But one 19th century institution missing from our world is a true loss: the health retreat. Back in the day they were called sanatoriums: resorts set up for the “improvement or maintenance of health, especially for convalescents.” Today the  idea of withdrawing from life to recover a bit health is so odd that most people, hearing the word “sanatorium” translate it as “nut house.”

My oh-so-slow recovery from my latest medical travail makes me long for this old tradition.

I ache to check out of my life for a time and into another, one where meals are prepared and laundry is done and my duties consist of napping, reading, and taking long walks through woods and meadows.

Thomas Mann wrote about life in a health sanatorium in the novel The Magic Mountain. A young man of no great intellect or ambition named Hans Castorp visits a friend recovering from tuberculosis in a mountain retreat. So taken is Hans with the sanitarium’s disconnect from the real world (the “flatlands” he calls it) he finds excuses to stay until, with a doctor’s eager encouragement, he imagines himself into tuberculosis and becomes a patient for seven years.

It might seem odd a book with such a subject was so influential on my young life. I found the lure of Hans’ introspective and purposeless life both horrifying and irresistible. Having spent a childhood in too much solitude caused by an introspective nature and aimless wandering around the country followed by a 1960s adolescence (no one should have been allowed to turn 16 in 1968) I wanted desperately to plant myself in some situation with defined and gentle borders. So I then thought anyway.

Mann’s deft novel talked me into the world, not out of it. The book laid bare the siren song of isolation and withdrawal; it showed me what is lost if you do not engage the world. The Magic Mountain was for me a necessary cautionary tale. For all the trials and tears I’ve had in this life, I don’t regret for a minute having engaged it.

Now though, after four years of medical ordeals that only an insane optimist or a fool would voluntarily endure, I long for a break. The miseries of the last year in particular leave me exhausted and in desperate need of renewal. I long for Mann’s mountain with its wooded paths and dining rooms, if only for a while.

In the 19th century there were health sanatoriums priced for nearly all but the poorest. Those with less means did not get the elegant treatment described in The Magic Mountain but they had places to go. Not any more.

Today a “health spa” is something you “do” for a weekend; a resort where you pay lots of money to have mud thrown onto your body and be served tiny little portions of gourmet greens with artisan bread and a Napa chardonnay. Activities are planned for the day, right down to the Swedish massage and the meditation hour. The spas of the 21st century are no place to go if you need to stitch your life back together after too much trauma.

I took break once before without succumbing Hans’ tubercular temptations. In 1996, after my first near-death experience (a “mere” bout of killer pneumonia) I went away to a little cottage – a studio really – on the beach. I slept and walked and slept more and rode my bike and wrote poems and was beholden to no one. When I arrived I could barely walk a block. By the time I left I was bicycling miles every day. So much changed – so much healed – in that one calendar month of March 1996. How I long to do it again.

How odd the idea is to us now: Go away and rest? For weeks? But what would you do? Restore? What’s “restore?” Dump everyone and everything you love for a month of solitude? Solitude? Do they have cellphone and WiFi there?

I for one don’t find it an odd idea at all. If I could only visit The Magic Mountain. Just for a month, I swear. One month.

–noun

1. Pathology. a quantitative deficiency of the hemoglobin, often accompanied by a reduced number of red blood cells and causing pallor, weakness, and breathlessness.

2. a lack of power, vigor, vitality, or colorfulness: His writing suffers from anemia…

Rrrrrrrrrrrrrrroad trip!!!

The car is tuned. It’s got new tires and is loaded down with jackets and maps and food for doggie and me and of course my camera and the tripod I always take and hardly ever use. The back seat’s converted into Otto’s Command Center so da pooch can survey the world from the comfort of his traveling bed. And we are driving down Highway 101 through the ridiculously green hills of an El Nino winter California listening to Roseanne Cash and Michelle Shocked on our way south to visit family and friends…

That’s what was supposed to happen.

Instead, Thursday I wound up in Moffitt Hospital a few pints of blood short of a six-pack, getting a transfusion while the docs scoped me out from both ends (yes: exactly that) trying to find the leak while I, delirious from lack of oxygen, a triple-whammy sedative of demerol, percocet and benadryl, and most of all too too too many medical procedures for any one lifetime, howled at the injustice of it all like a fourteen-year old grounded for a month.

Twenty-four hours later, my fluids topped up like a nursed engine with a cracked block, I walked out of the hospital with the hangover from hell and returned to my day life.

Huh?

If you cut a leg artery or your jugular or remove the tip of your finger you are immediately aware you have a problem. If you spring a leak internally however, not so much. Especially when you are in denial about any new medical problems because you’re feeling a wee bit put-upon after four years’ state-of-art medical S&M.

If you want to know how you know you have an inner leak look up melena, I’m not going to blog the details. I should’ve done something sooner: this isn’t my first internal bleed – not even my second or third. But I’m rationalizing maybe it’s the cherries I ate or maybe it’s the iron I’m taking or maybe it’s anything other than some damn disaster that will send me back to the hospital.

It was only a day or two before departure that I realized the trip was no-go. When you have no blood you have a hard time concentrating on a C.S.I. episode and you drive like a stoned alcoholic texting your next order to the bar you just left. 500 miles behind a wheel down California’s coast with no oxygen in your brain is not a good idea.

So instead of Rrrrrroad trip! I now sit at home while Otto goes on adventures with the dog walker, waiting for my hemoglobin to creep up to a functional level. Good news is, the top-up they gave me at Moffitt kicked in quick enough so I can actually read a book and do some stuff, if not exactly what I planned. Other good news is, the leak’s stopped. And it’s sunny for a change here in the Bay Area.

So: lemons, lemonade. Whatever.

–––

There has got to be an upper limit to how many procedures, transplants, runnings-out-of-blood, medically called-for cavity invasions, viruses and auto-immune diseases one body can handle. You think?

My deal is, I get to stay alive for some unspecified number of moments after the liver cancer and transplant. I get to be conscious, occasionally functional, and once in a while I even get to thrive. I also get to experience each and every sensation of a body running down its weave.

I’ve started and not finished a dozen posts on my health trials of the past year. One did refer to my struggle last summer just to learn that I’ve comedown two impossible–for-a-transplantee autoimmune diseases, but that’s it. I feel guilt for not having posted more.

Somehow I’ve made peace with the situation. A diagnosis and some medication to manage it – the AI’s, as I call them, will not go away until I do – helped. But somewhere along the way I lost the ability to write about it all.

If you really want to know more read up on dermatomyositis and Reynaud’s Syndrome. The acute phase of this mess, which lasted more or less from June to September, was the worst experience I’ve ever had medically. No, really: the liver transplant was a mere cut finger in comparison.

Until the Reynaud’s was under control I literally couldn’t write – rotting nerve-fired fingertips do not encourage typing. Now I’m just weary of of it all: repeating symptoms over and over to too many doctors; explaining to friends and family why I was having test A then test B and then test C then explaining to them what the docs found when they finally found something; wrapping my own head around the diagnosis because once again I achieved the impossible as someone with a transplant and a deliberately suppressed immune system can’t get an autoimmune disease except I got two… and blah and blah and blah and BLAH.

I just couldn’t whine anymore so I stopped. Better to write essays about California’s crazy seasons and anti-vaccine idiots hanging outside the H1N1 clinic and how the good old U.S. of A. is once again following California (coming soon).

So. Under the terms of my imagined deal with the Fates I live the frayed ends of a life and find the beauty and happiness where I can while trying to ignore the miseries. Denial, as I’ve pointed out, is a Good Thing.

Truth is, the Fates don’t deal. I have no idea when Atropos will snip my thread. It is chilling to know that even the gods feared the Fates. Even Zeus was subject to their whims.

I stuffed the thing in my pocket and went in.

After rolling up my sleeve and getting the poke, I dug out the crumpled paper, went up to one of the anti-vaccine guys and tapped him on the shoulder. He turned around. I silently held out the crumpled paper and stood there. Staring at me quizzically, he finally extended his hand. I dropped the crumpled yellow sheet into his hand and walked away. He looked at me and at the paper, confused.

You can’t argue with these folks. But you don’t have to carry their garbage.

I’ve been working on a few thoughts re: the healthcare “debate” we’re having in the U.S. from my perspective as a “professional consumer” of same. I didn’t plan to write this, though.

I have been seething at the treatment President Obama received addressing Congress about healthcare last Wednesday. The disrespect shown him – not just by Addison Graves Wilson of South Carolina, aka. “Joe the Heckler” but by the entire Republican caucus – was nauseating. Almost to a person, these “statesmen and women” of the opposition heckled the President waving sheafs of paper, petulantly pouted, booed and catcalled, and shot him endless hate-filled sneers worthy of a pissed-off 8 year old. One congressman even walked out for benefit of the cameras. It was disgusting.

Their venom has nothing to do with healthcare. It has everything to do with race.

Like the birth certificate flap that entertained us through the Summer, Spring’s anti-stimulus “tea parties” and pretty much every other pseudo-conflict stirred up since Obama’s election, the racial subtext of the health care “debate” is blatant.

Some people cannot abide having an intelligent, thoughtful black man in the Oval Office.

Finally someone with a pulpit has put the obvious out front and center. Maureen Dowd titled her column in yesterday’s New York Times Boy Oh, Boy, putting the missing word back into Wilson’s shout out, as in “You lie, boy!” Think about it for a nanosecond and you know she’s right. The old racist code word for black men was loud and clear.

Now, read carefully: no, not everyone who disagrees with Obama’s health care plans is a racist. Reasonable people have fiscal objections to government-run health care, philosophical objections, objections about his approach, and there are all sorts of worries about what change might do to our precarious status quo.

Are you hearing those people? No.

You’re hearing a U.S. senator boast how he’ll destroy Obama’s presidency by destroying his health care bill. You hear Master Wilson’s “liar liar” and how it’s netted him over 700 grand for re-election. You’re hearing Lindsey Graham – the so-called “reasonable” South Carolina senator – and a gaggle of other legislators calling the President a disaster.

And as always when politicians blow hard at the bottom of the barrel, they stir up muck.

Look at pictures from last week’s “tea parties”. Read the signs. You don’t need a psychic to see the real point of the protests. Obama is a “Fascist Muslim Communist!” (Will someone please tell me how anybody can be all those things at once?) Another shows Bin Laden passing the terrorist baton to Obama. Some of these fine patriots even put Obama’s picture in a pile of horse manure and took each other’s pictures standing in it. That’s a debate?

Death panels, granny-killers, black-on-white racism, a senator (Inhofe of Oklahoma this time) grandly proclaiming “I refuse to read the [healthcare] bill and I’m proud to vote against it!” Guns at town halls. Radio talk – serious – of killing the President. And anybody who has any kind of rational argument for, against, or middling on the actual issue of health care is a terrorist supporting a terrorist.

Don’t agree? Don’t think it’s racism, just strong opinions about a contentious issue? Take a look these photos from the first “tea parties” in April, set up to protest the stimulus package: “Obama’s plan: White slavery.” “The American taxpayers are the Jews for Obama’s ovens.” You look at the rest. I don’t have the stomach. The racial subtext has been front and center for the opposition from the moment Obama was elected.

The Obama presidency has brought out the best and the worst in America. So many of us have a quiet pride in our nation taking such a significant step last November, including many who disagree with him and didn’t vote for him. But at the other bottom of that barrel are those so incensed by his election they welcome him as termites welcome an exterminator. They cannot abide – abide! This! New! World!

Racism is the venom in the veins of America. It’s time to get it out – to call it out – before it kills us.

This “debate” disgusts me. And it has nothing to do with health care.

This happened yesterday. The only info you need to make sense of it are a) I was in the hospital for a few days about two weeks ago due to high fevers following an endoscopy (a look down the throat), and b) when they were looking, the docs saw something that concerned them,  declaring it Must Be Removed. I agreed. Now if only I could get it done…

Rather than polish it up and risk losing the, er, spontaneity, here’s the eMail I wrote to my friends.

Went to ENT (Ear/Nose/Throat) clinic today to get the thingy in my throat removed. The following happened:

1. Doc saw me, said situation is exactly what the docs in the hospital had said two weeks ago: growth on pharynx, probably papilloma, needs to come out. Said he’ll do an excisional (right word?) biopsy removing the whole thing (unless it extends into my brain or some other inconvenient spot). I said hooray for that!

2. Doc then repeated exam done in hospital, sticking crazy snake-camera down nostril into throat. Confirmed alien sighting and repeated all he said in #1.

3. Doc then read me my “rights” i.e., told me the risks of removal: broken teeth, breathing cessation, gagging, sore throat.. all the little things that can go wrong.

4. I said “Fine! Lets get this done!” (After you’ve had a transplant little stuff holds no terror).

5. Doc, shocked at my assumption, said: “Oh, no! We don’t do that kind of thing here!” (“Here” being the “UCSF Otolaryngology – Head and Neck Surgery” clinic. You think?) “You have to go to Parnassus (different campus, one with hospital) for that.”

6. Me: “You mean… Moffitt?”

7. Him: “Yes. It’s a hospital procedure. Surgery, actually. You’ll need anesthesia, a room, a…” he keeps speaking but…

8. …My mind stopped processing. When it recovered…

9. Me: “You mean, in Moffitt Hospital, with an IV hookup like I had two weeks ago when I was in there… and when a whole team from your department first found this thing and shared lots of looks of it through your nose camera… the same hospital where my attending doc wanted your department to take care of it right then before I went home… and where I was quite willing to stay an extra day in order to get it done… where…”

10. Doc, with slightly apologetic / mostly I’m-in-control-here look on his face: “Yes! We’ll call to schedule sometime in the next two weeks.”

11. Me: another mental blackout.

No, I did not take him out. Nor did I make a (huge) fuss. My rep at UCSF Medical Center is no worse (or better) than it was before I got there. But JEEZ LOUISE!

I also had my blood drawn at the lab, regularly scheduled. The Neanderthal in residence  gave me a hematoma (blood blister) the size of a grape.

All in all a great afternoon.

To belabor the obvious: besides being very inconvenient (and uncomfortable: the growth is irritating), think of the money wasted: another day, maybe another night in the hospital. A totally unnecessary visit to the ENT clinic to confirm what they already confirmed. Billing for same. Hospital resources wasted. My time wasted. Docs time wasted.

Usually these stories point the wagging finger of shame and blame at the insurance company/HMO. Not this time.

UCSF Otolaryngology – Head and Neck Surgery Department, come on down! This is your FAIL!

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down.

Which option, or if it’s some other exotic autoimmune condition, is mostly a debate for medical folks contemplating how many viruses fit on a head of a pin. From my point of view, it’s all the same: think full body onset of severe arthritis, coupled with rotting fingers, inflamed mouth, and really achy muscles. And that’s just looking on the outside; I won’t let them look at my innards. This is a full-body miserable.

To put a Stephen King spin on it, it’s like aging from mid-fifties to mid-eighties in three weeks. A real joy, that. And I was so vain about my much-younger flexibility. Ah, vanity: you are so one month ago.

So now I’m being treated with HIGH DOSE PREDNISONE.

What’s really freaky about all this – beyond the miseries and the HIGH DOSE PREDNISONE (those who’ve experienced high-dose pred know why I shout; the rest of you just think Roid Rage) – is that I am not supposed to have this problem. Not in a teleological “oh why me poor me?” sense, but in a medical one. You see, the treatment for conditions like dermato-whosis-whatsis is… immune suppressant drugs. Not just any immune suppressants, but the exact ones I’m taking to keep my almost-three-year old transplanted liver happy. My immune system is already suppressed (just ask any cold virus) so I shouldn’t get no autoimmune crap.

WTF???

Lots of medical heads are being scratched over this one.

One of the dilemmas encountered writing about navigating an eternity of medical adventures is, every time you have another one, it gets harder to document and easier to whine.

Truth is, it’s hard not to whine, at least a little. I’m not Mother Theresa (actually, Mother Theresa wasn’t Mother Theresa either if you believe the reports; she complained quite bitterly about most everything). Today’s whine is because this situation is damned uncomfortable. More uncomfortable even than surgery. Yes, I’d rather be cut open again than go through this.

And I said painful, right? I’m learning a lot about chronic pain: I am reduced and humbled by it. I beg the forgiveness of everyone I’ve ever known who has been caught in its velociraptor jaws for not giving them the respect and concern chronic pain deserves.

Regular pain is to chronic pain as a bad mood is to a severe and unending depression.

Don’t know what happens next. I see three kinds of docs next week and “answers” will be “presented”. What answers, and what kind of life they lead to… well… One thing the gloomy ‘net articles all seem to agree on is, there’s no “cure” here, only “remission”. And there’s what my body’s telling me, which is I’m not leaving this People’s Republic of Autoimmune anytime soon – if ever.

Maybe a better way to phrase the question in the first paragraph of this rant is, “There’s got to be a maximum number of diseases before your mind just goes POP! and refuses to play any more.”

I’m one of those people single-handedly running up the costs of American healthcare, using just one tall, skinny body.

Too Stupid To Die, indeed.

Go, HealthNet!

Go, America!

He asked a lot of questions. As his partner in that hospital room had said a few minutes earlier, meeting someone who has actually been through the craziness of a transplant is more helpful than reading medical abstracts. (I felt an immediate bond when he said that: one wonk can always recognize another.)

As I answered questions about my experiences I realized it wasn’t approximately three years ago when I learned about the cancer in my liver and my own quest for a transplant began: it was exactly three years. To the day. 

After we parted I walked to my car, secreted in a relatively unrestricted area near Golden Gate Park about 10 minutes away. I kept walking, right into the park and all the way to the AIDS Memorial Grove. I wasn’t planning to go there. The grove is a quiet area in a small glen filled with beautiful plants. It has been there long enough that the young redwoods can now be called trees.  

I took some pictures – my own solace and serenity these days – then returned to my car and came home.

I’ve been fretting about the economy and my diminishing place in it the last few days. Who isn’t? Listening to that troubled man… meeting his stuggling partner in the uncomfortable bed on Nine Long… in a hospital room I’ve been in myself… remembering that telling phone call three exact years ago…

Three years count so much more than numbers on a financial spreadsheet.

I was puzzled. Neither of us had said anything amusing.

What’s funny? I asked.

You, he said. Listening to you rant about phone calls and classes and traffic jams instead of your medical  operations or test results or upcoming procedures. I haven’t heard you do that in years.

Ouch.

I was stung for a moment, even a bit ashamed. WHAT was I doing, fretting about such things? After where I’d been? Perspective, Ed, please! Perspective!

And then I rejoiced.

Did I ever expect to worry about such everyday problems again? Did I ever expect to have everyday problems again? How far I’ve come! And how damn amazing is that!

I deeply thank my dear friend for that lesson.