My name is Nicki. I’m a coastal dweller, wife, mother, artist, owner of a disabled body and injured brain, occasional poet, fossil hunter, amateur geologist, history nerd, fungi fan, Japanopophile and cannot be left in a room with marzipan. Seriously.
I am a Visual Artist working over a range of traditional and digital media. You can read my Artist Statement and a little more about my creative practice here.
I also occasionally write poetry, some of which you can find here.
Sometimes I make micro films to capture the essence of a time or place – which I generally publish on my Instagram account.
Photography plays an important part in my creative practice, but due to disability I now only work with mobile technology. Recent work is posted to Instagram, but a small sample of older work is here.
I’m also a (very wobbly and slow, but dedicated) fossil hunter, trying to make sense of the Jurassic deposits in this northern outpost of Scotland. Occasionally I may get around to making some blog posts about this, if so you’ll find them here.
It sits nicely alongside trying to learn about geology. I’ve been chasing rocks my whole life, one way or another – growing up in a limestone karst landscape, hunting standing stones & ruins, beach combing for pebbles – so it’s fitting I should finally sit down to properly study the subject.
Where I Live
I live in the Northern Highlands of Scotland, about 35 miles north of Inverness, on a latitude more northerly than Moscow (which often surprises people).
This is one of Europe’s least populated areas, and is a geographically diverse region encompassing mountains, hills, pockets of ancient woodland, large modern forestry plantations, wetlands, Sites of Special Scientific Interest, castles and crofts, brochs and cairns, a complex coastline (high cliffs, sandy beaches, large estuaries, sea lochs and firths), vast wildernesses, isolated communities, small towns of a few thousand people; as well as large sporting estates, farms, some small industry, and a growing tourism sector.
I was born in the South West of England, but moved here over 20 years ago, and have now lived in the Highlands for most of my adult life. Initially I came here with my husband as volunteers, travelling in our old 1960s VW split screen camper van, but we loved the lifestyle and decided we wanted to bring-up our family here. Our (now) teens have known no other life and find the idea of living in a city a bit baffling!
I have a number a rare neurological conditions, which affect my life and cause me disability.
I’m using this space as a place to explain them, as – with each of them being rare – its common that I find people have never heard of them before…
So, What’s Wrong With You Then?
(Please don’t ask a disabled person this, unless you’re at a ‘sharing marzipan’ level of friendship. But I’m happy to share, seeing as it’s you…)
I have a number of rare neurological conditions, including Chiari Malformation, Syringomyelia, Autonomic Dysfunction, low CSF volume issues, and Brain Injury. I’ve explained a little about each of these conditions below, and how they affect my life, if you are interested…
Chiari Malformation is a condition where the flow of Cerebrospinal Fluid (CSF) – the fluid which surrounds the brain and spinal cord – has been blocked or impaired.
CSF is important as it acts as a cushion between the brain and the skull, protecting the brain from impact injuries. It also plays a role in the brain’s immune response, helps regulate blood flow around the grey matter, circulates certain substances and clears waste.
When there is too much CSF, too little, or CSF doesn’t flow properly, the brain often doesn’t function well and it can cause all sorts of symptoms and knock-on issues. In 2017 I had brain surgery to try to rectify these flow issues, which has helped somewhat (through this sort of surgery is generally performed to try to stop things getting worse, rather than with a hope of winding issues back).
Chiari Malformation can cause issues elsewhere in the CSF system. If flow of CSF is impaired in the head region, this can cause a ‘mis-flowing’ of CSF lower down, around the spine too. This changed flow can cause Syringomyelia – which is where a CSF-filled cyst (a ‘syrinx’) forms inside the spinal cord. Syrinxes can compress the spinal cord tissue, temporarily blocking nerve messages, or even damaging the spinal cord permanently.
My syrinx was discovered in 2013 when I reported to my GP that I was having trouble with a number of seemingly unconnected health issues – hand tremors, frequent urinary tract infections, arm numbness, balance issues, headaches, vision issues, etc. An MRI scan to investigate the possibility of Multiple Sclerosis found a large bubble of CSF growing inside my spinal cord and squashing it from within. I was told that surgery had to happen urgently, as it was threatening my bodies function from the neck down. This discovery began a period of several years, over which other interconnected health issues were discovered, causing me to go through a number of surgeries and procedures.
My syrinx has decreased in size somewhat due to surgical treatment, but I have been left with permanent nerve damage that affects a lot of different systems in my body. My syrinx is at the bottom of my neck, so I have issues from that level down in a similar way to someone with an incomplete spinal cord injury from something like a traumatic injury (although not quite the same, as different areas of the spinal cord will have generally received damage).
This causes me to have constant body-wide nerve pain, issues with sensing heat, cold, pain, and with sensing the position of my joints. It causes my larynx to spasm and stick (making me intermittently unable to make speech, and sometimes causing issues with breathing), arm and leg weakness, balance and coordination issues, muscle spasms, tremors, occasional temporary paralysis of limbs, etc.
My Autonomic Dysfunction arises from injury to the brain and spine, and can mean your body doesn’t regulate a number of automatically controlled systems appropriately.
In my case, my heart rate tends to always be on the high side – even when I’m calm and resting. It can make even moving slowly extremely exhausting, and causes chest pains. My blood pressure can spike or drop suddenly with no reason. My digestion can slow or stop altogether (for hours or days), meaning undigested food just sits in my stomach and I’m unable to eat more for nutrition and energy. One of the most debilitating issues is that I pass out very often, with little or no warning, so have to always be mindful of where I am and what I’m doing, and generally only go out with someone else.
Intercranial Hypertension / CSF Leak... Because of the brain and spine surgeries I’ve had in the past, I have ongoing issues with the pressure / volume of CSF around my brain.
Not having enough CSF causes severe headaches, nausea and vomiting, tinnitus and hearing issues, eyesight problems and sensitivity to light, as well as being very sensitive to other stimuli (like touch and sound).
It means I’ve basically had a headache every day for the best part of a decade. Simple things like sneezing or going over potholes in a car can be excruciatingly painful.
When the head pain and symptoms are moderate to severe, the only way to really help it is to lie very flat and still. This eases the pain a little an helps stabilise the symptoms somewhat, by taking pressure off certain structures of the brain. This bed rest can last a few hours to two weeks or more at a time, lying still in bed and only getting up for the bathroom. I also consume very large amounts fluids every day to ensure that my body isn’t prevented from making plenty of CSF to replenish the system, alongside using strong painkilling medications and other drugs to help ease the conditions effects. If you see me in sunglasses, rest assured that I am not cool, the world is simply a very glaringly bright place to me!
Brain Injury
Because of the trauma my brain has gone through, perhaps unsurprisingly, my brain has received some permanent damage over time. This causes issues with language, word finding, numbers, memory, coordination, multitasking and means I get overstimulated easily and fatigue quickly. The more tired or otherwise taxed I am, the more these issues tend to show up.
Things other people take for granted, like being in busy shops or restaurants, can be excruciating for me. I often don’t cope well with all the stimuli – noise, movement, light, people talking to me, navigating spaces and moving around safely, etc, on top of dealing with pain, tiredness, discomfort, etc. My brain becomes easily overwhelmed and then looses its ability to be able to think clearly, coordinate or concentrate. It can be annoying, such as not being able to make a decision or form an opinion, but it can also put me in danger, like not being able to judge to cross a road safely.
I always find concentrating hard, and multi-tasking extremely difficult. My family are used to me saying ‘hold on’ if they approach me, as if they interrupt what I am doing it’s very likely that I will forget what I am saying / doing / noting down / etc. Following recipes is hard, as I muddle the steps, or miss one out.
I had to give up driving some years ago, as I began to forget what different controls did whilst in the process of driving, and also struggled to concentrate – which was very scary!
It causes practical issues, such as leaving the hob on, forgetting passwords, having difficulty learning new information, forgetting if I’ve taken medication, loosing things… I often I avoid social situations – I can very good at covering up with cognitive difficulties (even with everything going on, you’d be surprised, and even though that that’s very exhausting to do), but doesn’t stop me being nervous about sounding silly, being lost for words, or about meeting new people. It also means I miss out on a lot of opportunities. People often have no clue just how tricky I’m finding things, except my husband, kids and very closest friends.
But also, the emotional effects of a brain injury can’t be underestimated – it has a big psychological effect. You *are* your memories and the things that you are good at – start chipping away at that and you start to dismantle and diminish your very sense of self.
One reason for this website is an active ‘yah-boo’ to the effects of brain injury, and a reminder of all the things I push hard to keep participating in and enjoying. Every activity – from making art, wobbly fossil hunting, to working my language centre by writing poetry – plays an important part in exercising my grey matter, fighting against psychical and emotional decline, and forming an identity that is beyond being ill.
As I always end my posts on Instagram, my mottos are…
#LiveLifeInTechnicolour
(variety, vibrancy, creativity, art)
#StayCurious
(never stop learning, never stop exploring)
Please do not mistake this information for medical advice. If you are looking for information about or support with these conditions, I recommend the Brain and Spine Foundation website and helplines.
