Dark Threads

Introductions and Warnings

I’ve recently started a Granta course on Nature Writing and it’s spurred me to start writing as something of a daily practice. I want to use this space to share my excitement as I discover more about the life of Barbara Fea and to bring you with me as I return to poetry as a form. I can assure you that there will be some Badger and Vole and more than a few snapshots of life here on Sanday in Orkney.

But.

I remember taking part in a course run by Unlimited, an organisation set up to promote the work of disabled artists. The trainer said that there’s a cliché that every writer’s first book could be entitled “Who I Am”, except that disabled artists more often start with “What’s Wrong With Me?” in order to get that, with all its associated baggage, out of the way.

I’ve had a week where that has felt like quite a pressing question to address. This is a tale that this discusses injury, allergy, absence and the pressing presence of mortality. It wasn’t a simple thing to write. It may not be an easy thing to read.

The Hip Pop

Last Friday, I was in the kitchen with my husband, the house a mess from three dogs, four cats and two men stuck indoors by a relentless wind that still presses hard against our front door, with only a brief interlude today before it’s set to return.

I reached across for the cat’s bowl and felt a sickening clunk as I stretched. My right hip, which is often a little too mobile for my liking. A physio wryly said “Your range of movement is normal. For an eleven year old girl who’s dedicated every day to gymnastics. For a man approaching fifty… not so much.”

That jolt as my hip lifted from the top of my thigh bone and shifted, landing an inch out of where it should. It left my foot pointing inwards and my stomach dropping. The dim light flashed white and I cried out in pain. No, that’s not right. I screamed in pain.

My leg buckled under me and I felt the burn of sciatica return. I went, in that instant, from feeling pretty good and fairly mobile to lying in bed, trying to shift and squirm until the pain eased. It did not. I take an array of strong painkillers and I’ve had years of help with the psychological techniques one can employ to tame that endless urge to fall down, screaming. This one pop ripped through all of those barricades. I was breached and broken by it.

In between the howls and curses, I sent the necessary apologies to the Gospel Choir, the Men’s Shed and to the friends I’d said I’d chat to. I could not work on my research, I could not watch TV or play a game to distract my focus from it. I was nothing but pain and sorrow.

By Sunday, I was able to shift and swallow the sickening pain enough to go to the Kirk. Now, a discussion of why I go and what I get from it is for another missive, but the hour of quiet and song was much needed, as was time with friends afterwards. Still, I was relieved to get home.

And then, I went to open the microwave and forgot that there was a bag in front of it containing three bottles of after-shave that we’d excavated while clearing out some cabinets. The bag was wrapped around them, but not sealed.

The Slightest Touch

I touched the bag for less than a second and, well, perhaps this is the kind of thing I should try to explain in poetry:

The Black Thread

The slightest touch sparks a gasp.
Burn born nerves begin to ring:
A whiff is enough, but this, a touch?
It overwhelms. The clasp clack of cabinet
then blister pack crack, pill tang tongue.
Hiss of rushed tap, the stuttered gulp.

My hands, reacting, pale and painting
first a bruise, an ink-drop blot
that plots a new and narrow course:
backed up blood in closing veins:
Death meanders a starving path
on bleaching wrists, the black thread.

So slight a touch, and the stark spun begun.
Words fall, fail as lungs buck, blocked
Throat cold as the blade of shears, ready to cut
through the army of arcane antihistamines;
To split the spear of will that frays and strains
yet still - just - pins up an ever-setting sun.

I don’t often talk about how it feels to risk death each time I touch anything, to trust folk not to be near me in perfume or when they are unwell. It’s taken a very long time for me to find ways to survive with an illness I’m told is so bizarre I could well be the only surviving patient with this diagnosis in Scotland. Even if I’ve spoken to one or two others who’ve found themselves on this crooked and peculiar path.

Living with Life-threatening Allergies

How does one talk about it? When the smell of onion or cheese or garlic or nuts could be the end of me? I feel so painfully diminished by this, when I can’t travel - how could I survive Duty Free? I’ve not seen most of my family or my friends from London and the Isle of Wight since before Covid. I couldn’t go to my stepfather’s funeral and I may never attend those held for my mother, my father or his wife. I’ve not hugged my sister or sat down with my father for a meal in such a painfully long time. I’ll never visit an art gallery or archive anywhere beyond Orkney.

I’ve learned to adapt. At home, we have found a small, careful diet that means I’m not malnourished or passing out from a bloated stomach or from my throat closing. I’ve learned which fabrics and dyes I can tolerate and for how long. The specialists have set up an array of medication that gives me a little bit of a buffer, but, let’s be honest, the dice are loaded, and not in my favour.

This Monoclonal Mast Cell Activation Syndrome diagnosis I have paints a bleak picture of an illness that will progress and infest each system of my body as it develops. The more likely outcome, though, is that I will die from the idiopathic anaphylaxis, the deadly allergic reaction that doesn’t even offer the helpful cues of the puffed face and lips. Instead, the system misfires adrenaline and other hormones as well as histamine, each time with the risk that it creeps into another part of my body.

Hope and Trust

I have to be so careful. Avoiding known triggers is the only way I’ll have a chance to grow old. I’ve mapped out Kirkwall by scent and risk. It’s the reason I started to spend so long in the archive - I know I’ll be a safe distance from folk and I know they don’t allow food in the room. Of course, I feel no loss when I love the place so much and the staff have come to know me, know my research and find the same thrills and horrors in each new discovery.

I don’t know how often each of you has to face the thought that you may, within the next hour, die. I am so glad it’s something that not many of us spend so many days aware of, but that awareness brings with it such an urgent drive to leave something behind, whether it’s a dyke I’ve mended that outlasts us, that I’ve helped someone out, written something that struck or stuck with someone or the shared and ordinary hours of friendship.

To me, it matters. It’s worth the effort.

Now. That’s the maudlin thing that’s sat on my shoulder like an unwelcome and bony cat. It’s said and, I hope, it’ll be read. Now, I can clear my mind and switch to sharing with you the things in which I delight, the things that tease the cat and the things I want to leave with you. The wonder, the love and the learning.

I’m new to Substack, but it should offer you the chance to subscribe to this blog, so the things that keep me alive with joy will pop up in your inbox as they appear.