Issue 7: Hear from the ENO Breathe Community

Florence Maskell: Florence wasn’t able to join us on stage at the Coliseum last month, but was inspired by the online creative writing sessions she took park in. Using the themes for the new lullaby we wrote, she has written a poem whose words and sentiment will resonate with most of us.

Anna Davidson: Writer and editor Anna Davidson had never written any poetry before last year, but was inspired to do so wanting to capture and share the experience of long Covid. Now she shares poems regularly on Instagram and has had work published in Pennine Platform.

Phil Mellen: Phil Mellen is another one of us who has found his creative talents have blossomed and taken him on a new path with long Covid – perhaps a silver lining to this illness. Phil’s achievements are huge… and a reminder of just how much talent we have within our ENO Breathe Community.

Aiden Heed: Aiden is usually found on a Friday night at his local pub belting out Def Leppard or Motorhead, but definitely not singing lullabies. Last month he was one of the 67 of us who performed at the London Coliseum, swapping heavy rock for something far more serene.

Florence Maskell

About Florence: I’ve been to the ENO Breathe creative sessions and loved them, as well as the Twilight sessions, which have all been a life-line during some very difficult months. I wasn’t far enough along with my Covid recovery to attend the in-person session or performance as I’d really hoped to be able to do, but the online sessions have been wonderful. In response to the first creative session (lyric writing) where the composition project was explained, I went away to think about the three lullaby themes (Dawn, Dusk, Midnight) and to see if any words would come to me. I haven’t attempted to write anything expressive or creative for years (decades!) and it’s not ‘my thing’, but the session unlocked something in me and I wanted to give it a go, just for myself. It felt possible because the ENO Breathe team and participants are so encouraging and supportive of everyone’s contributions, and that gave me energy to have a try. I wrote ‘Dusk’, below, very soon after the first session.

DUSK
Bluebells glow, ultraviolet, under the apple tree blossom.
Scents blow, mystery deepens, the garden sounds.
Stars circle, night beckons, we cross over to dream.

MIDNIGHT

The day turns, I turn.

I wake, I ache, I long for rest.
I click the light.
Peace, please.
Please, please, please.
“Come to me soothing sleep”
Sings in my head.

I click the light, on.
I thirst, I sip, light off,
The night wears on.

I wake, I ache, I sigh, shift, turn.
I long for rest,
I kick the covers, they fight back.
Too cool … warm … which?
I fear,
Fright fight flight,
So so tired, I’m wired, fright fight flight,
I breathe, I count,
I calm a little,
Slow,
Gradual, slowly.

Sometimes I weep,
I cry.

I weep, I drift, I sleep again,
Wake, sleep, again, again.

I wake, day breaks.

DAWN

Boots crunch in the chilly dark. I am alone.
Pinpoint sun, spikes of light, pierce the stark black branches.
Rose flames blossom, the sky expands.
Birds wheel.
I want to sing.

Anna Davidson

About Anna: Writing has always been a part of my career (as both writer and editor) as well as my hobby, but before Covid I had never written any poetry. That changed at the end of last year when the urge to try to capture and communicate the experience of long Covid became overwhelming. In January I started (apprehensively!) to share poems on Instagram @mondayispoetry. Reading the responses from friends and strangers when my words have resonated continues to be a highlight of my week. For Long Covid Awareness Day in March, instead of posting a black-and-white photograph as requested, I posted black-and-white text. As I steadily recover from the illness, this poem reminds me to appreciate every moment of good health. 

In black and white

Things I can no longer do because of long covid:

Run 5K.

Do it your way.

Stay up late.

Feel great.

Stand round chatting.

Earn a living.

Eat delicious.

Be ambitious.

Leap from bed.

Get ahead.

Push on through.
Make future plans with you.

Waste a day. Disobey
my body’s cues. Betray
my heart’s desires. Lie and say
that stuff’s okay.
Live for any moment other than today.

Phil Mellen: Long Covid, music and me: how long Covid has led to a career in music

About Phil: I became ill with Covid in March 2020 and ended up not working for a year but after a few months of inactivity I started writing songs (I had written a few previously but this became my most prolific period to date) – recorded some of them later in the year and through that gained a recording contract with a small record label and since then have played over 50 gigs, featured on national radio as part of the BBC Upload festival and released an album and 2 EPs (3rd EP due out in July). It isn’t lucrative and I work part time alongside it but it had realised a dream that I have held since I was in my teens.

In March 2020 I was working as a senior local authority officer in one of England’s largest cities. Music had always been part of my life, but through a busy career in educational leadership and a growing family, it had very much taken a back seat, apart from attendance at concerts. On March 15^th, I began to feel unwell with what I now know was the first of four (so far) bouts of Covid. The virus left me hospitalised and then pretty much bed-bound and unable to work. At first, I read a little, watched way too much TV and waited to get better.

When it became clear that I was not returning to work anytime soon, I started writing songs in a more prolific way than I ever had before. The first two were Covid inspired: Wintering (part prompted by the book of the same name by Katherine May) was about the benefits of illness-imposed time out, and Zombie Romance inspired by nights watching The Walking Dead when I was too ill to sleep. I wonder if any of my fellow long haulers can relate to these lyrics ‘Sleeping alone in the daytime, wondering when it will end’ (Wintering)? 

Two songs became eight songs then fifteen and I went to record at a local studio using some of my redundancy payment from the job I had reluctantly had to give up. I sent the four songs I recorded out to a number of record labels and, after some discussion with a few different places, I signed a recording contract with a small outfit called Wobbly Music on a 5 year / 3 album deal. This was the fulfilment of a dream that I had when I was a teenager, and I wouldn’t have got close if I hadn’t contracted long Covid. Every cloud… Since then I have released an album, two Eps (another one on the way in July) and a number of singles, all under the name BlackSheepLad. I have played over 50 gigs and festivals (usually as a duo) and have found a very positive effect on my breathing in the discipline of rehearsing and performing songs.

The ENO Breathe programme also helped, particularly the breathing exercises, and I feel that aspect of my health has greatly improved. Other long Covid symptoms have remained much the same, especially fatigue and muscle and joint pain, but I am able to juggle my music commitments around part time working from home.

Am I making a vast fortune from my music? Sadly not. However, I do get the joy of seeing that my music is being listened to in more than 40 countries round the world on various streaming platforms, played on dozens of independent radio stations at different times, and that one of my songs was featured nationally on the BBC Upload Festival and now a local filmmaker is making a film based on that song. Do I wish I never contracted Covid? Probably. But now I spend way more time with my wife and youngest children than I ever did before and get to live out some of my dreams. So, I can’t see long Covid as a completely bad thing.. Hopefully music will remain part of my recovery and life beyond long Covid, whenever that comes.

If you want to check out of any of my music, then I am on all major streaming platforms as well as YouTube.

YouTube – BlackSheepLad
Website – www.blacksheeplad.com
Instagram – @BlackSheepLad
Spotify – BlackSheepLad

A few of my songs are specifically about Covid or its’ impact on my life.

Aiden Heed: From Karaoke, via Covid, to the Coliseum

March 12th, 2020, 13 stone of 63-year-old muscle was going to the gym five times a week and cycling regularly. The following day, I felt tired and non-specifically unwell. For the next week I worked from home, feeling worse by the day, losing my appetite, but no Covid symptoms. By Friday 20th I was so unwell I made the momentous decision not to meet my friends for our usual Friday evening of large amounts of alcohol and raucous rock Karaoke at the local pub. Unbeknownst to me it was a momentous day in the history of Covid: the Government ordered the shut-down of pubs.

Over the subsequent days I became increasingly unwell; 111 diagnosed “seasonal flu” and gave antibiotics, but by March 29th I was almost catatonic, my weight had plummeted 2 stone and I was to admitted hospital, straight into ITU. I deteriorated rapidly, unresponsive to the continuous positive airway pressure (CPAP) treatment. My wife was called, and told to be prepared for the worst. For those of you lucky enough never to have encountered one, a CPAP mask is clamped immovably onto your face forcing air at high pressure into your lungs at a rate that, if available to the big bad wolf, would have enabled him to blow down the pyramid at Giza. The CPAP experience is one I hope to never have again, making me feel so awful at one point that I thought I would die and remember with crystal clarity thinking “it’s better than this”.

I was transferred to a discharge ward with a normal oxygen mask, managed to get out of bed and walk a few steps hauling the oxygen cylinder. The staff removed the mask to see how I got on; 3 hours later I was discharged – the hospital was full.

I was weak as a kitten, breathing with difficulty, and down to 10 stone. But I was alive. A week later I woke up and my left lung inflated -a truly joyous moment. A few days later I started to work from home. My appetite slowly returned and I regained much of my drive and energy.

All was going well until November, when everything fell off a cliff: energy, breathing, mental acuity – losing most of the gains I had made. Except my appetite; that stayed, and over the following months I found the final stone I needed to get back to my pre-Covid weight and a further 3 stone which someone had carelessly left lying around.

My family and friends were full of love and sympathy but could not comprehend why “grab ten minutes in bed” did not cure the fatigue; what it felt like to take in a lungful of air and feel nothing; what brain fog did, not just to your memory and cognitive ability, but to your confidence and mental health; the random pains; not being able to trust your body.

Eventually I stopped talking about it, internalising everything. That was a very bleak, dark time: being part of the first wave of Covid survivors there was no support, with all resources focussed on keeping people alive. There was no understanding of what ‘post-acute’ Covid felt like. And there was no-one who viscerally understood it for us to talk to.

Referred to a respiratory clinic, my diagnosis was damaged lungs full of “ground glass”, as shown on Xray, and I was prescribed steroids (which I took for a year). The Trust was not linked to the Breathe programme, but after much pestering, I was referred. I remember that first session – Lea and Katie and nineteen people with long Covid. The lifting of the black curtain as Lea’s calm, inspirational introduction of the aims and principles of the programme and drawing out of each of our stories. Finally, it felt like something was being done, and the entire cohort understood, empathised and related to each other – I wasn’t alone. Someone in our group took the initiative to set up a WhatsApp group which all nineteen of us joined, and immediately became a support network of inestimable value. Sharing thoughts, feeling, emotions and symptoms with people who understood to a molecular level was incredibly liberating. And with each session we learnt exercises and techniques to relax; to regulate our breathing; to focus our minds; to improve our health. The Twilight sessions reinforced what we’d learnt, and enlarged the cohort of people who knew and understood.

Attending dress rehearsals at the London Coliseum was not just an opportunity to see spectacular productions, but gave us the opportunity to meet in person, nurturing the bonds of the ENO Breathe Community.

Then came the “would you like to write some lullabies and sing them on stage to a full house before a performance” email – TOO DAMN RIGHT I WOULD. The surreal experience of being in a roomful of the ENO Breathe Community with the sumptuous Suzi, the wonderfully talented musician, Jack, and spending four hours writing the most beautiful words and the most uplifting of melodies.

The email on the night before the performance “would you like to make a speech at the end? Don’t worry, Marina will tell you what to say”. You may, by now, have guessed that I don’t have a “No” button so….

Then the day: 67 ENO Breathe divas in one room. Rehearsing a wonderfully edited five-minute, 3-part lullaby. Glorying in the space. Wandering from place-to-place through the day. Changing into our glad rags. A brilliantly relaxing face-to-face session with Lea (and for those of you interested, he is much taller than you expect). The rehearsal with Mark, the ENO Chorus Master, on keyboards. Eating in the canteen together. The stage rehearsal with the orchestra was something else: the orchestration was one of the most wonderful sounds I have ever heard, and the trill of the flute mimicking birdsong in a pause between lines completely threw me with its’ beauty.

Waiting backstage, knowing that every part of the day so far had taken more of my energy, and tired my mind, forgetting a few more words every time we sang but realising that no-one would notice so grab the adrenaline and go for it. Listening, from behind the curtain, to the Chairman’s speech, then, as Suzi began her introduction, filing onto the stage from both sides in three choreographed lines, with more ENO Breathe performers in in perfectly-lit stage-side boxes. The introduction; Twilight segueing perfectly into Midnight, then the seamless transition to Dawn; the beautiful ending; the thunderous applause.

Then to front stage, with Sharon (another person without a “No” in her vocabulary), who made the most wonderful speech, before passing the mike to me. When we met with Marina (ENO Deputy Development Director) at 5pm she had told me exactly what to say – “Say whatever you want”. I was too tired to prepare, so I just said what I felt. Finished. We all filed from the stage to a standing ovation.

The elation moved to the bar where the wonderful ENO Breathe staff, who had supported us throughout the day, catering to our every need, had brought our bags and bits, drink, conversation; meeting the Chairman and CEO with whom we had a great conversation; then the bar closed and I went home, totally exhausted but filled with joy, confidence, and completeness after one of the most memorably glorious days of my life.

That is what we must now fight for: recognition, publicity and funding for this wonderful organisation, so that others may have the opportunity to become part of the ENO Breathe Community, to learn, to grow, to heal, to find joy.

A huge thank you to everybody who contributed content for this issue. Please do get in touch with any ideas or submissions that you would like to be considered for future newsletters. This can include poetry, prose, artwork, or anything else. If you want to write something but you’re not quite sure what, please do get in touch at [email protected] to chat about it. 

– Joanna Herman, Content Curator