Going into the final week of this program, I am thinking about change. I came here to find a different way to deal with pain. If this experience is not transformative, then what’s the point? It needs to have a lasting impact. “Re-entry” into everyday life next week will be one of those “rubber meets the road” moments.

I can’t be sure that what I have learned here will consistently lower my pain going forward. There are so many variables on any given day:  Is it some random neurological event? Do I feel better because I am sleeping better? Is it the new dosage of the pain med? Is all the deep relaxation kicking in? Maybe it’s the gluten free diet? Will the warm weather help? I may be carving new neural pathways that will ultimately diminish my pain, but this remains to be seen. But I can already call the program a success in any case.

This is more about managing pain than treating it.  We manage things that we live with, not the things we are trying to rid ourselves of.  Doctors treat pain, but patients need to learn to manage it themselves. Doctors help by prescribing medications -- and medications play a big role. But they are only a part of the picture.

One important change is that the daily ups and downs of my pain don’t freak me out the way they used to. This is, as they say, HUGE. I am learning to internalize the notion that not every uptick in pain is a major flare-up and that a even a big flare-up is not a first step on the road to hell, or an indication that I have an as yet undiagnosed pathology that is going to make life unlivable.  Maintaining my equilibrium is not only good for me; it is good for friends and family who deal intimately with me on a day-to-day basis. I hope I can keep this up.

Chronic pain makes you feel very apprehensive, at least until you get your head around it – and I am finally getting my head around it, after a tough year. But I am pretty lucky. For some people it takes much longer, either because the pain is so bad or because the social, medical or psychological circumstances of their lives make it so hard to learn to cope with this. But learning to be less apprehensive seems to be a crucial step.

This is challenging because when you have a bad day you naturally extrapolate it to the next. This isn’t some crazy personality trait; it is what you instinctively do when things hurt. Your brain tries to protect your body from whatever may be coming next. (You might say: “It’s the neurology, stupid”). So internalizing a different understanding of the ebbs and flows of your pain is an achievement – and I am sure it is something that will require continued effort.  You even need to learn to keep a level head when the pain gets better: Don’t get elated, because the pendulum is likely to swing back. If you do, in fact, have a longer term remission, let it come as a surprise. The important   thing is to actively work at managing pain rather than to wait passively for it to go away or to panic when it gets worse. Easier said than done but doable.

Another change is to understand that the details of daily life really matter. Sometimes the little picture really counts and it is better not to let your ego get in the way of acknowledging that. I have been dealt a hand and I have to play it well. So I need to focus on the details of how I walk, sit and stand --not to mention the CRUCIAL details of how to breathe. Breathing is worth a whole post in and of itself but I am afraid that I might lose some of you if you see what a missionary I have become about the value—for everyone – of learning how to breath diaphragmatically. The point is that medications only get you so far in managing pain but these other things, which are thankfully within my own control, really help a lot. If I structure my days deliberately I can do the things I need and want to do without aggravating my pain to unacceptable levels. I have to accept the fact that I am more prone to fatigue than I used to be but I can still be confident that, with a little forethought, I can get a lot done. And the clearer I am, the more my friends and family can be relieved of the anxiety of worrying over me.

So, yes, I am changing the way I think, walk and breathe and these things make a big difference.  So we will have to see how all this plays out in the weeks ahead when I re-enter the path of  “normal” life. In the meantime, so far, so good. Stay tuned.

April 3, 2106

I have been thinking about the words "chronic,” and "pain" and about what happens when you put the two of them together.  As awful as chronic pain can be, it seems to me that this phrase is itself  more inflammatory -- and less precise -- than it needs to be.

Technically speaking, pain is considered chronic whenever it lasts longer than it should, given the underlying cause: a successful surgery leaving pain long after the wounds have healed; a broken bone that heals leaving nerve pain  long afterwards; a patient whose successful cancer treatments leave her body  in pain, seemingly unconnected to the disease that has been cured. They say that, as a rule of thumb, if it still hurts after six months, it is called chronic.

But this clinical definition doesn’t fully explain the valence of the term. No one ever says: "she is chronically joyful" or "I am chronically peaceful." Anything chronic is, by definition, undesirable, out of control and, usually, sad.  It is not just that it is with us all the time but that it is with us against our will.  We can make peace with all kinds of unplanned things, but the word “chronic” doesn't suggest a productive peace process. It doesn’t suggest anything fluid or manageable.  When a conflict is chronic, even a ceasefire seems unlikely. It is more like of a war of attrition – it just drags on and on.

And then there is pain. We think of pain as something solid rather than malleable, out of our control, something, at best, to be endured. Most of the time, we feel viscerally that pain is destined to go away.  And it usually does. Except when it is chronic.

When pain is with us, it is also outside of us: it is forced upon us. We feel that we have no control. No negotiation or integration is possible. Pain -- as opposed to, say, sensation – is unpleasant, aggressive and beyond our control. It insists on being in the drivers seat.

And when we put these two words together things really get intense.  With chronic pain, you are up against a formidable adversary.

But when you enter the world of pain management you need to (gradually, step-by-step) unlearn these things in order to regain a sense of control. Until I had chronic pain -- and began to research some of the ways to deal with it -- I never imagined that you could soften pain, work with it, integrate it into your life, to turn pain into mere sensation. All of this is easier said than done. Managing chronic pain is about learning a variety of practices that once sounded flakey to me. These include meditation, biofeedback, breathing exercises and various techniques of occupational and physical therapy that often touch on the seeming minutiae of they way you conduct your daily life.

You learn to distinguish between primary and secondary pain, about how habits of the mind can inflame our pain. You learn techniques to reprogram your brain (really!!) so that you don’t turn a relatively minor pain into something worse  than it needs to be. (BTW: this is something that happens all the time. There is an underlying biological reason for it. It keeps us running from the threat that caused the pain in the first place. But in the case of chronic pain it is dysfunctional: the wild animal that attacked us is long gone, so the “fight or flight instinct” only inflames things further without helping us to escape the predator). I can’t really explain the neuroscience of all this, although some of it has been explained to me over and over. But I can say that as a twenty-first century person, it is hardly shocking to hear that our minds are not fixed and inflexible, that they are constantly changing through various neurological processes and that we can deliberately influence how this happens. I can even believe that the phrase "chronic pain" suggests some outmoded concepts about how our minds and bodies work and about how we can influence them.