The Oracular Advice of the Morning

The oracular advice of the morning recommends that I slow down, take a few deep breaths, and not try to do so much. The irony of this, for me, is that I constantly feel like I'm not getting enough done, because it takes me so much longer to get things done than it used to, and than it does for everyone else. But then I have to remind myself, and struggle to be patient with, the context.

When I was in Arches National Park in Utah last year, there was a strenuous hike on a challenging trail that I wanted to do. I couldn't do it, even though I wanted to. I got halfway along that journey, then I had to stop and rest for awhile, and turn back. I very suddenly ran out of steam, which can still happen. I sat in the shade of a dramatically wind-shaped tree (which I later made photos of, and even later painted a portrait of) for awhile, feeling sorry for myself, while both younger and older hikers hurried past me in both directions, in the 106 F degree heat.

And I imagined a dialogue with a younger, stronger, healthier man—perhaps from that couple in their 20s going by right now, perhaps a younger aspect of myself—in which I had come to some sort of peace with my journey. The younger asks the older if he can make it to the top, and the older says no, go on without me. The younger, who expresses concern, asks if that's really okay. The older man, who realizes the truth even as he speaks it, says: I was sick for over twenty years. I almost died. That I managed to hike this far up this mountain, even though I didn't get any further, is a miracle. That I'm here right now, even this far up the mountain, only halfway along this trail, is amazing. I am amazed that I have come even this far.

And that's true.

I constantly deal with feeling impatient about how little I can do, compared to my friends. I still have days of suddenly having no energy, for no reason, like I used to when I was sick. (Like I did yesterday.) I still have to remind myself that I might now at last have the strength for "normal" activity for a few days in a row, but then I must rest. Oracles aside, today has to be a rest day. I don't have a choice.

Yes, my garden looks ragged (any friend who wants to come visit and help me with that will be treated to a fabulous meal as reward), yes I have some paperwork and other mentally-engaged work to do this week that takes me twice as long as anyone else to get done, and so on, and so on. Ironically I am being told to take a break, and all I can do, despite brain fog, is worry about what I am not getting done.

Yes, I know, waste of energy. But before you throw more new age positive thinking aphorisms at me, well intended perhaps but clueless and ignorant of what I've actually experienced, just remember: YOU don't have to deal with the aftermath of a lifelong illness that almost killed you, so shut up about what you think I should be able to do. That I'm here at all is a miracle. That I've climbed even this far back up that cliffside trail towards something you call "normal life" is nothing short of miraculous. (I say this not only to the well-intentioned friend, but also to the voices in my head.)

I'm just going to sit here for awhile, sip my tea, and enjoy the view.

Maybe I will never get to the end of that trail. Maybe I will never be able to see the view for myself from on top of the mountain. Maybe all I will ever be able to see is the view of the opposite cliff from my vantage halfway up the canyonside trail.

And that's amazing. Look at those rock shapes! And see over there, you walked right past those windflowers and petroglyphs on your rush to get to the top! I'm stopping and taking ten and looking around me right now. I might never get to the top of this mountain trail. And someday I might. Just not today, maybe not for a few years more.

Meanwhile, the view is pretty amazing from right here.

Now, hike on, and leave me in peace, right here, right now.

To all medical personnel

Dragon to all medical personnel:

Yes, it's true, I am a difficult patient.

There are reasons for that, however. Let's begin with the truth that my medical situation is unusual, even exceptional, with a lot of very atypical factors involved, making me an exceptional patient. Therefore my treatment requires customized knowledge of my situation, rather than the answers you keep suggesting that work for ninety percent of patients, but not for me.

Yes, I'm a difficult patient. But that's because I never feel like you actually listen to what I tell you, so we spend all of our visits together with me reminding you why what you've just ordered has already been tried and didn't work. If I seem frustrated at my lack of progress, that's largely why.

Yes, I'm a difficult patient. That's because my father was a doctor and I've been around medicine my entire life. I'm a lot more informed than your average patient, I know how to go do my own medical research, I speak the jargon pretty well for a layman, and I know enough Greek and Latin to be able to translate the jargon back into English when I encounter an unfamiliar phrase. Also, I was trained in science, and I'm probably just as smart as you are, intellectually. So when you talk down to me, you're wasting time for both of us. If I get frustrated at my lack of progress, it's partly because you waste most of our visits together going over what I already know, rather than helping me figure out how to move forward.

So, here's a little bit of advice when dealing with an atypical, difficult patient, like me: Listen to your patient. He knows what is going on, and he can report his symptoms to you very clinically and accurately, if you let him. Fucking take the time necessary to educate yourself about your client's unusual constellation of problems, so that together you can figure out what to do next, instead of constantly going over the same ground. Your patient is under a tremendous burden of stress surrounding his situation, and if you're not actually going to be helpful you are in fact making things worse. And finally, don't blame the patient. He really has tried everything that's been suggested to him, and really, truly, most of it really did do more harm than good.

Your difficult patient does want to work with you to move forward. He has in fact explained all of this to you before, has in truth been asking for your help all along. You just haven't been listening.

Is it any wonder, therefore, that your patient appears to be acting like a difficult patient? Is it any wonder that he is frustrated and impatient and annoyed with you? If you will just kindly fucking catch up to him, all is forgiven, and can we please get on with it.

That is all.

Hull Breach

from the Surgery Diaries

It becomes clear to me why having this ostomy makes me feel so unattractive. I'm fat, I've got an ostomy, I've never felt so sexually unattractive as I do now. And I've been rejected numerous times precisely because of the ostomy. Then again, what do you expect? Most people can't deal with things outside their normative boxes.

And I figured out why, this morning, knowing that friends have been sleeping together in the next room, and myself wanting to go nude today but knowing that I probably won't. I feel completely open and naked already, so why bother?

This isn't a warm-up to a pity party. It's a moment of clarity. It just happens to be about stuff most folks never want to have to think about.

It's that this ostomy is like a breach of integrity. A hull breach. The appliance is like a patch job on an oceangoing vessel, and you have spend a lot of attention on the patch job so that the ship doesn't sink. A breach in structural integrity. If you don't give it lots of attention, this ship will fail.

There are days when I hate it. Hate having to give it this much gods be damned attention. Hate having to think about it all day long, as it constantly demands my attention. Hate having to deal with it when the appliance does occasionally fail, ad there is a mess to clean up. I have lost entire days to this, where nothing else gets done. Some of my friends who have had friends with ostomies, or have themselves had a short-term ostomy, think they understand, and they mean well, but they don't, really. A colostomy is not the same as what I have, a high flow ileostomy. A colostomy is still a once or twice a day thing. But I have to empty the bag multiple times every day, and if I wake up in the night, usually then as well. It's like a demanding baby that won't stop crying. It's like a Siamese twin you cannot ignore. It requires hours of your attention daily. Not minutes. Hours. So there are days when it is hard not to resent it, even when you know it has saved your life and is keeping you alive. Even though I am grateful for being alive, and no longer have a deadly chronic illness, I have this shitbag now, and my quality of life is not significantly improved, nor has it reached the level promised to me when I first agreed to this surgical journey. Life hasn't always gotten better, although it is sustained. I am alive. I am still here.

This breach in hull integrity not only makes me feel unattractive, it is proven to turn people away. No one wants to hear about it. It brings out in many people that same kind of uncomfortable avoidance and insecurity that you see when someone who has never thought before about their own mortality confronts a dying child: when what they have always taken for granted is called into question. People might care for you, but they no longer know how to express it. With an ostomy, even a hug can be a problem. You can have no idea how isolated this hull breach can make me feel. It is capable of denying me even simple basic human contact. How would you feel when you see even people who care about you become tentative about giving you a simple hug? When you need hugs more than you ever have before?

I am struggling with this isolation, even alienation, a lot right now. This entire week has been a battle to just stay afloat. Yes, its depression, shut up with the convenient and misleading labels. I struggle against throwing a self-pity party. I struggle all the more when I see everyone around me making contact, making connections, and I feel excluded. People ask me why my mood is not better, when so many things seem to be going well for me, or at least better. They want me to be upbeat and positive, and the best I can do right now is not be dark and brooding. Call it neutral bouyancy. Call it trying to trim the battleship so that the hull breach doesn't sink it.

A couple of months ago I wrote a song. It was one of these occasional pieces where I sit down at the table or piano, with no plans, then inspiration takes over and a few hours later I have a finished poem, a finished song, a finished essay, usually needing little revision. Experience has taught that I can rely on this kind of inspiration happening often enough to be pragmatic about it. I don't take it for granted, and I also know it will come over me a few times a year. So a couple of months ago, I sat down to play and started working. The words came with the music, at the same time, which is a little unusual. The song, more lieder than folk song, is titled "Still/Here."

It's a simple song, musically, but there's a lot of emotion in it. The song is about survival, about having survived death, on a level that's underneath the surface of the words. You are still here. You are still, here. What lies underneath a song like this is hard personal experience. Its not obvious in the lyrics, although as with poems if you look for buried layers of meaning underneath the metaphor you can find them. What have you survived, that you are still here. What have you lost, that returns to the light.

Last night, I performed this new song for the first time in a concert setting, before a room full of people who had never heard it before. You could hear a pin drop. It was perhaps a little scary. The song ripped something open in me, opened a door to these emotions and deep feelings I'm talking about this morning after. I felt naked. (I feel naked, still, lying in bed in the morning, here, not having put clothes on yet, and not really wanting to.) What small amount of the gift of bards that I might possess was in full operation. I really felt the song as I was singing it. Felt it on every level, more than I ever had. There was applause, although I pretty much ran off the stage. I had to step out of the building, and get my feelings back under control. You know, lest I be weeping uncontrollably, that sort of thing. Getting back to center took awhile. And I have been feeling open and vulnerable ever since. I got almost no comments about the song afterwards, which I don't know what to think of. It would not be the first time that an audience doesn't know how to respond to something of mine. I can guess why, and I don't feel like it at the moment.

I don't feel fragile or hungover this morning, the way an emotional experience can leave you the next day. I feel strong. I also feel very open and very vulnerable. I will be performing the song once again tonight, though I doubt it will be the same. I imagine it will be much more controlled, less of an upwelling of deep waters flooding. After all, the flood already happened, the waters are still settling. I am very much feeling my feelings this morning, so there won't be any surprises on that front. The emotional hull is breached as well as the physical. How do we go through our lives with these walls keep us so separated and safe? When that's an illusion, the grace of this wound, and it is a grace, is that I have no more illusions about safety, security, or boundaries. I don't take any of this for granted anymore.

I am still here. The rest of it is a matter for moment-to-moment attention. Keeping the ship afloat, checking the hull patch every so often, making sure we're trim and sailing on. It's enough to just be still here.

Canticles for Robert Espindola

In the past few weeks, my favorite aunt and two friends have all been found to have cancer, some quite virulently, and all three are dealing with cancer in the neck and throat areas of the body. I don't know what it means, if indeed it means anything; I just note the compelling synchronicity. I wish all of them the best during their medical journeys, I will be keeping good thoughts for them, keeping them in my prayers, and hoping for the best possible outcomes in every case.

When I gave up my own life (and faltering corporate design career) to move back in with my father to be his full-time live-in caregiver following his diagnosis with colon cancer, caring for him for the last year of his life; when I then took care of my mother till she died less than a year later of complications brought on by Alzheimer's; and when, in between my parents' deaths, I was diagnosed with a serious chronic illness that had already decimated my health and well-being for probably two decades before it was recognized; and when, while still ill and weak with illness, I had to close down my parents' house, buy my own, and try to live my own life again; and, soon after, when my own chronic illness worsened to a severity that almost killed me, caused my health to be utterly destroyed, and which led to a journey of multiple surgeries to first cure my chronic illness, and eventually (I still hope) reverse some of the damages done to me—when all of these dovetailing journeys of cancer, death, multiple hospital and clinic and doctor's visits, when all of these things happened to my family and in my own life, I learned many lessons about endurance, about survival, about refusing to give in to illness and death, and about just getting through the bad days, nothing more, nothing less. When I had the first surgery, last year, I was promised my health would eventually recover, and I would get my life back. That still hasn't happened, not yet. I am still on my own medical journey. I'm nowhere near finished with my journey. I'm not "all over it" yet. I know the needles, the smells of medical care, the scars, the radiation burns, the weakness, the suffering, both personally, and through watching my loved ones go through it, and I know these only too well.

I know only too well that some journeys don't end, you just learn to be a traveler. You do what you have to. You go on. You get through it, however best you can. One day at a time.

So I feel a huge swell of empathy for my aunt and friends on their current journeys, both minor and major. The echoes in my own life of recent years are too loud to articulate—except in art, poetry, music—and sometimes all I can do is pray, meditate, hope, wish the best for those I love. I make art about all this as a way of coping with it. I write poems about surgery as a way of dealing with its aftermath. I make visual art directly involving the numerous blood transfusions and surgery as a way of owning it. I wrote numerous poems about my father's chemotherapy and treatments as a way of not going crazy with being his live-in caregiver. And this all feeds into my music, too.

It can make you feel utterly helpless to do anything, when people you care about are suffering, and you can't wave a magic wand and just "fix" it—at which point you have to learn even deeper lessons about acceptance of what is, just simple acceptance with clear vision and no filters blocking it, and go on from there. Life will go on, even after we die. It's what we do with our lives, with our brief time in eternity, right here, right now, that matters. Start where you are. The journey can begin in no other place.

And so, after hearing about Robert Espindola's probably major, even radical cancer surgery journey to come, I was moved to write the poem below. As it happens, it was one of those poems that came to me at white heat, with no warning, that wrote itself in the space of an hour, and which needed little revision. I will let it stand.

It's terribly presumptuous of me, I know.

Robert and I know each other only as acquaintances who meet on occasion. Each time we have spent time together, we have gotten along well, and I for one have always enjoyed his company, but I'm hardly a close friend in the inner circle. Yet he, as a poet and lyricist, and his partner, Robert Seeley, as a composer, have been a tremendous influence on me, inspiring me to throw my hat in the ring to write new music for LGBT choral groups. Last year I was commissioned to do just that, and that new music will be performed less than a month from now. "The Roberts," as we who have worked with them, and know them familiarly, call them with affection, have been responsible for creating some great new works for LGBT choruses, with many commissions, such as Metamorphosis and Naked Man, that are now standard repertoire in GALA choral circles. Personally, I would be content to follow in their remarkable footsteps, write lots of music for GALA choruses, and enjoy every moment of doing so. That's how they have been an example to me, and it's in the spirit of gratitude for their gifts to all of us, and hope for Robert's medical journey, that I wrote this poem.

It's presumptuous of me to write this poem, equally so to share it. Yet I say: we're all survivors. Sometimes we all need to vent, to scream, to get the horror and rage and anger out of our bodies. Even if we are voiceless because cancer has taken our very ability to speak, our throats, our lungs (as my favorite uncle's lungs were taken, also by cancer), we can still cry on each others' shoulders. Be well, regardless. No matter what.

•

Canticles for Robert

i.

Orpheus of cancer
a journey to the underworld and back
of needles, disinfectant, hospital stink
sterile gauze, and protons flung
at tissue till it melts

Melts into airy dream
and feathers fall as though
unleashed by the magus
back into elemental formlessness
where books are drowned

Wings quiver on the lips of cliffs
where voices cascade into seas
much broader than we imagined
we in our little worlds
that had given up singing

All a poet can do today is warm
to find a fire in words that conjure worlds
you pull the fabric to the mirror
that concealed what could be seen
and make of it a mystery

Voices melt as throats row into heat
a canvas made of charism
a proteus of doubt
some needle made of dissonance
that melts a lover's hearth

ii.

My father melted into silence
further down this same journey
you now find yourself enroute
I too have known the needle jab
and copper stink of blood
the chemical fear and torment
of the unknown and unremarked

I am no great shepherd of
the matters of the world
I can only wish for you my dying father's
behest, which came to me an hour
after he had passed: he smothered me
in joy and laughed that it all
was so much better than he'd dreamed

but still myself walking the world with you
still scarred and scared and myself melting
still on an unfinished journey
where at last I've found my voice—

my perfect voice of love and melting
anger not irresolute
nor uncomplicated by a quest
not unlike yours, to make the world
a finer place through song—

my central wish for you is: more life
more life, much more, and dignity

take heart to know, no matter what:
mage, your song will remain heard
in the infinite ears of ocean, of desert
fragrant storm that ripples
out to every melody and merges:
that song itself can give its voice
that breath itself sustain us