On New Year’s Day 1987, my brother had a grand mal seizure. He was 16-years-old and no history of prior illness.
In the emergency room, the doctor on call took one look at my unconscious brother’s long hair and announced the seizure drug-induced. My sister and I managed to disabuse him of this notion, and then the real fear set in. When an otherwise healthy teenager suddenly has a grand mal seizure, the worst assumptions are made. In my brother’s case, there were tests for brain tumors, lesions, and other seizure-inducing ailments. All were ruled out. Idiopathic epilepsy—seizures of unknown cause—was ruled in.
Then a new hell began: finding a workable drug regimen. The medication that eventually worked was not ideal. Rather, it is the least terrible of the lot. Though medical understanding of epilepsy is now sophisticated, treatment remains largely primitive. Drugs. Neurosurgery, always a dangerous proposition. Electronic stimuli intended to regulate brainwaves. All lead one to wonder which is worse: the affliction, or the cure?
In the case of William Fiennes brother, Richard, the cure, any cure, would have been infinitely better. As I read Fiennes memoir, The Music Room, I jotted a note that in other circumstances I would find ridiculous: my brother is lucky. Richard Fiennes was 11 years older than William. Between them are twins Martin and Susannah, and another child, Thomas, who died at age three in an accident. When Richard, an intelligent, verbally precocious child, was two, he had a severe ear infection and high fever that led to convulsions.
Doctors reassured the Fiennes family that all was well. It was not. There are multiple types of seizures. Richard had the small ones—petit mals—where one blanks out for mere seconds, unaware he has seized—and what his brother calls Tonic-Clonic, or grand mal—enormous neurological electrical storms that cause the sufferer to lose consciousness, go rigid, thrash, stop breathing, vomit, lose bowel and bladder control. People in the presence of a seizing person are told to put something in the sufferer’s mouth, lest he bite his tongue. Don’t: you risk being bitten yourself. You are also told to get the sufferer on his side, so when he vomits (chances are good he will), he won’t aspirate and choke to death.
Apart from protecting the individual’s skull (it’s helpful to get your legs under the sufferer, and move with him as he seizes: your thighs act as a pillow), there is scarce little you can do to help a seizing person. You can only wait and hope to hell he doesn’t stop breathing.
Incredibly, William’s parents remain amazingly calm throughout what they call Richard’s “fits”, even as his seizures increase in frequency and severity, until he experiences Status epilepticus. For those of you who read Anne Fadiman’s The Spirit Catches You and You Fall Down, this is the when Lia finally, in the words of her doctors, “gorks”: has a series of severe, uninterrupted seizures that deprive her brain of oxygen, leaving her brain dead—in the words of her Hmong family, the Spirit has caught her soul and stolen it, leaving her emptied body to fall down.
Richard does not gork, but his brain is badly damaged. The teenager loses much of his frontal cortex function, the part of the brain responsible for memory, tact, social awareness, and emotional control. He is alternately enraged, mean, violent, and remorseful, only to forget his verbal threats or physical attacks moments later. He refuses to bathe and is obsessed with the Leeds Footballers. When William is given an electronic race car set, the child and the near man sit down to play, but Richard is unable to operate the remote controller that sends the car round the track.
The Fiennes parents are forced to institutionalize Richard, but he spends a great deal of time at home, visiting on weekends and holidays. Home is the other remarkable part of The Music Room: a moated castle in the Fiennes family since the 14th century. The castle is everything one would imagine, stuffed with ancient things: mounted birds, military uniforms, swords, nests of crumbling bird’s eggs, china tea sets, suits of armor William’s mother carefully oils with WD40, a Great Hall where William learns to ride a bicycle, priceless vases, furnishings, and paintings.
There are winding stone staircases and a gatehouse. The castle is surrounded by the sort of parklands one finds in Austen novels: almshouses, worker’s cottages (still inhabited by staff), a working dairy, and a graveyard where the family ancestors are buried, along with Thomas. There is a moat filled with fish: in the summer, people swim and William catches pike. The family boats beneath ancient stone bridges. In the cold months, they ice skate.
The Fiennes are careful stewards of the castle, which they consider a fragile object belonging to the public. The family conducts endless tours, allow people to fish the moat, host all manner of fairs on the land. Indoors, young William becomes accustomed to snaking camera cables, boom operators, and cameras shooting famous actors for movie and television shows. All proceeds go directly back into maintaining the house and grounds.
The book moves between Richard, the house, and a history of epilepsy. But most of the memoir is about the castle, rather than Richard or his family. The memoir is reticent in this regard, reminding the non-British reader that quiet desperation is indeed the English way. And while the castle is certainly fascinating, American readers may find themselves nonplussed by the lack of histrionics. Martin and Susannah are off at boarding school, seldom seen; William, too, is sent to boarding school, where he thrives. William’s parents must have suffered horribly, yet only once does William happen upon his father resting his hands on the castle wall, “asking the house for some of its strength.”
While one might wish for more—a weeping mother, rebellious twins—I came to respect Fiennes’ discretion. He writes what one needs to know: that the family accepted Richard as he was, and loved him unconditionally. William, for his part, claims to have accepted Richard simply as Richard, never questioning or wishing for a different brother. The assertion is an amazing one, yet William is honest about his occasional baiting of his older brother, his willingness, as he grows up, to engage in verbal combat with Richard, who is aggressive and unpredictable.
But William shies away from physical contact: Richard breaks windows, threatens his parents with the steel rod intended to control the moat’s sluice gate, burns his mother’s face with a hot cast iron pan, and has assault charges brought against him by a fellow resident. Questioned at the police station, Richard is asked if he remembers the incident.
“’To be quite honest,’ Richard said, ‘I don’t remember much.’”
Sadly, Richard is aware of what he’s lost. At times he says it’s simply awful, like being in another world—in William’s words, he is “moated in”. His verbal tenacity is intermittently intact, and he loves punning with his mother.
William never plays the reader’s heartstrings; I doubt he’s even capable. Even when writing of Richard’s death after a night seizure, he is dryly matter-of-fact. The loss is no less to the reader.
Reading The Music Room will be unsettling to readers accustomed to American-style tell-alls, in all their root canal sans Novocain glory, and the historical investigations into epilepsy may be foreign to the neurologically normal. But for all our knowledge of the brain’s electrical system and its tripwires, epilepsy remains a frightening, ultimately unknowable disease; those who suffer from it, their families and friends, can only throw light at this neuro-spectre, as Fiennes does, showing us Richard in all his damaged Richardness, a man who truly haunted a castle.
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