Sunday, March 25, 2012

frailty: gains and losses


 Working with the elderly gives a whole new definition and many, many faces to the idea of frailty.  Old age comes to all of us, of course (unless we die of something else first), and I knew intellectually that it often and eventually involved losses - loss of independence, loss of memory, loss of strength, loss of friends or family.  But it's one thing to know it in my head and another to encounter it in patient after patient, as I do on my geriatrics rotation.


One particular patient sticks with me.  She was an older woman with Parkinson's disease.  Most patients with Parkinson's develop dementia along with the physical neuromuscular parts of the disease.  She, however, had not.  She was fully aware that her body was no longer working as it should, that her face didn't move with its former expressivity, that her limbs were harder to move out of a single location than they used to be.  She felt like she was turning into stone.  She expressed regret for having walked regularly as a younger person to have a good heart given a family history of heart disease.  At this point, she said, she wished she did not have such a good heart.  Her grief at her losses was clearly apparent, and we were helpless beyond her current medications to do much to slow further losses.  (But telling the story and her words calls to mind this vision of Aslan blowing on stone statues and seeing them turn from cold gray to warm color and then regain progressive movement and function.  Maybe that's what heaven will be like for this woman.)   


The various Alzheimer's patients also stick with me.  Often unaware of their decline, they are at least spared the humiliation and frustration of the losses they experience.  However as an outside observer, it is sobering to remember that this sort of decline could and may happen to me some day years in the future.  I, too, may not recognize my spouse who lives in the dementia unit with me.  I, too, may be blissfully unaware of the fact that I am no longer a child who lives at home with her parents and that the stuffed animal I carry is not in fact a live pet.  The encounters can make for good stories, but the sobering reality is that these older adults have lost much of what I often think makes my life worthwhile.


It is not only losses, however, that old age brings.  I am reminded of this by looking at the old people in my own life, especially my grandparents.  It also brings wisdom and perspective, a patience born of seeing God's work and faithfulness over a lifetime.  It can carry the joy of family and grandchildren, celebrations of new life and the legacy represented in one's family.  It often provides time, time for worship and prayer, time for playing games with a spouse, time for enjoying old hobbies, time for volunteering or sharing with neighbors, time to catch up with family, time to make new friends and reconnect with old ones.


The whole thing reminds me of a passage in John 21, where Jesus goes to find his disciples after his resurrection.  They have gone back to their life before meeting him, fishing (albeit unsuccessfully) on the Sea of Galilee.  He miraculously provides them with an abundant catch and then feeds them on the beach, recalling their last meal with him before his death.  Afterwards, he takes Peter aside and asks him three times (recalling Peter's three denials) whether he loves him, questioning whether in the anguished aftermath of his betrayal (cf. Lk. 22:62) Peter has learned more of what it means to love and follow Jesus.  Peter insists that he does love him, and Jesus asks him to feed and care for his sheep, adding that when he is old, "you will stretch out your hands, and someone else will dress you and lead you where you do not want to go" (v. 18b).  The writer of John comments that this was meant to indicate the type of death Peter would suffer, arms stretched out on a cross upside down and led (tied) to a cross with cords of rope.


The passage illustrates Peter's transition from an easy commitment to loyalty in following Jesus to a deeper understanding of what a life lived in service to others (feed my sheep) and full surrender to Jesus' plan may mean (including a cross and going where one may not want to go).  It seems to me that this is part of the cost of growing old as well.  Increasing frailty requires a willingness to go where one doesn't want to go (sickness, dependence on others, admitting our vulnerability and mortality).  It requires an ongoing surrender to the plan of the Father and an increasing trust as our own lack of control becomes more and more evident.  Many of the older adults in my life have shown an ability to manage the changes of age gracefully, and I think part of the secret may lie in the overlap between the spiritual life's surrender and requisite admission of need for help and direction with the changes that the slowing down and weakening of one's physical body force upon us.  


In her book Revelations of a Single Woman, Connally Gilliam speaks about her fear of ending up a withered old woman as a result of not "getting it," questioning as a celibate single the role of sexual fulfillment in keeping one alive.  She found in the midst of her fears instead that it wasn't "what someone is not getting that matters, it's what he or she is giving" [of him- or herself].  The older adults in my life who most shine with life are not necessarily the ones with the best mobility or the sharpest memory or the most independence.  They are the ones who give of themselves unselfishly, sharing their stories and lessons and God's abiding presence.  They are the ones who teach me how to live and how to age and eventually how to die.  They are the living illustrations of how losing one's life may be the very best way of finding the life which is truly life.


Old Happy Man

Sunday, March 18, 2012

*hug*

Sometimes I feel like I blog about all the hard parts of medicine, the stories that wrench my heart and my struggles to know what to offer in the face of suffering.  Those people stay vividly with me, certainly, but they are not the sum total of my life in medicine.  It includes glimpses of loveliness and light as well as grief and regret.  This is a post to recount one of the former stories.

One particularly hard afternoon when I was on the inpatient (hospital) service a few months ago, I found myself in the ICU.  I had just been seeing one of the sadder patients on our service in the ICU, who was essentially paralyzed but totally conscious.  Our best medical treatments had done little for him, and he had little family or friends nearby and so had been paralyzed, awake, and on the ventilator alone without any visitors and unable to communicate for weeks.  I was feeling the weight of the sadness of his whole situation as I finished my note on his condition and began walking to the stairs to go see my next patient.

As I walked, I started hearing the strains of music.  I listened for a moment, thinking initially that someone had a radio running in a patient's room.  It sounded more like a hymn, however, so I moved towards it in curiosity and found an Amish family gathered around an ICU bed.  It appeared they had made the decision to withdraw care from a patient, although I don't know any of the story.  But as they stood with their community member in the patient's last hours or minutes, they were singing the old hymn, "Nearer, my God, to Thee," the notes of which I had heard.  

That stately old hymn always reminds me of the Titanic, where the ship's orchestra courageously played it as one last musical effort to bring comfort and hope to the ship's doomed passengers and crew in an irremediable situation as the ship sank.  Hearing the Amish family sing it with the understated beauty of a cappella harmony with their quiet dignity aroused much the same feeling of steadfast resolve and persistent faith.  This was especially true when sung surrounded by all the high-tech ICU interventions that often feel futile, the lonely suffering of the patient I had just left, the impending grief of their own family, and my own sense of helplessness.  I left the ICU and went to cry in the privacy of the stairwell with a sense of having been given a gift, a glimpse of the hope and faith when I most needed the reminder, a sense of being embraced and held.

I moved from the stairwell on to the next floor where I encountered a friend who graduated from this residency program last year and is now doing a fellowship.  She asked me how I was with some concern since I think the juxtaposition of the disparate experiences I had just had was written on my face.  I rarely see other residents or fellows/attendings in the hospital, so I stopped to process a bit, sharing with her the sense of darkness and hopelessness over my first patient and the shimmering light that felt like a candle in the darkness from the peace of the Amish family's faith.  She nodded and shared some of her own patient experiences and finally gave me a hug before we moved our separate ways.

Hugs are big in my family, I think an inheritance from my nana who believed everyone needs one (and probably more than one).  We give them when we first greet and when we say goodbye.  Many of my friends know me as the one who gives them hugs.  They are important to me, a needed source of support and a frequent gesture of affection.


               http://pocketcultures.com/2010/07/14/kiss-hug-or-shake-hands/

As I processed this experience with my spiritual director, I realized that I received two hugs that day.  When asked how I felt after the beauty of the hymn in the ICU, the word that came to mind was "embraced."  I think God knew, though, that I still needed human arms on the hug, so he put my path in line with that of my friend, and I had flesh-and-blood arms to offer me affection and sustenance as well.

I said at the beginning of the post that I sometimes feel like I post about all the hard things.  The same can sometimes be true of my life; I can focus too much on the painful things, neglecting or taking for granted the shafts of light and glimpses of beauty that cross my path in the midst of the suffering.  I have started seeing a spiritual director, and I think part of the purpose of spiritual direction is to help me pay attention to the beauty.

God is always at work - in my life as much as in the lives of my patients and others for whom I long to see his transforming power.  It's just a matter of learning to see, remembering to look, recognizing his voice.  Spiritual direction is setting time aside to look and listen.

Blogging performs much the same function for me, forcing me to look again at the stories of the people I encounter, to reflect on what the meaning of this sadness or that soaring hope is, and to look for where God is involved in it.  And in both, I have found, I am met.  Unobtrusively, quietly, usually unexpectedly, God shows up and is present and who I am and what I know and what I have learned at the end of the process is not the same as at the beginning.  In this, too, I am caught up and held, and I give thanks.  God is good.  E'en though it be a cross that raiseth me, still all my song shall be, nearer, my God, to thee.

perfection

written January-February 2012

http://www.preciouslife.com/?va=1&vc=279

A few months ago, I had my first prenatal patient deliver a baby with Down syndrome.  After a discussion of risks and benefits, this patient had elected not to do prenatal genetic screening, so the diagnosis of her newborn was a surprise to all of us after delivery.  I was surprised and then frustrated by my own reaction:  disappointment.  I found that I felt some obligation to deliver her a "perfect" baby and that I thought this baby didn't meet the criteria (whatever they are!).  And then I felt awful for feeling that, because I know personally several people with Down syndrome and they are wonderful people, full of dignity and life.  Even if they weren't wonderful people individually, however, I fully believe they share the worth that all of us have as humans, imperfect though we all are.

http://img2.allvoices.com/thumbs/image/609/480/78250276-downs-syndrome.jpg

As I was processing my reaction, I came across a Christianity Today article by Amy Julia Becker about her experience of having a child with Down syndrome, "My Perfect Child."  In it, she writes about the biblical concept of perfection where we are called to be perfect even as God is perfect:  "[T]his perfection has to do with becoming a certain type of person. It has to do with becoming the complete, whole, mature, full version of ourselves."  She then goes on to look at the Beatitudes' blessings as signs of what it means to be fully, perfectly human and concludes that it is "about meekness, sorrow, and longing for God...[about] understanding ourselves as creatures."  Through her experiences with her daughter with Down syndrome, she realized that despite our accomplishment-prizing culture, "a major aspect of recognizing my humanity meant recognizing that I am vulnerable, needy, dependent, and limited."

I think I have lost some of that realization, at least deep-down emotionally, and have begun thinking that the goal of "perfect" humanity is all the things our society - and my profession - values: achievement, financial success, high test scores, knowing all the right answers, solving all the problems (although I know we never can, especially the ones that matter most).  Somewhere along the way, I started thinking that these are the measure and goal of us as human beings, probably because I naturally do well at some of these things and so feel affirmed as a worthwhile person when I use them as a measure.  That too easily can lead to devaluing those who do not "measure up," like my new patient with Down syndrome.

What if being perfect means something different entirely, as Amy Julia Becker describes above?

http://laist.com/2007/08/26/dr_william_mobl.php

As I moved through Advent in December, I thought a lot about Jesus' voluntary giving up of power, honor, and knowledge to take on fragility, vulnerability, and human frailty and limitations as a baby.  I found (and find) myself struggling to transfer my treasuring of his action in history to then learning to value our human weaknesses, to recognize our creaturely identity (necessarily more limited than the Creator) as what it truly means to be human, and to grapple with what failures to measure up I should allow and even embrace with grace in myself and others.

If Jesus is the perfect Man, do I actually want to follow Him in his path of limitation and weakness?  Do I really desire to emulate his full submission to God, his giving over of control, as a model for what it means to be finally and fully human?  How can I give up my desire to control, to make everything "right" (in my narrow definition) in my own life and others' lives? How would life lived without that need for control look? 

I find that my perfectionism spills over even into how I see myself and my life lived before God, crippling my ability to trust and to live freely.  What if life were more about living it all before Jesus and for love of God in an atmosphere of grace and not so much about whether I meet the standard, hit the mark, or manage to avoid failing?

It reminds me of a comment by Henri Nouwen about forgiveness where he explains it is "allowing the other not to be God" and thus not to be omniscient and perfect.  My perfectionism - requiring, demanding no mistakes of myself; having high expectations for others - has many more reinforcements in our society and my profession, but I am struggling to remember to let myself and those around me be what they are - creatures.  Flawed and imperfect, wondrous and lovable, miracles even when they require that we change our expectations.  I'm learning to love a certain little miraculous baby with a recognizable face in the process.

 http://liveaction.org/blog/a-world-without-people-with-down-syndrome-at-what-cost/down-syndrome-child-1/