Gratitudes 2016

Gratitudes 2016

Every year I write Gratitudes instead of New Year's Resolution. This has been my practice for a number of years. I am going to start working on that. After the past actually fairly challenging year, and looking forward to having to redo all the civil rights and social justice progress we've made over the past fifty years, I'm honestly not sure where to start. I usually start small.

To be clear, I'm announcing intent, not completion. I will have to start somewhere, And I will start where and when I can.

•

I am struggling a bit with Gratitudes this morning. I am also feeling somewhat emotionally fragile this morning, after having felt more resilient these past few days.

Some of this, no doubt, is that now that the Festival of Being Grateful at the Feast has been accomplished, and it was a good one, now we must face the prospect of continuing to be grateful when not at a feast. But that's when it counts even more. Anyone can be grateful at the feast; gratitude goes deeper when there's apparently less to be grateful for.

Some of this, also, is that one has had a few days of joy and celebration in each others' company, and is very grateful for that, and now one must turn to face the unsolved problems and unaddressed fears that still hover in the corners of the room, that will not go away, because the world has become a Scarier Place overnight. One has had the days of horror, followed by some healthy days of forgetting about the horror and focusing on the joy and friends who share and co-create the joy, and now one has to get back to work.

What I will NOT be doing today is Retail Madness. I have clean-up to help with, leftovers to enjoy, and people to spend the day Doing Nothing with. I do not plan to subject my still-raw nerves in any way to the annual Consumer Madness Blow-Out (that phrase bigger typeface and lots of exclamation points) that seems to possess people. But then, we live in the culture of the Religion of Money, no matter what lip service is given to other religions, cults, sects, and belief-systems.

I cannot help but remember what the second Bush Presidency said needed to happen after 9/11: You people need to go out and do your patriotic duty and spend lots of money on things you don't need, to help boost the economy back into health, and revive the American spirit. Linking consumption and nationalism is one of the earmarks of fascism. (I said that in 2001, and nobody wanted to hear it.)

Well, huge sales on Black Friday only make sense if you actually have money to spend on things you don't really need. You might want them, and that's fine, but needing them is another story. (To be fair, I have a few close friends, most of them tech people, who do take advantage of the HUUUUGE SAAAALES to get tech stuff they actually DO need. That's just clever, creative timing about shopping, as opposed to consumerism per se.) And still, you have to have to disposable income to get things you need, even on sale. This year, as with last year, I must lay low.

Am I grateful for any of that? I am grateful that I still have some choices in life, including choices about what not to engage in. I am fearful of the times changing in such a way that choices continue to be legislated away from me (which if you want to be fair has been happening my entire lifetime; but I don't want to be fair about that), making me life harder rather than easier, creating more chaos at a time in my life when I can barely summon the strength to cope with existing chaos. I could list those fears, I've certainly thought them through in detail, and right now I don't want to.

Can I find something to be grateful for, in the current political climate of the public ascendancy of the rhetoric of hate and selfishness? That's a challenge. I suppose I can find something in the spinning coin in which Hope is on one side of the coin and Despair is on the other: hope seen in many people rallying together to fight for their rights and refusing to normalize fascism; despair in that those civil rights we spent the last two generations fighting to acquire will now have to be fought for all over again. That's the true dynamic with Hope/Despair (I am amazed that this isn't so bloody obvious to more people than it seems to be): it is the Tao, always spinning, the seed of the light born out of the darkness, the seed of the darkness always born out of the light. The Balance is the dynamic that keeps it spinning, which is good, because if it ever comes to rest permanently on one side, well, that's when things *really* fall apart.

I am grateful that I had a terrific Day of Feasting and Giving Thanks. (Spare me the postmodern cynical undercutting of that with whatever complaining you were thinking of replying with.) (You see: the spinning coin.) Thank you.

I am grateful that I don't have to do much today, the day after, either. Thank you.

I am grateful of who I am spending these days with, and where, and why, and for being provided with a haven in which I am free to spend my energy this morning on introspection rather than struggling to survive.

I am grateful that I don't have to struggle to just survive, this morning, this week, next week. Thank you.

I am grateful that I have the opportunity to spend my limited energy, this week, on creativity, on activism, rather than on struggling to survive. Thank you.

I am grateful that I do have friends who care, and are able to help me out when I really need it, even in small ways. I have needed so much support, and it has sometimes made me desperate (the fearful Despair side of the coin), and therefore not easy to be around. I acknowledge that.

I am grateful that I have learned to swallow my pride, and just fucking Ask For Help. I am still learning how to do that elegantly rather than desperately (thanks in part to the mentoring of Amanda Fucking Palmer); my apologies for when I have failed on that front.

I will continue to need support, going forward, and I worry sometimes about continuing to ask for help, because I DO know that everyone else needs help, too. I give it where I can, and pay it forward where I cannot. I will always be grateful, even when the clawed and scratchy-voiced thoughts dominate me that try to tell me that I am not worthy, and it is an uphill battle to remember that I AM.

I am grateful for neediness. Because I need to be needed, as much as I need to be supported. I need, like breathing, to be useful. John Cage spoke many times about how being useful is one of the most important values, underlying so many other definitions of what it means to be a "good" person. "Good" means nothing, because that is usually a Tribal morality concept in practice. "Useful" transcends good, if you just think about it for a minute.

I am grateful for opportunities to be of use. Even when I am feeling scared and desperate, and am bargaining for my survival, that does not negate that I am being of use to someone, even if seems like a barter or trade. Being useful helps me fight against the clawed and scratchy-voiced thoughts about being unworthy.

I'm very grateful that my multimedia installation in a corn crib at Silverwood County Park, titled "The Temple of Deep Time," created in 2014, was one of two installations extended far beyond the original time frame of the original project. I spent some time this past summer on maintenance and improvements, and am glad to see it go forward. Thank you.

In many ways, the past year or so has been, well, horrible. It's the art-making, the music, the art installations, that have kept me going. Sometimes the creative work is the only thing that keeps me going, so I'm very grateful to have had it. To keep going, I need to do even more. Thank you.

I'm very grateful that I've been offered so many opportunities in the past year or so and been asked to create location-specific landscape art and multimedia art. It's been fulfilling to be able to create, and I've been honored to be given so many opportunities. Thank you.

You want to know to practice Gratitudes?
What is the one thing you most hate doing?
Go do that.
And be grateful.

I am grateful for all of the people who have given me places to stay, this past year and a half of homelessness. Just having minimal security frees up so much of my energy otherwise spent on just surviving. If I have days and weeks when I don't want to go on, a lot of that is because I've been spending ALL of my energy on merely surviving, and none of it on anything that moves me forward, or feeds me creatively and spiritually (those are intertwined), and Despair looks like an endless tunnel of merely struggling to survive, with no point to it. (FUCK nihilism. FUCK you.)

I am grateful, therefore, that I have had a morning hour of science and solitude, to be able to hear these thoughts as they percolate up through the cracked and bubbling dolomitic bedrock of my recent experience. I am still catching up on being able to have this morning silence and solitude, which for me is as necessary as breathing, as necessary as host times out in the desert when I can Just. Stop. and listen to the stillness. This is my therapy. This is what keeps me sane.

I am grateful, also, therefore, to have access for now to a working kitchen that I don't have to set up, tear down, move, and spend all my energy on just making it work. Food security is a major relief. Food security is something you take for granted till you don't have it; just like being homeless.

I am grateful. Oh, I am still fearful. I am still fighting dire Despair, and depression. And I am grateful to have had even a few days when I had the strength TO fight, leftover from everything else I have to deal with.

Let's make this an Arts & Crafts Day.

Playing and Making

Music performance and composition:

Lots of us play musical instruments, or sing. I play adequately, and I sing well (albeit not this week, thanks to pneumonia). But I was not a performance major, practicing several hours per day. I was a composition major. My urge has always been to Make, rather than recreate.

I do believe you have to be able to do both. I can read music like a sonofabitch, and I could do so even before I went to music school. I've been musical since I was 4 or 5 years old. I started piano at age 6 or 7, and I started singing in choir and chorus at that age, as well. The Lutheran church in Ann Arbor that my family went to had a music staff who were at the University of Michigan, and we did a lot of ambitious music in church choir: before age 24 I had sung probably a third of all the Bach Cantatas, some more than once. So I have some pretty good performance chops.

But I'll never be as good a Chapman Stick player, or bassist, as several of my friends are. I don't put in the practice time. (I'm not a slacker. In fact, for most of my adult life, I had an undiagnosed chronic illness that sapped my strength and willpower, and which I will spend the rest of my life recovering from.) There was a period in my 30s when I was in several bands that focused on improvised music; so you could say I was composing on a weekly basis, and playing spontaneous music. But most of that went direct to recording, and was never notated. It's only in the past five or six years that I've begun seriously notating written music scores again, and I've been prolific throughout this period. (Within the limitations of chronic illness and post-illness, always.) When I was in my 30s I did not suck as a player, but in fact I'm a better player now, even though I play gigs less often: time and experience do that, no matter what age you begin. I don't have as many opportunities to play, which sucks, but on balance I'm musically satisfied because I'm writing more.

My focus was always on Making. On writing music. On composing. I have been reading a biography of Wayne Shorter, which made a comparison between Shorter's meticulous writing of music and Joe Zawinul's habit of improvising a piece, then transcribing it, and declaring it done. Actually, I do both. Both of those methods work for me. Most of the music I recorded in my 30s and 40s was never notated, but it WAS recorded, and stands as pieces. I did on occasion transcribe music I had recorded and made it into a score others could play. ("Night/Fire" on my album The Western Lands was done this way.) If I had enough energy, or an assistant, I could transcribe most of what I recorded in those years, and give you a score you could play from. (But I don't. If I have any regrets about surviving chronic illness, it's that I never had the energy to do what I wanted to do, and so much never got finished.)

You see, that's been the trade-off: I will never learn to play as many songs as many of my friends do, and I'll never play them as well as they do. (Mostly. I do have my moments.) But most of them don't compose as much I do, either. That's the trade-off I observed way back in music school, where I was majoring as a composer: what your emphasis is, is probably what it will in future. Bruce Cockburn, the great songwriter, once said something that really stuck with me: "I don't know many songs that I didn't write." (He then said, "But this is one of them," and launched into Monty Python's "Always Look on the Bright Side of Life." A song, I might add, that I also know, that I didn't write.)

In music school I focused on making new music; all of us music school students who were not performance-track were required to play or sing, and have declared instruments, but even then in my piano and percussion minors I preferred to focus on new music. (Or music so old it was new all over again: hence my minors in Medieval and Renaissance music.) In music school, and after, I was involved with a group of composers and performers who presented concerts of new music several times a year; some of us were both performers and composers, and traded hats as needed. It was a very fertile ground upon which to write and have performed new music scores. It was also the time in which I began to learn to play jazz, and improvise.

Im not sure why I wanted to write about this, today. Maybe it's because I never stop thinking about music, no matter what else is going on. Maybe it's because I see some of my Stick playing pals and other musician pals having all these minor and major successes in their musical lives that make me want to stand up and cheer. And I do cheer! And then, sometimes, I think about how the touring musician life was never one I could take on (undiagnosed chronic illness, for one; opportunities, for another). It makes me very happy to see some of my friends out there on the road, and to get to their concerts as often as I am able (energy permitting: I'd go to a hell of a lot more concerts if I had the strength).

I genuinely enjoy hearing my friends make their music. I love hearing what they do. I'll never play as well as they do, and I'm okay with that.

And then I go home and go back to writing. It's just what I do.

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.

You Must Honor Illness

(a Spiral Dance essay)

I've felt pulled off-balance for so long, off-center and not-grounded, and for good reason. I had been ill for twenty years, although it hadn't been diagnosed as what it was till near the end of that time. Then the cure had its own pulls off center, a genuine cure but it comes with its own set of problems, changes and re-creations of what was and what can never be again. I still don't know what the new normal is. If there is one. If there will ever be again a sense of stability and direction.

I spend all this long day waiting, a day where nothing bad happened but I just couldn't get rid of that sense of darkness and void lurking just behind everything you see. Out of the corner of the eye the fabric is ripped away and the play is revealed for what it is, a painted backdrop over nothing. If you turn your head too quickly, the paper rips and you see through the world into that emptiness behind all manifest things.

And that's why I often feel off-balance and fogged out and ungrounded lately. It's just that I don't have any maps any more. All the old maps are useless or incomplete. When you've drifted this far out to sea, there's no sense of which direction to go to find land again. It's water heaving all around, and no smell of shore.

So in the past few days, after a summer's long pull down towards the smiling void, I find myself turning, or returning, to those sources that have given me a sense of center before, a center from which to extend. And so this morning I read, out of nothing that could remotely be called a coincidence, words that linger with me all this long day. Words that come back to me as I fail to find my center and extent once again this late night:

You must honor illness. It gives us time for reflection. As hard as it is, it helps us sort out our priorities. I know there's nothing worse then someone telling you, 'This illness of yours is a gift.' No, it's painful and discouraging. It's not a gift, but it is a time to pull back and take a closer look at one's life.

—Father Sergei, quoted in Mary Swander's luminous book The Desert Pilgrim: En route to mysticism and miracles.

I have tried hard, many times, to honor my illness, and my recovery. Illness has not been a gift. It's been a passage that more or less removed any chance of meeting whatever ambition I had felt years ago for purpose in this life. This doesn't mean there was no direction, but such maps as there were were never more than puzzle codexes in a lost language leading you away from treasure island. Illness sent me adrift and astray. The beneficial knowledge that comes from hindsight about this illness is knowing that in fact my failures in life, so labeled when they occurred, were not a failure of will, not a personality defect, nor a lack of focus. The life-force truly had been sucked out of my blood, blood which tastes like a lost ancestral ocean. I was neither too lazy nor unambitious, I was in truth waylaid by gravitational tides fully veiled until this recent complicated cure.

Still the recovery has been a time of reflection. My priorities, after almost dying, were reshuffled into a new configuration. I know what my purpose here is now, and I know upon reflection what I'm for, what I do best: I am a maker, a bard, an artist, who's really not very good at much else. Self-knowledge is not all roses and lilies, though, as I have discovered I lack any patience for idiocy that would further leech my essence. I know my mortality from the inside out, having almost lost my ability to live. I have a lot to do, and don't want to waste any more time doing it.

So that's the necessary distinction: My illness was no gift, yet it did provide me other gifts. Of self-awareness, of self-confidence in knowing what I'm good at and what I'm supposed to do with it. I'm still recovering. Not what was lost, but what I never had but dreamed. A dream wherein a map guides me no land that ever was, but an island come into being as one discovers it. There's nothing on the other side of those mountains till you cross their range and see what's there, the act of vision itself what solidifies void into form, light into mass. That effortless conversion of energy into matter.

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.

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.

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!

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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.