Issue 12: Hear from the ENO Breathe Community - Jo Herman

To Autumn, John Keats (1795-1821) 

Season of mists and mellow fruitfulness,
  Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
  With fruit the vines that round the thatch-eves run;
To bend with apples the moss’d cottage-trees,
  And fill all fruit with ripeness to the core;
    To swell the gourd, and plump the hazel shells
  With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
    For summer has o’er-brimm’d their clammy cells.

Who hath not seen thee oft amid thy store?
  Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
  Thy hair soft-lifted by the winnowing wind;
Or on a half-reap’d furrow sound asleep,
  Drowsed with the fume of poppies, while thy hook
    Spares the next swath and all its twined flowers:
And sometimes like a gleaner thou dost keep
  Steady thy laden head across a brook;
  Or by a cider-press, with patient look,
    Thou watchest the last oozings, hours by hours.

Where are the songs of Spring? Ay, where are they?
  Think not of them, thou hast thy music too,—
While barred clouds bloom the soft-dying day,
  And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
  Among the river sallows, borne aloft
    Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
  Hedge-crickets sing; and now with treble soft
  The redbreast whistles from a garden-croft,
    And gathering swallows twitter in the skies. 

Written September 19, 1819; first published in 1820 

Jo: Autumn: what comes to mind? The changing colour of the leaves, being wrapped in thick jumpers, crisp blue skies (hopefully!), log fires. But there is the other side: darker days and longer nights, the constant struggle to keep warm (an issue for many with long Covid), hibernation, retreating, all of which can be a lonely prospect for those on their own dealing with illness. Autumn by its very nature is a time for restorative rest, but in our highly driven society it feels we are not really permitted to rest. We have to be constantly achieving/striving/doing- and rest is definitely not a part of that in most people’s minds.

Is there a rebelliousness to resting? Are the people who don’t rest just jealous of those of us who do? Even though some of us have no choice in the matter, as only by resting are we able to vaguely function as we used to. People still rarely understand why those with long Covid can’t ‘just push through’ as others might, being made to feel guilty if you ‘give in’ to the need for rest. Whereas resting should be viewed as essential self-care, whether you need to for medical reasons or otherwise. 

With autumn in full swing, we need to turn to restorative rest… listening to the body as it needs to slow down and prepare for winter.  Maybe we need to be more bear-like in our approach…and they come out alright at the end of their prolonged deep restorative rest (albeit a bit thinner and hungry!).

So, what is true rest? I didn’t know until a wise physiotherapist told me a year into my illness – and it revolutionised my life. And as my life was long Covid, it revolutionised my recovery… Previously I’d thought lying down while watching something fairly mindless, having a chat on the phone to a friend, listening to some music all constituted resting – as long as my body was horizontal and physically inactive. But no, my brain and eyes were still engaged in watching a film. Chatting even with my eyes closed, while lying down, still kept my brain and other parts engaged, and music with lyrics did the same. I was told that my body and brain needed total rest and disengagement. That meant lying with eyes closed (an eye pillow is a great asset), listening only to relaxing instrumental music. I felt so much more refreshed after that true kind of rest. It allowed my nervous system to really drop down to a very relaxed state (and I’m one of those whose parasympathetic system has gone AWOL and who’s been in sympathetic overdrive a lot of the time since the virus, even resetting my usual heart rate).

As the season changes, I look back at this past year and think where I was at this time last year… and I am so much better, managing things now that were impossible for me a year ago. I’ve always tried to look back month on month, rather than day on day, or week on week, as recovery is very much NOT linear.

These past months I’ve had a few major ‘firsts’ as I call them, and I always feel it’s important to celebrate them. They can be as mundane as being able to hang up the washing AND make dinner without having to sit down, or a longer walk, or chairing a meeting… but for each one of us there will be many ‘firsts’ on the recovery path… and they should ALL be celebrated. 

I wanted to share my most significant first at the end of the summer, which felt like an enormous milestone in my recovery: a work trip to Uganda. Before I morphed into a medical journalist and editor, I was a Consultant in Infectious Diseases and Tropical Medicine (the irony is not lost that when I should have been at the forefront of the pandemic, I had to sit it out from the side-lines having got the virus right at the beginning in March 2020!).  

Before I got ill, I was in the process of developing a collaborative partnership with an African organisation that aims to raise and standardise the training for post graduate doctors in order to deliver better healthcare across the region – something very close to my heart.  

As part of this I developed an exchange fellowship which will bring one of their doctors to the UK, and one of ours to their region. In July, I was invited to speak at their conference and launch our new partnership and Fellowship at their conference five weeks later, in Kampala. Now, as we all know, rushing anything doesn’t work with LC, and planning and pacing is key. The week I was invited I got carried away with the prospect of going, finally feeling I might be able to do something vaguely resembling the work I used to do and love. The following week, the doubts set in: it’s a pig to get to (there are no direct flights to Uganda), the return flights are always overnight, the conference was three days, and I also needed to do some hospital training site visits. One friend said they were really concerned it might be too much for me, but others said “what’s the worst that can happen?”. I went with the latter… the worst was that I would feel terrible for a few days or even a week, or it might set my recovery seriously backwards (as has happened previously with other things). But I knew that I only had to be present for a few things at the conference, my talk was scheduled for late in the day (perfect for me), and I would try to pace as well as I could. I basically went with no expectation, and just hoped I’d be ok for the talk and a few other things I really needed to be present for.

I was very boundaried about everything I did. I said I had to have funding to cover accommodation costs for the extra days I needed to be there to recover from the journey before the conference started. The hospital visits would not be fitted in around the conference days – I would leave a day or so between things. I wouldn’t do more than one visit a day, and I would do them at times that worked for me. I said no to things that weren’t on the plan, and came up with another long Covid mantra… if it’s not on the plan, then it stays not on the plan (however tempting it might be!).

Basically, I made it work, by setting clear boundaries and sticking to the plan. I had some bad days, but they passed. And it turned out to be one of the most rewarding and fulfilling trips I’ve done. Meeting colleagues in the flesh after working together for more than two years on zoom was wonderful; being part of something I used to be part of in my pre-Covid life again felt so exhilarating, and the rich conversations I had with so many people from across the east, central and southern African region were really inspiring. Everyone was so enthusiastic about the Fellowship and the whole collaboration, which made me realise the true scale of what I’d managed to achieve despite being so unwell.

It was a far cry from how I’d been two+ years previously: chairing our zoom meetings across six African nations and the UK was a huge struggle… brain fog was still prominent, following the discussion was challenging, my thought processes tailing off mid-sentence, and crashing, unable to function for hours or a day afterwards.  Fast forward to the last meeting we had in July: it felt easy, I didn’t struggle to remember anything, and I didn’t collapse in a heap when finished. 

What has all this taught me? 

• It is vital to advocate for oneself and set boundaries (no one else is going to do this for you!). 
• Be clear about what you can do, and what you are prepared to do, so as not to set yourself backwards.
• Getting back to doing something that you love, and that gives you purpose, as it did in your pre-Covid life is so important. (I know I couldn’t have managed this even four months previously, but I at least felt I could try –  it has taken me 4.5 years to get to this point.)

And remember:

1. Recovery is non-linear 
2. Everything will pass, so however rubbish you are feeling for a day, or a few days (or longer), it will pass.
3. Celebrate your ‘firsts’
4. We are all in this together – and some are out the other side of it.

For most of us this rollercoaster ride of recovery has felt like an enforced hibernation, a very prolonged autumn and winter. But we must take heart that as always happens after the coming months of short days and darkness, there will be light again, the days will get longer, and once again the sun will warm our faces.

Huge thanks to all of you who’ve contributed … I never cease to be inspired and in awe at the massive amount of talent we have in our wonderful ENO Breathe community.

A particular thanks to Andrea Grimshaw for sharing the most beautiful and poignant song she has written. I am still amazed it’s only her first composition, as when you all hear it, you’ll think she’s been writing and singing forever. I am delighted she’s happy for us to be adding it to our Twilight repertoire. Thank you Andrea!

Jo Herman, Content Curator and Editor, ENO Breathe Newsletter