Saturday, September 18, 2010

Mortality & Futility

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

Pain hurts.

Period.

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

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

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

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

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

Life just isn't much fun on those days.

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

There is one stereotypical truth that is fairly effective:

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

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

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

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

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

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

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

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

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

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

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

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

Making art is the best revenge.

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

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

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

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

Pain hurts.

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


Despite Everything

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4 Comments:

Blogger Elisabeth said...

This is a powerful post, Art, and helpful. I agree that we are sometimes bashed over the head with an emphasis on getting over our pain and of making the most of things however awful they might be, instead of being listened to and understood. I agree, pain hurts.

I'm sorry you're having such a dreadful time. Your work is so beautiful and evocative. It seems tragic that you cannot get more of it out there, and also be remunerated for it, particularly given the burden of your debts.

I woud like to draw on some of your thoughts on' art as the best revenge', Art, with your okay that is. Of course I shall ascribe such thoughts and words to you and cite you accurately.

You know by now how significant these ideas are to me and my explorations and I'm grateful for your encouragement over my difficult time, which now feels like a mere pimple alongside your struggles.

Take care, Art. You're in my thoughts.

2:25 AM  
Blogger Jim Murdoch said...

When I gave up religion I didn’t simply stop attending services. I quit. I wrote a letter explaining my reasons which was followed by a face-to-face meeting where I expounded on them. What was so hard for them to understand was that I didn’t want to go away and do unchristian things, be a bad man; no, I left on a point of principle. There was no point sticking round to be part of any solution because my solution would have been the dissolution of the entire organisation to which I had once belonged and what then would I have been a part of? The things that I considered wrong with it were fundamental to it being what it was. I didn’t want it to change. I simply recognised that I didn’t belong in it. Not everything can be cured. Amputation is often the only solution and so I amputated myself.

I don’t know if you’ve read all of the comments on Elisabeth’s recent post – there are quite a few – but this response she made struck a chord both with me and my wife:

The doctor in emergency, a down to earth straightforward and pleasant sort of guy suggested to me as they wheeled me off to the ward that I should resist the impulse to endure my pain stoically and in silence. 'The body does not like pain he said. It does not help the healing'.

It sounds like such an obvious thing for a doctor to say but it’s so necessary because so many of us probably don’t truly understand the nature of pain. Pain is bad. Pain is a warning. Pain is your body telling you that something is not right and if you can fix whatever that thing is then the pain will go away. Pain should only ever be temporary. In that respect pain is good. We need pain. But we can most certainly live long and happy lives without it.

Not everyone shares their pain. My wife is in constant pain but I get to hear about a fraction of it. There is little I can do to help in any case. She doesn’t suffer the kind of pain where rubbing or heat or cold compresses do much good. Pills work, mostly. And so I have reminders on my computer and I ask her at regular intervals if she’s taken her medication. That aside there is nothing I can do to lessen her suffering. Her pain is hers alone. But you are right; not suffering alone makes pain more bearable. Whether is actually makes it less in any physical sense I’m not sure. I certainly believe the distraction of another person is calmative if not curative especially if you feel a degree of responsibility to that person and do not want to overburden them. I have been sick since Carrie came back from the States and so, whereas normally she would give in to her exhaustion, she has rise to the challenge and provided more support for me than I normally need. It was some stomach bug which I expected would work itself out of my system in 24 hours but I’m now into my fourth full day but at least I’m no longer throwing up.

I understand about the lamp – totally. The standard lamp in my office burned out its bulb a few weeks back and I just worked with the little reading arm that is attached to it until I could be bothered getting a screwdriver and finding out what I needed to buy from the shops. I’m not ill now, not like I have been, but being ill has changed my priorities. There are things that need to get done and then there are things that need to get done and even they can usually wait a bit.

Carrie has seen a lot of doctors over the past few years. Her experiences have been mixed but once she takes them by the lapels and says, “Do you know who you’re talking to?” they usually get on fine after that. My wife knows more about her illness than most of the doctors that attend to her. She has researched it thoroughly. Most patients aren’t like her however and I think it’s been both a surprise and a pleasure to have a patient who is willing to meet them halfway; the tricky bit has been giving them their place and not doing their job. Her GP – who is also my GP – is very good. He has no ego and treats her as a partner not simply a patient.

8:13 AM  
Blogger Art Durkee said...

Hi, E—

Feel free to steal/borrow as many ideas as you wish. I'm intrigued, and will no doubt enjoy your take on the topic of art-making as the best way of dealing with all this. I'm getting a lot of your logbook of your broken leg, too. It's insightful.

11:02 PM  
Blogger Art Durkee said...

Jim, your thoughts on some organizations being too broke to fix are right on target, I think. I'm sure the friend (who has yet to reply to my responses to his email, if he ever will) feels that things are too broken to be fixed. That's where I disagree with him, of course, about this particular organization; I think he's missing what's been going on, and seeing only part of the picture. Time will tell, either way.

And yes, I've been reading and commenting on Elizabeth's recent posts following her broken leg. I've read almost all of the comments, and the reply you quote here is, I agree, a very important one.

That's it exactly: Pain is your body telling you that something is wrong. it's a warning system, a detection system, and if we pay attention to it, pain can be a very effective means of guiding us towards solutions to what's gone wrong.

I'm a big advocate of the patient being in charge. (Most doctors I know agree with this, BTW.) Your GP sounds like a good one. The whole idea that the doctor and the patient are PARTNERS is exactly right, and that makes a huge difference. I'm fortunate in that my own GP also understands this.

11:09 PM  

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