A ghoulish hobby

Last night I watched a programme on BBC Three titled “Stormchaser: the Butterfly and the Tornado”, about a woman with EB (a skin condition) who goes storm-chasing in America. (You can watch it on iPlayer in the UK here until 12th November, and there is a 3-minute clip of it here). The programme follows Sam Hall, who is editor of the International Journal of Meteorology, and her brother on a journey of hundreds of miles across Oklahoma and other mid-western states as they chase after storms reported on his mobile computer equipment. They end up driving into one of the country’s worst ever tornados, with one town they visit devastated and the other having a very narrow escape. (More: LisyBabe).)

EB stands for epidermolysis bullosa, which means skin breakdown and blistering; it means the skin is very fragile (hence the “butterfly” comparison), and is liable to come apart and blister with any friction or pressure (there are different levels of severity; hers seems to be quite severe but, for example, she is still able to walk, while some sufferers require a powered wheelchair, and she can eat soft foods — the condition affects the inside of her mouth and throat also — while others must be tube-fed). It is very rare, and there is one charity which serves the EB community, called Debra, which is very well-regarded (unlike, for example, many of the charities in the ME world). The programme featured interviews with Sam and her parents, and much later, her brother. At home, she has carers to change the dressings on her skin; she takes the trip to the USA with her brother and as the only female, she must change them herself. There is a scene in the programme in which she is interviewed preparing for the dressing change, interspersed with an interview with her brother, who is quite emotional as he tells us that there was a point where she nearly died when she was younger, and he faces the possibility of her not living very long.

The pair drive their Jeep (Sam actually does the driving) hundreds of miles across various prairie states, having received the information that a storm is brewing several hundred miles to the east of where their hotel was. After that information disappoints, they get another bit of information that takes them yet another few hundred miles east, and this time they get what they want: a view of a “funnel tornado”, with dramatic skies and buckets of rain. Eventually, their way is blocked by local police, and their activities turn to advising local people of how not to get hurt. Surveying the devastation in Joplin, she is obviously quite distressed.

However, in the latter part of the programme I found myself wondering what the locals thought of Sam and her brother as they themselves were in fear of their own lives and those of their families and friends, while these two drove across the country to see the storms for a thrill. I accept that she is not hurting anyone and am glad she is able to pursue a hobby beyond her home when she has a potentially very life-limiting condition (the person who alerted me to this programme has severe ME and could not even dream of it), but it seems a bit ghoulish to be getting thrills out of a phenomenon which destroys peoples homes, livelihoods and even lives, while being able to return safely home to mostly tornado-free Warrington*. The programme did give some insight into life with EB without making her out to be a tragic case, but no attempt was made to question this aspect of the pursuit.

* Yes, I know we do get tornados in England — I remember the one in west London in 2007 well as I was quite near where it hit. But they cause nothing like the devastation they do in the USA.

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