Winter Waters

walking by the lake blue-white in half-melte
distant scraping resolves to
sails further out, skaters with parasails
in just enough wind, metal on ice
wet gliding, steel shaving, memory of iceboats

several hours' drive further north
there are bear tracks in late snow
some kind of quiet god woken too early
to own his still-twilit domain
long summer evenings have not yet sprung
out of blue bogs, green cattails, moose brown

there's a river only half-awake
this blue hour of year, stone clatter
musical chime of cold flow on icicle
blue tears hung by spray on granite over shale ledge
this single river carving its shallow valley
scrapes dense kraton, tough sheets, resistant caprock

even further where loons will migrate later
hallow sea-edge open watered haloed green
white pack ice wind-sails into the corner bay
lead left half-open, ready someday for seals
where shallow river-mouth meets tidal swell

we write what we have, when it comes
on shore sand, on half-drowned leaf
brown with tannins and river rust
the land writes on my own waters
circulating sea-tide of red blood and bone shell
skull under skin just waiting its time to emerge

back south in more habitable home
late snow coats milkweed pods whiter
than white, late broken buds exploding with cotton
wild rice stalks clump like black bamboo
and the ring of open water mudding the shore shines

An Invocation for Healing

This Photoshop montage superimposes a clutch of marigolds with my own most recent EKG.


(Click on image for larger version.)

Marigold is an ancient healing herb as well as a common garden plant. Marigold is good for the blood. It's good for cuts and bruises, and can be used as an antiseptic. It can soothe bee stings. It's good for skin conditions of various kinds.

Marigold is good for wound healing. I will invoke the essence of marigold to heal the surgical wounds I am about to receive. I will ask to be infused with the essence of marigold to protect myself against infection, to reduce inflammation, and stop bleeding.

Marigold will help me heal faster, and more effectively.

The Blood Is the Life

(More from the Anemia Diaries. Other entries here.)

May 19, 2011

Noon.

Just back home from the hospital outpatient ward after another blood transfusion, another two units of red cells via IV. That makes five blood transfusions in the space of a year. Probably will be one or two more before the upcoming surgery, which is now only weeks away. I have to go back to the hospital in four hours so the lab can draw blood for a post-transfusion hemoglobin count, to see to what level the transfusion raises my count. I've been anemic so long, I'm afraid my body's partially adapted.

Every time I go through this, it wipes me out. It wipes out the whole day. It's a shock to the system. It's invasive, even to be honest a little traumatizing, even if it's good for you in the long run. I feel icky. I've got all these foreign cells in my body now. There are always risks with an IV donation. I am not allowed to give blood because of the dengue fevre I contracted and survived when I was in Java, Indonesia, in 1986; as with malaria, those factors stay in your blood forever after, and they can't be filtered out.

I did Reiki energy work on the donor blood bags before the blood hit my veins. It went in cold, from the refrigeration they use to keep the bags fresh. The veins in my wrist on the IV side were noticeably chilled, compared to my other wrist. All those foreign cells in my body. I'm doing more Reiki on myself now. Assimilation, subsumption, absorption: making the foreign blood mine. I feel like a vampire who drank too much, got too high on the rush. Kinda woozy, both good and icky at the same time. How do other vampires do this? I guess they get used to it. I may feel like a vampire, charged up with new fire in my veins, but I also feel disequilibrated.



I've known for some time that I carry a Vampire archetype: everyone carries twelve sacred contracts, or archetypes, and I know what most of mine are, including the Vampire. At those bad times in my life, when I've lived off the generosity (life-force) of others, and doing so all unconsciously, it has been something that kept me alive, if not always ethical. These blood transfusions that literally keep my body alive, this past year: I never thought an archetype could be so literal. Symbolically, though,

Beyond the sexual level, we sometimes form psychic attachments to others because we desire their energy, a desire that manifests through a need for approval, a need to have the "other" take care of our survival, and a fear of being abandoned. What has been defined as a co-dependent relationship could easily fall under the Vampire template. You may find it hard to identify yourself as a Vampire, yet it is essential to review this archetype personally. Patterns of behavior such as chronic complaining, over-dependency, holding on to a relationship emotionally or psychically long after it has ended, and chronic power struggles are all indicators of Vampire patterns. Holding onto someone on the psychic level is as real as holding on to them on the physical.

So, both symbolically and literally, medically, clinically, for me, now, the blood is the life.

•

I have a short mini-concert with Perfect Harmony this evening, too. Only a short drive away, fortunately. There's another concert I could be part of in Milwaukee two days from now, but I'm not going to go: four hours of driving just to perform for ten or fifteen minutes. Maybe if I was still in my twenties and perfectly healthy, I'd consider it. But not now, not after having been in hospital again, not that much tiring driving for so little performance time. I need to rest for a few days, now.

Funny taste in the mouth from IV saline push, and the other meds they shoot into you, Benadryl for allergic reactions, a diuretic so you excrete the excess plasma. Is this too much information yet? Funny tastes linger in your mouth whenever you go through an IV transfusion like this. Every drug has its own taste, and the blood has a taste, too.

My (GP) doctor decided to tranfuse me since I've been feeling run down and out of sorts, the past few weeks. My last blood count was right on the threshold, in terms of the numbers where he starts wanting to give me a transfusion, and if I'd been feeling good, we would have just tested again in two weeks. That's where we've been for a couple of months, since the last transfusion, but the past few weeks I've been feeling run down again. Although there has been no noticeable bleeding caused by the chronic illness, and my hemoglobin count in fact had risen slightly over the last two weeks. (The first time that's been true in a year.) But I just haven't been feeling good.

Two of the more annoying side effects of anemia, at least for me, are insomnia, and itchiness. I have itched in places I did not think it was possible to itch. Not just on the surface, either, but inside the flesh. And the itch moves around, springing up sharply just as you're about to nod off to sleep. So you lose sleep just from the itch, and the anemia also has its own tendency to mess up your sleep schedule. It doesn't help that this has been a bad spring for my allergies, too. Not to mention how depleted my immune system has been, between the illness and the various treatments. So when they transfuse you, they shoot you full of diuretic and you pee all day. Although I get a reduced dose of the diuretic drug because I already flush out a lot of water due to the chronic illness. Not having a fully operational colon means you lose a lot of water. I'll be at risk for kidney stones from here on out, unless I drink an extra gallon or so a day and keep peeing all the time. Just have to keep flushing it through. Too much information yet?

It only took the nurse two tries to get the IV into the vein on the back of my hand, this time. The really good nurses get it in one, and painlessly. The nurse today was not that good. Took her two tries, and the first one really, really hurt. So new puncture marks on the backs of both hands.

They also scheduled me for an ungodly early hour this morning, so not enough sleep beforehand. As if it wasn't stressful enough, just going in to hospital. I did nod off in the chair briefly, but mostly I sat in discomfort and read. Took along writing and drawing materials, but brain too foggy to write, or even think too hard. Must. Wake. Up. Brain. Brain. Hurts. Fire good. . . .

I'm so exceptionally tired of all this. I really am tired of being sick, and tired, for so long. We'll see if this latest blood influx perks me up at all. Probably at least the itching will go away, tonight. I hope. After the concert tonight, sleepytime beddy bye night night. Oh hell, nap now, even.

And I still feel icky. Food first, then maybe a nap. Then afternoon blood draw for testing, then concert clothes and driving to the concert. I think I'll request that I be allowed to sit down afterwards.

•

Later:

Sunset.

Concert went well. It was an LGBT garden party put on for several of the Madison and Wisconsin LGBT organizations, out in the farm country west of Edgerton, WI. A really beautiful spread owned by a gay man. Gathering was a fundraiser, but also informational, a bit of networking. The Chorus was some time ago asked to perform as part of the event. We did two short sets of music derived from our upcoming concert featuring the music of Freddie Mercury and Queen. There were only eight of us from the Chorus there, which is only about a third of us. But as an octet we actually sounded great. Several people said nice things afterwards.

It was a beautiful setting, really pretty, big green lawns divided by hedgerows and stands of trees, with interesting buildings. The lilacs were in full bloom, and the sun had come out after what had been a cloudy day. I drove back home through the farm fields as the sun was going down, and stopped to make several photographs, as the light was perfect, and the setting was bucolic. Farm spreads, clouds, cows among the trees, beautiful falling-down barns.

I left my hospital ID bands on from this morning, partly because I needed to leave them on for when I went back to the lab for the afternoon blood-draw—but also so I could show the guys how I'd spent my morning. So, how was your day? I used it as an excuse to sit down when I felt too tired to want to stand anymore.

Showing off the hospital bands was kind of perverse fun, actually. I have a twisted, dark sense of humor at the best of times, but lately, with, shall we say, nothing left to lose, I've been playing with my own existential situation, finding the humor in the absurdity of it all, whenever possible. When life is like this, you laugh or you cry. Hospital humor is very dark humor. Actually, since my father was a doctor, I've been around hospital humor my whole life. The only thing that has changed recently is that I've stopped editing my sense of humor in public.

To be completely honest, when I showed up for the concert, and the guys asked my how my life was going, I showed off the hospital bands from the morning hospital business, and told them the absolute truth: I've had a long day, I'm tired and surly, let's have fun and get this over with. But it did go well. Naturally, the food tent provided for the garden party had nothing I could eat. But that was expected; these sorts of fundraiser shindigs almost never cater to gluten-free diets, or even vegetarians, for instance. I was too tired to want to cook my own meal this evening, so I got some quality takeout on the way home and ate when I arrived.

The blood transfusion I think did give me a little more energy. We'll see how the next few days go. I feel less icky now, after food, nap, concert, more food, getting out of formal concert clothes, and now just lounging about at my leisure.

I'm going to take the rest of the night off. Maybe watch a funny movie.

I feel like getting on the studio computer and making some music. I've started a new spacemusic album. i've been making loop-based drum and ambient tracks, which I'll layer over with bass and Stick live tracks later. It's going okay so far. It's got my attention, as does writing out the new music commission.

Doing something creative every day makes me feel better about the day. Even a stressful day like today is not a total waste, if you have something artistically productive to show for it. Making art is the best revenge. Not only does it keep you going, not only does it provide you some hours in which you're positively distracted away from your medical issues, at day's end you have some art and/or music to show for it. It keeps me sane. I carry a couple of art-related archetypes, after all, and they also need to be nurtured.

This story is nowhere near over. There's a lot more going to happen in coming weeks and months. So I guess I'll see how it all goes.

•

Midnight.

As sometimes happens, your humor gets you through the day, dark and gallows humor though it be. Then, just when you're starting to unwind, at the end of the day, in a kind of delayed reaction, the invasive trauma, the shock to the system, comes swarming back to you, maybe when you're watching an emotional scene in a dumb movie, or even dumber TV show, and suddenly, "for no reason," you burst into tears. Just crying a little. The scene that triggers it can be a very positive moment, a moment of lovingkindness, even. The only consistent trigger is that the emotion is deeper than words. The content of the emotion is less significant than the intensity of the trigger.

I've learned to just let it rain. If you need to weep for 30 seconds, or 2 minutes, then just go ahead and weep. There's no loss of dignity in weeping, and no loss of mythical manliness in needing a good cry.

That is heresy to the macho-bred, of course, or the stoic, emotionally-repressed post-Viking culture of my mother's people. Or the English, who have always impressed me as being among the most sentimental people of all, despite their practice of keeping a stiff upper lip. (Maybe that's one reason the English upper crust always used to vacation in the southern Mediterranean, like Italy: one some subconscious level they knew they were more alike than not.) But the Irish, my father's people, knew the value of a good wail, a good drunk, a good keening.

Sometimes I think that I am keening, as old women were hired to do at wakes and funerals, because it triggers something even deeper inside, that must come out. Something very large, and usually speechless. A beast without a name, perhaps, that lives on in the interior, whose occasional appearance makes the hair stand on end in numinous recognition: we are, after all, possessed of deep feelings, and in our deepest natures remain half-angel, half-beast.

But this quick cry at day's end is how I shed some of the trauma of going through all these medical moments. It can be a daily trauma, some days more so than others. As good as the doctors are, as good as the procedures are for you, in the long run, as healing as they are, they can still feel traumatic and invasive. And you must shed those feelings as you go, alongside the more physical toxins also passing through you along the way.

If you've never received a blood transfusion, you might not be able to fully imagine how very emotional it is. Someone gave this blood, this blood that today is saving my life. Someone made that gift. As alien as it feels going in, and even if it feels weird for some time after, the sheer grace of that is an incredible gift.

It's not something you can ever give back, or ever repay. You can only pay it forward, hopefully passing on the life, the healing, the grace, to someone else, down the road.

Process of Writing 10: Over the Thresholds

Taking a day off makes a difference. For the past two afternoons, I've been sitting on the porch notating final pencil master scores: pulling things together from the lyric note book and the music sketchbook, making them into a finished song. I'm on page seven of this particular song, with about a page or so to go. That's pretty productive, even by my own standards.

The new music commission is modular in structure. This is in part to give options for different lengths of performance of the same work. The modular design allows things to be moved around, or left out, at the discretion of the conductor of the Chorus, depending on the occasion, or on an individual performance's requirements and needs. I planned this modular structure from the very beginning. Frankly, it also makes it easier to work on writing the lyrics and music, because I can skip around and work on any section that attracts my attention, today, rather than feel forced to write within a linear, narrative form. And I can add things later, too, if need be.

There are two large sections within the overall piece, called "Stories," which are the meat of the stories I've gathered from members of the Chorus, via interview, submitted writings, poems, stories, etc. The "Stories" are modular. They're separated from each other by 4 or 8 bats of piano interlude: a simple C-major promenade melody, which is changed and varied each time, reflecting the mood of either what has gone before, or what is to immediately follow. So the piano interludes are connected to specific songs within each of the two large "Stories" groupings, but each song itself is modular, and can be moved around within the "Stories" groupings, if necessary.

So I am not even close to thinking about a final order yet for each of the "Stories" songs, and not setting any of the segues between modules into stone. It's more important, at the moment, and for the purposes of meeting my writing deadlines, to just write each song out in final score, then assemble the modules later. We will be determining the final order of pieces, naturally, after they are all written. I know what I want to begin and end the suite of pieces with, for this commission, and I already have the opening bars of each (the end echoes the beginning: as T.S. Eliot wrote in his sublime Four Quartets, "In my end is my beginning. . . ."). But the middle elements of the overall work are subject to revision and re-arrangement, and will be for some time yet.

"Deadlines" is a nasty word, when you think about it. Especially when you're writing to meet a contractual date, and at the same time fighting a life-threatening chronic illness. It's a bit of ironic humor the Universe likes to throw at you, to notice such things. I have multiple deadlines I'm working towards, at the moment: some of them creative, some of them physical and operational.

I guess my mind is sharper this week than it's been lately, as I seem to be finding more and more absurd and surreal word-play connections like that. Maybe the lingering effects of the anaesthesia from the minor surgery I underwent five weeks ago have finally worn away. Who knows? I'll take whatever mental edge I can get.

It's true, though: I do feel sharper these past few days. One of the side-effects of this chronic illness is anemia, because, ulcerative colitis is an inflammation of the lining of the colon (an autoimmune disease, for lack of a better classification, in which the body attacks itself, as with rheumatoid arthritis), which leads to bleeding ulcers in the colon. I know where the worst area for bleeding is, in my own case, thanks to colonoscopy results: the sigmoid colon. (Cue Olivia Newton-John sings, "Clinical! I wanna get clinical!") My doctor has given the clinic's lab a standing order to draw blood any time I want to go in, and do a hemoglobin count. I just got more results today. I'm still anemic, still on the threshold of needing another blood transfusion, although my count has gone up .4 points since the last blood test ten days ago.

To be honest, I would be fine with receiving another transfusion right now, as I've been feeling anemia symptoms for the past week: general tiredness, itching in places you can't imagine, which sometimes keeps you up late at night, and some other things. I've been feeling run-down and less than good, so I'm ready to fill up the tank, change the oil, get new wiper blades, the usual. Frankly, I'm tired of feeling like crap, of feeling run down and beat to a pulp all the time—which has become not an occasional, but an existential, condition. Let's make a change.

Getting another blood transfusion now would put me over the threshold into feeling better, one hopes, maybe with an even clearer mind. The brain likes blood, for nutrition, and all those little neurotransmitters. Getting another blood transfusion is always a risk: every medical procedure is a risk. And it's an invasive one. I know my blood type, but I like the fact that before each transfusion, they run a fresh blood panel and type-and-cross-match, just to be safe, just to prevent immune reactions, or allergic responses. Caution is never amiss, in these bloodsport games we play.

The other threshold I feel I've stepped over, right now, is the creative one. Namely, I've started in on the final pencil score. That is, the final writing of parts of the new music commission, committed to score paper in final form, albeit in pencil, in case I need to still make corrections as I go. At some point, I will acquire the notational software to engrave the score digitally, which allows for even easier editing and changing—but later.

It can take a lot of effort to build up the creative momentum to start writing final score, rather than keep writing sketches. There is a commitment required to go to final score—although you can still make revisions, still make changes—that makes the whole project more solid, more real, more ready to proceed. It's a big change of direction, of intent. Now, we're going to make this real, make it manifest, make it go off into the world on its own.

I was reading last night in Arthur Laurents' autobiography, Original Story by, where he describes the collaborative process of writing a Broadway musical (or "lyric theater" as the collaborators chose to call West Side Story). It takes months, even years, and a long process of revision during rehearsal, in order to complete a musical, rehearse it, and put it in stage. One of the fastest writing periods (prior to rehearsal) that Laurents describes took only four months—but much longer is typical.

I've now been writing hard on this commission for male chorus and piano (and maybe one or two other instruments, for some songs) for about four months, in fact, and I'm starting in on final pencil scores of some of the pieces. So I guess I'm not behind schedule, after all. I do feel an urgency to get as much done and onto score paper as I can, before the upcoming surgery. Because, between the recovery from the surgery, and the painkillers, and the lingering effects of anaesthesia, it's likely that I'll need a few weeks before I can get back to work on the music.

In the next day or so, I expect to be able to finish this one song from the "Stories" grouping, and begin work on another one or two. Once you cross that threshold, the flow is there—at least for awhile. Once you've set up the project and the process, you can get into a working routine, a pattern of working, that sustains your momentum for as long as your energy holds out. So far, so good.

Nausea and Fossilization

Afternoons of anger, and something unnamed, bordering on
self-pity. A few days ago under anaesthesia, etherized on the table,
for the removal of three large calculi, accretional soma-made stones,
from the bladder. They go up the dick with a tube, a camera and a laser,
suck out the small ones, break up the big one and suck that out too.
The proper word is aspirate. As though breathing in, breathing out,
ice fragments up a straw. The urologist saying it all went very well,
nonetheless, you pee blood for a few days, then the painkiller
specific to the urinary tract makes you pee orange for a few more days.
Back home, outpatient surgery although you spent most of the day
wearing a backless smock and a wristband with name and allergies listed,
the worst headache in years, probably from drug and anaesthesia
interactions, mind fogged by the general painkillers, antibiotics,
and loopy with logorrhea. Called a friend to tell him all went well,
entertained him for an hour with being wacky from the drugs.
Days later, still feel like crap. Hurts less. No more narcotics, those make
you nauseous at the best of times. The stress of the day stacked up
against the ongoing chronic illness making that worse, making the recovery
that much slower. Lose another week to this, when all instinct is to
resist and work to get better. Brain foggy, body restless, too tired
to actually do anything, tried working in the garden, fruitless, frustrated
and ready for nothing. So it goes.
Now the storm outside reflects the storm that was within, that passed out
with the expelling of stones, moving out of the flesh into air,
hard wind rain and tornadoes down south feeling just what you felt
a couple of days ago, acting out on the grand scale. If only psychology
was so refractive. Traces of bones in the ground. Deer ate the tops off
the newly sprouted tulips. Stigma of snow against wind-riven spruce.
How long does it take to get your life back? Seems longer every day,
every time you look at it. Endless regression of endpoint, Zeno's receding
goal. Now its going to take even longer to recover, to get your life back.
This surgery only a foretaste of what's to come. Some part wishes you'd
been able to keep the removed bladderstones in a lucite tube, little stones
made in your body, like concretions and geodes. Your bladder a flexing geode.
Chances are, there will be other stones. Never going to be able to drink
enough water to prevent it. So they'll monitor. Every so often another scan
just to check where you're geologically active. Kidneys or elsewhere,
your own body a sedimentary shore where laminae are being laid down.
If you bend and fold in the right directions, the yoga of orogeny,
the laminae will soundlessly crack and be spat out, burning only somewhat.
Like a lost tooth kept in a jar. Little handmade boxes, filled with tiny models
of what could be called art. Puzzle-boxes to open and marvel over. Small traps
for the eyes of the unwilling. Cemented self-stones set inside like lotus jewels
of enlightenment. Or at least a box for forgetting.
A crystal growing inside the skin. Flesh becoming stone, calcifying,
limestone, dolomite, pillars of salt, we all turn into salt plumes
when the sun raids. Becoming stone inside. Legs ache from this running on.
When the calcification encounters epidermis you being to marbleize, statued,
someday rediscovered as cave-bacon within your own earth,
your permanent shelter underhill.

Icons of Fragility

bloodred the lampposts
lining autumn Taos streets,
skinned moon rising

long avenue of brick desert adobe tan red as far as the gutter flow
paper luminaria cold night of festival hot cider at every door
red line of cactus flower needle and blood inflow along vein tanked
in every corner gas station in Utah some kind of crimson trash heap
drawn the eye into mesa-strewn late rain veil sunset impermanent dour
tailight streak ginger treasure trail down street to spring of living
bloodwine red right returns across refraction of industry veining skyline
nightfire blood of sky dawn tremble with skyfire along line of bleak horizon

moving from the inset to the ember frame
a maize of envy and daisy of swift delight

How Can You Write A Poem When You're Dying?

(More from The Anemia Diaries:)

March 21, 2011

There was a poetry anthology published a decade ago, titled How Can You Write A Poem When You're Dying of AIDS? (London: Cassell, 1993. Ed. by John Harold) The anthology collected poems written by people who were, in fact, dying of AIDS, responding to ads the editor placed in the UK LGBT press. Not that the question asked in the title is rhetorical; rather, that the contents of the book answer the question. Indeed, how can you not write such a poem?

The anthology takes its title from a poem by James Sykes, an impassioned rant that starts out in metered, rhymed verse, then in the third stanza explodes into free verse of varying line lengths. It's quite striking to see a poem begin formally, then blow that up in rage: a clear example of form following function, of a poem's form reflecting and repeating its contents. It's a poem that takes things very personally. Sykes' inarticulate rage grows throughout the poem, through various stanzas of responses to the title question: the medical details, the inability to talk about a lover already gone, a rage-filled appropriate response to the absurd question "how do you feel about dying?" The poem ends by asking the title question one last time, with a final reply, paradoxical and personal as it is; I can't . . . can you

I'm taking things very personally at the moment. I have now had a chronic illness of major proportions (ulcerative colitis, with anemia, irritable bowel syndrome, and other complications) for several years, in active phase and in relapse for going on two years now of continuous treatments, medications, blood transfusions, debilitating exhaustion, IV drug therapy, and more, with all the fallout one gets from all that. Fallout equally physical, mental, spiritual, and psychological; indeed, the whole person is a synergistic system encompassing all those modes, and others. The past few months, it seemed as if the IV drug treatments were working, and I was finally making some progress, feeling better, getting stronger; only to discover this past week that that has been an illusion, and I've only been dying more slowly. From the existential philosophy viewpoint, of course, we are all dying slowly, all the time, and we will converge on that end-point of the void between, each unavoidably in our own good time. Most people spend most of their time avoiding thinking about that, or distracting themselves away from that fatal truth.

This past week, it was discovered after yet another blood test that I am still dangerously anemic, only it took months to get there instead of weeks. So I had another blood transfusion, followed by a CT scan, to figure out what's going on. My hemoglobin and red blood cell count did go up, but not much, not as much as I would have thought. Still, there's been no apparent bleeding for almost two months, so if the blood is draining away, where's it going? There's no obvious sign, no reason why I should be anemic. They also drew more blood for more tests, the third time in a row within two days, leaving me by week's end with band-aids covering multiple needle-points. I'm getting tired of so many needles. My veins are getting stiff and scarred again. I've got all kinds of track-marks everywhere on my arms, like a junkie.

I'm looking out on the robins hopping around in my beloved back yard pear tree, which was almost destroyed last fall by a wind storm. What was a huge full covering canopy has been reduced to three smaller trunks and a few branches. But the branches and twigs that are left are beginning to bud out with new leaves. The March weather is temporarily warm now, accelerating the greening. Daffodil shoots are beginning to emerge from the ground, and the crocus in the sunny corners are already up and blooming. So are some of the striped exotic tulips I've planted beside them. The crocus bloom first, the daffodils second, followed by the rest of my garden. Spring is returning. Of course, March is the most difficult month, here: we're bound to have at least one more snowstorm, or at least a week of very cold temperatures, before winter withdraws completely. March is the hardest month to endure because it yo-yos around between spring and winter, tempting you to relax, then slamming you down again.

I feel like my entire life these past few years has been like the month of March, because my illness operates on exactly the same yo-yo temptation principle. I've learned not to trust feeling better, because it inevitably gets slammed back down. I don't know what to trust, what to believe, what to do. I am completely at sea about to think or believe. Who do you turn to for answers, for solace, when every new piece of news adds to the confusion rather than the clarity?

This leaves me feeling furious, frustrated, annoyed, continuously enraged at a subsurface level, short-tempered, and impatient with the complacent stupidities of those surrounding me who are in denial of their own eventual mortality (which is just about everyone). I find myself not knowing what to think or feel, how to act, what to do next, completely unable to decide if anything I have been doing or ought to be doing in future is worth it. I've tried everything; it doesn't matter what I do. I can "think positive" and the slam-down is the same as when I was depressed. I can do everything right, and it all still falls apart. I follow the advice of my doctors and other supporters, and it doesn't make any difference. Every setback ruins my attitude, because each setback reinforces the truth that I'm not getting better, or stronger, or healthier. This most recent setback, this past week, has set me completely adrift. I don't know where to turn, or where to go, or how to proceed. I feel completely lost? How can I write a poem when I feel like I'm dying? I readily admit that I am not coping well with setbacks of any kind, right now.

There's a ground-level, biological urge to survive. For life to find a way, somehow. To go on living, no matter what, no matter how bad it gets. A stubborn clinging to life even in the face of inevitable loss. Like my wounded pear tree behind the back porch, damaged last autumn, almost destroyed, yet this spring putting out new buds. The tree says, I will grow back, I will survive, no matter what. There's a similar animal tenacity in us, the root-level urge in our very DNA to keep going, no matter what knocks us down. The coyote will gnaw its leg off to get out of the bear-trap that caught it. The eagle with the broken wing will still try to fly away to safety. When natural disasters happen on a large scale in populated areas, people gather together, the survivors immediately begin caring for each other, rebuilding shelters, looking for food and water.

We all want to live.

I talked over my frustrations with a friend during the medical test days last week. He said to me that he thought the anger I was feeling—I was too numb to feel anything else anymore: I'm bored with weeping, self-pity is boring, thinking positive is boring, all the usual emotional cycles I've been through so many times that I'm sick of all of them—was an expression of that same tenacity to want to keep going, to keep living, no matter what. My friend is probably right. I still feel that anger, today, sustaining me, keeping me sharp and hot.

But there are quality of life issues involved. I am simply not having any fun right now. The chronic nature of this illness, its continuous gravitational tug every day, its daily grind and demand for attention, have all worn me down to the point where I have nothing left to give. I take no joy in life. I take a little pleasure, in food, in sex, in reading, but it's an hour stolen from a day and, often enough, a sleepless night. Insomnia has become a real problem, as I'm too tired to discipline my racing worries, powerless to push them away, so I often lay awake at night, taking a long time to get to sleep.

In the midst of all this I suddenly find myself writing poems again. It's purgative. It's a formalized, restrained means of expressing the incoherent screaming and yelling and jumping up and down and punching my fist through the wall that I really want to be doing. it's a pressure-valve letting off the steam.

I don't know what to do, what to believe, what to think. The only thing I can do is keep moving forward: without hope, since hope leads to desperation; without expectations, since expectations lead to anger and depression when they're never met; without any idea if this bad time of life will ever end. I don't really believe, right now, that this illness will ever end—every time I think it's getting better, instead it gets worse—or that I will survive the proposed radical surgery described as a cure, at the end of June. I don't really believe the surgery's going to be the end of this, it's all been going too long. I can't really see any light at the end of the tunnel, because the tunnel has kept getting longer and longer as time has gone by. I don't really imagine I'll come out of this, even if I'm finally cured, with any money left to my name: I still can't work, I'm depleting my savings, since I have only minimal insurance the surgery is probably going to bankrupt me and leave me homeless and destitute. There are no guarantees. Even if after the recovery from the surgery I am able to work again, there's no guarantee that my depressed part of the country will have any work I can do before my money runs out and I have to sell everything anyway.

That's the emotional reality; that's what keeps me awake at night. It doesn't matter if it isn't logical or rational. This is the emotional reality. I'm scared to death. The surgery terrifies me; even if it goes well, it is life-altering, and things will never be the same afterwards. I'm told they will be better, but all I know for certain is that they'll be different. The alternatives to surgery are undeniably, eventually fatal. It's a question of how fast you go, and how miserably. The aftermath of the surgery could leave me still unable to earn an income, destitute and homeless. I am really, truly freaked out by all this. This is the emotional and psychological reality I have been living with for a very long time now. This is Big Stuff. I have a right to be freaked out, to be scared, to be terrified.

I tried to put all of this emotional reality "on hold" while I dealt with losing weight for the surgery, regaining my strength in preparation, and also writing music—but then this most recent setback happened, and it's all back, weighing on my mind. I try to put it back on hold again, and it's a struggle. No part of me really believes this long-duration ongoing hell will ever come to an end. Not until my death, that is. Maybe I'll die on the operating table. Maybe I won't. But at the moment, I really don't care. That's the level of "quality of life" I'm dealing with right now.

So I find myself having zero patience for the whining of people who are addicted to their personal dramas but don't really have anything to complain about. I have empathy for people who find themselves in dire straits genuinely worse than mine. I have no sympathy for complainers who just complain to complain, but there's nothing really wrong with their lives.

The only means I have to cope with any of this is to make art. So I find myself, surprising myself in the doing, writing more poems when I didn't expect any. I continue to work with papier-maché, just to have something to do at night when I can't sleep. I am trying to focus on the music writing, but honestly I'm too angry just now, and need to vent. Writing poems can be palliative, even though they''re not a cure. Writing poems, journalling about my situation, talking to friends about my troubles: all necessary and useful venting.

I look at the origin of the current form and style of poem I'm writing, what I've come to call the Letters form, after the initial poem in the series. I cannot help but think this poem-form is directly connected to my chronic illness. Inspired in part by Jim Harrison's Letters to Yesenin, a masterful book of poems written in a dark period of the poet's life, written in a form that inspired this one. Re-reading Harrison's Letters last summer, at a point in my illness before the current treatments began, where I almost bled to death, where I had a near-death experience I still haven't been to fully integrate, I guess triggered these new poems. My own Letters-form poems are connected to the process of this illness. They are a response to it, I suppose. Without trying to be too glibly simplistic about it, I guess these poems are a result of my illness. They certainly help with the emotional reality. The poems are, as I said above, a very restrained form of the incoherent, panic-laced screaming and shouting I feel inside. I am not a fan of raw process in art: I appreciate a little aesthetic distance. But again, don't read too much into that: it's not a statements about poetics, or how I believe art "ought to be made." I carry no beliefs of any kind about how art "ought" to be made, other than those I've acquired through personal experience. I have not critical axe to grind about art-making, only that art will always need to be made. We all want to live. Making art is what keeps me alive, right now. That, and forward momentum.

Who am I writing these Letters to? I left the name-plate blank on purpose. At first I just didn't want to say. I didn't want to be derivative. In truth, I don't have a specific person in mind, living or dead. I could answer glibly by saying, if the letter feels like it's addressed to you, feel free to write your name in. I could answer more thoughtfully, saying that I don't know who the Letters are addressed to, it's a mystery even to me. This in response to a plausible questioner wanting to uncover yet another biographic authorial mystery (the usual fallacy of thinking we can know about the art by interrogating the artist's life): Who are you writing these Letters to? The truth is, there's no big mystery to it, only a little one. I really don't know. I am content not to know, content not to have specific person, place or thing in mind. That the poems are connected to my personal process is evident; some of the poems even sample bits of what's going on right now, bits of dreams, bits of significant moments in my medical trajectory, bits of emotional reality.

The only thing I can do, short of gnawing my leg off to get out of this trap—remarkably, that's just what the upcoming surgery feels like—is keep going forward. no destination in mind. No sense of an ending, either the when of an ending, or the how. Going forward with no hope, no expectations, no anticipation of an ending. Going forward like driftwood on a river, not knowing what's around the next bend.

And I'll keep making art. Keep making poems. I never expected these new ones to appear. I thought I was done with them. I guess this is a multiple relapse: a medical setback, a poetic relapse. I'm not overly interested in the why of that process: I merely notice that it keeps happening. If I don't survive this, and I cannot say if I will or won't, if nothing else, I've left a pile of art for my survivors to sort through. At the moment, I find it hard to give a damn about anything else.

Tenacity of the Whirlwind

When the week breaks into exhausted corners that take days
to overcome, when at the end of it you're not sure any
of the flurry of actions was worth it, when you're left more confused
than ever, knowing nothing, feeling nothing, wrung out,
what's left? I didn't drive up to town today, as I was already
exhausted and it thunderstormed all morning, noon, and night.
Why tire yourself out even more with that kind of rough driving?
Things seemed to be going so well. Progress was being made.
I had a line on an escape hatch. Then the inevitable setback.
When you've had so many setbacks that you've become wary
of anything that seems like progress, because it all gets shot down
the moment you arrive near acceptance, when the rug's been pulled
out so many times that you can''t trust the floorboards,
what's left? I made a large meal and ate it, feeling bloated
afterwards. Probably shouldn't have had that second helping.
But what does it matter, when it's all going to crash down
and fail, nothing solved, nothing ended? There isn't anything
left to feel. It's all been wiped out.
The milky barium beverage they make you drink before
the CT scan, to give your guts contrast, the x-ray dye they stick
in your veins during the scan, arms sore after, and a migraine.
Enough to dilute the next blood test results. So who knows
what to believe? I hover on the edge of wanting an end,
due in part to the lab's incompetent stutter, the repetitive
markers that mark nothing, that add up to data sunk in tar.
What a wasting day. Leaves me too wiped out to do anything
but limp home, feet up, and try uncomfortably to nap.
I stare for awhile at dim photos on the wall, dim
in the dark, then nap fitfully in the big chair. At least with
the latest blood transfusion I'm not kept up all night, itching.
Other than that, still wondering if it made any difference.
Can't meditate. Tried my ass on the cushion, but the mind
raced off into cascading doom scenarios, a dog chasing its tail.
A bird dog would be good comfort, just now. We could walk off
and find a thicket to hide in, a tree stand where we'd be
invisible to the scanners and pokers and prodders.
Come find me, needleman and spinning x-ray pinwheels.
Of course my blood probably glows in the dark by now.
All they'd need to do was shine a light, and I'd light up,
a phosphorescent algae bloom washed up near shore.
Waves are lapping the stems of the old walls of the arch
at Pescadero. Lapping in the cold night dark, their crests
glowing with lambent red tide. The Pigeon Point light casts its beam
up coast a couple of times a minute. Under the redwoods
in a canyon just inland, total silence, except for this singed moon.
Wish I was there, ass on cushion, and my eye is getting most.
So what's left? I don''t believe in easy resolutions or quick fixes,
anymore. It's all going to be a dangled crab, bait on the end
of a pier where seagulls poke eyes and claws to shards.
Crab for dinner, when you're the dinner, needs more butter.
I can't meditate, or even visualize that moon pool calm,
I'm so dangerously angry. it's anger that I have left,
nothing else. That sustaining anger that is the animal self
refusing to die, the tenacity to hold on even when all other
aspects of this bruised self would just as soon let go.
I can't unbind this tenacity, so I keep on living, no matter
how pointless, insufferable. There must be a book
I haven't found somewhere that could make sense of it.
Missed connections, unappetizing snacks on a bus seat
arrowing across Arizona in failing air conditioning.
That stench. The smell it what gets to you first and last.
No point in hoping, they all get dotted and dashed.
The power of positive thinking, that awful guilty burden
they stick on you to blame you for your failings, remote reward,
relentlessly pursued, never fulfilled. You can't think your way
out of this. it doesn't get solved by thinking. Poems are not cures.
Tenacious anger of the predatory snarl, wounded jackal
backed into a corner, refusing to just lie down and be ended.
All I have left. No other rudder or keel.
No direction to go but forward, no steering, no compass,
no visibility, the river's roar fogged up, except of course the worst.
No sense of journey's end. Pretty sure that howling downstream
is the next rapids and falls. Boat's pretty banged
up by now. All you can do is float with the eddies and whirls.
Not even going to try to avoid banging the rocks. Only thing to trust
is the water's suck and surge around their borders.
The clearest water is in the fastest part of the stream.
Don't bother to care what's next. It's sure to be more
or less a disaster. You can't talk yourself into sleeping or solutions.
They come, they go. Here's a roadside thicket to rest in.
There's only one way to go, forward. The insidious urge to keep on
no matter what gives blank refuge. I can't seem to stop, myself,
or stop this long wildness ride.

Mortality & Futility

When you strip away all the balderdash around the Cult of Positive Thinking, when you realize that the New Age mantra "Your beliefs create your reality" is often used to blame the victim, when you get past all the self-help stereotypes and clichés, when you give up denial of suffering in the form of believing that adversity is somehow a good thing, you are left with one very fundamental fact that sweeps away all the rest:

Pain hurts.

Period.

This past week, I received an email from a friend stating, basically, in a few well-written sentences, what was wrong with an organization that we have both been members of. It was also a resignation letter. Now, while I sympathize with his feelings, and his attempts to clarify and codify the problems within the organization, I find I can generate little sympathy for the tactic of telling people off on the way out the door. it may be emotionally satisfying, but it doesn't solve anything. His letter is bound to shake things up, in a positive way; but if he departs the situation in frustration, he makes it impossible for him to witness that outcome, for himself.

If you can identify a problem, stick around and be part of the solution. Stage a coup d'etat, step in and take over, and fix things. In my lifetime I have witnessed many situations in which impatience and unreasonably high expectations have led to bitterness and judgmentalism, neither of which are helpful towards creating genuine solutions. So while I sympathize with my friend's feelings, I don't sympathize with his apparent unwillingness to be part of the solution. The organization in question could actually use more persons of his caliber and clarity of thought; and the solution won't be found if such people always leave in bitterness rather than stick around in hope.

This past week, I was feeling physically better: a little stronger, a little more recovered. Nonetheless, after the most recent blood test, I am still anemic, still weak, still have a long way to go towards full recovery. I spent some time on the phone with the nurses, with the doctor, discussing what to do next. In the end I felt like things had, once again, gotten worse rather than better.

That is an exhausting thought: for the past long period of time, it has felt like things have gotten worse and worse and worse, and not gotten better. Hope is a lie. Any attempts to think positive are an exercise in futility.

Sometimes it all feels futile, like I'll never get better, never recover, never get my strength and health back, never get out of this black hole, never get past depression, never reclaim a career path that allows me to pay my bills rather than deplete my savings. This is what living with a chronic illness is like. Or a disability. Or some other thing you cannot just fix. Sometimes the sense of futility is overwhelming. You get so close to the edge, you can see over it into the abyss. (As Nietzsche once opined, Remember that when you look long into an abyss, the abyss also looks into you.) It can take all your strength just to keep from tumbling over that edge, into oblivion. Some days you spend the entire time holding on by your fingernails.

Life just isn't much fun on those days.

Sometimes, I can make a poem, work with photos, make a change, do a simple household chore. (Fortunately, my plan for my garden as I've built it up over the past few years has been to make it low-maintenance, with mostly perennials. I've largely succeeded at that; which is good, as this past summer I've been too debilitated to do much more than the occasional weeding.) As I've often said, making art is the best revenge. It's also one of my very few genuinely effective coping mechanisms. The New Age self-development stereotypes and clichés, which are mostly mental, are useless for coping with chronic illness or depression, because chronic illness and depression are simply not things you can think your way out of. The body has to be involved, at the very minimum. Some days the pain is distracting enough that meditation is simply impossible, and the monkey mind simply cannot be effectively stilled. If you could simply think your way out of illness, everyone would. (Well, except perhaps for those professional Victims who derive personal power from their woundologies.)

There is one stereotypical truth that is fairly effective:

When you stop dwelling on your own problems, and go back to being of service to others, your own suffering is lessened by that much. This is not some power of distraction, of denial or avoidance. It is an application of the universal spiritual law that Shared pain is lessened, and shared joy is increased.

This past week, I've been in occasional written touch with an acquaintance who has suffered a seriously broken leg after being hit by a car, and all the trauma of hospitals, potential surgery, casts and braces, and feelings that follow in their wake. There is a loss of personal dignity. I sympathize with her sense of loss of personal integrity and personal power. Dignity and integrity and health are things we miss mostly when they're absent, otherwise we tend to take them for granted.

A lot of the stereotypical advice comes from well-meaning friends who don't really get it.

Without denying the strength of empathy and imagination to connect people, and get them to perceive and change their lives, there are experiences which many people can only offer useless advice about until they've been through those experience themselves. People mean well. But some don't seem to comprehend how exhortations to be stoic and strong are more harmful than helpful.

Such comments often end up making you feel guilty, like not being stoic enough is somehow a personal failure. As though you were somehow responsible for everything that's happened to you, and equally responsible for everything that follows. Sometimes you find yourself apologizing for weeping because you simply can't cope anymore, it hurts too much. You feel required to apologize for not being perfect, not being stoic enough, not being manly or macho enough, not being tough enough. You start to beat yourself up for falling short of these types of expectations of perfect behavior, perfect wellness, perfect coping, perfect management of your mind and body. As though you could think your way out of it all, and your inability to do so marks you as failing.

But, pain hurts. Period. Sometimes that's all that there is to it.

it's no failure to complain about being in pain: venting is healthy. When you're in pain, it's not whining, it's venting. And a good dose of weeping can be cathartic, even healing.

And you have to remember that some people want you to be stoic and tough purely because they are feeling uncomfortable and helpless in your presence. When confronted with suffering they can do nothing about, some people fall into distraction and denial; others offer advice that is usually more useless than helpful; and yet others will try to cheer you up so that they themselves can feel better. As the person who is ill, it can require a great deal of your energy to navigate this. It's helpful to remember that none of these responses to your illness have anything to do with you: these behaviors are all about them, all done for their sake, not for yours. Sometimes the best way to navigate is to ignore these tactics, and just let them go.

A brilliant, deep, loving minority of people, exhibiting genuine empathy and understanding, won't try to fix you, won't try to cheer you up so that they can be cheerful. These blessed few will simply sit with you, and share your pain, and lessen it simply by being present, by witnessing. In my experience, such loving genuine friends don't try to talk you out of anything, or try to distract you; they are often quiet, willing to just sit there with you and hold space for you to be safe and true within. This is more supportive and caring than most people realize; it goes a lot further towards relieving suffering than many other methods. Shared pain is lessened.

With regard to the loss of dignity that illness and broken bones generate, that occasional sense of feeling dehumanized and discarded by the medical establishment—with regard to all that, again empathy is the key. It doesn't take much to help a suffering person regain her dignity: you just have to acknowledge and witness those feelings, and be genuine in your empathy.

Speaking as the son of a doctor (who passed away three summers gone), and as someone with a bit of medical training and knowledge myself, I say without reservation that the way doctors are trained in medical school—the system, as it were—is very much the root of the problem of dehumanization. At the same time, this is now changing, as many medical college programs are admitting more alternative approaches to medical care, and acknowledging that a good bedside manner is something that can be taught. The vast majority of doctors who I personally know are very caring, human people. They encounter their patients as other human beings: the experience of witness, of genuine listening, of humility, is key to this approach. The other major contributing factor towards patients feeling dehumanized is the way that medicine is managed by the for-profit medical institutions such as HMOs—again, the system—in which doctors' choices of medical procedures and their desire to help people can be severely constrained. It's hard to do much with a required short appointment of only a few minutes, when you don't really get a chance to talk things over, and have the human encounter with the other.

I make no excuses for annoying doctors who are arrogant and don't listen to their patients' concerns. Yet in my own experience those kinds of doctors are in the minority. Most doctors really do want to help you get better. And the really caring ones will acknowledge that you're suffering, and won't prescribe useless platitudes along with whatever pills you might need.

Making art is the best revenge.

Making art is the reason I'm still here. I would have given up awhile ago, otherwise. I am just getting clear in my heart that I came very close to dying just a couple of months ago. Yet I'm still here. There must be some reason I'm still here, even if I can't imagine what it might be. I don't think about it all that often, to be honest, because that's a mental hamster wheel that doesn't serve me well. Frustration, depression, futility, increased awareness of my own mortality: these have all threatened my life in the recent past. You probably have no idea how boring feeling sick all the time can be. You probably have no idea just how crazy being cooped up at home can make you, driving you towards serious cabin fever, and potentially stupid and self-harming attempts to break free.

All you want, sometimes, is a single day wherein you don't have to deal with any of this, don't have to think about it, don't have to cope with it. Those rare days when you achieve that are like a vacation at the beach: a complete mental vacation. And even if it all comes rushing back tomorrow, for one day at least you were free.

Meanwhile, everything you do is a coping mechanism. Everything you do is in defiance of entropy. I don't have the strength to fix a few broken things in the house: entropy confronts me directly with increasing disorganization and chaos. Some days I just want to scream. The least little thing pisses you off—not because the little thing is significant in itself, but because it's the last straw on top not being able to cope with everything else. Well, I can't just now fix the lamp that gave up the ghost today. It will have to wait till I can. Which might be awhile.

Mortality clarifies your priorities, as well as juggles them. Fixing the broken lamp just doesn't seem important in the face of more urgent and deadly concerns. Will I need another blood transfusion soon? Will my fears of worsening anemia be true, or will I really get better, as promised? Blood loss is what almost killed me a few months back, so some anxiety around the issue is I think forgivable. And if I never stop bleeding, if the drug therapy doesn't work, what then?

Pain hurts.

Right now, I don't care. I cannot afford to care. I cannot afford to worry about it. I cannot afford the luxury of a negative thought, even though I am unable to Think Positive either, lately. A good day can be simply that you don't feel negative; not that you can get to the positive, but simply that you don't sink into the negative. I am left with the truths that pain hurts and shared pain is lessened, and even though joy has been hard to find lately, shared or otherwise, this has to be enough for now. For now. That's enough for me to have to cope with, for now. The rest is not my problem anymore, if it ever was.


Despite Everything

Needles

After the third blood transfusion, your veins are so tired
it's no wonder they're hiding from the needles. Three tries to find
the fountain. Three more scars, three sorenesses. It's fear that
makes them hide, that shuts us down. Tired of needles everywhere.
No more. Arms and hands scarred with needle-marks, after three
months of pokes and prods, sometimes stealing vials of life-force
blood to be examined, to run through interminable tests, sometimes
filling you back up again after you've been leeched dry. If you can
bleed your life-force out of your ass for three quarters of a year
and still be cheerful about life, you're a better man than me.
More power to you. You win. Not that I've ever understood
why everything in life must be a contest, I'm more collaborative
by nature. I don't see the point. Maybe it's remnant fear, the fight
for survival that had a point once, back when we still hid in trees; but
even then we took reed torches deep into caves and drew with needle
rushes eternal paintings. Mammoth and hunter changing shape into
one another. Even then we knew there was more than fighting.
Outside the caves we left handprints on straight thing spires of rock
broken against the sky, knitting themselves to clouds near phallic pillars
and window arches, knowing somehow these were sacred magical places,
called hoodoos, called gorgons, called stone needles. It's not hard to
mythologize the phallic needle threading the fist's web between thumb
and forefinger, making a pleasure of the poke; not hard to point out
the silliness of sexual competition when procreation's not at stake.
But not now. I'm tired of needles, phallic or otherwise. I've got these
needle marks, these track marks, these scars along arms, elbows, hands.
All my tracks are medical, I don't even have the junkie's ecstasy to recall.
A similar collapse of veins, though, an exhausted cousin of overuse,
internal scarring, rolling away, all used up. They use the feet when there's
nothing left. Look at my arms. I don't want to see a single needle again
for a very long while; I'm tired of being tired of needles. At some point
you get tired of being stoic, of living up to people's expectations of strength.
Actually most folks expect you to be just that.
Your mortality scares them with their own.
Which is why some friends won't visit you in hospital, even when they offer.
It takes a needle of their own, a stiletto in the mind, before they'll face it.
Most run back towards their pet distractions, fighting all the more to
pretend it's all okay. Some rare few become quiet, and sit with you,
their presence enough. The eye of the needle takes you to the end
of your rope. Can't you see I'm dying here? Not all bruises show on
the skin. Although today yesterday's needle bite on the inside of the arm
shows the colors of a tornado-laden storm around the point of penetration,
where yesterday's pointed embrace put the blood back in.
Outside the robins and cardinals are dancing inside the shelter of
the pine needles. Carpets of resiny brown points litter the root mounds.
Sore arms, sore ass, sore head. Little bits of flooding that no one wants
to deal with. Why should they? Bleeding out slowly, from life-force to
floodwater, through the point of the eye, a sometime broken skipping record.
Quit needling yourself. Make a fist, tie off the torniquet above the rattler's bite.
Sure the inside of your elbow hurts, only a point more than myth, and only
until the next extraction or transfusion, the next set of needles. The sun's dagger
makes a temporary needle along the labyrinth, a shard of light.
Let the new blood fizz in you, the soda of provisional survival.

The Anemia Diaries

Don't ever let anyone convince you that the mind and body aren't one.

Those ultra-brainy philosophers walking around in a mental fog; those cyberpunks who want to merge with the Net, achieve cybergnosis and leave the "meat" behind in some kind of digital ecstasy; those mavens of the mainstream culture who are all head no heart; those poets who think it's all a mental puzzle box game; those writers who are so locked into their words that they forget they have lungs; those denizens of everyday life who live in their heads all the time, and forget they have bodies, or wish to.

None of that. They're all wrong.

That the mind and body are one has been brought home to me, forcefully, this past week, with events that serve as a reminder I'm not likely to forget any time soon.

Before I go any further, this is going to be one of those rare personal essays wherein I give more information about what's been going in my personal life than I usually reveal. The reason is, there’s a good story here, and some good lessons, that emerged out of the adventures of the past few days.

Another thing I rarely do, I also do here, that is: to write this in diary form. A lot happened in a short period of time, and even leaving out the inessentials, it’s a bold tale to tell.

•

Monday, May 24

Last night was a rough night. I think I have another ear infection. Swallowing is incredibly painful, yet I must do so regularly, because fluid is draining into my mouth from my eustachian tubes, or sinuses.

Today I went in for a doctor’s visit. The urgency was the pain swallowing, but I also wanted to talk over everything that’s been piling up these past few weeks. I have been feeling progressively more tired and sick for months now, and life had become an uphill struggle, a depressing daily grind just to survive. I felt like I was getting worse, and I wanted to talk things over. Because my mind was feeling foggy, I even wrote everything I was concerned about down, so I wouldn't forget.

The doctor visit was good, actually very reassuring. My concerns that could be addressed were addressed, or at least acknowledged. There are still some things in play. I was in misery, because the night before a growing pain when swallowing had blossomed into what the doctor discovered was a fully-blocked eustachian tube (which at first I thought was an ear infection), and swallowing that day was literally making me double over in pain; so I had eaten almost nothing. They irrigated my ear, and gave me some drops to help with the blocked tube, and by nightfall the pain had decreased enough that I could eat. (A few days and drops later, I can swallow without pain for the first time in a week.)

The clinic also drew some blood, to run some tests, and check on where my various levels were. The last time blood had been drawn, a couple of months prior, I had been slightly anemic, but otherwise my bloodwork was quite good. (My doctor has more than once told me that, despite my chronic illness, I have the bloodwork of a healthy man much younger than I am.)

Later in the day:

Feeling like crap. Hours spent at the clinic and at the pharmacy waiting to see people, and the follow-ups, and finally getting my meds. I actually was so tired at times that I managed to almost nap. I’m home again now, and I’ve actually turned on the air conditioning, to cool off the house somewhat. As much as I love this unseasonal tropical heat, I can’t handle it when I’m this weak and sick. The doctor and I went over everything I’m concerned about, all the past medications, my current foreground pains and worries. I got some clarifications and questions answered, and feel better about things.

It still hurts like hell to swallow, and I’m tired out from the pain. Now I’ve put some prescribed drops in my ear, and hope that I’ll be able to sleep without too much pain tonight. Also a migraine brought on by this long stressful day. So, pills taken, eardrops done, resting now, in the cooling air. Even with the AC I’m not going to cool it down to ridiculous levels; just below 80 is fine, down from 90-plus outside. In the evening, in the cooler air, I’ll turn off the AC and open the windows again for the fresh air.

I am so wiped out. I’m taking the rest of the day off. I’m trying to get some blood sugar in me; it’s slow going, because of the pain when swallowing.

Later, late night:

Two rounds of ear drops and the pain is thankfully greatly lessened. I’m drinking chamomile tea, and getting ready for bed. Another round of drops before bed, then hopefully I’ll sleep like a log. It was a tough day. But you know, I don’t fee depressed, and I don’t feel despairing. I’m not ready or able to jump up and down in glee, just yet, but I don’t feel like hell either. I feel pretty good, relatively speaking. I got through a very challenging, painful day.

•

Tuesday, May 25

Well, I said I was sick. . . .

And now I’m in the Beloit Hospital tonight getting two units of red blood cells.

I went in to see my doctor at the clinic yesterday, because I have continued to feel bad ever since March, and wasn't feeling like I was getting any better. Also, starting Sunday night I had a bad earache and extreme pain when swallowing; I've had ear infections before, and it fit the pattern. It turned out that it was a blocked eustachian tube; they irrigated my ear, and gave me some drops, and I felt much better by bedtime last night.

But they also drew some blood for some tests, just checking stuff. The next afternoon, today, I received a phone call from the clinic nurse, telling me to drop everything, get to the hospital Right Now, so that could give me a transfusion of two units of red blood cells. My red blood cell count was dangerously low.

This is not the sort of thing one likes hearing on the phone while waiting to check out at the grocery store. But I followed instructions, dropped everything and drove to the hospital Right Now.

Apparently my CBC (red blood cell count) was 6.4, which is half of what it's supposed to be. Apparently, my chronic illness, which involves bleeding ulcers in the colon, had depleted my blood count over the past few months to the point where I was two quarts low and needed a refill. Who knew? The leakage was gradual enough that I had adapted all along the way, and even though I felt bad, it was normalized, not a radical change. It's amazing what you can come to think of as normal, if the process is gradual enough.


(taken with my camera phone, since my camera was at home)

The hospital bureaucracy was a real mess. I was supposed to be an outpatient, but it was late in the day before I got the message, so then they wanted me to check in overnight. Which is fun when you're unemployed and have no health insurance. Well, I'll have to deal with all of that later.

My status now, some hours later, after I’d been given a bed, changed into a gown, and they started the transfusions, is that they did switch me back to outpatient status, but still I'm in a bed in a shared hospital room, receiving two units of blood. I'll be going home tonight, but it will be really late at night. I’m okay with that. I don’t want to spend the night here. A friend will take me home if necessary. It'll probably be 2am, but I'll be in my own bed for the night, and resting better.

The nurses say that I may actually be okay to drive myself home; after all, the transfusion should bring me back to a semblance of normal strength. They gave me a Benadryl, and they do monitor the start of each bag of red blood cells, to be sure there’s no allergic reaction. The nurses like me, and I like them; it comes from being a doctor’s son, I know all the gallows humor that hospital staff have to keep themselves sane. The nurse sits with me as each bag starts, to monitor. Your blood pressure goes way up for a few minutes, as the inflow raises the pressure; these are the highest BP readings I’ve ever had, 178/80, for example. Then they come back down to normal, as the flow steadies. It’s a very strange sensation, feeling, the pressure of the saline and red blood cells mixed, going into the back of your hand, where they finally placed it IV; they were better able to thread the vein there. I could feel the pressure of the fluids coming in, and I could taste salt and sweet in my mouth as they began. I sat there thinking: who owned these red blood cells originally? where are they from? And I felt deep gratitude, even as I also felt that I was being invaded by something foreign, alien, not yet mine. I guess that it takes a few days for the red blood cells to incorporate, and stop feeling alien.

My imagination veers over to an X-Files scenario, where these new cells are fizzing, full of nuclear energy, acid-green-glowing supercharged modules coming into my bloodstream, taking it over, mixing it in. I swear I can feel some aura energy left over from whoever originally owned these cells; like a lingering static charge. You lay there in bed, and takes a couple of hours per bag to get them into you; so you have lots of time for your imagination to wander.



In the morning, I'll go over to the Health Center and get another blood test, to check levels, and if they need to they'll give me another unit tomorrow.

Well, I've been bleeding from the ulcerative colitis since last October, since this current episode began, so this has snuck up on me. It sure explains why I've been feeling tired and sick these past few weeks—feeling worse and worse. I guess it crept up on me gradually enough that I didn't realize. So here I am.

I'm not asking for anything, except maybe for some good thoughts to be sent my way. I could use the spiritual support. I just wanted to let some people know what had happened. I almost don't want to tell anyone, but I don't want to do the Stoic Norwegian thing anymore. So, thanks, and help.

I'm not feeling depressed. I'm stressed but not freaked out. I like the nurses, they like me, because I can give hospital humor as good as they can—it helps having had a doctor for a dad, I've been around ER humor forever. A couple of the nurses have said I'm a real pleasant patient, I guess because while I ask questions about everything I also cooperate. Actually, I do want to get this done, and go home, and I do feel better.

It's funny—I'm not depressed, not even ia little bit. Even with this massive IV sticking into the back of my left hand. (It doesn't slow down my typing, yippee.) It helps to know that I'm supposed to get out of here tonight.

Hope your day was way more fun than mine.

•

Wednesday, May 26

They filled me up with two units of red blood cells, and let me go home, after all, at 2am. I was able to drive myself home. I actually felt really good, and newly energized. They say that's normal. It's also normal to get a "hot flash" when getting a transfusion, and I did get that.

Halfway through the second bag of red blood cells I felt my brain come back online. I felt sharper of mind than I have in months. It was like a switch was thrown, and all my mental and spiritual circuitry was re-energized, powered up again. I guess I’d been operating on a trickle of power for a long time, and hadn’t even realized it.

Today I went over to the Health Center, where they drew some more blood, just to check my CBC. I also spoke briefly with the doctor again.

I feel ridiculously energized. Almost too much. I feel giddy, and I talked too much at the Health Center, like I was wired or manic or over-caffeinated. I freely admit that it’s hard to trust this giddy manic energy. The contrast between Before and After is incredible. I haven’t felt this energized in months, probably since sometime last year. It’s a little overwhelming. Maybe this is how it feels to be manic, if you’re a manic-depressive. I feel like I can do anything, even though I’m restraining myself from doing anything too stupid. It’s not an entirely comfortable feeling, and I don’t entirely trust it.

I drove around town doing some errands after being at the Health Center, and I realized my senses were much sharper, and I was more attentive while driving. Again, the Before and After is a big contrast. My mind is so much clearer today!

I’m trying not to overdo it. I came home and rested for awhile. A little later, I want to do some weeding in the front garden; I’ve neglected it for weeks, because I just haven’t had the energy.

I wonder how long this fizzing energy buzz will last? All those little alien blood cells, fizzing through my veins, giving me the strength of ten.

•

Thursday, May 27

Another hot day. I’m feeling tired from the tropical heat. I’m sitting on the porch, a little thoughtful and quiet this morning, slowly drinking my orange juice.

It’s starting to hit home with me that I dodged a bullet. It could have been much worse than it was. I just missed an incident that could have been genuinely life-threatening. So today I’m feeling quieter, less giddy, more thoughtful.

I’m feeling tired again, but it’s “normal tired,” not “anemia tired.” The weather this week is record hot, temps in the 90s all week long, and that’s always tiring for everybody, anyway.

I think I overdid it yesterday. My back is a little sore, possibly from weeding in the garden in the late afternoon, in that burst of energy I was feeling. I probably did too much, and thus overdid it. I’ll pay for it with sore muscles for a few days—but those muscles have been idle for many weeks because I didn’t have any energy at all, and was exhausted all the time. Now, today, I don’t mind a little soreness, because it’s a signpost on the road back to something like normality.

Still, I have to stop and think about things today. I still feel more energized, and stronger, than I have in weeks or months. I’m just feeling a little more mortal, as well.

•

Friday, May 28

Writing a letter this morning to my family and friends, about all this, a summary, an update, a warning to myself of my own mortality:

Don't ever let anyone convince you there's no connection between mind and body. The next day after the blood transfusions, when I woke up, I was really energized, fizzing with alien bloodcells (sounds like an X-File, I know), and charged. I got myself over to the Health Center for another blood count, and a brief talk with my doctor; they were going to run the test, then let me know if I needed another unit of blood. I haven't heard anything yet, so I'm guessing my blood count is okay, at least for now. Anyway, I had such renewed energy yesterday that I was practically giddy at times. This anemia had probably come on so gradually that I didn't realize, it had started to seem normal, and the contrast between Before and After Hemoglobin has been intense, even shocking. Like I said, fizzing, and giddy. I got a lot done yesterday.

I'm also wondering how much of the feeling sick and tired and crappy over the past couple of months was really all about being anemic. I suspect more than I realized. I'm going to pay close attention over the next few days, and see what feels different.

Today I mostly rested. I woke up feeling tired—but normal tired, like you might feel after tiring yourself out the day before from having worked to satisfaction, not like super-low-energy-illness tired. I may have overdone the physical exertion yesterday. I did a little weeding in the garden, and grocery shopping. I may have overdone it, because my lower back and my bad knee hurt today. I'm going to have to watch that, and not overdo it anymore. This is going to take getting used to.

The next thing to deal with is plugging the leak, as it were. I'm seeing the GI doctor in a few weeks, and then my regular doctor again. (Medical bills are going to start piling up for me, which has me a little worried, but so far not totally freaked out or panicky. And I don't feel depressed, either.) This might take time to work out. I've got the forms to apply to the Hospital for financial assistance, and I'll get them figured out over the next few days, with help; those kind of forms are challenging for me, at the best of times.

Also, my mind feels much sharper than it has in a very long time. I realized yesterday that I had sort of come back "online" mentally, and all my senses were super-sharp again, like when driving. The transfusion has really made a difference. Now I just need to go on from here.

Anyway, that's the news. I just wanted to follow through with an update. I feel much better now! I think I’ll go for a walk!

•

Saturday, May 29

The Memorial Day weekend. I plan to avoid the crowds. I went over to the Veteran’s cemetery, though, where they always have a beautiful flag display this time of year, and made some photos. I also finally located the gravesite of a couple who had been family friends, in my Dad’s last years, and who had themselves since passed over, from age and illness. It was a quiet hour communing with the beloved dead.

I’ve been sleeping well. So well, in fact, that I wonder if all that insomnia I’d been having for months was related to the anemia. Other things are also not bothering me like they did.

I’m not well yet, though. I still have bleedings. It seems wasteful to be given two bags of blood, then continue to bleed it out again. But that’s my chronic illness, for now, still active, not fixed. I see the doctors again, soon, and my goal now is to stop the leak, and get well. All my focus is on that, for now. It’s more than enough to cope with.

In the meantime, I have all this renewed energy. So I am working on art projects and self-marketing projects (such as material for selling my photography services for weddings, etc.), while I have the clarity of mind and focused strength to do it. I’ve made great progress, this past week, on choosing photos for a possible future expedition, and getting them printed. I feel alive, again, even if there is still a shadow on the horizon.

So I’m working as much as I can on those projects that will hopefully help me move on with my life, once I’m well. You can’t wait to do this stuff till alter; you have to do it now, even as you might have to spend more time in hospital. If you wait to do it till you feel all better, or until you’re cured, you’ll never start, and you’ll never get it done. No waiting. Just get on with it. And, to be honest, it keeps my mind focused on mostly positive things, and keeps me from worrying too much.

Honestly, I still don’t feel anything like depression or despair; some worries on the horizon, some anxieties, some late-night phone calls to friends asking for moral support. But nothing like before. Nothing like the void, the abyss, the dark night. There have been lessons emerging as fast as arrows shooting by, if I can but catch them out of the air. Some of the lessons are very grounded and simple: Don’t worry tonight about what you can’t do anything about till tomorrow, anyway. Just let it go, and pick it up again when it’s time. Meantime, make of the day what it can be.

Uphill Struggle Against All Odds

Most people don't realize how much your health colors your perceptions, much less your ability to be creative. Most people don't ever think about it, until confronted with it. Most people who are generally healthy, barring the occasional cold or flu virus, have no clue how those who aren't feel, day to day. They take for granted that normal activity means you can do just about anything you want to. There's nothing intentionally malicious in this, yet things assumed in ignorance can be just as hurtful. One thing healthy people don't ever think of: there are days you cannot see the light at the end of the tunnel, and you have no belief whatsoever that you'll ever get well again. Another thing healthy people never seem able to understand (perhaps till they get sick themselves) is that each day can be an uphill fight, and they take for granted that you can do things that maybe you can't. When you're enduring a chronic illness, having to spend a lot of precious daily energy budget on educating the ignorant can be frustrating, taxing you beyond endurance. But you're stuck with it: education is the only way to get folks to comprehend. (Empathy is usually too much to hope for, but you have to start somewhere.) You're not allowed to just complain, though: you have to be stoic, righteous, and teach. Pity and sympathy are offensive: they're shallow, sentimental, and self-serving, and do not evince real understanding. A lot of the time in life, people listen to your words but they don't hear you.

The past few weeks I've been so weak and sick I've only been out of the house a few times, and never for a long time. For someone who loves spending his time in the outdoors, camera in hand, that can be pure torture. Thank all the gods for my garden. One of the reasons I've been developing a dense, lush garden since I bought my home is to use it to make photographs. But another reason is to be surrounded by half-wild greenery, so that even on a day when I'm too weak to do much I can still walk around the house and get lost in the greening. Gardening is a ripe spiritual practice, full of potential and healing. The lilacs are in full bloom right now; I trimmed a few flowers and put them in a vase in the dining room, their scent permeating the air, the scent of May Day, of Beltane, of spring. Yesterday, before it began raining again, I did some weeding. A half hour of intense on-your-knees work and I was panting hard, heart racing, and had to stop: such is the curse of a chronic illness that produces debilitating tiredness. Any exertion, literally any exertion, can leave you panting.

A few months after my father died, and a few months before my mother also died, I was diagnosed with ulcerative colitis coupled with irritable bowel syndrome. (Principal side-effects are debilitating tiredness, a lot of colonic bleeding that can produce anemia, and a severely touchy digestion.) Those are all literally life-changing events; if you think they don't affect how you make art, or affect the art you make, you're fooling yourself. (Medical trivia: if your doctors call it a "syndrome" that means they recognize the symptoms, but they don't know what causes it, and they don't know how to cure it.) I also went on a gluten-free diet at that time. That's all tied together: a very touchy digestive system, with the goal to still eat well while at the same time removing as many irritants from the diet as possible. I also had to cut way back on certain vegetables that are irritants, like broccoli. (I won't miss cabbage; I hate cabbage anyway. The only good cabbage is that which is placed in a clay pot with peppers and other ingredients and buried in the ground for weeks or months, to make authentic Korean kimchee.) There is a stress component to ulcerative colitis: high stress can bring on a flare-up, or relapse, or whatever you want to call it. It's no wonder an attack came on after Dad died. Last fall, a flare-up which is still in progress was brought on by the stress of dealing with my uncle's death, and my aunt's very nasty passage into Alzheimer's. I was able to build up enough strength to go on a roadtrip to California and Oregon this past February, but since I got back home I've been mostly sick. Chronic illness means you can be sick for months at a time; I'm going on seven months of illness right now. It's hard to feel like it will ever stop. I've learned not to talk about it, even when asked, because people want to hear that you're doing fine, not that you're not. No one likes a complainer.

Your appetite goes away, but you might not lose any weight, because you're unable to undertake even normal exercise. You're just too weak. Sometimes I live vicariously. I often enjoy watching Anthony Bourdain's television show No Reservations, which is sort of a punk-foodie show. If Julia Child was the classic American foodie show, the very first foodie show on US television, the equivalent of classical music or French accordion restaurant music, then Tony's show is the foodie equivalent of punk rock, with maybe a little heavy metal thrown in. Even though I'm classically trained, a composer with degrees in music, I've always been more of a punk rocker in attitude than a music-conservatory high-art snob. All music is good, though—as are all things foodie. (Is Alice Waters the Chopin of foodies? Is Ferran Adria more akin to Charles Ives or to Olivier Messiaen? Are raw-food ideologues more akin to bad hip-hop or to bad lounge music? I merely speculate; just because it's fun.) What I love about TV shows like No Reservations is that Tony Bourdain loves life, loves food, isn't afraid to be wrong or look stupid, and lives life at full speed. There are days when I can barely get through the day's chores, and it saves me to be reminded that you can still life with relish, with gusto, with joie de vivre! even when you're not able to do much more than boil rice and fry bacon. I have a small shelf of cookbooks, which I love to keep on hand and sample from with sensual pleasure, even though most days I don't have the strength to cook anything very fancy. Some days plain-and-simple and well-loved beats any four-star restaurant.

There is eros and thanatos in every life experience, including that of being ill. Some things that have no cure come to be recognized as bearing gifts. Focus too much on pathology and you become pathological. (You cannot look into the Void too long without the Void also looking into you.) It's not a matter of trying to figure out the "purpose" or "meaning" of an illness, as though it were a puzzle to be solved; rather, it's about learning to create meaning within the sphere of having to cope with and endure your illness. In other words, how you continue to live life with pleasure and love even when it's a constant uphill battle and you often feel like you're sliding back down no matter what you do. Find "meaning" in that. There are those among the generally-healthy who will try to encourage you by telling you to seek the lesson in the wound: a new age quest for meaning in all things. But such pseudo-wisdom ignores the dark gods, the dark night of the soul, acedia, and the as-yet-untransformed aspects of deity. There are other who quote the Nietzschean doctrine of "Whatever doesn't kill you, makes you stronger." I knew a cancer survivor once who rephrased that, with delicate and forceful relish, as "Whatever doesn't kill you, missed." Period.

Living is not just an act of will. Nor is it a purely intellectual exercise. (Well, I suppose for some writers it is, those whose lives are tepid and lukewarm and untroubled by actual sorrow, for whom is more virtual than real. Long may they wave.) Being sick brings you into an intense awareness of your body unlike any other process; except perhaps open-hearted, little-toe-curling, fulfilling, tantric sex. Healthy people take for granted that they can have sex any time they want to, that the flesh will always be as willing to perform as the soul is to contemplate. Sensual pleasure, even sexual arousal, is available to me even in my nights and days of debilitating tiredness—eros is always present—but fulfillment may have to be postponed. I tire out more easily than I used to; I need to take pauses to get my breath back. I'll state for the record this truth about love and sex, which I have learned from being sick and tired all the time: lovers who expect me to go out of my way, and do all the work of relationship, will no longer be placed first among equals. If you can't do at least half of the work to meet me halfway, you cost me too much effort, and I can't afford to waste my time on you. Period.

I pause for a moment to make something iconic. A piece of digital art, perhaps, or a literal icon. Yesterday as I was out driving around town doing some shopping errands, an idea for a multimedia series of images came to me. All the same image, but presented in several ways, showcasing the various media I work in. A series of small icons, to be tucked away in the corner of the gallery, where some might not even notice. People ordinarily overlook the small corners, anyway, and focus on the oversized, prominent, gaudy big art in the middle of the wall. Big and loud is better, they say; even when it's not.

I know I'm still alive, despite all my worries about not having the strength to work for a living, despite whatever internal bad weather my body is putting me through today, despite shivering on even warmish days because I'm anemic—despite all that, I know I'm still alive because I can still make art. I can still write something, whether a poem or a small rambling essay. I can spend a few hours seated at my worktable transcribing, proofreading and correcting a musical score. I can get out the Dremel rotary tool and carve something, an icon, or a symbol, or a simple picture, into a slab of wood. I can garden as much as I can till I have to stop. I can draw something. If I've become a better writer, more fluid and focused, it's because I've had a lot of practice from having nothing better to do on those days when I've been forced to sit on my ass all day. Of course, now that I've been booted out of, or chosen to leave, every writing community I've ever participated in, I could also be going down a dead-end path in my writing, and not know it. On the other hand, those who booted me out displayed exactly the same sort of intolerant, judgmental ignorance that the worst of the generally-healthy display towards the chronically-ill: since we're not supposed to "dwell on" or otherwise talk about being sick, we get blamed for being unable to live up to the ignorant expectations who don't want to know what's really been going on. Call that judgmentalism whatever you will: some psychologists call it pathological narcissism. Everybody has a shadow side.

One other aspect of this chronic illness is that it's not blatantly obvious. To most people I don't look like I'm disabled, or sick. It's largely invisible to them, until I get into a situation where I really have to sit down, right now, and then they get alarmed. But that's how it is: you can be going along fairly okay, and suddenly you hit that wall of exhaustion, and you have to stop, right now. There's no choice. It's not something you can just push through or tough out in some macho-man fantasy of playing through the pain. For one thing, if you try to just push through it by sheer force of will, you make it physically worse, and you might need two days to recover rather than one. There are always consequences. For another thing, you have to learn how to manage your daily energy budget, or suffer those consequences. So you have to learn to say "No" to things that you do want to do—there's no getting around it, you have to say No sometimes to one thing so that you can say Yes to something else. It becomes a matter of forging priorities.

I pause again to necessarily visit my most familiar walls in the house: the bathroom. I'm thinking about installing bookshelves. Maybe a favorite photograph or two to look at. Perhaps a small self-contained stereo with a CD player. Things to keep the mind engaged while you pass the time where out of necessity you must pass the time.

You have to talk yourself into doing what you want to do. It's an uphill struggle to hook up to that inspiration, to keep your life positive and affirming. Making art is one of the few things I know to do which never fails to improve my day. Even on my worst, most challenging days, making some kind of art, making anything, keeps me feeling like life is worth living. Perhaps most generally-healthy people don't understand how important even such a small thing can be, to give you a reason to go on living. When the quality of suffering is high, the mercy of small gods is deep.

Is it worth it? It can be. It can be worth it just to have gotten through the day feeling reasonably okay about yourself, ready to wake up tomorrow and see what's changed. The uphill struggle against all odds can be worth it, even on those days when you feel like you've just been treading water, not getting anywhere, if you can remember to look back on the day and say: look, an icon; a poem; a piece of music. I bloody well did that! That's good enough.