Uphill Struggle Against All Odds
The past few weeks I've been so weak and sick I've only been out of the house a few times, and never for a long time. For someone who loves spending his time in the outdoors, camera in hand, that can be pure torture. Thank all the gods for my garden. One of the reasons I've been developing a dense, lush garden since I bought my home is to use it to make photographs. But another reason is to be surrounded by half-wild greenery, so that even on a day when I'm too weak to do much I can still walk around the house and get lost in the greening. Gardening is a ripe spiritual practice, full of potential and healing. The lilacs are in full bloom right now; I trimmed a few flowers and put them in a vase in the dining room, their scent permeating the air, the scent of May Day, of Beltane, of spring. Yesterday, before it began raining again, I did some weeding. A half hour of intense on-your-knees work and I was panting hard, heart racing, and had to stop: such is the curse of a chronic illness that produces debilitating tiredness. Any exertion, literally any exertion, can leave you panting.
A few months after my father died, and a few months before my mother also died, I was diagnosed with ulcerative colitis coupled with irritable bowel syndrome. (Principal side-effects are debilitating tiredness, a lot of colonic bleeding that can produce anemia, and a severely touchy digestion.) Those are all literally life-changing events; if you think they don't affect how you make art, or affect the art you make, you're fooling yourself. (Medical trivia: if your doctors call it a "syndrome" that means they recognize the symptoms, but they don't know what causes it, and they don't know how to cure it.) I also went on a gluten-free diet at that time. That's all tied together: a very touchy digestive system, with the goal to still eat well while at the same time removing as many irritants from the diet as possible. I also had to cut way back on certain vegetables that are irritants, like broccoli. (I won't miss cabbage; I hate cabbage anyway. The only good cabbage is that which is placed in a clay pot with peppers and other ingredients and buried in the ground for weeks or months, to make authentic Korean kimchee.) There is a stress component to ulcerative colitis: high stress can bring on a flare-up, or relapse, or whatever you want to call it. It's no wonder an attack came on after Dad died. Last fall, a flare-up which is still in progress was brought on by the stress of dealing with my uncle's death, and my aunt's very nasty passage into Alzheimer's. I was able to build up enough strength to go on a roadtrip to California and Oregon this past February, but since I got back home I've been mostly sick. Chronic illness means you can be sick for months at a time; I'm going on seven months of illness right now. It's hard to feel like it will ever stop. I've learned not to talk about it, even when asked, because people want to hear that you're doing fine, not that you're not. No one likes a complainer.
Your appetite goes away, but you might not lose any weight, because you're unable to undertake even normal exercise. You're just too weak. Sometimes I live vicariously. I often enjoy watching Anthony Bourdain's television show No Reservations, which is sort of a punk-foodie show. If Julia Child was the classic American foodie show, the very first foodie show on US television, the equivalent of classical music or French accordion restaurant music, then Tony's show is the foodie equivalent of punk rock, with maybe a little heavy metal thrown in. Even though I'm classically trained, a composer with degrees in music, I've always been more of a punk rocker in attitude than a music-conservatory high-art snob. All music is good, though—as are all things foodie. (Is Alice Waters the Chopin of foodies? Is Ferran Adria more akin to Charles Ives or to Olivier Messiaen? Are raw-food ideologues more akin to bad hip-hop or to bad lounge music? I merely speculate; just because it's fun.) What I love about TV shows like No Reservations is that Tony Bourdain loves life, loves food, isn't afraid to be wrong or look stupid, and lives life at full speed. There are days when I can barely get through the day's chores, and it saves me to be reminded that you can still life with relish, with gusto, with joie de vivre! even when you're not able to do much more than boil rice and fry bacon. I have a small shelf of cookbooks, which I love to keep on hand and sample from with sensual pleasure, even though most days I don't have the strength to cook anything very fancy. Some days plain-and-simple and well-loved beats any four-star restaurant.
There is eros and thanatos in every life experience, including that of being ill. Some things that have no cure come to be recognized as bearing gifts. Focus too much on pathology and you become pathological. (You cannot look into the Void too long without the Void also looking into you.) It's not a matter of trying to figure out the "purpose" or "meaning" of an illness, as though it were a puzzle to be solved; rather, it's about learning to create meaning within the sphere of having to cope with and endure your illness. In other words, how you continue to live life with pleasure and love even when it's a constant uphill battle and you often feel like you're sliding back down no matter what you do. Find "meaning" in that. There are those among the generally-healthy who will try to encourage you by telling you to seek the lesson in the wound: a new age quest for meaning in all things. But such pseudo-wisdom ignores the dark gods, the dark night of the soul, acedia, and the as-yet-untransformed aspects of deity. There are other who quote the Nietzschean doctrine of "Whatever doesn't kill you, makes you stronger." I knew a cancer survivor once who rephrased that, with delicate and forceful relish, as "Whatever doesn't kill you, missed." Period.
Living is not just an act of will. Nor is it a purely intellectual exercise. (Well, I suppose for some writers it is, those whose lives are tepid and lukewarm and untroubled by actual sorrow, for whom is more virtual than real. Long may they wave.) Being sick brings you into an intense awareness of your body unlike any other process; except perhaps open-hearted, little-toe-curling, fulfilling, tantric sex. Healthy people take for granted that they can have sex any time they want to, that the flesh will always be as willing to perform as the soul is to contemplate. Sensual pleasure, even sexual arousal, is available to me even in my nights and days of debilitating tiredness—eros is always present—but fulfillment may have to be postponed. I tire out more easily than I used to; I need to take pauses to get my breath back. I'll state for the record this truth about love and sex, which I have learned from being sick and tired all the time: lovers who expect me to go out of my way, and do all the work of relationship, will no longer be placed first among equals. If you can't do at least half of the work to meet me halfway, you cost me too much effort, and I can't afford to waste my time on you. Period.
I pause for a moment to make something iconic. A piece of digital art, perhaps, or a literal icon. Yesterday as I was out driving around town doing some shopping errands, an idea for a multimedia series of images came to me. All the same image, but presented in several ways, showcasing the various media I work in. A series of small icons, to be tucked away in the corner of the gallery, where some might not even notice. People ordinarily overlook the small corners, anyway, and focus on the oversized, prominent, gaudy big art in the middle of the wall. Big and loud is better, they say; even when it's not.
I know I'm still alive, despite all my worries about not having the strength to work for a living, despite whatever internal bad weather my body is putting me through today, despite shivering on even warmish days because I'm anemic—despite all that, I know I'm still alive because I can still make art. I can still write something, whether a poem or a small rambling essay. I can spend a few hours seated at my worktable transcribing, proofreading and correcting a musical score. I can get out the Dremel rotary tool and carve something, an icon, or a symbol, or a simple picture, into a slab of wood. I can garden as much as I can till I have to stop. I can draw something. If I've become a better writer, more fluid and focused, it's because I've had a lot of practice from having nothing better to do on those days when I've been forced to sit on my ass all day. Of course, now that I've been booted out of, or chosen to leave, every writing community I've ever participated in, I could also be going down a dead-end path in my writing, and not know it. On the other hand, those who booted me out displayed exactly the same sort of intolerant, judgmental ignorance that the worst of the generally-healthy display towards the chronically-ill: since we're not supposed to "dwell on" or otherwise talk about being sick, we get blamed for being unable to live up to the ignorant expectations who don't want to know what's really been going on. Call that judgmentalism whatever you will: some psychologists call it pathological narcissism. Everybody has a shadow side.
One other aspect of this chronic illness is that it's not blatantly obvious. To most people I don't look like I'm disabled, or sick. It's largely invisible to them, until I get into a situation where I really have to sit down, right now, and then they get alarmed. But that's how it is: you can be going along fairly okay, and suddenly you hit that wall of exhaustion, and you have to stop, right now. There's no choice. It's not something you can just push through or tough out in some macho-man fantasy of playing through the pain. For one thing, if you try to just push through it by sheer force of will, you make it physically worse, and you might need two days to recover rather than one. There are always consequences. For another thing, you have to learn how to manage your daily energy budget, or suffer those consequences. So you have to learn to say "No" to things that you do want to do—there's no getting around it, you have to say No sometimes to one thing so that you can say Yes to something else. It becomes a matter of forging priorities.
I pause again to necessarily visit my most familiar walls in the house: the bathroom. I'm thinking about installing bookshelves. Maybe a favorite photograph or two to look at. Perhaps a small self-contained stereo with a CD player. Things to keep the mind engaged while you pass the time where out of necessity you must pass the time.
You have to talk yourself into doing what you want to do. It's an uphill struggle to hook up to that inspiration, to keep your life positive and affirming. Making art is one of the few things I know to do which never fails to improve my day. Even on my worst, most challenging days, making some kind of art, making anything, keeps me feeling like life is worth living. Perhaps most generally-healthy people don't understand how important even such a small thing can be, to give you a reason to go on living. When the quality of suffering is high, the mercy of small gods is deep.
Is it worth it? It can be. It can be worth it just to have gotten through the day feeling reasonably okay about yourself, ready to wake up tomorrow and see what's changed. The uphill struggle against all odds can be worth it, even on those days when you feel like you've just been treading water, not getting anywhere, if you can remember to look back on the day and say: look, an icon; a poem; a piece of music. I bloody well did that! That's good enough.