Full Catastrophe Living, by Jon Kabat-Zinn

This book is about how to cope with a chronic and serious condition, possibly involving intractible pain, possibly that will eventually end your life.  But how to nevertheless come to terms with your condition and continue living as fully as you can.  The major tool it promotes for doing this is meditation.

I've never been the type to medidate.  Too impatient.  Not interested in the spiritual trappings.  Also not especially taken with "meditation lite" as promoted by the medical community -- you know, guided relaxation for stress reduction.

This is different.  Kabat-Zinn is a scientist and also a black-belt serious meditater, who founded a stress clinic at the U Mass med school where they work with patients with chronic pain.  Without much spiritual baggage, the book treats meditation as a form of serious training, like strengthening a muscle.  Unlike meditation lite, it is about mindfulness, not "trying to relax."  Stress reduction is a by-product of consciously, gradually, persistently working to change how your mind behaves.

Weirdly, this book is working for me.  Instead of just throwing around phrases like "mindfulness" and "non-striving," it actually explains what those things are supposed to mean.  I kind of get it now, what I'm supposed to be working towards when "focusing on my breath" and "noticing my thoughts without judging them" and so on.  I've been meditating for 15 minutes a day for a few weeks now, and having no problem sticking with it.  In fact, I kind of need it.

Two Radically Different Medical Tales

A Life Worth Living by Robert Martensen is a troubling account of aggressive treatment of serious and fatal illnesses.  He confronts the uncomfortable facts: treatment is often horrifically miserable; in many cases life is only extended a few years (if at all) beyond a no-treatment scenario; those extra years are often taken up with relapses; and with many rare illnesses doctors don't actually know what to do, and are essentially experimenting on their patients without informed consent.

The Patient From Hell is Stephen Schneider's account of his battle with a rare cancer, during which he aggressively pushed his medical team to do more and to try new things.  After a few years of treatment and slow recovery, his story ends with what appears to be complete remission.  It would be very uplifting, if I hadn't read Martensen's book first.

And googled Schneider.  Schneider died nine years after his diagnosis.  His death was not from the cancer but from heart failure, almost certainly brought on by damage from the cancer treatment.

Further, Schneider's account of physical torture involved in his treatment is harrowing.  If you want a blow-by-blow of what cancer treatment is really like, here it is.  Each intervention is not only devastating to the body in and of itself, but also tends to throw multiple other systems out of whack, each of which then needs its own intervention.  It's a wonder the whole thing doesn't go into a state of massive collapse.  (In fact, it often does.  A similar situation arises with attempts to save "micro-preemies."  But that's a whole other post.)

Don't get me wrong, an extra nine years of life is nothing to dismiss.  But also bear in mind that Schneider's survival even for that long was unusual.  Even with recent advances in treatment, the average patient with his type of cancer lives just six years.  And most of those patients spend those six years having multiple relapses.  (See above paragraph about torture.)

Oddly, for all his scientific savvy, Schneider comes across as quite naive about medicine and illness.  He seems to believe that, with enough effort, doctors can flip the switch from "not normal" to "normal."  He was a climate scientist, who was watching a huge intricate system go into unpredictable and possibly disastrous wobbles when perturbed, but he couldn't see the analogy to the individual body.

What Is Lupus?

Have you ever heard a straight answer about this?

The most they'll say is "It's really hard to diagnose," but what is the "it" that they're trying to diagnose?

Here's my guess, triangulating from several medical sources.  I think lupus (systemic lupus erythematosus) really means "autoimmune disorder, not otherwise specified."  If you have an autoimmune disorder that is attacking your thyroid, they call it Graves or Hashimoto's.  If you have an autoimmune disorder that is attacking the exocrine glands of your eyes and mouth, they call it Sjogren's.  And so on.

But if it's more widely systemic, they call it lupus.

Weirdly, if it's attacking the kidneys, or the skin in the form of a rash, it's also called lupus.  I suspect this is for crazy historic reasons.  So you get doctors making weird statements like "Many autoimmune disorders can be mistaken for lupus, making it difficult to diagnose."  If it's attacking your kidneys, it's "real" lupus.  If it's attacking your thyroid it's not, and must be distinguished from "real" lupus.

Dudes, quit arguing over the words.  The patient has an autoimmune problem.  The only useful question then is which bodily systems are under attack.

What's useful here for me, though, is a clearer understanding that what I've got is really "not otherwise specified."  I test positive for double-strand DNA antibodies.  My muscles and joints hurt.  I'm tired all the time.  And that (knock on wood) is all.  That's what makes my case lupus.

Reading About Lupus

I can't believe it took me two years to get around to reading up on lupus.  I'm a person who reads up on everything.  I guess I've been in denial, which is not something I believe in except that I've obviously been doing it.  I suppose parenting my child through her first three years hasn't left me with much time to think anything, except "Crap, I'm not getting my job done," but what parent doesn't think that?

Today at the library, almost on a lark, I checked out a bunch of books on lupus, along with books about genealogy, art forgery, and other random topics.  I've started reading the first one, and it's finally dawning on me: this is some serious shit I'm in. 

The pain and fatigue are not going to go away.  More serious treatments than what I'm on would leave me immuno-compromised.  The lupus could attack my brain.  And they wouldn't know it, because until you start having seizures or go psychotic, they don't have a way to diagnose it. 

And maybe worst of all, everything about my job is making my lupus worse.  The only way to do my job is to get the lupus in remission, and the only way to get the lupus in remission is to stop doing my job.

I Remember Running, by Darcy Wakefield

You'd think it would help, reading about a condition that more severe than one's own, but sometimes it makes things oddly worse.  Wakefield got diagnosed with ALS, as an active 33 year old.  The book tells the story of her deterioration into near immobility over the ensuing year.  About a year after publication, she died.

Okay, so, yay, I don't have ALS, but it really brings home the helplessness of having a major diagnosis.  Wow, you think, it's possible to get really really screwed, with no warning, by your own body.

Anyway, I highly recommend the book.  It's really more the story of everything she did during that year of massive deterioration, some of which involved panicking and being depressed, but not nearly all of it.