Pretty Lights

Once a month when I was little, we would visit my grandparents for the day. The drive home was always in the dark, and I’d press my nose up against the car window, staring out at squares of yellow light spilling out of windows, lines of white streetlights striping the pavements, swathes of silver sequins freckling the dark shadows of hills in the distance. The best was when we drove past water, and ribbons of light shimmied across the ripples. Or when it rained, and raindrops falling through the beam of streetlights created a dazzling corona. Back then, those were pretty much the only colours of public lighting. Even at Christmas, only reds and greens joined the party, dancing across every street in every town we drove through. Pretty lights were my first words, on one Christmas drive home. 

The first time I saw any other colour of municipal lighting was when I was twelve, and we had moved to the north of England. The civic centre in Newcastle was always lit up at night, the whole side of the tall, concrete block curtained in a glow of pink and purple and blue, like aurora borealis in a winter sky.

These days, we’re all accustomed to see a rainbow of colour lighting up cities and towns at night, scaring off the natural light of stars. And although I’d far rather see the stars, and the aurora, I still think the lights are pretty.

When you are out tonight, many of those lights will be shades of blue and teal. Public buildings, hotels, office buildings etc. in Australia, Brazil, Canada, China, Cyprus, England, Estonia, Ireland, Mexico, New Zealand, Qatar, Scotland, Taiwan, and the USA are lighting up for October 7th. To most people, the date means nothing. Yet it’s a significant day to thousands of people around the globe. International Trigeminal Neuralgia Awareness Day.

Unless you know someone with trigeminal neuralgia, you’re unlikely to know anything about it. You’re even less likely to have heard of International Trigeminal Neuralgia Awareness Day. So while buildings glowing in a fuzz of teal lights will probably make you look, I bet you’ll just think pretty lights.

Trigeminal Neuralgia is a debilitating chronic pain condition. It is the result of a damaged trigeminal nerve, which is responsible for movement and sensation in the face. The nerve may be compressed by an artery, or the myelin sheath, like the plastic coating on electric cables, may wear thin and bald. It may be attacked by the shingles virus, or damaged through diabetes, stroke, Sjogren’s Syndrome, Multiple Scelerosis or a head trauma. The damaged nerve misreads ordinary stimuli and movements of the face as pain. And the pain is intense, a barrage of electric shocks that can drop you to your knees, or a constant hammering ache burning the face.

It occurs in about 1/10,000 people. There is no cure, and medicinal and surgical treatments are a hit and miss affair. Most GPs do not recognise it, and even many neurolgists know little about it. Patients often experience years of extreme attacks, going back and forth to doctors and dentists (the pain often manifests as extreme toothache), having teeth removed, and receiving mis-diagnoses of psychological illness before they may be fortunate enough to encounter a doctor who recognises their symptoms.

It took nearly 40 years, two teeth extractions, several hospital stays and a second opinion from a more experienced neurologist before I was correctly diagnosed. Since then, I have assembled an array of knowledge from my own research, scouring the internet for reputable medical articles. I have joined a Facebook support group and shared information I learned. I volunteered as an admin for the group and attached page, working with others to produce accessible, accurate and useful information that people can use to help get proper and prompt diagnosis from their doctors, to manage the condition more effectively, and to explain TN to their families and friends. I know that my experience is echoed again and again throughout the world of TN patients.

There are many FB support groups for TN patients. Today, many of those people will be sharing pictures of teal ribbons, videos, information, selfies of themselves in teal clothes and accessories, pictures of their new teal awareness ribbon tattoo, or their teal-dyed hair. Oh, and pictures of buildings lit up in teal.

The buildings that light up do so because a group of TN sufferers work hard to recruit more buildings to the cause every year. They are determined to make the world recognise teal as the colour of TN, and 7^th October as the day of TN awareness. It’s a lofty goal. But without effective information being shared to explain the reason behind the lights, I can’t see the point of asking buildings to wear teal ones as part of an awareness campaign. Unless the lights strobe the night sky with messages like Donate to the Facial Pain Association, or electronic billboards explain Trigeminal Neuralgia, or the building owners give every one who enters a leaflet about TN, the teal glow is nothing more than pretty lights.

Are you raising awareness for Trigeminal Neuralgia? Then don’t forget to share the information too.