‘Restful’, a word that doesn’t cut it anymore.
It used to mean TV, reading, browsing online,
but now I fill up on pure rest. Not bed rest,
Lying down without the bed,
embracing the floor as Bed is forbidden,
reserved solely for night-time sleep.
There are new rules. Even so,
I have fallen asleep on the landing,
Kind Floor, sweet Floor, forgive me.
Sometimes I cannot help myself.
Sometimes it is a little like love,
Floor that is always there for me,
Floor my body adores.
In May 2017 I wrote an essay for a disability studies conference. My abstract had been accepted months before, but as July approached, and despite having paid £90 to attend, I realised I would struggle to last the full day.
I was to speak about how we might define ourselves as disabled. I had a vague sense of myself as disabled but in no medically diagnosed way. I wondered whether one could self-define, and was developing my own category of disability. I was interested in how we are permitted to narrate ourselves.
The route to the conference university was a train ride and then a 25-minute walk. By June I knew the walk would be impossible and had decided to book a taxi. Then as my pain and fatigue increased I decided I would attend, but leave at lunchtime. A week later I planned to only read my paper and leave at the coffee-break. I didn’t want to do this, as in the past I’ve thought people that did this were rather rude, but finally, I realised I could not attend at all as I was too ill.
This was the year my self-perception shifted.
In 2017 I’d termed my collection of impairments ‘narrowness’. I am tall and slim and have narrow hips. I have long, narrow, piano-player fingers. I have narrow ear canals. A narrow vagina, too, which hasn’t impeded sexual congress but has impeded routine cervical exams. I was told belatedly at forty-six, after yelping ever so quietly for too many years, and leaving examination couches in tears, that I should ask for the ‘virgin speculum’ next time! The language of medicine continues to astound me.
My narrowness also expresses itself via my ears. They have provided me with hundreds of delightful trips to the Liverpool Royal Infirmary. There I sat on chair after chair in the queue of endless plastic chairs that lined a long, narrow corridor. Ear clinics do not run appointments, merely queues!
The cause of my deafness and ear pain? A black fungal infection which refused to budge despite my ears being wadged with countless bandage strips coated with anti-fungal cream. The strips were removed after three days and I would contemplate each stringy black worm being drawn from my head and wonder what was going on. The paler the strip became, the fewer fungal spores were remaining. The infection would almost clear up, then return with a vengeance. Almost every other patient at the clinic was more than thirty years my senior, which I found odd. At some point the staff also thought it odd, and tested me for diabetes. The result came back negative.
After ten months (!) my ears were clear. Clear, not cured of narrowness. I still sometimes have tinnitus or pain…
My nasal passages are candidates for narrowness, too. I grow polyps in my nose and have done since I was 18. The first time I took my blocked nose to a GP, I feared a possible tumour as I could touch the fleshy blob in my nostril. I was relieved to be given drops that sent the polyp packing. Later I became blasé about their appearance and ripped them out! Polyps have no nerve endings, you see, so there’s no pain. It can be bloody, but it’s quicker than trying to get a doctor’s appointment.
In my early forties, I frequently felt the onset of a cold. I’d wake with cracked lips, a sore throat, swollen glands, my tongue sticking to the roof of my mouth, symptoms that would mysteriously pass away during the day. Eventually, I connected the breathing difficulty with my old facility for growing polyps. Even if the blighter wasn’t hanging down in my nostril, could it not be budding further up the nasal passages when I was asleep? Several uncertain GPs, one superb Nurse-Practitioner, and one trip to the ENT consultant later, and it was confirmed that I did have night-time polyps. “If you are a grower of polyps, you’ll always be a grower of polyps”, the consultant said. I’m now on a steroidal nasal spray for life.
In September 2016 I injured my back, but I didn’t go to A&E or the doctors. This was the wrong decision. I insisted upon walking and continuing work, but pain is a warning system in our bodies and if we don’t listen to it, pain will get louder. What I didn’t know is that at some point the feedback system breaks. Even if we do listen, and we do stop, it may be too late.
I finally went to the doctor’s in January 2017 and was referred to a physiotherapist. I received physio from February to April but ended the sessions when I realised I was getting worse. Scarily my 73-year-old mother had more energy and stamina than me. I visited my dad too, and saw that I was moving at the pace of an 82-year-old who has Parkinson’s! I also had freezing cold hands. It used to take 15 minutes to walk to the doctor’s surgery. Then it took me 25. Then I decided to book taxis. In April I went back to my GP, who organised blood tests.
They showed that my folate or B9 level was below range. Vitamin B deficiencies may stop enough oxygen getting around the body, hence weakness, tiredness, pain. Hallelujah! A tangible thing was wrong and could be fixed.
But after two months of high dose B9 tablets, although my B9 had shot up, as expected, my B12 did not follow suit. In fact, it had reduced to 186 on a scale that ran 180 to 950. Not good. In addition, it should have increased because B9 is necessary to absorb B12. My doctor prescribed a course of five B12 injections over 10 days, and mentioned that I might have chronic fatigue syndrome.
After the course of injections, I did NOT have more energy, more strength, or the ability to walk for more than 10 minutes. By June, I had severe abdominal pain in addition to the back and hip pain. It felt like a horrendous dragging period. But I don’t have periods because I had an early menopause, and I did not know what this new pain was. I was becoming scared.
In August 2017 I had an internal scan which gave no indication of cysts or tumours in my womb. There was ‘no major anomaly’, which begged the question, were there any minor anomalies? The summer of 2017 was so bad I don’t recall writing. This poem came in the autumn, I think.
You go to bed at nine and realise it’s too late to have a bath
and still be responsible for your own safety.
Cooking safely means sitting down between steps
when steps are jarring and far from reaching 10,000 a day,
as you did last year, you are looking to cut corners even
at 1000 steps, even just around the house. Corners
are places you forget what it was you came upstairs for – ?
And remembering what you went upstairs for, now you’ve come
downstairs, is NO GOOD because, frankly, you won’t be going back
upstairs for quite some time, even though exercise was once fine.
You have ten minutes exercise but the physio wants you
to add a walk, and you know that if you do, you’ll have to
abandon laundry or the watering of plants,
when plants are everything, steps nothing.
Looking out on the garden this summer is everything:
a spectacular goldfinch tweaking in the bird bath –
everything! Dimpling rain. Showers.
You skip showers because showering means washing your hair
and really, do you have to? Now
each room’s an uncertain cell,
each cell a waiting room.
You know adrenaline, the flight or fight hormone? It’s produced under stressful situations and acts as a painkiller, encouraging the body to continue action even if it has little energy. If the released adrenaline is not used for either fight or flight, a healthy body will reabsorb it.
If you inject rats repeatedly with adrenaline they stop reabsorbing it and become weak and extremely fatigued.
In the years leading up to 2016 I was living in a very stressful situation, and I think my production of adrenaline must have been constantly high. This may have contributed to my developing the chronic fatigue. This and genes from my mother who also had ME back in the 90s. My back injury then placed my body under siege for a prolonged period, and eventually altered my pain responses. I now have pain not only my hip and back and abdominal region, but in my arms too. Yet I have not injured either arm.
The GP says chronic fatigue syndrome and I say fibromyalgia, because my levels of pain outstrip my fatigue.
Do my anomalies affect me on a ‘daily basis and in a significant way’, as the job application monitoring form puts it? In 2017, I would have said it depends on which day you ask me. Today my ‘anomalies’ do affect me on a daily basis, and in a significant way. My life is mostly about how to reduce pain so that I can manage the one day a week when I go to work in Leeds. Co-codamol, hot patches and lying on the floor whilst students are doing group work, are all part of my strategy.
Instead of thinking that we move from non-disabled to disabled with age and that our experiences of poor health, or distress along the way, are anomalous things that mark us out as failing, we might flip this over and see the norm for most of humanity as being disabled. Those rare occasions of perfect health and perfect physical, mental and social well-being are simply odd, funny moments of being non-disabled.
I like my narrowness and am reconciled to my impairments overall. Often, I don’t feel quite proper; usually when I leave the house! But then I think of my friends and family, and the writers I have read, the massive variety in our bodies, minds and behaviours. Few of us are ‘proper’. And isn’t that diversity and range precisely the point of human existence?
I suppose the main transition I have made from 2017 to now is that I had not yet come into the fullness of my pain. In some narratives ‘understanding the past’ prompts change. In my story, not so much. Even with understanding, I am not entirely sure what to do with my pain.
Cath Nichols was born in Kent, 1970, but spent her childhood in Papua New Guinea and New Zealand. She is the author of two pamphlets, Tales of Boy Nancy (Driftwood, 2005) and Distance (Erbacce Press, 2012) and a collection, My Glamorous Assistant (Headland, 2007). She holds a PhD in Creative Writing. Her latest collection, This is Not a Stunt, was published by Valley Press in September 2017. She performed ‘Frail’ at our The Real Story: Transition event as part of the Not Quite Light Festival 2019.