Richard’s RARE Ramblings: Winter is coming… and I am ecstatic!
Richard Barlow, a dermatology registrar who lives xeroderma pigmentosa (XP), a rare skin condition, reflects on how the long winter nights make his days happier
A few days ago, my annual Spotify report popped up on my phone. I learned that I had listened to the equivalent of 23 days of music in the past 12 months. Quite impressive when you consider this stat doesn’t include my YouTube, SoundCloud or Hype Machine music time either. Even more so in the context of my phone informing me that my video screen time is absurd as well.
My top song, for the fifteenth year running is ‘Xtal’, by Aphex Twin. I highly recommend it and often listen to it on repeat for hours on end. My top genres were rap, classical and electronic. Sadly these genres are yet to be successfully combined and I’m still awaiting on a techno remix of Mozart’s underground secret freestyle mixtapes.
Anyhow, I was somewhat surprised that Spotify so accurately categorised me as a “Vampire” and that my listening tastes were described as “like to embrace a little darkness. You listen to emotional, atmospheric music more than most”. As I sat there in my cloak, feasting on the blood of a disgruntled colleague, I fired up some spacey music from my “4am big think” playlist and considered my newly assigned race, until the sun came up.
Upon reflection, I was quite pleased with this category, and it was pretty accurate actually. Despite the common misconception that XP is comparative to vampirism (unfortunately we do not have any of the benefits of these creatures), I had to concede that I am much more attuned to darkness, and I have certainly become a lot more contemplative in recent years.
When I refer to darkness, I mean this in the most literal sense, the absence of light. This got me thinking and as I often do, I asked myself Why is this the case? Once I had that figured out, I asked it again and again until I got to the simplest root cause. This is probably quite self-explanatory in my case: sunlight signifies a lot of problems for me so naturally I tend to favour darkness.
I realised this is becoming more evident each passing year. Even now I dictate my letters and sit in my clinic in the dark without any lights on, except the computer screen—unless I have patients of course. When nobody else is in the house I tend to close all the curtains in the daytime and only recently abandoned my long-term plans to live in an underground cave. This is probably the reason I am also very good at sleeping long, unnecessary, hours.
Some of this is related to the photophobia and sensitivity of my eyes to daylight. For the most part though, it’s just that I’m happier in the dark. It sounds quite drastic; however, I am noticeably cheerier when I get up early and drive to work in the dark even if its 4am in the summer. I am more relaxed when I haven’t seen natural sunlight. I curse other drivers less and even say hello to people. Seeing sunlight doesn’t make me sad, it actually infuriates me, and I get quite anxious knowing that it’s out there, beyond a curtain or even a cloud.
This came to a head for me when someone recently told me they were wanted some “nice weather”. I commented that it was already here: cold, dark, wet, frosty, cloudy and an early sunset. After further discussion they told me how they were really quite struggling since the clocks changed and we had entered winter. They had SAD, seasonal affective disorder. This can be thought of as a spectrum, but essentially describes low mood and even depression that is associated with changes in season. Most commonly it describes individuals who prefer lighter sunnier seasons like summer. At first, I felt sorry for this person; how sad it is to have your mood so reliant on the weather! Then the penny dropped that I was entirely in the same boat, albeit a different time of the year. (Obviously SAD goes beyond the weather affecting your mood and I am not making light of those who genuinely have this condition).
When you read about what people who have SAD do, there is a lot of literature about recreating the season or the environment that does make you happy (in addition to medical and psychological input where appropriate). Therefore, people who prefer daylight use lamps that replicate this, or they will adjust their schedule to maximise daytime hours. I was baffled that I hadn’t considered this relationship with my environment before in such a way.
On an aside there are people with XP who get on and do things just as those without XP, although they may choose to wear sun protective gear whilst doing it. For example, they may still partake in lots of typical day-to-day activities but with the addition of wearing all the gear—or not, if they choose. I am not one of these people. Where applicable I will absolutely avoid the daytime equivalent of a given activity as far as possible. When I last had my own flat, I even used tin foil to block the windows even though I could have just as easily used transparent UV filters. The flat definitely looked quite suspect and it was no surprise that visitors didn’t come round more than once—reassuring people who entered that they had nothing to worry about perhaps made things even worse!
Therefore, as we near Christmas and I sit here with a big smile on my cold and icy face, I have vowed to myself that I will embrace my wintry relationship more than ever before. I am actively working out where I can go in the (British) summertime to enjoy more of winter. Thus far, the southernmost tip of Argentina and the South Pole, where the sun doesn’t even rise some days are at the top of my list. I’m unsure as to how I would be able to continue to practice dermatology in these places but, certainly, I will have peace of mind.
On a more achievable scale I have promised myself to wake up early enough to be able to have my morning coffee outside (in the dark) so that I can feel the cold breeze and really absorb some darkness to set up my day in the right way.
Wishing everyone a Happy Christmas and a Happy New Year, I encourage any readers to make active steps to introduce a bit of what you enjoy into every day!
Richard Barlow is a person with xeroderma pigmentosum and the chairman for Action for XP, a charity which works to support people with XP in the UK and abroad. Incidentally, he is also a dermatology doctor training to be a consultant. Please contact Richard if you have any thoughts on this piece or suggestions on what you would like to read about:Richard@action4xp.org
While the tone of Richard’s pieces may often be light-hearted, do bear in mind that XP is a serious condition and can be life-threatening. There is no cure, only supportive management, and each person is entitled to manage their own condition in the way they deem best for them.