So I’m in the desert east of San Diego stalking wildflowers and staring down bighorn sheep and wondering, to slightly misquote one of our more interesting pop bards, “My God! How did I get here?” Which leads of course to a tale.

—

A doctor recently pointed out my sense of denial is missing. You know, that state of bliss we wander in most of the time? The bliss that says: I’ll exercise tomorrow. Supersized French fries and a double burger don’t bother me. I am NOT getting old! Breathing hard climbing a flight of stairs doesn’t mean anything. Yeah, granddad died of heart failure, grandma died of cancer, mom has diabetes and pop can’t remember where he is half the time. So? None of that stuff’s going to happen to me! Die? I’m not going to die!

You know, that sense of denial.

Alas, mine must’ve been located between my liver and gallbladder because I just don’t have it anymore and it didn’t take a doc telling me to figure it out either. Meet for lunch? Sure, if I’m not in the hospital. A movie? Great, if I’m not wacko from this week’s injections. Take a trip – like this week’s to San Diego? With my track record??? You nuts.

But I did get here, not that I believed it until the plane touched ground at Lindbergh Field. Yes, I planned the flight. But the ticket was paid for with funds left over from the same trip scheduled and canceled twice (guess why) in the last year. The suitcase didn’t even come out of the closet until 9pm the night before I left. Something would happen. Something always happens. Yet despite late commuter trains, two flight delays (including one of those lovely sit-on-the-tarmac experiences) I made it to SoCal. Not even the airport security rambos stopped me. Amazing.

Absence of denial isn’t the same as being a pessimist. I’ve been a disciple of Candide (”The best of all possible worlds!”) most of my life – at least the good parts. Life with denial is comfortable; you get to take each other for granted. As with most relationships you’ll usually survive a single infidelity: a body-bending car accident say, or a bout of pneumonia or Lymes. Sometimes denial even sticks with you after a hard-won battle with cancer.

But for the chronic among us, different rules. Two years of cirrhosis, hepatitis, cancer, chemo, liver transplant, injections, another surgery etcetera dumped a truckload of reality all over me and now I can’t help but see denial for what it really is: a preposterous wish. I still don’t run around expecting the worst but I’m not surprised at all when it comes.

One of my more impossible fantasies for this trip was to drive to the desert 150 kilometers east of San Diego known as Anza Borrego. During late February and March Anza Borrego presents one of the most formidable wildflower blooms around, and with California’s generous rainfall this year it looked to be a great time to go. But if the prospect of getting on a plane was doubtful, the prospect of driving to wildflowers… well!

I’ll skip the details but I did make it to AB, for two days and a night. I managed a sunset walk of a kilometer or two, and wonder of wonders, an early morning hike up a palm canyon, six kilometers of climbing rocks and dodging thorns hunting down a grove of wild palms. No one is more amazed than I am that I pulled this off.

—

So there I am, hiking around Anza Borrego’s foothills and the “denial issue” keeps popping into my head and I can’t figure out why. I’m here to escape all things medical. Denial left long ago; I know this. “Old news, Ed! Now look at the pretty ocotillo!” Yet I keep obsessing.

As anyone who lives in one knows, there are reasons revelations happen to people who wander deserts. Relentless sun, mirages, austere beauty, heat and cold, often at the same moment… deserts disorient. They banish endings and beginnings, strip away time and reason. When you’re in a desert you are alone with the here, the now. Wander in one long enough and revelations ooze out the scenery. And so I have mine, and I understand my obsession and the real reason I came to Anza Borrego.

I miss denial. I want it back.

I want to fret about the errands I have to do, about next month’s plans, what to make for dinner. I want to complain about minor aches and getting old and having too many responsibilities and yes, even a job, something I haven’t been able to do for too too long because I haven’t been able to work. I want… I want…

I want to obsess about living again, not about staying alive.

This trip is my fantasy reunion with denial. Here in Anza Borrego I take pictures of flowers and bighorn sheep and cactus green from rain. I watch the sun rise orange and set in an annihilation of color. To get here I drove the winding hills as I did in my sports car days: free, fast, exhilarated. I explore and plan and have conversations with strangers about where to go and what to do filled with phrases like “yes, isn’t it beautiful?” and “you have to see…?” conversations that do not once touch on anything medical.

Oh, denial does visit from time to time. I don’t think I could survive if it didn’t. Sometimes it drops by during a walk with Otto along San Francisco’s waterfront by the Golden Gate, or for a few minutes while I’m working in the garden. Sometimes, oddly, denial comes around while I’m writing these words, bringing hope that I can write more and without a medical theme. But these visits are always brief and porous. My visit to Anza Borrego is no exception.

Right now, my energy flags from all these heady adventures and from the euphoria of having pulled them off. Soon I’ll get on a plane home. Monday I’ll have a blood draw, in a week my next visit to the docs. There are prescriptions to fill and important medical decisions coming…

Denial and I parted two years ago; there’s no way I can pretend we’re still intimate. Our separation is permanent.

—

[Click on this link for more pictures of Anza Borrego.]

My first trip post transplant scar repair surgery and its unintended consequences – namely a bulge on my belly the size of two tangerines I call “the bubble” – coincided this morning with my first trip in years out of SFO (San Francisco International Airport). Normally I fly from Oakland – cheaper fares and a much better record getting the planes off the ground – but Southwest offered a deal so I gave it a try. (For those who care: of course my flight was delayed. Two. Point. Five hours. Go, SFO!)

Befitting the Bay Area’s high-tech rep, SFO is one of the airports the U.S. Transportation Security Agency (TSA) uses to showcase their latest and greatest anti-terror scanning equipment. Security check points there brim with tech-toys and the guys – males, almost to an agent – to play with, er, run them.

A series of coincidences got me to the airport early. Fine, I think: I’ll check the bag, run the security gauntlet, get some food and relax. I do have a small security worry, namely my new camera and lens, one of my few indulgences this last year as compensation for my medical tortures. What is TSA’s policy on a digital SLR, extra lens, spare battery and the other stuff in my camera bag? Since 9/11, I’ve only flown with a point-and-shoot which TSA never once so much as acknowledged.

As far as security and health stuff, I’d checked most of my meds – some of my anti-rejection drugs are so toxic they’re individually wrapped in lead foil which invariably leads to a hand-search I’d rather not be present for. Otherwise, I’m not injecting myself with anything these days so no needles to worry about and I don’t have any other overt medical issues to explain. Uh huh.

At SFO’s security the burly TSA agents outnumber the passengers. “Over HERE,” barks one, directing non-existent traffic. “Use THOSE bins,” orders another. “LAPtops CELLphones ALL E-lec-TRONic deVICES go INto the bins…” blah blah blah. Answering my question, he orders my camera out of its bag and into a bin of its own. “Shoes?” I ask. Surely all these latest’n'greatest security toys have eliminated the need to take them off. Not. I toss my hiking shoes on top of my backpack and move to the scanner. Though no one’s in front of me, I’m stopped before I enter.

What’s that?” A TSA agent is pointing at my belly.

Left to its own devices my belly bubble protrudes a couple of inches out of my abdomen – more if I’ve just had food or water. To compensate – and keep worse things from happening (you don’t want to know) – I wear what is referred to in medical jargon as an “abdomen wrap.” I call it a girdle or when it’s really irritating a corset and seriously question the sanity of anyone who wears such a thing for stylish or sexy reasons. What were they thinking in the 19th Century? (And no, it wasn’t just women; a fair number of men back then wore the horrors too).

To hide my wrap, or at least minimize it, I wear it over a t-shirt and a shirt or sweater over them both. This works – at least until warm weather arrives. I’ve wondered how much people actually notice with all this under-binding. Now I know.

“It’s a hernia along a transplant scar,” I say to the agent, going for the simplest if not quite up-to-date explanation. I get a look of incomprehension. “I had surgery, a transplant. That left a hernia which bulges so I wrap…”

“You’ll have to step in there sir.” The agent points to a glass cage. His face becomes a study in distaste. “You’ll have to be patted down.” But he’s not going to do it. Turning to the other TSA agents milling about he announces, “Non-alarm! Please examine.” TSA jargon I assume for ‘he doesn’t really look suspicious but we probably should do something so we look busy.’

From inside the glass phonebooth I see the trays with my camera, computer, shoes, etc., pop one on one out of the X ray scanner. The camera lens points straight up advertising itself. No agent pays the slightest attention to my stuff. A few passengers come and go. I wait. Finally I address Agent One who, his back to me, is making sure I don’t bolt from my cage.

“Uh, could you process me please? My stuff is just sitting there and I don’t…”

“It’s ok. It’s fine. Fine!” Agent One again calls to the herd of gossiping agents, this time louder: “Non-alarm! Examine!”

Eventually, another Agent, call him Two, exuding as much testosterone as an extra from a “Rock” movie, comes over and opens a second door to my phonebooth. “Stand here sir,” he says, pointing to an arbitrary spot on the floor. He studies me. I’m pale white, skinny and 50s – about as far from the terrorist stereotype as you get. He looks at Agent One. “No alarm?”

“No alarm!” repeats Agent One for the third time. “He needs to be checked,” pointing at my belly.

What is that?” asks Agent Two. I re-launch my transplant-hernia explanation. He’s not getting it, so I lift the sweater. He sees the wrap holding in my innards. This causes Acute Agent Distress in both One and Two.

“What is that… belt?”

It occurs to me that maybe, just maybe, to an untrained eye maybe an abdomen wrap bears some small resemblance to a suicide bomber’s belt. Could that be it? But, like, dude? They’re TSA agents. Aren’t they, like, trained? Don’t they see lots of medically cobbled-together people going through their portals every day?

I decide to end this the easiest way I can think of (ok, I’ve been waiting for the opportunity) and pull the Velcro.

“Don’t!” It’s a shriek.

The abdominal wrap falls away and my double-tangerine bubble bulges obligingly under my t-shirt. “See?” I say. The macho TSA agents freak. I think sticks of dynamite would be more welcome.

“Put it back on, sir! Please put it back on!” shouts Agent One. I do so.

“Pull the shirt down, sir,” says Agent Two. I pull down my sweater, covering my re-wrapped middle.

I am quickly banished to the insides of one of the new puff-of-who-knows-what gas scanners to be checked for bomb residue (the light turns green which is good) then my palms are wiped with those pads that check for explosive residue (negative, also good). Finally, in what can only be described as an act of Heroic Bravery in Defense of America on the part of Agent Two, he orders me to lift my sweater again and wipes the outside of my binder with another bomb-residue pad. Negative. “Pull your shirt down sir,” he says firmly.

And I am released. I get my camera, computer, shoes, etc., sitting forlorn among the idle security equipment. Pulling on the shoes, I hear a senior agent complain how overstaffed they are and somebody needs to go home. They ignore me completely. I get the feeling that I didn’t even give them the satisfaction of protecting American skies for another day. Oh, well. One does what one can for The Homeland.

Despite my medical tribulations I’m in pretty good physical shape. I can “pass” – mostly – as “normal.” I figure if anyone notices my abdominal wrapping at all they assume I’m one of those oddities, an anorexic male out to hide his mid-life bulge with a “weight trimmer belt.” As I go in search of food I’m smiling at the experience but I can’t help but wonder: how do people with medical problems a lot worse – and more visible – than mine fare in our unhappy little security state?

If there’s one thing everybody knows about those of us who have body parts replaced, it is that we have to stay on anti-rejection meds the rest of our lives. One slip and our immune systems go haywire and try to expel the alien organ. Rejection is NOT fun: you get two grams (yes grams) of a IV form of prednisone (Solumedrol) dumped into your veins, lose what little is left of your immune system and go stark raving bonkers in the meanwhile. I’ve seen people in 9 Long - the transplant floor of UCSF’s Moffitt Hospital - suffering through this madness. They don’t mess up their rejection meds again.

Hold that thought. We’ll be right back to it.

When I was being evaluated at UCSF for my own liver transplant, if and how it would get funded was a real worry. I ignored the worry for a while - there were the million evaluation tests to get through, a chemoembolization to shrink the tumor they’d found, etcetera. But eventually the financial fretting took over: What if, after going through all the steps, the insurance company said no? One of the doctors evaluating me suggested I talk to a UCSF financial counselor.

“Don’t worry!” said the counselor. “The insurance company will likely want a second opinion and that’s normal. But you shouldn’t have any trouble getting approved.”

“How do you know?” I asked. “Heck, how will I know? I haven’t heard word one from HealthNet’s HMO since the tumor. What if I go through all these tests, you find me a liver, and HealthNet goes, ‘Oops! Sorry! Can’t afford your transplant, we have a bottom line and you’re not in it.’”

“Are you getting regular care here?” He asked.

“Yes.”

“Then things are going ok.” I looked at him puzzled. “Believe me,” he said. “We wouldn’t be doing anything for you if the insurance company wasn’t funding it.”

Nice, that.

Obviously I made it through the approval, a liver was found, and the transplant happened, all without a peep from HealthNet. I was as amazed by their silence as I was by having my body ripped open and an organ replaced. Transplants, especially liver, are expensive (there’s a lot of cutting and pasting involved in switching livers) usually to the tune of $400,0000 to half a mil. And the insurance company never squeaked? Wow.

A few weeks later, I’m out of the hospital recovering well (this is before my other complications set in) and I go to fill my prescriptions for the anti-rejection meds. Denied, said the pharmacy. Not part of HealthNet’s formulary, it seems. Medications deemed not necessary, it seems.

Huh?

And here we are, back at this post’s start. I had a transplant. The hospital staff beat me over the head making sure I understood that if I didn’t take my meds the organ - me too incidentally - is toast. And everybody knows etc., etc.; surely ‘everybody’ includes health insurance companies too? How could HealthNet not even squeak about dropping $400k for the part swap but now balk at a few hundred dollars for the meds needed to keep it functioning? Huh? Huh?

After much back-and-forth between UCSF and HealthNet it was decided that, yes, a transplant recipient probably does need anti-rejection meds and they were duly authorized. End of story? Oh, no.

Fast forward to today (Feb 08), post transplant 18 months and counting. Into the pharmacy I go to pick up my monthly supplies. My Myfortic, one of my anti-rejection meds, has gone from $7 copay to $170.

“Why?” I asked.

The pharmacy didn’t know and suggested I call HealthNet. I call, wind through the “press 1 for life, 2 to die on hold” nonsense, get a human and after much back and forth, learn that Medicare and the HMO, now working together (isn’t that a marriage made in hell), have de-authorized all rejection meds for 2008. I am out of “Huh’s?” at this point though other words that came to mind.

There is a happy ending here of sorts. Just as UCSF has a person dedicated solely to deal with financing transplants so it has a person whose job is to make sure those same companies don’t cut off transplantee’s meds after the transplant’s done. Seems I’m not the only one with this problem. I called her - we’re on a first name basis now - and after 24 hours HealthNet decides that I probably do need anti-rejection meds and probably will for the foreseeable future - at least mine. My UCSF contact was jubilant. “I told you,” she said. “HealthNet is one of the easiest to deal with.”

Sheesh. God may bless America, who knows (I have my doubts). But she clearly forgot to include our health care system.

No one external to me - not part of my day-to-day life - has helped me survive the illnesses, the medical trials, the near death experiences of the last fourteen years more than Susan Sontag. No ideology, no “positive attitude,” certainly no god or religion has provided more solace or strength.

During my first hospitalization in 1995 I brought along her book Illness as Metaphor. I had read it years before but I read it again while struggling to stay alive - it was near-fatal pneumonia that year - and in those pages I found courage and reason to continue fighting.

Eighteen months ago, walking the halls of 9 Long, the transplant floor of UCSF’s Moffitt Hospital, the night before my liver transplant I again had Sontag’s book with me. I didn’t read it that time - maybe because the promised outcome was so different - but it was nearby always. A slim paperback, it was even under my gurney when the too-cheerful nurses wheeled me into the operating room.

Sontag died of a hideous cancer in 2004 on December 28, a day that makes me laugh and cry and shake my head at the dark humor of the universe. December 28 is the day my father died. Exactly two years later lacking only a few hours my mother followed. More friends have lost loved ones to that dying season than I can count. And just a month ago on December 28 I begged a friend to take me to the hospital because the pain of my latest medical debacle was so bad I thought the date was calling me. I was wrong, but too much has passed on December 28 for me not to harbor superstitions about the day. And now, Sontag.

Her son, David Reiff, has published a memoir of Sontag’s last year called Swimming in a Sea of Death. It is as tough and unforgiving as was its subject. Hard to read, but like Sontag herself somehow it helps.

The title of this post is a quote from Reiff’s book (page 53). The immediate answer to his question is of course, “Power, dummy! How could it be otherwise?” That was Songtag’s position - she prided herself on being a life-long student - as it is mine and probably yours. And that attitude’s the only one to have if you want to get through life. But when the information is unremittingly horrible, without hope… what then? Do the rules change? Do you change them?

At first Sontag tackled her final cancer (she had three different types over thirty years) with all her “knowledge is power” convictions intact. But as the impossibility of her situation became apparent Reiff says she seemed to take comfort in forgetting. How unlike her! How distressing to those who knew her! Yet what else could she do? Consider another quote, one that applies to all of us:

Somehow a fundamental disconnect has now arisen between the reality of death and the reality that one has to die of something. –p61

Fundamental indeed. That disconnect is at the root of our humanity and the root of our forgetting. Even Sontag gave in to it in her last days. Medicine - science - will cure. How can it fail us? We insist on going until we cannot. Then we pretend and when our pretense gives out we lie and force ourselves into forgetting. What else can we do?

Sontag, in Metaphor, talks about moving from the “Country of the well” to the “country of the ill.” Reiff adds to her list the “country of the dying.” I have not stayed long in that final country but I admit to resting there a while. When my own December 28 does come, I think Sontag will offer solace even then.