Three Cheers for Periwinkle: Ethnobotany, histiocytosis and Rare Disease Day

Just over seven years ago, my youngest son, then eighteen months old, woke up one morning with a lump exactly the size and shape of an olive behind his ear. An X-ray revealed a quarter-sized hole in his skull and a mass of dense tissue. The initial diagnosis -- malignant tumor of the cranium -- left everyone in the family reeling, incredulous and praying for a miracle. Within a few days and thanks to the incredible staff at the Boldrini Children's Hospital in Campinas, Brazil (if I ever become a millionaire I will leave my fortune to them), this diagnosis was rejected in lieu of something far stranger: Langerhans cell histiocytosis, also known as eosinophilic granuloma or histiocytosis-X (due its mysterious etiology), a childhood disease that is a hundred times rarer than leukemia and thus often misdiagnosed.

You know you are desperate when a doctor tells you your child has an extremely rare immune system condition of unknown origin that punches Swiss-cheese-like holes in the bones and especially the skull, fatal in about 15% of the cases and usually treated through experimental drug protocols, and you feel relieved.

Periwinkle: Our little miracle

His initial treatment included small doses of vinblastine, a drug derived from the caustic sap of the rosy periwinkle, Catharanthus roseus (or Vinca rosea), native to Madagascar. In a matter of days, the olive-sized lump looked more like a caper, and within six weeks the tumor was no longer visible to the eye. The treatment regime continued for another two years with a cocktail of drugs similar to those used for leukemia but in far smaller doses. 

I am very relieved to say that he is now fully recovered and suffered no side-effects from more than two years of low-dose chemotherapy. Miracles really do happen.

Rainforest Wraith: Reading David Foster Wallace in the Amazon

David Foster Wallace is probably not the best literary companion for fieldwork in the Amazon. And I’m not just talking about the brick-like girth and serious heft of Infinite Jest. I checked it out of a public library before purchasing and decided I’d be better off, given exotic travel considerations, with the eBook, which I bought and downloaded to my iPod for an expedition among the Kayapó of southern Pará in the Brazilian Amazon. 

Even on the tiny illuminated screen of this wafer-thin device, totaling 7780 bite-sized pages turbocharged for efficiency with searchable text and hyperlinks among wormhole-like footnotes-within-footnotes, Infinite Jest makes for heavy reading. 

It is especially incongruous bedtime fare after a day of tropical heat and colorful festivities in a native village. On the one hand, indigenous societies like the Kayapó, with their powerful sense of group identity and collective purpose reinforced through spectacular public ceremonies, would appear immune to -- even an antidote to -- the kind of mental, electronic and pharmaceutical "cages" that are central to Infinite Jest. And yet as the Kayapó and other indigenous peoples become increasingly connected to global society and dependent on Western technology, one wonders how far off the addictions of modernity really are. 

During several passages of the book I felt physically ill and had to put the device away: the claustrophobic screen and jarring cultural dislocation only intensified my queasy response to the manically unspooling language. But I got hooked on the double binds and dizzying plot spirals, the tragicomic pathos of Wallace’s characters and a tantalizing if mercilessly denied promise of narrative resolution. I just had to find out whether the wheelchair-bound Canadian terrorists succeed in weaponizing a fatally addictive "Entertainment" cartridge, and how bad a DMZ trip Hal is in for. (Spoiler alert: Oh well...)

And so on the last day of March, I dismissed myself from the nocturnal orations of Kayapó chiefs and immersed myself in the tent for an hours-long slog. I finally collapsed in frustrated exhaustion only to be visited, Scrooge-like, by my tormentor’s ghost: 

"Last night certainly less than princess-level sleeping conditions contributed to a spectacular suite of dreams not to mention the fact that I slept nearly 12 hrs. In the first part I ran into some professors, maybe Nancy S. or Beth C. or David A. I saw them talking w/ a shadowy personage they called ‘Dave’ who kept reappearing throughout the dream just out of my reach. I couldn’t figure out whether this was Dave Eggers or whether it was the ghost of David F. Wallace. When the profs told me they had been speaking w/Dave, I said, ‘Why didn’t you tell me? He’s one of my favorite writers!’

"But I discovered that he had left behind a singular kind of basket or bag, triangular in shape w/ a very narrow opening [and according to the sketch in my journal, a loop-like double handle], at first it didn’t seem to open at all. The womb-like format was not lost on me even in the dream state. Inside were scraps of paper on which Dave had outlined a new novel or rather a revolutionary new novelistic technique which included a chorus-like precocious annunciation of themes that allowed the author to assert an authorial voice without losing himself in mirror-like self-reflection. There were further plot details that now escape. The name for this revolutionary new DFW/DE technique was, of all things, menire, which means ‘girls’ in Kayapó!” 

After jotting down these hasty notes the next morning I realized it was April Fools’: I guess the Jest was on me. 

  ---

In Memoriam:

 February 21st, 2013 would have been David Foster Wallace's 51st birthday.


See also: "Infinite Grace: An interview with Caetano W. Galindo on his translation of 'Infinite Jest' into Brazilian Portuguese"

Previous post, January 27, 2013:
"The Sound of No Salinger" 
Remembering J.D. Salinger three years after his death