Quality versus quantity

Well I managed to write daily for a week during my week away, but it has been quite a bit more challenging to write regularly during re-entry. Some of the difficulty is my varied schedule and not having the luxury of prepared meals at home. But more rests on my difficulty using the computer during Hospice home visits and opting instead to type them up at night.
My resistance is on several levels. On the one hand, it is against every human instinct I have to try to type these sensitive visits while they occur. It is hard enough to surreptitiously hand write the few notes I take, let alone trying to cut and paste the information in multiple pages that don't often follow the flow of the story. And then there is the quality of the story itself.. I don't care what computer program you use, a drop down menu does not do justice to what these patients and families experience. Part of me writes these notes in detail to honor the telling.
On the other hand, any new skill is difficult at first. I can clearly remember medical school, when even a hand written note needed several edits and much time. And, in all honesty, I want my personal time back. A lot to think about in the coming weeks.

Non PC folk songs

I am reminded once again of the connecting power of music. Tonight on the last night of the Winter course we gathered around the piano with voice, guitar and fiddle to sing and sway together. Broadway tunes, folk songs, Irish airs and Childe ballads. A disturbing number of the folk songs are all about why or how "I killed my darlin'". Why that should be the most frequently memorialized event of early America beats the hell out of me. It is a bit of a stretch for this group that prides itself on inclusivity and sensitivity but we manage to la la la the parts that offend most.

Meditation

I had the opportunity to attend a 1 hour meditation session at the guest house tonight. This has been the longest time period of continuous meditation I have done to date. I can't say that I was completely successful for the entire hour but then again it depends on the definition of "success". Certainly I was able to stay seated and silent for the whole hour, and I definitely felt peaceful at the hours conclusion. I had a few moments of "head bouncing" almost dropping off to sleep but the chatter was less than usual.
The other participants in the room were an interesting mix of local townspeople of all ages. Most were new to meditation and open to new experiences. At the end of the session a few described their sensations during the practice. Some commented on feeling a tingling sensation in their fingers during a brief period of new age piano music played in the middle of the session. One man commented on his surprise at hearing his heart beat every time he breathed in but not out. I was surprised to actually feel the music in my outer skin of my face and neck.
No big magic or mystery yet but a nice sense of peace and hope to continue exploring.

dreams

This is not the first time I have tried to write a daily journal. My bookshelves are littered with lovely notebooks dutifully written for the first week or so. The entries start out with lengthy tomes and lofty topics. Then they start to space out. One a month... one every 6 months.. one after 6 years. One of my favorites was a dream journal I kept around the time I was pregnant with Naomi. Even now in reading that journal I can remember the dreams I wrote about and smile at my subconsciousness' sense of humor.
It's funny that I can remember those particular dreams because, as a rule, I just can not remember my dreams any more; even when I go to bed and send the message to myself that I want to.  Something happens the minute I get jolted awake by the alarm and I can feel them leaving my brain like sand through my fingers. I'm hoping that I can direct Chatter mind away from endless commentary and give her a place to direct her energy so that she can be my allie and help to keep them present for me.

Chatter mind

I am away this week at the annual winter course for AACH (American Academy on Communication in Healthcare). This is a group I only half jokingly refer to as "my tribe". That is, we share a lot of dearly held ideals about the potential humanity of our healthcare system once it returns to a patient-centered or shared decision-making model with mutual respect at it's core.
One of the things I love about the winter course is the time for renewal and personal growth. The fact that it often occurs out of town for a whole week allows time to disconnect from the usual hustle and bustle and gradually tune IN to self.
As I leave the everyday clutter behind I am often amazed at how much my brain hangs on to "busyness" and business. This year I opted to drive the 9 hours from Pittsburgh to Chester, CT as a way of transitioning into the physical and emotional space. In truth I was kind of looking forward to the solo time with my relatively new car and my music loaded up on my iPod touch.
The first few hours were energetically accompanied by Stephen Sondheim, Brahms and Jonatha Brooks. Darkness, drenching rains and aching shoulders displaced my initial enthusiasm for the journey and I quit for the night at a hotel in eastern PA not even halfway there.
The next day I resumed, reassured by daylight and the prospect of rejoining old friends. I started out this time without the ever-present "soundtrack to my life". No phones, pagers or music. At first I could feel my shoulders relax down from around my ears and the pace of my driving slow to a more mindful and less anxiety provoking rate (at least until the occasional boluses of harried drivers would rush to hydroplane around me). I noticed the infinite palates of grays, tans and reds of the New England winter. I smelled the tang of muddy spring around the corner.
After a few hours of this my mind started to fill the unfamiliar silence with the continuous commentary I call "Chatter mind". My mind bounces from question to disparate question..."How many skunks and possums actually make it across the road?" "Where are the pushy drivers hurrying off to?" "Will Guy remember to order the tickets for Alex's upcoming concert?"... And on and on..It is often Chatter mind that makes me despair of ever being able to truly meditate and let go of the endless to-do list of my life. Happily, after a week of AACH connection I can often sustain a renewing silence for hours.
I'll let you know how the return drive goes.

Casualties of winter

Winter is finally loosening its grip on us so yesterday, I took the opportunity to survey my backyard pond. The ice has open areas now, but there was a week while I was away that the pond heater light went out and the pond froze completely. I was hopeful that the pond was large enough to support the koi and other creatures submerged in winter sleep, but this morning I found 5 large dead koi floating, along with a bullfrog and some chubs. I haven't seen the turtle yet but have little hope. I fished out the koi, mourning the loss of familiar friends. They actually had names, personalities and recognizable features. So today I mourn for Hot Lips, Princess Mononoke, Bubba, Rosey and Sephora. You gave me great peace during your 8 years here. I sure hope there are a few surviving kin in there come spring.

New habits

I'm back on the weight watcher's wagon again after years of rebellious "non-tracking" and subsequent re-gain of all that I lost plus a few extra pounds. I'm a "lifetime member" meaning I could go to meetings for free if I was within a pound or so from my "goal weight". Alas, I have not been there (at goal) for quite a few years now. Lets hope that shelling out the bucks helps me to get back to my healthy weight again.
Every time I go back to the program I am amazed at the power of "community".  The good news about a group is that there is always another person either in your situation or, if you need it, totally NOT in your situation to provide motivation. "The group" can call us on our behaviors in ways we would never allow an individual (especially one we knew well) to do.
For me, the risk behavior is not keeping track of what I do, and more importantly don't, eat. I began to resent the time and memory it took to be accurate in what I was eating so I quit doing it. Oddly enough, I can see that when I keep track, I actually eat much more food on the program (by a factor of two!) but loose the weight slowly but steadily. My task now is to reframe that action into something less onerous.  I'm not "reporting my lack of compliance to big brother".. I am "becoming mindful of a large portion of my day". I'm not "having to come up with menus for an entire week".. "I'm experimenting with different cuisines".
They say it takes twenty one days for something to become a habit. I am five days into daily posts here and a week into faithful tracking. Wish me luck.

High Sierras

The weeks before the trip were always tense with anticipation.  Boxes were packed, lists were compiled, recipes gathered until finally the 8 hour drive to The Sierras.

The first night we would watch sleepily from the safety of the car as our parents struggled to match minute dots of paint on the myriad of tent poles by car headlight. When the old army tent was finally erect with the Coleman lantern sputtering at its apex we would stumble out with our pillows and sleeping bags and look up at a sky almost grey with stars usually unseen in the Los Angeles haze.

We were always awake well before our exhausted parents out and up to the field to see if we could tell which horse would be ours. Using all our guile, we would try to bribe “Lefty” into assigning us the mount of our choice. Years later the names of the horses: Shorty, Cinderella Rags, Midnight,… Juno..still evoke the simultaneous sense of isolation and absorption into that vast wilderness.

Once our parents were up, the first of many breakfast feasts unfolded. An endless supply of eggs and sausage cooked over camp stoves that had to be pumped regularly least they gradually die down. For us kids – the special treat of cereal in it’s own little box – (yes, even the forbidden sugary ones!).. and the joy of burning them after eating, budding pyros that we were.

Finally, when the last mule was packed and the arguments over the horses complete, we were given a boost by a willing hand to sit with legs splayed across gentle twitching flanks that smelled of sweat and leather, sun and grass, and the day’s journey over steep switchbacks would begin.  The sun would start to climb and our eyes would droop with the hypnotic steady sway of the ride but we would fight to stay awake to savor every second until we reached our camp site and bid goodbye to our rides.

Again, the bustle of making camp, erecting tents, finding firewood (no small feat above tree line!) and getting that first fire going with a special stash of pine needles, twigs and cones secreted from down the trail.  No gas for Dad!  He may have been a thermodynamical engineer in the busy city, but during these 10 days he was “everyman”  and would create and sustain our very world with us. We all took turns watching the fire, banking it when it got low, calling out for wood runs when needed. Even the youngest of us took turns with the firestick at times.

 I remember a land of unfocused blue sky that made your eyes water just to look at it. A sky with sun and moon present at the same time. I remember shadowed hill sides with caches of slowly melting snow the texture of gravel, tinged pink with algae and, if we were lucky, a stock of fresh caught rainbow trout for dinner. I remember carpets of lichen on rough edged granite with infinite palates of grey and green. I remember the bleached bones of an animal and wondering at the strange curve of its long teeth that caused its death after it could no longer gnaw enough to keep them worn down.

Come nightfall, after the dishes were done with water hauled in sweating canvas buckets, we would pick an adult’s legs to lean against and listen to the stories of our lives. Travels with Charlie, The Hobbit, The Once and Future King… all blending with the smoke and the stars until, one by one, we would be carried off and tucked into the snug flannel bags.

Back to Brahms

My Wednesday night choir rehearsals returned last night after an almost 2 week hiatus. As much as I enjoy the breathing room of a few nights off, I still really miss my weekly music fix! We are just starting work on the Brahms Deutsche Requiem.. one of my absolute "desert island" pieces. Here is a wonderful link to the Wikipedia article on it with some musical excerpts as well. http://en.wikipedia.org/wiki/A_German_Requiem_%28Brahms%29
Betsy, our choir director, really enjoys this work and spent a fair amount of time woodshedding the details but also giving us some inspirational stories for the bigger picture. I loved hearing that the very first words of the first movement were written to comfort the bereaved.
"Selig sind, die da Lied tragen, denn sie sollen getröstet werden."
"Blessed are those that mourn, for they shall be comforted".
The return of that same musical theme at the very end of the work with a triumphant eternal flare just seals the deal for me.
"Selig sind die Toten, die in demm Herren sterrben, von nun an."
"Blessed are those that die in the Lord from henceforth."
I am not a particularly religious person but this music speaks to the spirit in us all.

Wonderful words to sing shoulder to shoulder with my fellow Mendelssohnians after a day of dealing with families in anticipatory grief.

Can we hear you now?

I have just returned from another home visit with yet another family on the brink of death. It has been a long 2 hours of listening, listening, listening and biting my lips to curb my own talkative nature and allow them to say all that they have needed to say for so long. Or rather, to allow them to feel heard for the first time in so long because, unless they say it first, they won't (can't?) hear it from me or anyone else.
I descend with them into that first long journey of illness and dashed hopes. I hear over and over again the phrase "no one ever told us anything".. and know that it is not for lack of trying at times. Gently I probe to hear from the wife how she has seen her husband, barely conscious in his hospital bed in their living room, change in these past months. I hear about the radiation treatments and the "good reports" from the cancer center: "the tumors are no bigger" (but, we grimly acknowledge, there are still so many of them and they are all still there..) He is home now with feeding tube and hospital bed, because his insurance covered "skilled days" are over, "the nursing home was a living hell", and "if he can get strong enough he can get some experimental chemo!"   I bite my tongue and wait.
"I worry because he is not a fighter and I just know he could beat this if he would only try!" she says.
I hear about what a fighter the wife is from her own bout of heart disease and surgery.. off the vent in a day, walking in three, home in a week " I was saved for something." she says, "maybe it was this.." She tears up and I know we are closer.
She tells me more about her fears of using the minimal (inadequate) dose of pain medicine ("he sleeps so much now that the kids are asking me not to give it any more"). We talk about the difference between sleepiness from medicine and just plain being so damn sick. We talk about how much patients want to get better "no matter what" and how hard it is to let go.  We observe the signs of pain that show outwardly even when we can't tell others about them.
Finally we gently rouse him, drain 350 ml of amber fluid from the tube left in his ailing lungs, and ask him how he is doing.  He is quiet and slowed in his responses.. "OK". (What did we really think he would say?). I ask him if he has any pain and he looks at his wife, then at me, then his wife again before saying "yes". She sighs and says "He told me "no" before you got here".  "Maybe he didn't want to disappoint you.." I offer. Her husband reaches for her hand and squeezes. I offer to speak to the kids about allowing more pain medicine and they both agree.

Before and After

Lately, I am struck by a sense that there are no "accidents". It's not that I relinquish all ownership of my actions, or that I think there is some being that purposefully orchestrates all events... Instead I am newly sensing the flow of the consequences,  B from A, C from B and so on, in not just my life, but everyone's.
That flow doesn't have to (indeed doesn't often!)  make sense. (How could it?) Yet we struggle mightily to make evident connections that will give sense and meaning to them to step back from the awful realization that control is an illusion; that we are always "one event" away from something that changes us irretrievably.
A fall, a fracture, a smile, a missed flight - and then suddenly there is a "before" and an "after" both precariously balanced on the knife edge of "now".

gratitude

Every now and then you have an interaction with a patient that affirms you are, indeed, in the right place at the right time. For me it was last Friday evening. The patient is a 94y old still of fairly sound mind watching her body decline in an area nursing facility. Two years ago her husband died and she still tears up about it when she tells me about it today. She confides in me that she's worried about her mind because there are times she swears she sees him watching her or hears his voice telling her where she left the last item she's searching for.  I ask her if he's right (about where the item is) and she laughs and tells me " usually.."

Physically she has high blood pressure that has been hard to control, but not a lot else, and I'm actually worried she may not be "sick enough" to stay on hospice for long. The nurses tell me she used to personally "adopt" the sickest of the patients at the facility, cajoling them to eat like a loving grandmother. The staff encouraged family to contact hospice because they really care about her and want her to have a little of the same personal care and she has refused to return to hospital in the future if she declines.

I settle in to hear her story, because I find that this simple act can provide some of the "strongest medicine" I deliver. An hour and a half later we are both amazed at the time gone by. She holds my hand to her damp cheek and tells me she hasn't felt so alive in months and I tell her the same and truly mean it.  I promise to stand by her as she battles her depression and hope I can document enough illness to keep her on hospice long enough to achieve my promise.

I can't help but wonder about the many people out there who just need an ear, a heart to hear their struggle. One of the things she said.."we all need to be needed".. keeps coming back to me.
I hope she can feel how much I needed to be that person for her as well.