A bit of writing about being neurodivergent, disabled, ethnic and a woman in Wales.
When I was a child, I had bad asthma. Before the animals and the smallholding my parents owned an ex-council house in the Midlands. I remember the first time I got an asthma attack.
The upstairs was basic, and I mean that there was no electricity upstairs and no heating. It got cold. Asthma does not do well in the cold. If the temperature drops low in a bedroom then it can cause lung issues. And that bedroom used to drop cold. One of my favourite things to do in the morning was to draw pictures in the thin layer of frost on the inside of the glass.
So, this one night I couldn’t catch my breath. It woke me and I woke my mum. Now I had a good think before doing this.
Mum was the scarier of my parents but also the one who would make things much better. She was the problem solver and the one who told you off if you did something wrong. In my autistic head I realised that waking her before morning was bad, but that was allowed if you were ill. I had to decide if the ability to breath, or not being able to, was an illness.
Up to now illness had been colds and temperatures. I should say that I was about six at this point. I remember wheezing and sitting cross legged on my bed, not feeling the cold, just concentrating on getting air into my lungs. I made the decision that not breathing would mean I would not be around, so it had to be an illness.
I walked across a bitingly cold floor with bare feet to mum and dad’s room. I shook mum awake. She woke briefly and told me to go back to bed. I stood for a moment. Then went back to bed.
You must realise that if you are an autistic person, saying that something is wrong is hard, it is much better to cope and carry on as best you can.
I sat for a while on the bed, but my breathing only got worse.
I was getting scared now. I went back into the bedroom and shook mum awake. I was now not caring if she was angry, there was something wrong. Mum woke super groggy and got angry, she started to take me back to my bedroom and I’m not sure when, but, by the time we got there she was worried. That turned to fear quickly.
Back then doctors had a 24/7 coverage so she rang and got our local doctor. She explained what was happening and he got in his car. There was no ambulance. Just the doctor.
Mum was trying to calm me down and we were trying to work out what was the best way to breathe; in though the nose and out the mouth or out the nose or… Basically she was distracting me. It felt like hours before the doctor arrived, it would have been about fifteen minutes as he lived locally. Doctors used to then. He arrived and did a quick assessment.
Mum doesn’t look panicked but now I know she must have been. We have a family history of asthma and I know at least one grandparent died of it. In a world without inhalers and no heating she faded in her bed – never quite able to take a full breath. My mum looked at me and that must have passed through her head.
Where is the plug? – the doctor asked.
We have no electrics up here… – mum answered.
The doctor didn’t say anything, he simply nodded.
I’ll be back. – he said, before Arnold had even thought of becoming an actor.
This is where it gets a little fuzzy. I guess I must have been unable to hold onto full consciousness due to my breathing and simple tiredness. I was exhausted. After that I get snapshots.
Mum lifting me into a sitting position and there being a lot of pillows. Feeling warm as I’m wrapped in blankets. The doctor mumbling something and placing a thing over my head and there being cold antiseptic smell.
Mist in the air that swirled before disappearing. Mum leaving and the doctor sitting next to the bed, coat still on over his pyjamas, which I remember were red and cream check, his legs moving up and down, first the right and then the left. Continuously moving.
I fell asleep and wake to find the doctor holding a mug of tea, still, but now mum moving her legs and not spilling the hot liquid from a mug she held.
It’s only after questioning mum after the fact that I found out that they were using a foot pump to get the nebuliser and oxygen to work. What I didn’t see was the hardware and cylinders. Those they had hidden out of my eyeline at the bottom of the bed and to the side.
They sat up all night keeping me alive. Why not the hospital? I think if I hadn’t improved with the nebuliser then I would have ended up there, but I did respond.
After that I was given inhalers and a regime of medication. It never happened again, and it wasn’t until I was in my twenties that it all disappeared.
Then, at the beginning of December last year I started coughing. I thought I had a cold. The heating was going on, but perhaps not as warm as you’d expect. We still have holes in the extension and there are leaks in the roof. So, we are heating minimally.
I tested and worked out it wasn’t covid. I waited for it to pass.
It got a little better when we heated the house a little more over Christmas for family and friends, but then as soon as the temperature dropped, I coughed, and coughed and coughed.
Finally at the beginning of January I went to the doctors, and I now have a blue inhaler and I’m monitoring my peak flow. It turns out that you can get childhood illnesses as an adult. They reoccur. I’m not officially diagnosed with asthma, but they have a fair view that it is back.
Until I get a month’s worth of measurements though I am in limbo of a cough and blue inhaler in an emergency. Not sure yet what I think about this latest problem, I had assumed that I had grown out of it for good. My head still hasn’t processed this latest hiccup.
However, knowing asthma as well as I do, once I get the right medication, I will be able to manage it fine. If I can get it as good as when I was a child, you won’t be able to tell. Until then though I find I am apologising for my cough and saying that it is asthma every time I go out the house.
It is January though and I must start planning for the year. And it is a long list. The terrible builder has left us with a mess, but it is the gardens and paint that I am excited for. The house is going to get fixed, and I want to bring the outside in.
We have designed the extension with a garden room, and I can’t wait to start planting the living wall. I have been thinking of painting it deep red so that the green just pops… But we must fix the roof before we can put any paint on the walls. Still, it is nice to plan.
And yes, it is tricky doing stuff around the house and even outside, I get breathless a lot, but taking it slowly is working. Resting and having many cups of tea help. And maybe, despite my body being a pain, I will be able to grow vegetables this year and sit in a courtyard filled with flowers; be able to potter and weed a little. To get there though is an awful lot of planning and work.
Still, it is all doable, one step at a time… Baby steps and we will get there. I just got to move a little slower and get more help that I would have in the past. One thing for certain, I refuse to let this setback take control.
I have plan. And January is the month of planning and new beginnings, with or without a cough.
You can find more of The Cleaver and the rest of Kate’s writing on Nation.Cymru by following her link on this map
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