Breathing in

Dear Debriefers,

Back in May, a week after my thirty-ninth birthday, I went to a hospital in a London to do a sleep-study – a routine annual appointment.

The morning after, the doctor comes in to my room. I'm brushing my teeth but tell her we can start. She announces: “You have high levels of CO₂ during the night. You need to start non-IV. How do you feel?”

This is no longer a routine appointment. I'm not sure what non-IV is, and I certainly don't know how I feel. I switch immediately to questioning mode.

I ask about CO₂ levels, I ask about the breathing machine, how it's used, will I need to take it on holiday? After her brusque opening, the doctor explains patiently.

I start to process the emotional impact of the news, the fears I have about the future and my own mortality. Just because I write a newsletter about disability doesn't mean I'm liberated from ableism about my own changing body.

The doctor doesn't ask again how I feel. So let me tell you.

About this edition

We can tell new stories about disability thanks to support from readers. Thanks to Ina for a new contribution and to Eddie for a very generous donation. In the words of Elizabeth Hill, from New Jersey in the US:

“I just signed up as an individual supporter for the year. I want to say how deeply I appreciate your independent content - it’s a breath of fresh air and something I genuinely look forward to in my inbox.”

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist from Indonesia.

Count your breath

I've known for a long time that my muscle condition limits my lung capacity. Aged around 18 I was told that my lung capacity was 50% of what it “should” be. When the Covid pandemic broke out, I remembered this measurement and shuddered to think how it had diminished since then.

Breath is one of the ways we can ground ourselves. It's used in mindfulness or meditation practice. But if I am doing an exercise that says to hold breath for four seconds, should I adjust that to three? Focussing on breath is meant to be calming, but mine is worrying me.

My breathing is changing

I'm finding that sometimes I'm out of breath when I lie down, or when I perform spoken-word poetry. Occasionally, drifting off to sleep, I jolt awake with a sensation I can't clear my throat. I cough, then wonder if I will wake up.

Two years ago my lung capacity was assessed again. It was a touch less than 40%. At my biggest breath out I could exhale just under 1.5 litres. “Respiratory failure,” a doctor told me then, “can start at 1 to 1.5 litres.” I am in the zone.

Having a number for my lung capacity made me realise that there is only a finite amount of air I can breathe in for the rest of my life. I feel alone, and then I realise it's true for all of us.

London in the sunshine

These concerns weren't so much on my mind when I went down to London in May. Recently I hadn't felt out of breath. And I don't have the symptoms that they always ask me about, like waking up with a headache or dozing off during the day.

I enjoyed the journey down to the hospital. Rolling across central London in the sunshine is one of the big joys of wheelchair life, something I could never do when I was walking.

The last time I'd come for an appointment was two years ago, on a wet, dark, autumnal day. This time I noticed how much better I felt about life, and how I'm way more adapted to the way my mobility has changed.

I scooted past luxury stores in Kensington, with a toilet-seat riser in a bin-bag on my lap. I eavesdropped on the languages of passers-by and stopped in Hyde Park to send a selfie to my new girlfriend.

On the cusp of having problems

Before going to sleep they rig me up to a machine, by putting a gizmo on my ear. It uses infrared light to measure the gas levels in my blood.

The day after, the results show that there's too much carbon dioxide. My lungs aren't inhaling and exhaling as they should. In the morning they do a blood test that confirms that last night wasn't a one-off, I've had higher CO₂ levels for a while.

The doctor explains that I'm on the “cusp of having problems when breathing”. They want to start me on non-invasive ventilation (non-IV) during the night to address this.

In the UK our health system is, like in other countries, stretched to breaking point and beyond. But some bits of it work brilliantly, and all without any need for insurance or payment by the user.

Within an hour of results that show I need one, I'm being sat down with a technician. She gives me a new BIPAP machine to use at night and explains how to use it.

The technician talks about my problems concentrating, which is disorienting as I didn't know I had any. I say that I can concentrate better than most people I know.

I've just had the most productive year of my working life. I wonder how much more trouble I could have caused if I'd been well-rested.

Already expected

For the people fitting me with my machine, it is very natural to be going cyborg. According to the doctor she “would have already expected someone with a neuromuscular disease to use one at this age”.

But I didn't know to expect this. I was in some denial about needing it – after all, I don't feel the hangover-like symptoms they told me to look out for.

Needing a breathing mask made me feel unsexy. And my mind whirred wondering what needing a machine every night means for finding my travel wings again.

I worried about further physical decline. I worried about death.

I felt diminished as a human being.

Seeing myself differently

It's easy for us disability advocates to lecture others about curing their stigma or ableism, without examining whether we've cured our own. But the last few years of my physical decline have brought home to me repeatedly that these prejudices are also within me.

Even if we were totally enlightened about disability and ageing, losing ability is distressing in itself. There is often a deep grief in not being able to do something that was previously important to us.

But I am not totally enlightened about disability and ageing. When I started using a wheelchair full-time I worried about how people would see me. But in fact I don't care about that very much. I was projecting onto others the fact I see myself differently for needing to use a wheelchair full-time.

While my work makes me aware of adaptations, it also makes me aware of the huge challenges disabled people face. And as for my lifelong experience of physical disability, it tied my identity very closely to the level of functioning I did have. I didn't see myself like other disabled people with more complex needs.

But all of us are mortal

Sooner or later we all age or acquire disabilities. We become like the people we used to see ourselves as different from. Even if we had nothing but love for them, it can be hard, when we find ourselves in the same situation, to love ourselves.

I don't see having ableist thoughts or feelings as necessarily bad. We were all raised in societies filled with prejudices about how minds and bodies work and it would be strange if we didn't have them.

For me the problem is not that we see ourselves or others in ableist ways. The problem is not moving past that reaction. We need to follow these feelings with a comma, not a full stop.

Heading home

Putting on the BIPAP mask is at first overwhelming, feeling the force of air being pumped in and pushed out. The mask is only on my nose, so if I open my mouth, air is alarmingly sucked out. But my attitude starts to change as I learn to use it, feeling my lungs move in a new way.

I head home, disoriented. Outside the hospital I stop and start as I find the best way to arrange both the new machine and the toilet seat on my lap and then, ingeniously, also on my footrest. I'm proud to travel home like this, independently. I definitely can't concentrate on the emails I'd hoped to catch-up on the train.

By the time I'm home I'm starting to get excited to try the machine. The good news about finding out you've got a new problem is that now you have new solutions.

It turns out to be a thrilling discovery. That night, after a few hours' use, my mind has a vivid clarity I hadn't felt in years.

Learning to live with it

I'd assumed I was more tired in the mornings because everyone feels that in middle-age. I boast to other middle-aged friends (non-disabled but tired) that I have found a miracle cure.

But miracle cures aren't so simple. Wearing the masks wakes me up with my nose stinging from irritation. I find a recommendation of aloe vera gel on an internet forum. I get a cold (because of the machine?) and take a pause from using it.

A couple of months later, I am now using it regularly to sleep through the night. It still wakes me up, but less so. But the plus of better breathing is balanced by the negative of more interrupted sleep. I'm hoping I get used to it.

Psychologically, I certainly am. I hear others' experiences and learn that a similar device (called a CPAP) is a common treatment for sleep apnea. It's a great comfort to know I'm not alone in putting a mask over my face and switching on a machine before sleeping.

Initially I felt that my breathing not working well made me less complete as a person. But with time it's given me a new way of filling my lungs, and an expanded sense of what a human can be.

Breathing out,

Peter

Outro

See an amazing illustration of breath, in the late Tan Kuan Aw's self-portrait of needing to breathe in a context of pollution and climate change.

Follow my mobility journey, through notes on recent decline or my childhood told through its falls.

More from me: find me on Linkedin or Bluesky. Do get in touch, and find Disability Debrief on Linkedin.

More from Kinanty: find her on Linkedin.

Let your friends know. Sharing the newsletter is how people find it!

Help us do more. Make a one-off or recurring financial contribution to the Debrief.

Acknowledgements

I'm very honoured by Kinanty Andini's illustration of me using the BIPAP machine.

Thanks to Celestine Fraser for thorough revision of this piece, and to Anne for helping to process these changes as well as response to a previous draft.

Thanks to all the staff at Royal Brompton who fitted me with the new treatment in such an amazingly short turn-around. I appreciate your patience with all my questions, and how you helped me understand this change in my life.

Thanks to the readers and organisations whose support makes the Debrief possible.