The Citizen Artist

Azaleas by RL Schrag

Posted by schrag Apr 12 2008, 12:47:36 PM EDT Permalink Comments [0]

An Artist Does A Bone Marrow Transplant #11

Music Has Charms

?Music Has Charms to Soothe the Savage Breast.? It is a quote from William Congreve?s 1697 poem ?The Mourning Bride.?  ?Tis a profound truth uncompromised in the 400 years since Congreve mourned his particular bride.  Brian Greene, the astrophysicist asserts that a natural conclusion of string theory is that the universe is made, literally, of music.  After several readings of his Elegant Universe, I have come to agree.  But even if you aren?t willing to go quite that far, most would accept that music is incredibly powerful. Music is head muse among the muses.  

When I was in the hospital I used to play an Internet classical music station through my computer. It kept me company throughout most of the day and much of the night.  Piano solos for the most part.  The comments were consistently positive, but one most memorable.  It was from a member of the house cleaning staff who said ?That?s really beautiful.  That?s what they call classic music, right??  It turns out that she had first heard classical music the day before.  A friend had given her a tape for her car.  From her description it sounded like a New Age composition, lots of strings, waves, birds, etc.  But she was amazed how calming she found it, and that her teenage daughter had the same reaction.

I?m not going to get into the issues surrounding the fact that someone in our culture could reach middle age without having heard classical music.  But then music programs were one of the ?frills? bumped from the public school curriculums so we could stuff in more ?teach to the test math and science,? right?   No, I won?t go there.  But I will go here: Music Has Charms to Enchant the Fatigued Breast.

The reason you haven?t heard from me for a while is that I have just been too tired to write.  No, I don?t mean to tired to write at all, I mean too tired to write the blog.  I?m still teaching my courses at the university.  My compromised immune system precludes my mingling with my students; so I record lectures, do powerpoint presentations, and look for resources to post on the web for them.  THEN I?m too tired to write the blog.  I?m too tired to do much of anything.  As I told my colleagues, there is this big dude Monsieur Fatigue [pronounced Fat-tea-gay] who can show up at anytime and say ?Find some place to lie down big guy or I will drop you in your tracks."  Cleverly, I give in and immediately sleep for a couple of hours and spend much of the rest of the day prone.  No choice, just something I have to do until my system rebuilds itself and energy is reborn. There is however a lingering feeling of slothfulness, the belief that even though for several hours a day I feel unable to do anything, I ought to be doing something!

I have found a delightful compromise; music, deep, rich music.  Unlike my poor taste buds, my ears and their love of sweet sounds are just fine, thank you.  I have found that even when M. Fatigue is at his most insistent, I can put on my noise-canceling headphones and fall into beautiful sounds.  For me it is all about exquisitely structured sound.  Even though it is well past the season, Chanticleer?s Christmas CD is stunning.  They take your expectation for the perfect a cappella sound and crank it up a notch, and then another and another.  Whew.  Opera is perhaps uniquely suited for fatigued listening.  The greats of the genre, Pavarotti, Horne, Sills, Bocelli, and Calla, all fill your head with sounds beyond possible.  I do not really understand opera, but I do understand perfection in the human voice.  Sometimes tears of pure contentment are the only possible response.

A word of warning:  I find that ?pop? music doesn?t do as well in this fatigued-listening environment.  That?s not a firm distinction.  Someone like Nora Jones or Eva Cassidy does fine, because they have exquisite voices.  Jimmy Buffet doesn?t do as well since his music lends itself to a ?party to? mode as opposed to a ?listen to? mode.  Hip-hop, is more chanted verse, dance and gesture, than music. Hence it is especially challenged in this ears and heart alone musical environment.  The fatigue factor seems to lend itself to ?deep listening.?  Flaws that we will overlook in music that is part of a multi-media experience become jarring when it is just you and the music, alone in the dark.  So when M. Fatigue comes to call, slip on your headphones and invite him to join you in some deep listening; with some carefully selected, incredibly talented, friends.

Posted by schrag Apr 05 2008, 11:18:26 AM EDT Permalink Comments [0]

An Artist Does A Bone Marrow Transplant #10

The Space We Imbue .  .  .  .  

I was sprung yesterday.  I?m ?outside? again after 16 days in the hospital.  The entries in this blog have ranged seemingly at random across the experiences and feelings associated with my transplant.  None are more ambiguous than those of yesterday.  I am well aware that people spend far, far longer stretches in hospitals undergoing procedures that make mine seem like a walk in the park.  A close friend has been up the road at Duke for four weeks now, where they continue intense efforts to hold his cancer at bay.  But, on the other hand, I had never been in the hospital before, and have always had a touch of claustrophobia.  Maybe that at least partially explains the thought that kept swirling through by head as they wheeled me through the labyrinth that led to the front doors, sunshine and springtime: Thank god neither of my daughters ever wanted to go into medicine.  

You might find that strange given the fact that I had just spent 16 days being cared for by wonderfully compassionate and skilled health care professionals.  But you need also to recall that this is an artist?s blog.  Certainly, it is a patient?s blog as well, but primarily it is an artist?s blog, and, as an artist, I am profoundly affected by the nature of the space in which I exist.  I could not live my life in a hospital, and am profoundly grateful that my daughters have not chosen to do so.  As I have already documented, the hospital has made significant efforts to bring the artistic into the pragmatic.  I encountered still another just the day before liberation.  I was walking around the 5th floor, luxuriating in the absence of my IV tower.  I found myself in the burn unit area and was attracted by a cluster of plants by the elevator. As I strolled over to have a look, I glanced out to where the strong sunlight was etching graphics on the concrete - and chanced upon a garden.  It was an ironic garden, even metallic; huge sculpted flowers against the walls.  As I looked more carefully it became obvious that it was a playground tucked away behind a balcony.  See?

I shot a few images and eventually came up with this one of which I am particularly fond:



Another example of art ?inside? right?  Certainly, but the issue is this; the purpose, the function, of a hospital demands a continual but always compromised attempt at an efficient, sterile environment.   I had to wear a mask as I walked the halls not to protect others from me, but to protect me from the concentrated infectious reality of the hospital.  It is an intense environment where art is possible, but attained only with significant effort.  When we arrived home and toted our gear back inside the house, I saw welcoming smiles all around me, from paintings and etchings, masks, photos, carving and sculpture.  I could feel the anxiety ease and my blood pressure drop.  My smile began unconscious again, not an intentional talisman against the unknown.  When most folks visit our home for the first time they often wonder, and with good cause, how we can live in the midst of so much art.  Returning now, after my first extended, stressful, separation from all those dear friends; the question for me is how could we live without it?  We imbue the spaces of our lives with the values that structure our lives; and nothing surpasses art?s ability to manifest those inner truths, to weave the hammock of identity in which we find true repose.

Posted by schrag Mar 23 2008, 03:42:37 PM EDT Permalink Comments [0]

An Artist Does A Bone Marrow Transplant #9

In Good Taste

It would be absurd to assert that this is an artist?s blog and ignore one of the most sensuous of all human activities, eating.  Cultures are defined and evaluated by their contributions to human knowledge and social sophistication; traditionally including art, literature, commerce and cuisine.  However, as most of you know, the minute you put the words chemo and cuisine in the same sentence people will snicker at you, as well they should.

The effect of chemo on your taste buds is absolutely unique.  Once we got my chemo dosages balanced, the year I spent on the outside doing oral chemo had no effect on my taste buds.  I continued to enjoy food immensely.  My medical staff here inside says that I have gotten off lightly; based, I assume, on the fact that there was only one day when my entire ?food? intake consisted of 4 grape popsicles.  If they are right then my heart truly goes out to my fellow patients. My sudden disaffection for food defines what I consider the hardest part of this procedure and if my friends here inside are suffering that more intensely than I, I am truly saddened.  My reaction to chemo this time is a more intense version what happened outside before we regulated my chemo dosage.

It is quite a strange reaction, both psychologically and physically.  Physically, my mouth feels like it has been sprayed with a blend of dust and plastic.  The dust imparts grittiness to everything I put in my mouth and the plastic blocks 80% of any flavor.  My nose seems to work just fine - contributing full olfactory information to a crippled sense of taste.  And that seems to be at least part of the psychological component, I can sense a wide range of odors and tastes, but many of them now disgust me. Additionally, I could probably eat small portions out of narrow ?tempting? categories throughout the day.  For example, it is the middle of the afternoon, and I have a taste for a little dill egg salad on a small slice of brioche.  But that tickling of hunger is completely subverted by what I was served for breakfast.  This:

Therein lies an interesting manifestation of cultural values.  Let us consider how differently oncology protocols treat pain and appetite.  After several millennia the medical profession stopped treating pain as a necessary evil: ?it the body?s way of telling us that something is wrong,? or ?When it hurts like that you know it?s healing.?  ?Much pain, strong baby!?  Fortunately, we only hear lines like that in bad movies these days.  Physicians have realized that pain is a symptom to be treated, that pain-free patients are, by definition, better.  In addition to being pain-free, they are more prone to take their meds and do the other stuff beneficial to their treatment and recovery.  These realizations have led to my being able to secure my necessary pain medications quite easily: I buzz the nurse and he or she brings the pills.  Done, and done.

Let us not wait a few thousand more years to realize the same fundamental relationship between food and health.  No, I?m not going into the whole Pandora?s box of ?Did your diet give you cancer? Can it cure it??  I?m staying on a far more prosaic level:  Chemo patients who can eat food they like are, by definition, better patients. Eating is good. My care people here on the floor tell me, ?Your appetite will come back.?  I nod and smile while screaming inside ?No it won?t! Have you looked at the stuff you are feeding me??  You see, the sweet people who are so competently addressing my medical needs believe that ?eating? means putting food in your mouth, finding the experience tolerable, intolerable or maybe enjoyable.  Either way you chew and then swallow. And for chemo patients it is simply the passing of time is what makes the difference on that scale from tolerable to enjoyable.  No. No. No. No.  Let me show you.

Remember that picture of breakfast up there?  Now remember, because BMTP patients can?t be exposed to germs, breakfast comes under a heavy plastic dome that - all the way up from the kitchen - steams its own unique aroma into the food until it arrives in your room.  You may be asleep, at the end of your meds cycle, have just fought with your morning session in the bathroom.  And you now take the lid off a soggy, steaming, incredibly odiferous, breakfast-based mass.  I have yet to throw up. I consider it a primary personal goal to make it back outside without have done so.  Let me show you another picture:


This was a dessert we served to my daughters over the holiday season.  Haute cuisine and its artistic presentation is not something I brought to this marriage, but I am learning to love it.  The serving sizes, shown above on a 12? by 12? marble square, are not large. A small slice of chocolate cheesecake, heaped with whipped cream.  The cookie is a vanilla tube filled with a vanilla/chocolate paste.  The chocolate sauce swirl connects fresh strawberry slices. The flavors are quite light, the aromas gentle, and the servings gentle, soft, mouthfuls. Confronted with this dish the idea that ?your appetite will come back,? is not some foolish fairytale, it is a calming certainty.

I am not suggesting that hospitals start dishing up haute cuisine, although for oncology centers whose patients are terribly susceptible to nausea and loss of appetite, it might not be a bad idea.  What I am suggesting though, is that serious attention be paid to the whole process by which oncology patients request food and the manner in which the food is presented.  Maximum flexible needs to be a priority.  Personal control would be ideal.  The meal I requested 24 hours ago might be completely off my taste radar by the time the food finally makes it to me. Some attention must be given to presentation.  I?m taking pills that cost hundreds of dollars a day. A cloth napkin is gonna break the bank?  I realize the complexity of the task this implies. It would require a significant reality check on the part of food services that specialize in getting a modest product into to large numbers of mouths efficiently.  Suddenly they must not only be patient-centered, but individual patient centered.  Medical staffs need to rethink the tautology of ?you have to eat to go home.?  ?Eating? is many things to different people.  Right now the norm seems to be ?eat the food we provide if you want to leave?, or in other words, ?You are not going anywhere young man, until you finish those Brussels sprouts.?


Posted by schrag Mar 19 2008, 06:47:35 PM EDT Permalink Comments [2]

An Artist Does A Bone Marrow Transplant #8

Out the Window  03.13.08

It is a hospital, not a hotel.  You can be momentarily fooled by the hustle and bustle of the lobby, but that confusion stills immediately upon entering your room.  This is space designed for serious purpose, not to ?whisk you away from the cares of everyday,? or impress your business associates.  The bed dominates the center room in a very non-sensuous way. Levels and controls, rails and racks.  Monitors and keyboards sprout at random from the walls, linoleum covers the floor.  Christine?s chair cum sleeper fills up one wall, flaunting its gaily-flowered duvet against the institutional onslaught.  A recumbent exercise bike claims the other wall gazing up at a very nice flat-screen TV with a DVD and VHS player. The door leading off the main room enters the bathroom, a title and plastic escape into which only my healthcare team and I have access.  An understandable proscription yes, but incredibly inconvenient for the caregivers who while away these days with us.  Two windows look out across the UNC campus where the clock tower, memorial auditorium, and the football stadium are all in view; vital additions to this, the, we have been told, smallest room in the BMTU.

It is deeply schizophrenic space, with more roles and faces than you can care to imagine.  But it is at the same time strangely comfortable space, a sea of smiling, caring faces swim through, demonstrating how each of the room's multiple personalities meets the need of the patient within.  It is not, however, inherently creative space.  With the sole exception of the exercise bike, it is a room that encourages passivity.  It is an easy room with which to get co-dependent.  ?Hey, crank that bed back, fire up the tube, find the relaxation channel and doze off.?  That isn?t a good concept from an artistic perspective.  One of the common side-effects of a stem-cell transplant and the associated drugs is fatigue.  It is not that the creative impulse shuts down in the face of fatigue; it is that the path to completing the creative concept gets so steep.  The thoughts and images still flit through your heart and head.  But capturing them seems an immense effort. So today I determined that I was going to create something for you here in womb-room.  My initial thought was something abstract, but not completely so.  So I ended up pointing my camera out the window, pulling the image into photoshop and doing some abstract studies based on the image.  Here is the original shot out the bathroom window:

And here are the abstractions I generated:

Posted by schrag Mar 13 2008, 05:54:50 PM EDT Permalink Comments [4]

An Artist Does A Bone Marrow Transplant #7

Of Big Things and Little   03.08.08

Hi.  No, I didn?t drop off the face of the earth.  I just ?went inside.?  I entered the hospital and actually had the ?stem cell transplant? that the last few months of preparations have been  pointing toward.  I?ve had my antennae up and out, but even so the primary sensation has been the very lack of sensation.   Here inside, like life outside, those peak moments of action, involvement and realization that seem to trot so regularly through the lives of our favorite stars are actually quite rare. Life, both inside and outside, is far more sedate than the media would have us believe.

For example, on day one inside I got my infusion of Melphalan, the chemo that takes down all of the old immune system.  I think of it as malathion, and the nurse said, ?Probably not too far off.?  That is certainly an emotionally involving moment, but it is based on decisions we made long ago, and in line with the plan we have for our lives together.  And physically I felt nothing; it was just another line in the IV.  Well, in the interest of total honesty, I did begin to get hives about ten minutes into the twenty-five minute long infusion, they slapped some Benadryl into the line and the hives went away.  And that was about as exciting as that got.  Day two I got back my own frozen stem cells that will now build my new immune system.  This too is a process of more rhetorical power than actual physical sensation.  I only needed ?three bags full,? the count can go as high as 30.  So again the procedure was underwhelming.  Three cylinders, maybe five inches long and an inch and a quarter in diameter got popped into giant syringes which in turn were hooked into Ralph [Ralph is my IV tower who now follows me around EVERYWHERE I go] and infused back into yours truly.  Sensations?  A little warm, flushed, as I literally was, with new cells.  But otherwise nothing, except that my breath apparently smelled like tomato paste, a common though weird side effect.  The whole thing took maybe fifteen minutes.

The point is this: I am in no way blind to the vast network of inspired science that lies behind these miraculous procedures which I undergo so passively.  I am incredibly grateful to the men and women whose lives and research have made it all possible, and I sit in humble awe of their intelligence and their varied sources of inspiration.  But all that collective brilliance is largely invisible to me as a patient with a line running into my chest.  Maybe I was expecting more, like a soundtrack or a voice over by James Earl Jones.  I don?t know.  What I do know is that there are still fascinating things going on around me and I will continue to share those more mundane observations with you!

Here?s one:  Once you are properly ensconced in your Bone Marrow Transplant Unit room, you don?t breathe the same air as the rest of the hospital, and if you leave your room or, heaven forbid, the BMTU you wear one of those tres chic blue hospital masks.   So, it?s day one and I?ve been checked in; we have moved all the paraphernalia for our indeterminate stay when "ta da"  I have to leave the BMTU for a ?screening chest x-ray,? named thus, I assume, in case I ever wish to have screening installed in my lungs.  So they put me in a wheelchair.  I know, I had just hauled all of our luggage up to the room, but now I needed a wheelchair.  Go figure.  As per the aforementioned requirements, I put on my big blue mask as we started through the labyrinthine hallways of the hospital, off to the land of X-ray. 

Now, let me point out right here that the folks here are some of the happiest healthcare providers I have ever run into.  They border on the joyful.  Oh, sure you have some of your stern, brash House ?wannabees? stomping around but they are far more the exception than the rule.   So, I was a bit startled by the facial phenomena I experienced as we wheeled along.  Here is what happened.  We would approach a person in the hallway; I would make eye contact and smile.  They would make eye contact, start to smile, and then stop and look away.  I couldn?t figure it out, my fly was zipped, and even if it wasn?t, I was sitting down, how would they know?  I didn?t have hat hair, hell, I didn?t have any hair, I had shaved it off a couple of days ago to avoid waking up on a pillow that looked a shedding St. Bernard had shared it with me.  Both wife and daughter agreed I have a nice head, and there are lots of bald people of all ages around here so it couldn?t be that.  Maybe spinach in my teeth?  And that, of course, was when I realized what was going on.  Half of my face was invisible.  When you wear a mask, no one can tell that you are smiling, so no one smiles back. While this fact has obviously been known to cheerful felons across the centuries, it took me somewhat by surprise.  But on further reflection it is really quite simple.

Smiling, like frowning and yawning, is contagious.  Give a smile; get a smile - most of the time.  But a mask neutralizes the ?dominant smiling organ,? the mouth.  So I decided to use the ?secondary smiling organs,? the eyes, famed in hardboiled detective novel sentences like, ?He smiled back, but the smile never reached his eyes.?  I tried pushing the entire smile up into my eyes.  This required grinning like a maniac behind the mask, and unmasked they might have wheeled me off to the ward for the modestly unbalanced.  However, safe behind the mask, I began to see results.  While some of the approaching strangers still looked away, the periods of uncertainty grew longer.  And, wonderfully, many began to smile back, recognizing the smile in my eyes.   So what message do I take from this observation gleaned from my first days ?inside??  I guess the realization that such big things get done so casually here that it is very important to do the little things with extra care.  Things like trying to remember the names of the countless people taking care of you, saying thank you all the time, and smiling all the way up through your eyes.

Posted by schrag Mar 08 2008, 09:51:28 PM EST Permalink Comments [1]

An Artist Does A Bone Marrow Transplant #6

Sometimes A Catfish  .  .  .  03.03.08

I will go into the hospital in a couple of days to do the actual stem cell transplant; out with the old, in with the new.  So naturally, we were looking for fun things to do before ?going inside? as my daughter the lawyer calls it.  We opted to go to the Asian Market to buy roasted chestnuts.  That was a bit odd in its own right.  Roasted chestnuts possess a flavor and a texture that I associate exclusively with those years when I was a schoolboy in Vienna, Austria.  On winter mornings we would wait for the streetcar, huddling together, bundled against the wind and snow that swooped down from the alpine heights poised above the city.  Vendors? ovens would sprout like sooty mushrooms from the snowbound street corners around the trolley stops.  The menu: roasted slices of lightly seasoned potatoes, or chestnuts roasted in the shell, neatly scored for easy peeling.  Three cents bought you a newsprint cone filled with warmth and fragrance, an effective bulwark against the cold and dark that wrap bookends around the day.  Such a memory rests awkwardly against the gaudy paper lanterns, the aroma of garlic-roasted duck, and the swirl of excited Mandarin that defines the entrance to the Asian Market.

Still, the market is, if not the only then certainly the most reliable and cost-effective source for roasted chestnuts around; so the objective is well worth jangling a few old memories.  In addition, it is a peek into a delightful, exotic world.  The shelves are lined with cans decorated with wildly impenetrable labels.  They may contain humble diced carrots, but to our unknowing eyes they whisper of the mysteries of the Orient.  We wander and I finally find myself in the seafood department.  I?m not sure to what extent I would trust the fish ensconced upon the chopped ice.  They look well and truly dead.  And, for all we may hear of Japanese millionaires paying thousands of dollars to have the world?s freshest tuna flown to their kitchen, these critters appear to have been on ice for a good long time.  I turn away and am confronted by a gathering of sages.

They are, in reality, catfish.  Live catfish.  Catfish in a tank.  For some reason known only to catfish, I assume, they have arranged themselves in rows.  One, two, maybe two and a half rows stacked quite regularly atop each other.  Mouths and beady eyes out to the brightly lit store; tails to the netherworld behind them.  They range in size from merely impressive to truly colossal.   But most entrancing is the fact that they appear to be breathing in unison, fringed mouths opening and closing like some synchronized aquatic pipe organ.  In this blog I tend to err on the side of seeking profound meaning in everything.  It is a common foible when you are fighting a disease, an inclination to the somber.  So I watch them for a while, imagining them chanting: ?om, om, om?; or ?No justice, no dinner!?  I try to hear the music of the aquatic organ I have created in my head.  But nothing really works, so I fall again to the simple entrancement of watching them; in out, in out, open close, open close. That is fine, that is enough.  Sometimes a catfish is just a catfish. A simple delight.

Posted by schrag Mar 06 2008, 10:16:21 PM EST Permalink Comments [0]

An Artist Does A Bone Marrow Transplant #5

One of the gifts I am discovering in these writings is what I call the ?grace of other spaces.?  Among the rules I have set for myself in this blog is to look for art everywhere.  We often stumble over beauty, not because it is hiding, but because we have grown inattentive to the exquisite in the everyday.  We are inclined to find art only where someone else has placed a frame, or erected a pedestal, or thrown up a spotlight declaring, ?Now that, Mildred, that there is art.  That?s what they call real beauty.?

Balderdash, always one of my favorite words, and delightfully applicable here.  Beauty needs no frame to gild its particular lily.  Insight needs no pedestal.  As a matter of fact, if you spend enough time at contemporary art galleries you begin to suspect that the very presence of a frame or pedestal indicates more Gotcha than Goya.  Surely with tongues so firmly planted in cheek these folks must have trouble breathing, not?  But, I digress.  The point is this: As we sharpen our appreciation for the little bits of beauty that lurk around hospital corners where literal sterility is king, we become even more attuned to the wonders that await us in the more earthy environs beyond the tobacco-free zone.

Last week, after a day with the CBC, complete-blood-count not Canadian Broadcasting Corporation, Christine and I stopped off at Ben?s Bargain Barn. It is one of those delightful little places that do their best to mimic your grandparents? attic, or maybe garage.  Everything is previously owned.  The dominant display style is to fill old shelves or pile things in bins and barrels.  Still, the owners are savvy enough to the Antique Road Show mania to price a tattered deck of playing cards at $12.50 and to label three pieces of mismatched glass as ?collectable.?  I don?t know if any of their pieces have ?recently sold at auction? for thousands of dollars.  But the semi-random nature of the displays does make for wonderful photo opportunities.  This is one of those situations when you take advantage of the excess made possible by digital photography.  It is like shopping when money is no object.  You don?t have to decide between this or that, you just keep clicking the shutter: gimme that and that and that and that.  Later, at the privacy of your own computer, you sort through the remnants of your photo gluttony and say, ?Oh, yes.  That?s the one. That?s the shot I really wanted.?  I call it ?Knobby.?

Then this morning I was sitting inside watching the rain splash the deck.  We are still deep enough in drought to be thankful for a February thunderstorm despite the havoc Old Man Winter is raising elsewhere.  It was a gentle, Hopper, kind of moment.  Am I the only one who finds Edward Hopper gentle?  It is a lot like the thunderstorm.  The Doppler radar on my computer tells me that the storm hides no tornadoes; it will harm no one.  It will bring only needed rain and rolling thunder.  So I sit and enjoy, deeply contented.  Hopper is like that for me, life with Doppler.  His subjects sit in rain that will not drench me; they endure a storm that is not mine to bear.  So I observe them as comforting representations of human endurance and compassion.  I am glad Hopper brought his images into the world, and I pay him honor with my enjoyment.  A thought that naturally sets me wondering how I might share my Hopper morning with you.  And, so here, several hours later, is ?Grilling Raindrops.?  Enjoy.


Posted by schrag Feb 26 2008, 07:11:35 PM EST Permalink Comments [1]

An Artist Does A Bone Marrow Transplant #4

February 15, 2208

It was a strange day yesterday here in the old chemo room at the hospital, strange in that it wasn?t strange at all.  We drove in a bit early, found a good parking place, found our way through the labyrinth, chose the center Lazy Boy, sat down, got the machine hooked to my Steve Austin bionic vein; and proceeded to read, sleep, and work on my computer for a few hours.  Email, grading, browsing papers online.  It was, in many ways, just a normal day at the office.  And that, of course, was the revelation: it was another day at the office; it was another day of life, of watching the world unfold, and of allowing myself to be ambushed by tiny miracles that coalesce into great ones.  

It is hard to explain to those unfamiliar with the procedure, that a stem cell transplant is not ?a thing.?  I blame ?House? and ?ER?, all those grandchildren of ?Marcus Welby, MD? for a basic misconception we have about disease and treatment.  In order to fit the ambiguity of medicine into the tight time constraints of TV Land, every malady, no matter how complex, was resolved in the course of either 22 or 44 minutes; leaving the requisite time for selling beers, and breads, and now prescription meds.  We are left with the falsity that life is like that, that getting better, or not, occurs between commercial breaks.  In reality treatment, certainly a stem cell transplant, is the result of a lot of days at the office.  You go through procedures and processes in which you are an n of one; acting and reacting, exploring and growing, in these offices, labs, and treatment rooms of our transient reality.   They are different workspaces, surely, than the ones where we have spent most of our lives, but they are ?offices? nonetheless.  And we work here, now, for a while, at old tasks and new.  And eventually we will leave, as we leave all jobs, god willing, better and wiser for the experience.

Still, it is easy to forget, in these new spaces, that certain verities remain.  There are those small miracles I mentioned before, nudging their way towards larger ones, but there is more.  There are countless reminders of the joy embedded in the human spirit.  Here in the Bone Marrow Transplant Center there are a plethora of quilts.  Bright splashes framed against white walls.  No doubt old friends to those for whom this is a constant workplace, yet they are shining new faces for us part-timers to ponder as we wander from room to room.  Taped to the cabinet across from my chemo station is a photo of a pleasant pooch, raising a cheerful paw and imploring me to ?Have a GRRRREAT Day!?  I am reminded, as we all need to be, that much great art is the accumulation of small art; that bit built upon tiny bit, a normal day at the office contains perceptions that presage the making of wonder.

Posted by schrag Feb 16 2008, 12:00:47 AM EST Permalink Comments [0]

An Artist Does A Bone Marrow Transplant #3

Feb. 13, 2008

Today we are building a pathway into my bloodstream.  A line, a shunt, whatever you chose to call it, it allows us to put medicine into my body or draw blood out without turning various portions of my anatomy into a pincushion.  That is a good thing for a variety of reasons.  But despite my childhood fondness for Steve Austin [no relation to Jane, look it up ], having a central venous catheter in my chest is a somewhat disconcerting concept, "androidish" if you will.  The anxiety on that score fades quickly as I realize that my glasses and contacts, even my pill box and prescriptions represent, to a certain extent, a body/machine partnership that elevates my life and enriches the process of living.  So shunt on Kimosabe!

The notion of a pathway in my chest turns my mind to wider paths, more insistent routes that take us from the here we know to the somewhere we have yet to encounter. Shoots and ladders from yesterday to tomorrow, and sometimes seemingly back again. And that, of course, is what life is all about, movement and change.  The unexpected is always waiting up around the bend, sometimes masquerading as what we had planned, but just as often presenting a life of which we never dreamt.  In truth, we cannot cling to the person we are today.  The simple, inevitable, passage of time shuffles cells so adroitly that we greet the sunrise as much physical newcomer as familiar friend.  All that calls my attention to pathways.

As we leave home, fog smothers a golf course with translucent embarrassment, masking dry yellow winter swales where green should reign.  Joggers vanish and appear like dreams and aspirations, fears and faded memories.  Reality flees on Sandberg's little cat feet and I enjoy the comfort of the fog wrapped morning.  I-40 is the fog's evil twin.  Insistently real, the cars and concrete sweep the mist away, pointing directions in pragmatic green and white, black and yellow.  One way, Yield, No left turn, or right, Stop.  My Way! My Way! insists the highway.

Inside the hospital pathways are far more ambiguous, there are signs that point the way to various centers, wings and labs; but ironically the names of the destinations are subtly unclear.  What is Nuclear Medicine anyhow?  Do they treat people who have radiation sickness, or radiate people with other ailments?  Why do I, an adult male, get all my treatments in the Women's and Children's Hospital?  Does Tobacco Free mean you can't smoke, or are they giving away free cigarettes?  This is, after all, North Carolina where tobacco is called The Golden Leaf, and we play basketball on Tobacco Row.  When I see someone in scrubs push a button that opens a door through which I can see a bathroom, does that mean I, too, can push the button and gain access to the bathroom with the unisex icon?  Delightfully, I manage to get lost and find my way to the burn unit, where burns are, I assume, treated, not administered.  Before me stained glass: a bit sharp-edged and photographic for my taste, but lovely, calming.  You feel the blood pressure drop.  Here's one:

Fortunately, our PA for the day is equally amused by the world in which he works and where I am to be treated.  He assures us that despite the language of the consent form that we must sign, the odds are quite good that I will actually survive the day!  And I do, I would mention more about the procedure, but I really only remember asking them to put on a jazz cd.  They did and said "We're going to turn on the sedation now.

And they did.  Hope I'll sleep through tomorrow's chemo as easily.

Posted by schrag Feb 14 2008, 10:08:38 PM EST Permalink Comments [0]

An Artist Does a Bone Marrow Transplant #2

Mr. Hopper's Waiting Room.

Today we have the staging of parts. I have no idea why they call this series of appointments staging, but it carries a nice theatrical ring. It is raining as we make the midmorning drive over to Chapel Hill. The snow that blanketed the ground at 5 AM has melted. Still, in this part of North Carolina we cancel school on the prediction of snow, and the university has already pushed starting time back to 10 AM, so nothing is certain. But we will not miss the staging for this gentle rain, and any moisture in the midst of the current drought can be considered a good omen, which you are allowed to note, but not mention.

The lobby of the hospital is actually quite lovely, soaring windows, greenery, all light and air. We could be in an upscale hotel were it not for the wheelchairs and glowering faces. The illusion crumbles further when we find a waiting room where the lobby bar should be. And though the room itself is comfortable, the patrons nudge it down the road toward Mr. Hopper as they retreat into sullen dozing, ignoring for once Oprah's prattle lashed to the wall. The obligatory toddler babbles and shrieks in blithe ignorance of the surrounding, blanketed anxiety.

Hanging Out in Mr. Hopper's Waiting Room My first appointment cranks up right on time. The staff is delightful. They are competing with each other to see how fast they can do this particular series of x-rays. It is a dance, technician and machine with me in between. We are good, really good. My perception is confirmed as my tech trips back behind the lead curtain chortling, "Stylin' it is all about stylin'. We get major style points for that one." I am declared a good patient. And I declare the machine exceptional; clean lines, supports just where they should be, it is a calm, cool, well of efficiency. We all bond, and my new friends try to "back door" me into my next appointment. It's like Dungeons and Dragons in the steam tunnels, lefts and rights, ups and downs and round and rounds, through restricted areas we scurry in our anonymous gowns. But alas, we are busted and my guides genuinely downcast when a stern face above an authoritative clipboard informs them that "the table is full" and they must deposit me back in Mr. Hopper's Waiting Room. We take a more public return route where I am surprised by a huge impressionist floral painting occupying a whole wall by the elevators. It gets scant face time as eyes all engage the numbers above the doors attempting to levitate a car to the landing. I wonder what would happen were one to stare steadfastly at the painting? It's worth a try in the future.

The next appointment holds real sci-fi potential. It has to do with irradiating some of my blood and spinning it back through my system where an e-reader, or gamma reader or tarot reader makes sure it is all rushing around where it is supposed to be going. But, my observational intent gets sidelined. This machine is truly advanced; unlike an MRI machine which sounds like a Mack truck trying to climb out of the Grand Canyon and will weld any metal headphones to the side of your face, this baby is quiet, open and mp3 friendly. So I slip on my noise canceling headphones, fire up my iPod and Monsieur Buffett and I drift away to Margaritaville for an hour or so. I feel a bit pod-like myself upon emerging. Still, it was a very cool machine; I'll try to pay more attention if I do that again.

We lunch in the café which could be anywhere, in a mall, a university, high school, or company. As I snag a cheese/bacon/pepper burger with fried onions rings I sense a self-perpetuating element in the American healthcare system. Christine contemplates putting together a plate of fruit and cottage cheese. They are over there by the fried chicken and mashed potatoes. Hmmm.

The after lunch gig is a bit of a letdown. Pulmonary function tests - blow in the tube, see if your lungs work. But it is rescued by the enthusiasm of the technician. This guy loves his lab, his computer and his graphics. He cheers you on: "Come on, stay with it! You're almost there!" "Look at that!" he chortles as he highlights meaningless clusters of peaks ad valleys on his screen. "Oh, yeah! All right!" I tiptoe away, a little embarrassed to be watching.

Last stop for the day is the main reason I'm here today, the bone marrow biopsy. The staff is up-front about this one being "unpleasant," read that as "a big ouch." Well, again, it isn't something you would run out and volunteer for, but it's not terrible. They get a local anesthetic going, I've got Jimmy on the headphones, you exhale and relax when they stick you, and then sing along with the music. Over before you know it, nice musical wrap. Except not quite. Turns out we needed to do an EKG and a chest x-ray, so we circle back to a couple of stations. It just takes a few minutes, but the staff seems to be wearing down, it is four o'clock, the shift is changing and everyone's energy level is dropping. Shutters are snapped, papers are shuffled, and we are released out into deepening dusk.

We head back toward, but not to, home. Rather, we drop into the bar at The Umstead Hotel. With its imported wooden walls, lush carpets, marble floors, exquisite furnishings and exceptional art, The Umstead is about as far from an institutional environment as you can get. It is one of those rare places where you can feel your blood pressure drop upon entering. It is a very intentional choice, and as we sip our drinks and nibble on fried pickles [yes, fried pickles, ambrosia, trust me] the ambiance works magic. Yet, across the room, a couple feigns civility while glaring at one another and I am struck by the fact that while environment certainly influences our emotions; snail-like, we carry the bulk of them around with us. The hospital's utilitarian back rooms and labs can house a frolic were you get points for "stylin'" and across from us, in this idyllic setting, stress, worthy of needles and embarrassing probes, seethes from suit to suit. The day affirms the assertion that while most often we cannot control what happens to us, we can control how we react to those events. We can haul anger and fear into The Umstead, and we can truck optimism and creative attention along with us into Mr. Hopper's Waiting Room. Our life, our day, our choice. Posted by schrag Jan 21 2008, 11:10:51 AM EST Permalink Comments [1]

An Artist Does A Bone Marrow Transplant.

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Posted by schrag Jan 17 2008, 12:55:55 AM EST Permalink Comments [4]

Claiming Our Story

At the core of the notion of a citizen artist is the assertion that we are best qualified to tell the story of our lives, to place our personal history in perspective and to dream our chosen course into the future.  This is not to deny that there are creative geniuses who tell humanity?s story brilliantly in a particular medium.  They have colored our world and given voice to its wonders, and for those creations we will be forever in their debt.  But they do not tell our story, they do not see the world through our eyes, they do not feel with our hearts, they do not ponder our thoughts.  The expression of those unique, personal perceptions is a task that cannot be relegated to another, it is ours alone ? frightening and wonderful.

The challenge is frightening because the sobering process of living life has taught us that we are not up to the task.  We have taught been that we are not artists. We have been taught that there are professionals out there who have invested their entire life in acquiring the specialized skills necessary to paint or sing or write or sculpt or dance exquisite perceptions.  We have been taught to leave the "doing" to them.  We have been taught that our role is to appreciate their efforts.  

But the task of expressing our own lives is also wonderful, precisely because much of what we have been taught is a lie.  Quite simply, we are all artists.  We are all creative.  And we all have a unique tale to tell - our own.  The hurdles are mostly in our head.  We think we can't write, draw, paint, do photography, make music.  Truth is, we probably can, and at a level that might surprise us.  We are just afraid to try.  Fearful that we will fail, or even worse embarrass our self with our efforts, we chose not to try at all.  Sad how well we have been taught, eh?  But what has been learned can be unlearned.

That unlearning, and the subsequent acquisition of new confidence and expressive skills, is central to the raison d'etre of The Citizen Artist.  This blog is part of my personal commitment to continue my own activities as a citizen artist ? telling my own story, and broadening the audience for that tale.  Through it I hope to share with you a progress report on this frightening and wonderful undertaking.  And I hope you will tell your tale as well.

Posted by schrag Jun 17 2006, 04:59:03 PM EDT Permalink Comments [0]