By Joe Cooper
My phone dinged, with Jill’s ding tone. Three words: Janet has died. Holy expletive deleted. A veteran survivor of several flavors of cancer, this mother of three and lifer wife was finally nosed out at the boat end. Another one. I stopped for a moment, mentally adding up the people I know who have had life similarly nipped from them on the line of life. I got to ten departed souls without too much effort, going back 25 or more years.
If dying from such – any – disease can be called timely, this last passing was. I have been thinking about diseases of late, and this latest death has brought into sharper focus the yellow (and other colored) ribbons one sees on car bumpers proposing we run, swim, walk, levitate for – choose the disease or affliction of your choice. There are dozens of them.
Just exactly how does your normally laughing and happy columnist tack into such cloudy and dark waters? Slowly, over time. As part of my interest in, and affinity with, the cohort of sailors known as the Bermuda 1-2 group, I come across all manner of characters that I think one might not normally run into in other, less stressful and demanding regattas. To take, and to put your life in the hands of yourself requires a rather specialized mindset and outlook in life. One of these characters is a jovial Brit named Phil Haydon, PhD. Phil had a bicycle accident in his youth. This ended up with, apart from the usual cuts, scrapes and gravel rash usually associated with bike accidents, a life-changing condition: He is epileptic. This particular revelation brought home to me memories of my high school days.
I went to Vaucluse Boys’ High School, a public school perched on the cliffs guarding the southern approaches to Sydney Harbor. There were a lot of elements of the slowly fading British Public-School system. Small wooden desks with lift tops, little holes into which one’s bottle of ink might be stowed, and lots of engravings from past pupils. Lots of stringent discipline with corporal punishment, caning of the hands, for miscreants. There was a smallish collection of class bullies to boot. In any age, being the odd man out brings all manner of difficulties to you, more so as an awkward high schooler in such an environment.
One particular kid, Charlie, was overweight, and so, appalling at any games – a surefire fast track to ridicule in the school bully milieu of such high school life. He was smart, and not afraid to show it including calling out the answers before being called on, hand firmly in the air, a la Hermione Granger. He was the kid who, when rocking back in his chair, would invariably be pulled over by one of the kids behind him. Charlie had a sharp edge to him, even against overtures of some of us being kind and friendly towards him. But probably his greatest sin was his affliction, now known as a disease. Charlie was epileptic.
As I have learned recently, there is no rhyme or reason to this particular condition. It is neurological in its roots and ‘seizures’ are completely random. I guess I knew this because Charlie’s seizures were just so. There was some very loose correlation between a seizure, what we called a fit, and his fellow pupils’ actions. This was mainly manifest in his response to some torment or other whereby he would grab the offender in a bear hug from which it was impossible to pry him. Of late I have been thinking about Charlie and where he ended up. I know of one fellow pupil from high school who committed suicide, and his life was a lot less dark than Charlie’s.
Sitting at the lights, one gets the time to study the bumper stickers of the car in front. I seem to be seeing more and more of the colored ribbons, but oddly I have never seen one advocating taking some action to cure epilepsy. We hear of the various societies dedicated to finding a cure for all the diseases we commonly hear about. I had never ever heard of the Epilepsy Foundation, nor did I know there are chapters all over the country.
Some of this I found out from Phil, some from attending a Meet and Greet presented by the New England Chapter of the National Epilepsy Foundation and hosted by a delightful couple at their home in Middletown, in late June.
There was yummy wine and munchies and lots of people, including John O’Hurley, who portrayed J. Peterman on Seinfeld. John shared some inspiring comments about epilepsy and his family’s battle: John’s sister died from SUDEP* in her teens. Since then, he has gone on to be a national spokesperson concerning epilepsy.
One statistic I do remember is that 1.2% (this is a small number, right?) of the U.S. population are afflicted with this disease. Small number? It is 3.6 MILLION people.
Curiously, the day before I was at Sail Newport and came across a fellow wearing a T-shirt that was branded with a connection to baseball and epilepsy. Humm, I thought. He was on the phone, so I wandered off on my way, but when I returned, he was at a table with a collection of teenagers and another couple of adults. Me being me, I approached him and inquired as to the connection between baseball and epilepsy.
It turns out the collection of kids were afflicted with this condition and were part of a group of campers for whom the New England Chapter of the Epilepsy Foundation organizes summer camps. The goal of course is to bring the kids into environments they are likely never going to be able to experience, at least outside such organization. The T-shirt fellow’s son was one of the campers. There were a couple of groups of them and they had been out sailing in Sail To Prevail’s Freedom 21s. There are camps for all the other summer activities one can think of including horse riding. One of the adults turned out to be a nurse who has specialized training in the epileptic condition. As I was listening to this, part of my RAM respooled to Vaucluse in the late 1960s…and Charlie. I could not understand how mean and callous we all were. I can still see in my mind’s eye at least one episode with Charlie.
PE, Physical Exercise, was of course de rigueur in high school and, in OZ in the day, it was usually some flavor of rugby, soccer or some kind of track activities. Our sports field was a five-minute jog further up the hill from the school, right on the edge of the cliffs. The standard drill was to change into our sports kit, in a communal open change room, run up the hill, do the sports thing and run back. This comprised about 30 minutes of the 45-minute period. The remainder was having a shower, cold of course including in winter, in a similarly open shower space and getting dressed. Charlie would have none of it. I cannot remember just how Charlie negotiated this, but I do remember he must have participated in some form, in his regular school uniform, because I remember equally his impenetrable resistance to showering which would of course requiring him to undress. Back to Phil.
I suppose one could imagine someone with cancer going to sea, possibly in the early stages, but going to sea, alone, as an epileptic? Bearing in mind sleep deprivation is, or can be, a trigger. Well, that takes a certain, special kind of character. Turns out Phil has not had a seizure for nigh on 40 years. The secret is meds. Probably the fact that neuroscience is his life’s work doesn’t hurt either. Phil’s day job is The Annetta and Gustav Grisard Professor & Chair of Neuroscience at Tufts School of Medicine.
In some 40 years in the field of neuroscience, Phil has learned a lot about the science of epilepsy. One of the important things he has learned is that epilepsy is a bit of an ugly sister in the yellow ribbon-walk-run-swim-for-the-cure arena.
As usual I have not finished before the word limit expires, but do us all a favor and read, at least the homepage of, the Epilepsy Foundation website (eplipesy.com). And stay tuned for some more interesting adventures of Dr. Phil to come, some are on Twitter at twitter.com/sailforepilepsy, and a website, sailforepilepsy.org, all related to his mission to make epilepsy, and its impact on those who suffer from it, more widely known. ■
* SUDEP is sudden unexpected death from epilepsy.
Australian born, Joe ‘Coop’ Cooper stayed in the U.S. after the 1980 America’s Cup where he was the boat captain and sailed as Grinder/Sewer-man on Australia. His whole career has focused on sailing, especially the short-handed aspects of it. He lives in Middletown, RI where he coaches, consults and writes on his blog, joecoopersailing.com, when not paying attention to his wife, college senior son, dog and several, mainly small, boats.