintaining the activities which keep home and hearth upright and functional. And here is the challenge: grieve, move beyond the loss, enter a new relationship with the dead, and embrace life anew.
Thursday, September 13, 2007
I am honored and humbled by being included in this list of excellent nurse bloggers, and it is moments like these that remind me that there are actually real people out there reading blogs, feeding this technological revolution in communication and connectivity. Blogging can often feel like a lonely venture, with few comments to bolster the blogger who sends missives out into the ethers in hopes of connection and readership. Thanks to all who read Digital Doorway, and please continue to support bloggers by visiting their sites and letting them know you're out there. And thanks again for visiting. After all, without readers, blogs are just more digital noise.
Wednesday, September 12, 2007
Many of us are aware of the five classic "stages" of the grieving process: denial, anger, depression, bargaining, acceptance. But nothing is ever so cut and dry, and our emotional lives are varied and complex. For me, in this moment, there are various layers of exhaustion coloring my experience, my body slowly coming into some semblance of equilibrium. Powers of concentration and focus remain relatively unreliable, but hints of the balanced self peek through the haze. Patience is a virtue at this stage, both with others and one's self.
Grief comes in many guises, and it manifests in so many ways throughout the day. Circumspect self-care and self-awareness seem to be the best tools at my disposal. But the first step in using those tools is at least opening the tool-box. As Sogyal Rinpoche has said, "Our present condition, if we use it skillfully and with wisdom, can be an inspiration to free ourselves from the bondage of suffering."
Monday, September 10, 2007
So, now for the work of grieving. The hourly pay is poor, but the dividends will be worth every moment invested. Remember, "unshed tears will make other organs weep."
Sunday, September 09, 2007
Today we avoided a neighborhood picnic, lacking all motivation for superficial conversation and pleasantries. At the supermarket, we ducked in order to not encounter someone who we knew would only drain us with her narcissism. Tomorrow, I work from home, and Mary enjoys one more day of bereavement leave. Tuesday, we re-enter the proverbial rat-race, even as we continue to feel like we're still in a parallel universe, the Universe of the Grieving.
This special universe is inhabited by many, and even as some of us lose sight of it as we become enshrouded in the everyday world once more, a part of our heart remains in the Universe of the Grieving, holding the memories of our departed loved one in a special and tender place.
Pieces of my soul dwell permanently in the Universe of the Grieving, holding a spirit candle for my beloveds who have since left this earthly plane. The candle I burn for my step-dad glows most brightly, having only recently been lit. Some day another beloved's candle will be the newest one to grace my spirit altar, but for now his soul occupies the center of that most sacred space, and I send love and light to him as he claims his most righteous prize.
Friday, September 07, 2007
Once in my car, I sat in the driver's seat and hugged that box to my chest, breathing quietly, feeling its weight in my lap. When I was ready, I placed the box gingerly on the passenger seat, and began to drive back towards my mother's house, where I would deliver her beloved husband's remains into her trembling hands. During that ride, I rested my right hand on top of the little box, just as I might rest my hand on my son's shoulder.
About half-way home, I realized that I was carefully avoiding bumps and pot-holes, gingerly taking turns, as if a fragile and easily damaged cargo sat beside me. Perhaps that fragile cargo was actually my own heart, heavy with grief, relieved that his suffering was over, and worried for my mother's future and well-being. Carrying those ashes was like being a solitary pall-bearer, shouldering a container whose contents were undeniably heavy, but whose ultimate goal was lightness and the shedding of the physical body's weight.
Resting that box on the piano in the living room after everyone had a chance to feel its weight, it was so very apparent that he is not actually in that box. What is in that box is simply the remains of a body, a vessel, a vehicle that propelled that soul through this life for eighty years. That soul, that spirit, is now free, roaming a world of which we can only dream. Blessings on that soul, even as the ashes and dust and bone fragments which remain with us are scattered to the winds of the earth.
Tomorrow, we celebrate that soul's accomplishments and that body's life on earth. And then we move on without him at our side, but with him always in our hearts.
Thursday, September 06, 2007
Bereavement can force you to look at your life directly, compelling you to find a purpose in it where there may not have been one before. When suddenly you find yourself alone after the death of someone you love, it can feel as if you are being given a new life and are being asked: “What will you do with this life? And why do you wish to continue living?”
My heartfelt advice to those in the depths of grief and despair after losing someone they dearly loved is to pray for help and strength and grace. Pray that you will survive and discover the richest possible meaning to the new life you now find yourself in. Be vulnerable and receptive, be courageous and patient. Above all, look into your life to find ways of sharing your love more deeply with others now.
Tuesday, September 04, 2007
Once the body has been removed from the home and the hospital bed and other equipment as well, one must take stock of the space where the loved one lived and died, and accept that their physical presence in that space is now a thing of the past.
Next come the personal effects. A watch. A money clip. A ring. A necklace. The trousers hang in the closet, pockets still filled with the normal flotsam and jetsam of a life: wallet, keys, change, mints, candies usually carried for bank tellers and cashiers in stores, a handkerchief.
And then there are the clothes that hang in the closet, bereft of the body which once filled them. The shirts pine for a beating heart. The pants wish for legs to crease and bend them. The socks sit alone alongside the underwear and undershirts. The ties and belts dangle sadly like plants in a hanging garden. But a new life awaits them.
Food begins to arrive from caring friends and family. The phone is rarely at rest. Arrangements are made, and plans created. Activity is a welcome relief from the heaviness of mourning, yet too much activity can also preclude one's feelings being actively felt.
On the physical side, one must ask simple questions. Are you eating? Are you hydrating? Can you sleep? Would exercise be a benefit to you now? A fine balance must be struck, whether it be emotionally, physically or spiritually. You walk a tightrope of emotional balance, and living friends and family offer guiding hands along the way.
Laughter, smiles, moments alone, moments in motion, the awareness of loss---they are all part and parcel of the unfolding of the days of mourning.
Monday, September 03, 2007
Just as it happens around the world at every hour under the sun, people came and went from my parents' home over these last days, and we all played our parts in the unfolding drama according to our individual roles and skills. My step-father's lovely daughters, sons-in-law, granddaughter, and great-grandchildren all added to the quality of the times shared under this roof, and his final days were filled with loving visits and calming energy. One visitor, a Stephen Minister by vocation, remarked that Spirit was "just pouring through the house", and he praised our little home hospice with words of benediction.
Losing myself in the minutiae of my step-dad's hourly care, I realized that my grieving process was being (somewhat necessarily) truncated by my self-imposed duties of conductor, coordinator, choreographer, and caregiver. Even as others found moments to cry, my reservoir was seemingly dry. But when the moment came and he took his final breath, we all huddled around the bed, and the tears and sobs came in torrents, releasing days of unexpressed stress and grief. It is said that "unshed tears will make other organs weep". I wrung some organs dry today, so to speak, and now I can sleep the rest of the exhausted along with the rest of our family.
His death was a fine one, navigated with grace, dignity, and a collective benevolence of spirit. Now we can be certain that our dear loved one is winging his way to a place of deserved beauty and peace, and our efforts here on Earth sent him with enormous love to fuel his journey.
Sunday, September 02, 2007
Today, September 2nd, 2007, at approximately 1pm, Sparkey will be dead one year. His body still rests in the earth just beside our house, but his spirit body moves in an entirely different dimension.
Even as we celebrate his life and honor the 12-month anniversary of his passing, we sit vigil here in New Jersey, comforting my beloved step-father as he moves into the final stages of the dying process himself. The details of Sparkey's passage are fresh in my mind, and at this time (10am) on September 2nd of last year, we were enjoying what we knew would be our final morning and afternoon on earth with our wonderful canine companion. It was a day of final events: the last walk, the last meal, the final treats from the mail carrier, loving visits from the neighbors, Sparkey bestowing a final kiss to a small child's face (our neighbors' newborn). And then, before we could catch our breath, the vet came, we administered the medications, and he died, crying a final tear from his left eye as we kissed him and told him how loved and lovely he truly was.
Now, on this very day, we watch as my step-father's breathing becomes erratic, with 5-second periods of apnea (the absence of breathing), followed by a succession of rapid breaths once again. Hints of a minimal rattle in the throat make themselves known from time to time, yet he then breathes normally again. There will be no doctor visiting today to administer a dose of medicine to end his struggle, to assuage his suffering. In our culture, our dogs' and cats' suffering is painlessly ended when it is seen to be the most humane act we can perform; yet our suffering human loved ones, whose quality of life has long since diminished to less than a shadow of its former self, must struggle and gasp until the end. Morphine assists the process and depresses respiration, but Tulane will not experience the sudden and painless release that Sparkey was so blessed to receive.
Speaking of Sparkey and Tulane, Sparkey has now visited Tulane twice over the last few months, the most recent visit being only several days ago. When my mother and my wife and I were finishing a conversation around Tulane's bed early last week, Tulane said, "I didn't want to interrupt your conversation, but Sparkey was just here. He came through the window and stood by my bed, looking at me, smiling and panting, and wagging his tail furiously." (We all noted that there was a chocolate-chip cookie on the bedside table and Sparkey may have been eying it from across the veil.) Tulane seemed very pleased by this visit, as he did by a similar visit several months ago when Sparkey entered through the closed front door and curled around Tulane's legs under the kitchen table. With each visit, Tulane describes being able to smell Sparkey in the air, and to smell him on his hand after petting his head, long after our favorite golden dog had left the scene.
So, we await Tulane's death, midwifing him through the process, even as we recognize and celebrate Sparkey's anniversary. It is a significant day in our lives, and its importance informs our every waking (and sleeping) moment.
Happy un-Birthday Sparkey! May you run and play and rest in a peaceful and wonderful world, and may you welcome Tulane when he is ready to join you there. We love you, Sparkey!
Saturday, September 01, 2007
Loss often visits us at the most inconvenient times. We lose our job just as our child is starting college. Our car breaks down the day before we leave for vacation. A new diagnosis throws us into a medical tailspin. Depression rears its challenging head and we are derailed from our usual emotional composure. A sudden and unexpected expense drains our resources and we are financially drained almost overnight. Change---when unplanned---is certainly most inconvenient---with illness and death perhaps being the most unwanted changes of all.
How do we cope with change, especially that which is inherently unwanted and unsolicited? We read books which purport to assist the reader with such transitions in life. Bookstore shelves overflow with self-help books of all stripes, and Americans purchase scores of them, myself included. The Bible offers great comfort to many in times of change and challenge, and millions look towards its wisdom for both comfort and strength of spirit. Most recently, I have turned to several books, including When Things Fall Apart: Heart Advice for Difficult Times by Pema Chodron. While it is a Buddhist text, its message is universal and digestible by seekers of any faith.
How else do we cope with change? Psychotherapy, counseling, the church, the shoulder of a friend, alcohol and drugs, food, exercise, sleep, anger, television, denial, resistance---these are all places to which we turn, some obviously healthier than others. We encourage one another to turn to that which is nurturing and healthy, that which will add positively to our personal arsenal of coping mechanisms. Some become lost in addiction, others become lost in meaningless action---"filling time" without really living it. No one ever said it would be easy, and when we are in the thick of it, we realize that this alleged lack of ease is altogether true.
For myself, as I live through perhaps the most difficult time of my life so far---the impending death of a terminally ill parent---I strive to reach for that which is healthy and nurturing. When my best friend was murdered in 2001, post-traumatic stress took its toll, and recovery was slow and painful. An unexpected loss of that magnitude shook the foundations of my world in a way that was both shocking and painful. Now, I face this slow and incremental loss, and its impact---while no less enormous than the loss of my friend---is somewhat mitigated by the ability to begin preparing, to say goodbye, to come to terms, to accept that which is inevitable and unavoidable.
Heraclitus said "everything flows, nothing stands still. Nothing endures but change." This is a lesson which I strive to keep in mind as the winds of change, loss, and death buffet our family's ship. It is all we can do to hold onto the rails and ride the waves as they toss us about. Otherwise, we are thrown into the sea of uncertainty and groundless fear, where we are more likely to lose our way and be lost. And so, we cling to one another and to the ship of family and community, riding the swells until the sea is calm once more.