My name is Nicki. I’m a wife, mother, artist, owner of a disabled body and injured brain, hiker, occasional poet, mudlarker, 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 make micro films to capture the essence of a time or place – which I generally publish on my Instagram account.
Longer videos that I make about relating to the outdoors world as a disabled person, and sharing the wonders of the Highlands of Scotland can be found on my YouTube channel.
Photography plays and 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.
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 Europes least populated areas and a geographically diverse region encompassing mountains, hills, pockets of ancient woodland and large modern forestry plantation, wetlands, Sites of Special Scientific Interest, 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 industry.
I was born in the South of England, but moved here 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 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 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 Chari Malformation, Syringomyelia, Autonomic Dysfunction, low CSF issues and Brain Injury. I’ve explained a little about each of these conditions below, and how they effect 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 brain, 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 causing Syringomyelia – which is where a CSF-filled cyst (a syringe) forms inside the spinal cord. Syrinx can compress the spinal cord tissue, temporarily blocking nerve messages or 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 cyst growing inside my spinal cord. 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 found, and causing me to go through a number of surgeries and procedures.
My syrinx has more recently decreased in size due to surgical treatment, but I have been left with permanent nerve damage that effects a lot of 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 cord will have generally received damage).
This causes me to have constant body-wide nerve pain, issues with sensing heat, cold, pain, sensing the position of my joints, etc. 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.
Autonomic Dysfunction arises from injury to the nervous system, and can mean your body doesn’t regulate these 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 pain. My body can spike or drop my blood pressure with no warning. My digestion can slow or stop altogether, meaning undigested food just sits in my stomach and I’m unable to eat. I often pass out with little or no warning, so have to always be mindful of where I am and what I’m doing.
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 last 6 years. 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. This bed rest can last a few hours to a week 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 is making plenty of CSF to replenish the system, alongside using strong painkilling and other drugs to help ease the conditions effects.
Because of the trauma my brain has gone through, perhaps unsurprisingly, my brain has received permanent damage over time. This causes issues with language, word finding, numbers, memory, coordination, multitasking and means I get overstimulated easily and fatigue quickly.
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 and moving around safely, etc on top of dealing with pain, tiredness, discomfort, etc. My brain becomes overwhelmed easily 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. Or forget one ingredient.
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 skills, forgetting if I’ve taken medication, loosing things, not being able to take part in a lot of normal activities… 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.
‘So how do you manage?’ people ask. I can seem fluent and fluid in the written word, but I make extensive use of technology. I pre-plan social media posts using an app. Pieces of writing exsist in draft form until Ive looked at them a number of times when I’m feeling most ‘with it’. Spell checkers and word suggestion tools are a godsend! I also ask others to help me edit.
I make continual notes on my phone and on paper. I have many databases and lists! I use a password reminder service (I got hacked through using one memorable, very old password for everything, so again technology comes to the rescue). I record all my medial stuff using apps – how much fluids I drink , what meds I take, what exercise I do, etc. I try not to use real money – coins and notes – as I find it confusing, cards are much easier. I find bus time tables and appointment times and dates confusing, so I always travel with other people.
I use an Apple computer, so can shout ‘hey Siri’ to access a function, rather than need to remember where it is in the menus. I find it really difficult to read large chunks of text, so I tend to listen to audio books, and I get family members to assist with important documents, decisions, etc.
I often I avoid social situations. I can very good at covering up with cognitive difficulties – even though that that’s very exhausting. It doesn’t stop me being nervous about presenting any writing, meeting new people, etc. 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.
Please do not mistake this information for medical advice. If you are looking for information about or support with these or any other neurological condition, I recommend the Brain and Spine Foundation website and helplines.