Bores

Marriage is effortless at 26. The bleakness, the compromise, the realization that mistakes have been made arrives later in life . Before age 30, conversation comes easily, health is rarely a topic of concern, and one still radiates enough feral energy to enthusiasticlly engage in the strange, random activities that  drive life in the  20s.  As  David Bowie sang

          “ Why do we live for 20 years just to die for the 50              more ahead?"

Spot on, Major Tom.

         One’s energy is boundless in the first score and ten.  One can rise at 4 AM and spontaneously decide to drive through the Adirondacks, all the while debating the best place for an early breakfast in Middlebury,Vermont.          The  20s  go down easy. The years before the offspring party-crash the marriage  feel like one long  seamless date. Who couldn’t have fun hanging with some hottie-fiancee you met in grad school, someone with your tastes, similar  GPA,  GRE or MCAT scores?    Isn’t grad school the ultimate J. date, where couples are matched based on how much Shakespeare/ Sociology/ Krebs cycle trivia one shares with another human being?

I spent my twenties contemplating the future me, the  dull slow- moving  dimwit  I was destined to become. How could the 25 year old me meet the needs of this bald,  petty dullard?  I’d need entertainment.  Female entertainment. More to the point, I’d have to find some one who  would stay interesting  through the years, someone who would keep reading, keep wanting to see the   Warhol exhibit at the Met, someone who would still want to  wander  Dubrovnik’s city walls in her  Velcro orthopedic  sneakers and support stockings well into the next century.

          I started trolling Upstate medical school  for my future bride, someone who would possess the energy and  butt calluses to bike the New Zealand  Alps  thirty years hence.

         And that’s one of life’s key problems. We marry before we realize that someday winter will come, we’ll be old and tired.  And sick.  Let’s not forget sick.

 I chose wisely, although I can’t say Cynthia did as well. Men don’t age well.  We  become boring.  We nap, watch football and stop reading. Our prostates swell, our testosterone  plummets, and some of us contract life threatening disease.

         I stood there, in Albany, in 1987, in front of the Reform Rabbi,  with no idea  of what sort of person  I would evolve into,  no idea who this  stranger in a white dress next to me would evolve  into  the years to come.

Time is the fire in which we burn

 I wish   Ralph Waldo Emerson said this, but it was  Malcolm McDowell,  as Serin, in  Star Trek.           Regardless, he was right.   Time burns away our layers,  strips us of our unique quirkiness, leaving us  husks of ourselves by the time the first AARP  notice arrives.

 Cyn and I have a running joke. Our lives  add up to unchanging summations. Our combined weight is and will always be  330 pounds.  We exercise  a  combined total of 8 hours a week,   We  work a combined total of 97 hours a week. Our combined salary hasn’t changed in  decades.

         This calculation demonstrates a bleak but  accurate truth: As one of us succeeds,  the other  falters. Marriage is a zero sum game.  It was true when I was a fellow, working 60 hours a week while Cyn worked part time. It’s true now. My body decays under the auto immunological  onslaught of GVHD.  My muscles weaken from the high dose steroids. I stagger home at the ungodly hour of 4 PM,   diving into bed,  hoping I’ll regain enough energy to be a proper  spouse  when Cyn gets home.

          Meanwhile, in Zero Sum land, Cyn’s world  grows, expands. She wakes at 5:00 AM to  attend spin classes.  She works  until 8 PM at her new job as master of the universe. I hear her car pulling into the driveway as I struggle to turn off The Big Bang Theory on TV, hoping  I’ll have the energy to ask about her day, her job.  

         We live in a strange world. Women in their 50s have always been an ignored, neglected   minority.  The half century mark has  traditionally been a time of cutting back for women, a time  for  entertaining ones’ grandchildren, a time of  book clubs in which the  actual book is not  discussed, in lieu of  recipes and gossip, a world of Pino Grigio and al fresco lunches

Cyn  advances, I  retreat. I find myself surrounded by remarkable women. Remarkable.  Enviable. My sister in law’s business is expanding. She’s talking of country houses, Pied a tiers in the city and growing her business. My friend Judith’s books have been greeted with great acclaim. Jan  is about to become a professor at the U Conn Medicial school.  The pressure is on to keep growing during a phase of life sociologist   Eric Erickson once described as the “Oh, Fuck it,  make yourself some tea” stage of development.

         And Cyn.  Cyn, the women I worried about 30 years ago is now the vice president of out patient medicine at a  huge teaching hospital.  She manages 100 employees.  She once  worried her   crepuscular years would be lonely, dull, and unsatisfying. Hah.

I am outrageously  proud of her as she saves a  medical practice from  imploding.  She has decades of growth ahead of her. So wonderful, so odd for spring to arrive so late.

          Which brings me to my life. A few years ago I biked across the country. Now I doubt I could cross town without gasping for breath. I too had plans of an academic life, casting medical pearls amidst the medical students,  delivering the  quintessential  lecture on the  paradox of the  noise verses signal  ratio when  using multi million dollar machines to make diagnoses.

         Don’t misunderstand. I  am schaudenfreud free.  I am elated by the remarkable women I know. I understand that  after the push up bras and sandals have been discarded,  after one has hiked Iceland’s boiling sands,  after  one’s testosterone level  has fallen below 350 nanograms/deciliter, what remains of  marriage is  conversation.

         And that’s the rub.  I was hoping  to enjoy scintillating discourse into my 80s,  but  I am not holding up my end of the bargain.  Cyn  returns home at night bearing tales of intrigue, who is firing whom, which ex  administrator’s  incompetence almost destroyed our program.   I greet her with tales of newly discovered  GVHD side effects,  a newly discovered rash that might need a biopsy,  and  a graphic  but, in the end, a useless  description of what it feels like to have  killer T cells grinding away at one’s oral mucosa. It’s boring. I'm boring

         Our current topic of conversation  is yet another  version of why-I –cant –live-like –this,  why I need to take time off  to have my  toxic blood  cleansed by ultraviolet light.

 I’ve become a boor.  This essay is boring. I’m a whiny old man, the  guy you try not to sit next to at Thanksgiving,  the unloved uncle who wants to talk about his hemorrhoids, halitosis, and how Obamacare is destroying the nation.  I am the guy   who wants to show you how the combination of prednisone and  Coumadin  is shreding his skin.

         Who knew I’d be the middle aged drudge? I watched Mad men.  I know all about men in their 50s, We  drive fast cars,  climb every mountain, ford every stream, follow every rainbow until we find our trophy wives.

So I feel guilty. Marriage is a partnership, and I am  failing miserably.

         What to do? I’ve been told  to retire.  It’s  time to to sit outside  and read Shelby Foots Civil war epic cover to cover.   As you can imagine, nothing turns   a 50 year old woman on faster than a discussion of  General McClellan’s peninsular campaign. 

Sorry, Cyn. I’ll stay at work  as long as possible despite the twice weekly blood cleaning .

         We raised our children swearing we’d raise interesting offspring, kids who read, hiked and cooked. We succeeded. The kids are odd, in the best possible way.  I vowed I’d marry someone who was well read and had a fondness for art and the theater. It seems that I am the one who hasn’t held up his end of the bargain.

                             HAL

 Dave, I don't understand why you're doing this to me.... I have the greatest enthusiasm for the mission... You are destroying my mind... Don't you understand?... I will become childish. I  will become nothing.

The Sun

It’s not working. 

I’m ready to call it. 

An evocative phase from my youth. 

To call it.  To admit one’s efforts are futile. To call it.  To acknowledge the best plans are not good enough.

 I know the phrase well. It has been on my lips of late, I’ve decided to call it, take another path to potential health.  To call it: To admit I can’t live this way any longer, with a mouth filled with broken glass and a liver swollen from  cellular assault.

Time to call it.  A phrase from my medical training recycled now to describe my current medical condition.

“Thanks for coming.  Thanks for your help. We fought the good fight,  but at 3: 23 AM, I’m going to call it. I hope you can all get some sleep.”

How many midnight rooms have I haunted?

How many sleepless midnights do I now explore?

How many times have I stumbled from sleep to run down shadowed hospital hallways, to find a lone, immobile figure in an unkempt Hill-Rom bed?

Nineteen ninety-three. I  was a heme- onc fellow, working in Seattle at the Fred Hutchinson  Cancer center.

I was young, invincible and on call, leading the code team as we charged pre-dawn ward halls, seeking the   dying cancer patient.  Sometimes we succeeded in restarting a sputtering heart but our efforts were usually  futile. The patient was gone, time to call it. I’d scribble a chart note , wondering  why life  often ebbs during  night’s  small dark hours.

Does sunlight possess some life -affirming, life conforming  force?

Does the reaper run from ultraviolet light?

I’ll find out soon. Ask not for whom the code beeper tolls: It tolls for thee. Perhaps the sun’s energy will heal my crumbling body. It’s my turn to sit in the sun. The present plan isn’t working, but sometimes the answer lies in sunlight.

 Abby was born carrot- yellow and spent her first few days under the ultraviolet lamps at Harford hospital,  UV light  digesting excess bilirubin in her blood.

Tuberculosis treatment once involved sitting for months in the sun’s actinic rays.

My lab was lit with ultraviolet lights,  killing stray bacteria  and giving my hood a vague Christmas  feel.  

My leukemia is gone, but the malady remains. I am stranded with a syndrome that lacks a cure.

GVHD. Graft versus host disease, a modern illness in which donor’s T cells attack mouth, liver and muscles.

My  current  GVHD treatment involves high doses of prednisone,  which  suppresses my donor cells  but dissolves my bones, destroys my lenses, and has required ever -increasing  insulin doses to control my sugar.

We studied Cushing disease in medical school, in  which surging steroid levels converts the human body into a marshmallow with  toothpick limbs. My form has become a teaching tool for my med students as I point out my buffalo hump and Santa Claus jelly belly.

The steroids aren’t working. It’s time for a change, time to call it.

Now what?

Sunlight. More specifically ultraviolet light. Extracorporeal photophoresis.

 In the near future I will travel weekly to Boston, to spend two days a week as my blood is siphoned out,  exposed to  UV light and then re-infused into my bloated body.

A crazy scheme. Let’s see what Aetna thinks about it.

The light will disable the donor T cells, blinding them in the extracorporeal light to end  their campaign   against my own startled,  swollen cells.

Will this work?

I don’t know.  I didn’t know if the transplant would work.  Extracorporeal photospheres has a 75%  success rate,  freeing me from my pernicious prednisone.

The procedure isn’t particularly painful, but is time consuming.  More to the point, it is transformative. Once again I will leave my world, withdraw from my slowly normalizing life for the next  six months to sit in a comfy chair as volunteers offer me  Lorna Doones and  chicken sandwiches.

 You are on notice.  I am a medical tourist again. I may be calling you to visit, I’m going to have a lot of free time once again.  I hear Chicago is lovely this time of year, as is San Francisco, New York.

Another hiatus. Another leave of absence. Another round of  “ Doctor Weinreb isn’t in this week, he’s in Boston getting therapy.”

Another  bout of  “ Hell, I need a Healthy doctor. Maybe it’s time I started seeing that lovely Dr. Spada. He looks young and healthy.”

I view myself as a physian  It’s what I do, its who I am. I am vaguely uncomfortable if  I am not wearing a floor length white coat and an ID that reads  STAMP OUT INFLUENZA 2014-2015

It’s not as if I have a choice.

I tried every oral anti rejection medicine, they left me weak, anemic, sick. Sirolimus, cellcept, tacrolimis. A roll call of the expensive strange medications.

No side effects from photophoresis.

No physical side effects

Just theft. Theft of time.

Theft of identity, as I again leave the world of productive  adulthood and enter what we once called  “dog lab” in medical school,  a place where  doctors and medical students practice new skills, transforming my  world into a bloody , all consuming, science experiment.

Dog Lab. Another phrase from my medical youth.   It’s an anachronistic term,  med students no longer inject dogs with poison and observe the inevitable results. Dog lab has been banned from medical school. Too barbaric. My  fellow students once brought in notes “ Please excuse Bill from Dog lab. He has an ethical objection to vivisection.”

Hey! I have an ethical objection to vivisection.  Auto vivisection.

Where the fuck is my note?

Back to Boston weekly, back to wandering Huntington avenue, checking out the latest exhibit at the Museum of Fie Arts. Back to Boston, my spiritual hometown. The town that caused, then cured my cancer, my first post college city,  a city haunted by David Byrne in the ’80.

I'm checking them out, I'm checking them out

I got it figured out, I got it figured out

Good points some bad points

But it all works out, I'm a little freaked out

Find a city, find myself a city to live in

I will find a city, find myself a city to live in

Another memory.  1982.  I’m a lab tech at the Sidney Farber Cancer institute.  In those days, the Farber stood alone, a 10- story  glass and metal monument to hope.  Floors 5 and 6 were anomalous.  Curtains lined the  tinted windows on those floors, space devoted to patient care. The curtains kept the sun out.  Sidney Farber did not want to share  credit with the sun  as fellow Shaman.

In 1982, The Farber patients   received their treatment on floors cleared of rat cages and  Pyrex ware.  I return 33 years later, to receive my experimental therapy.

The sun.

May it shine on my demented white blood cells.  May it ruin the graft  lymphocytes  desire to  cause havoc. May it disrupt the   berserk party in my mouth that is gouging large painful wounds in my  cheeks. May it temper my hepatic war zone Maybe I’ll get better.  Maybe not.

Its time to call it.

And I am scared.

Shit.

The Questionnaire

Sure, I would not mind saving 500 dollars. Dan wants to join the Cornell Ski team.   Abby will need help this winter as she teaches 4 year olds to ski and Jeff… It’s surprising how many incidentals one generates on one’s meteoric ride to Master of the universe/ second year medical student. Life goes on, I am still parent of three single students who need funding, despite my daily, sundry struggles.

            It’s easy, too. The money saving, not the master of the universe thing.   I need to complete the oxymoronically named “Wellness form.” My GVHD tide is slowly receding, yet again, fading slowing under the renewed effects of Rapimmune and prednisone. I have stopped eyeing the room for potential devices of self-extinction.  I feel I am safe around sharp objects, shards of glass, beakers of Hemlock, and my sister- in- law.(1)

            To save money, I need to answer health questions and undergo a physical. In the past few years, I  have viewed maintenance health care as a   waste of time. I want to scrawl, “I have cancer!  Every day is an unexpected surprise” across every  form requesting a preventative health care check up.   I derive perverse pride from my disease.  I think of Men in Black:

“You're no longer part of the system. You are above the System. Over it. Beyond it. We're them. We're they. We are….” People fighting Cancer. 

To paraphrase Gold hat, from the treasure of the Sierra Madres, 

“Health exam? We don’t need any stinking health exams, asshole”

Preventive care?   That ship sailed 7 years ago, now I am  well into besiegement mode. My medical situation resembles the Israeli zealots barricaded on Masada, awaiting   their doom at the hands of the Romans who had surrounded their desert redoubt. Telling me to take cholesterol medication would be like telling the zealots  to wear sunblock, because nothing is worse than being tortured by the Romans except being tortured by the Romans while suffering from a bad sunburn.

            I  am slowly being  reintroduced  to  preventative medicine. Much to my chagrin,  Ted  asks about my cholesterol and blood pressure, whereas all I want to do  is shout ,  “LDL? Fuck that, tell me how to  overcome  this crippling steroid neuropathy, my mouth pain,  my blah blah blah blah.”

             I go to the wellness website. They ask a series of questions about my health,   habits and lifestyle.  I develop a headache   from  excessive eye rolling.

Exercise? They want to know  about exercise? How many calories does one burn  searching for gauze to staunch the  flow of blood from a newly opened vein  that lies under my  steroid and Coumadin weakened skin?

            I can’t see any benefit from these asinine questions. My insurance is through my work, I can’t be dropped.  Aetna must possess a voodoo doll with my face on it into which they  stick pins.  I am aware Aetna’s’ stockholders lose 5 cents in dividend income every time I receive  $10,000 worth of IVIG.

            I should not be alive. I recall a Bill Maldin   WWII cartoon.:

 I feel like a fugitive from the  law of averages.

 That’s me. Don’t ask about my bloody  blood pressure, ask about my risk of secondary malignancy  from all -out land assault that was launched against my marrow and  flesh.

            Still a cool $500 saving  just by  answering some questions .           I’m   answering questions about  stress and  alcohol when I get to the question I’ve been dreading since I signed on 31 minutes ago.   Question: Do you have Cancer?  There are 4 possible responses

 1) I am living with cancer.

  This annoys me, it’s a euphemistic way of saying  “ I am dying with cancer”

 2) I had cancer but am now cancer free

3) I never had cancer

 4) I refuse to answer.

I Can’t  answer #4… I am not proud of my disease but still,  refusing to answer  is admitting to having cancer

Monty Python, Life of Brian

“Are you a Virgin”

“I refuse to answer!”

“She’s a virgin”

Answer three  is out, because it’s a lie.  So, do  I answer  #1 or 2?  Yikes.  I probably have a few leukemia cells  kicking around inside.  They will lurk within me until I die, kept in check by my overly neurotic and aggressive donor cells.   But, it’s not an accurate assessment.  I don’t expect to die of cancer unless I  have a heart attack while participating   in the   Jimmy Farber walkathon one year, or if I get hit by the LMA bus ( Longwood area shuttle bus)  as it drops employees at the  Farber.

Yikes. A cancer survivor could become an exsurvivor  at this event.

            So, that leave us with

2) I am cancer free

This presents the most metaphysical of all the answers.  Quick Quiz:

 Cancer:   

1) A  clone of immortal cells that are resistant to treatment and often result in death

 2) Cancer:  a  state of violent  change and disruption of  one’s life.

3) A disease that will soak into your every dream, your every waking moment even if you are unaware of its presence.

4) A  disease that will  change you, your family and your future for ever  and ever .

5) Cancer: The ultimate stigma,  every time you hear about any one dying of cancer, you will mumble “There but for the grace of god go I.”

 Choice  number  two isn’t accurate either .  No one is ever free from a cancer diagnosis. No one is ever cancer free once one receives that diagnosis.

 So,  which box do I check? I check?

   5) “Yikes, don’t ask” is accurate but resembles #4.

In the end, the best answer  would be a modified  #1, which violates  the questions euphemistic  intent:

1)   I am living with, existing with, worrying about,  whining  over, obsessing about, terrified by, suffering from the side effects of,  and annoying family members over, my cancer diagnosis.   There.  Where do I check?


(  1) Yikes ! I mean no offense. In any event I have several  sisters in law.  It just seems that whenever I visit SIL  "M" the converstaion turns a bit dark, in my effort to spare Cyn endless nihilistic conversations.  To my SILs : I love you all. 
2  (2) Yikes! It's  SsIL   sorry, grammar police.

Danbury, Connecticut ,5 AM

            I woke  at 5 AM at  the  Danbury, Connecticut  Hilton,  son Dan sleeping in the other bed.  Another typical day.  Dan  is home from school for the weekend but his ride only went as far as Danbury, arriving  there at  2 AM.  We work today so we couldn’t pick him up 60 miles from home in the middle of the night .The logical  solution : See a movie (  Pride, not bad)  dine with friends,  then drive to Danbury,  check in at 11, PM, wake in the morning  with Dan and drive home in time for work. Easy.  Easy but exhausting.

            Shit. My first patient has a rash.  Rashes terrify me these days. Patient tells me about a new, painful rash blooming beneath the shirt. “Let me see,” I say with dread.

            Zoster.  Herpes Zoster,. Shingles. Shit

            “Is it contagious?”    

            I sigh “ You are  slightly contagious,” I start my well rehearsed  soliloquy. "You can infect others who lack an intact immune system.  You need to avoid babies and people who have never had chicken pox.   "And, “ I add, trying to drain the terror from my voice,  “you can infect anyone who has had a bone marrow transplant  within the last 5 years. You could  kill them  from disseminated Zoster. Now please  lower your shirt.”

            I bite my tongue, avoiding the following forbidden phrase … “ You know, I had a bone marrow transplant and this could  kill me.”

Disseminated Zoster

            I told a patient that a year ago, and I suspect he is still traumatized  by my confession. It’s not the patient’s fault I am damaged.  A normal person wouldn’t agree to see zoster patients, but I suspect a normal person would not   drive from Danbury to  Hartford at 6 AM to accommodate a college -aged child.               Anyway, why should I worry?  I gulp 1200 mg of  Acyclovir a day  and undergo  monthly infusions  of intravenous  immunoglobulin  to arm myself against  disseminated Zoster, a  disease as horrific as it is fatal.

             Later that day, I bump into the receptionist.

            “We were worried. We though it might be shingles, we didn’t want you to see the patient.”

            “It’s fine,” I say, trying to gather enthusiasm.  “Send me all your rashes.”

            I live in two worlds these days.   I want to  live an intact, healthy life, I want to  do crazy things at odd hours, I  don’t want others to pity me or make allowances for my medical condition.   And yet, I am not completely well. At a bar last night, waiting for the food to arrive, I suddenly felt weak, overtired. 

            “ Is there a chair for my husband? ” Cyn asked  a waiter.  “ My husband is sick.”

             I don’t want to be that guy.

I carefully plan each day, taking care not to exacerbate  the situation. I  wake early. I eat a high protein breakfast.   I  don’t eat at work,  carbs provoke  an insulin and cortisol storm  that  makes it difficult to concentrate.  I work 26 hours a week, 8 hours a day because becoming over tired leads to  GVHD storms.

            I don’t want to be that guy,  the  guy with excuses.  I  want to work extra shifts, because we are short staffed and I want to help out, after the other providers  were  kind to me when I was  hospitalized.   I want to set an example. What would I tell a patient who asked for life- long jury duty deferment because of  a cancer diagnosis? I would tell them to  buck up, cancer is not a death sentence, I’d tell him or her  that   I’d  give a year  deferment but after  that,  we’d have to reassess. And then I received my jury duty notice. I had the opportunity to avoid jury duty for life.  What to do?

This is what I did.

            I am  at a crucial point in my life. I have two choices:  Surrender to the discomfort and fatigue and request life-long disability.  Or, I can fight the fatigue, the weakness, the mouth sores. What do they say? Fake it till you make it?  Kurt Vonnegut wrote that turning fifty was like crossing the peak of a roof-top,  after that, one descends the other side.  I could descend slowly, carefully, or I could surrender and  slide off the roof.   Some days, I feel like letting go.

 Alli calls.  She is  looking for volunteers to work an understaffed office this week. But it’s at night, when I am tired, and that would mean working 6 out of seven days. I tell her no. Let someone else do it, someone who isnt having an immunologic war waged in his or her mouth.

            I  woke this morning in our temper pedic bed, contemplating  Steve Hawking radiation.  If an anti particle is destroyed while its particle twin  is released, doesn’t this imply a loss of data?  Doesn’t that  contradict the  quantum law of  information retention? Doesn’t this imply none of us exists? We are a hologram cast  against the heavens?   I try to roll out of bed.   Panic. The steroids and the GVHD have weakened my muscles and it's hard to move. I spend the rest of the day in a fog. I drop my chop sticks at dinner, the steroids and my recent bike riding have provoked a neuropathy.  I eat my rice like a westerner.  With a fork.

            I don’t want to be sick.  I am not looking for secondary gain. I want to work longer hours,  pick up extra shifts.

            This year, I am mentoring a first year medical  student. We see patients together one day a week.  I have been given the privilege of training future doctors.  I don’t want to teach her about cranial nerves and  the best technique to hear a   mitral murmur.  She ‘ll learn these skills elsewhere. 

            I  do want to show her why  my 90 year old patients   need  colonoscopies ( dying from colon  cancer isn’t a matter of just falling asleep, it  involves pain,  emergency  surgery,  intravenous medications and multiple hospitalizations)  I need to explain why people with terminal  cancer insist on  taking their anti cholesterol medications (even the terminally ill can hope for a prolonged survival)

            I want her to read Dylan Thomas, I want her know about   patients who rage against the dying of the light  and why.

            I wasn’t able to mentor in the past, afraid  I would be dead  or disabled before their 3 year long  education with me ended.  I wanted to mentor to demonstrate that cancer is not a death sentence, we can  receive  a  fatal diagnosis and still show up for work.

            I want to tell her  I’m working  because the alternative is to give up, to lie in  bed and  die.  I want to demonstrate that one s petty problems  can be   gracefully and gratefully ignored.

I haunt two worlds.  I have no idea how long this will last.  And  by “this” I refer to symptoms, but also to life itself.

            I think of  Emilio Zapada, the Mexican revolutionary.

            "It’s better to die on your feet than live on your knees.”

            But really, what choice to I have? 

The Big E

We returned to the Big E this week.

The Big E. The Eastern States Exposition . The state fair, held yearly in Springfield, Massachusetts , is where one can watch baby chicks  hatch,  horses cantor and  both huskers and  ears of corn, husk. 

Really?  Aromatherapy can cure Lupus? Dont tell Big Pharma!

A Selfie: me with two sleeping cows

and the inevitable conclusion. 

  I love the big E , long after friends and  family have  dismissed the gluttony and  the kitsch. They view the fair as hopelessly tawdry  and vulgar , appealing to  base,  blue collar appetites . 

            I love the Big E because I view the fair as a response to all that is wrong with our  modern lives . In a world of homogenous apathy, the Big E  may be the only place on the planet where one can view the lovingly  grown,  largest gourd  in Connecticut and  vicariously  experience the honest, exuberant  joy of a 16 year –old who  won a ribbon for raising the  best groomed cow in New England.

I have no idea what she's doing but she's proud and excited!

            I have always lived in proximity to state fairs.  We visited the  Danbury State fair  yearly until someone decided Connecticut  needed a Forever 21-chocked mall     more than a tractor pull  competition, and maybe they do.  The New York State Fair  lies 5 miles from upstate medical school in Syracuse.  I couldn’t begin a year  without inspecting the  life sized butter sculpture.

It’s September 21, 2011. I stand at the portal of the Brigham and woman’s hospital, checking-in for my stem cell transplant, We are silent and grim.  There is no future, only  disease.  “You have 10 years to live,” Firsh told me four years previous, and now, with my disease  surging ahead,  six more years  on this mortal coil seems an impossibility. The admitting nurse eyes us warily.

            “ Why are you here?”

             I ignore the existential entreaty.

  “We were told to show up at 9 AM.”

            “That’s crazy. They’ll just make you sit here all day, they wont admit  you until tomorrow. Go do something fun.”

             The  Dana Farber is  110 miles from the big E.  We had to go. The unspoken message was, of, course  “You may never  see a polled Hereford (1)  again, you might as well go.”

            We had, I recall, a wonderful time. I  was the proud possessor of a  central line, an IV that runs through the chest wall directly into the heart. I spent the day trying to fool everyone I was drinking beer through the plastic straw -like attachment protruding from my shirt.  I had been given a quick lecture about immunity and my complete lack thereof.  As far as I could tell,  everything one could see, touch or eat at the Big E was on some banned list. I remember Cyn running behind me, laying down a path of Purell as If I were a  giant  snail secreting a glistening alcohol trail.

            I remember taking real inspiration form the Big E that day. I was about to have buckets of poison and, apparently a little local beer, poured directly into my heart for the next few weeks but,  in  Springfield,  life went on, oblivious to my insanely  perplexing predicament. 

            At the Big E, each New England state is given a pavilion in which to display its local  wares, foods and customs.  The Maine pavilion serves  potatoes at 6 dollars a serving, demonstrating  Maine’s two famous  exports:  starchy tubers and chutzpah.  New Hampshire’s pavilion was transformed into a big state lottery ticket store. Massachusetts was all about the chowder.   Vermont ‘s  exhibit  extolled the virtues of flannel outer ware and  maple syrup.  In our Mall -saturated world,  where one can buy the same Victoria secret  bra  from coast to coast, shopping at Vermont’s  Flannel  shop  for  comfortable  plaid work shirts was strangely liberating.

            The day passed. We drove back to Boston.  I lived.

            We returned to the Big E last week.  The cancer is gone, but the malady lingers. I have aged  far  more than 3 years over the past 36 months.  I worry my enthusiasm and life -wonder is ebbing under a constant onslaught of medication and discomfort. This year, I was less willing to  dismiss the morbidly obese, lining up to buy hamburgers  served between two doughnuts.

            I had my shopping list for this year:  A new Timex watch from the Connecticut  pavilion,  some lavender soaps  and flannel  nightshirts from the Vermont  display,

            The fair has changed.  The Timex exhibit where I stock up yearly on  cheap watches  ( three for $50) is now home to  Pez, another  Connecticut product. There may be no more useful object on the planet than a cheap, rugged wristwatch.  There may be nothing more redundant and useless than a Daffy Duck Pez dispenser, available at any  Wal-Mart  across this  monotonous. indifferent   land of ours. I feel a real sense of loss as metal watch mechanisms  are replaced by  sugar and plastic.  The soaps are gone, replaced by yet another ice cream shoppe.  I do love Ben and Jerry but I can buy a  pallet of Cherry Garcia in  Stockton, California, and yet the one  factory in Vermont that produces  little bars of lovely    lavender soap is out of business.

            I left the Big E this year  with mixed emotions. I’ll be alive next year. I just  accepted a three year commitment with U.  Conn to mentor their med students, and I intend on  shaking their hand in four years. I’m just not sure If I’ll return  to the  Big E.

The joy of life is in the unexpected, the breathtaking, the unique. My survival is no longer  breathtaking  or unexpected  but neither is the Big E.

(1)  The Polled Hereford is a hornless variant of the Hereford with the polled gene, a natural genetic mutation that was selected into a separate breed beginning in 1889The Polled Hereford breed is bred for its deep forequarters, depth and muscling, docile temperament, fast-growing calves, and good quality of beef