The elephant in the room
The one I didn't even know was there
Sometimes little series form in my Substack without me even realising. And so it is becoming with the elephants. My previous piece ‘the elephant on my chest’ has become, by far, my most viewed, shared and commented on article since I started on Substack. I’ve taken it back out of paywall so it is currently viewable for all. This has led me onto writing about ‘the elephant in the room’ today, and also a forthcoming piece is brewing on ‘the elephant in my heart’. I look forward to sharing that with you soon.
In the meantime…
Silencing the whispers
I have written quite a bit about chronic illness, and my own broken body, both in my forthcoming book, Breaking Waves, and here on Substack - particularly in this piece: Who’s Body is is Anyway. I estimate that in the latter nine years of my ‘traditional’ working life, I probably had about a total of two years off sick. That realisation in itself makes me feel sick. As someone for whom the weight of conscientiousness hangs heavy, and who prides themselves on being the best that they can be, one of the worst things about it all was feeling that I was constantly letting people down. I’m sure so many of you (undeservedly)know that feeling intimately.
After one particular period of three months off, I remember having a two-hour meeting with the managers that worked for me, they were so happy to have me back. There was no ‘empire grabbing’, we were a true team with me always wanting to develop them, fighting their cause, helping them shine. I had so many people from all levels welcome me back in such a heartfelt way, I couldn’t have been happier to return. Sadly that two-hour meeting knocked me out for a further three months. The next time I went in to work was to say I was stepping down from that role. There couldn’t be a ship without a captain, and I was no longer physically fit to be the captain. I took a sabbatical, and subsequently left altogether. Another career path ended.
Chronic Illness 2, Emma 0.
Closing a chapter
The cycle of doubt, the self-doubt, the narrative of being a failure, a flake, a let-down is one that became seared into my consciousness. Knowing that despite those who knew what I was going through, there were also those whispering in corridors, saying…well actually I don’t know what. Knowing that despite being bloody good at my job, I was no longer ‘delivering’ because I just wasn’t there. The most heartbreaking thing was how much I loved my job – throughout all the times I was sick. Both as an air traffic controller, and as a senior female leader in a male dominated world. Flying the flag for women in business as I flew to Washington D.C. to meet with NASA, leading on commercial spaceflight, speaking with global audiences on cyber security, A.I. in aviation, flying taxis and things I’d never dreamed I would be doing. It was the most exciting chapter - but then life circumstances, trauma, depression and chronic illness crafted an ending to that story that I didn’t want to read.
Ultimately this has led to the chapter I’m currently in, and the one that I am enjoying more than any, being a writer and living in a different way, so all’s well that ends well? Well, yes…and no. Chronic illness has its own unpredictable narrative, and I’m never quite sure where it will take me next…
What’s this new feeling?
…although recently, something quite unexpected has unfolded…
I must admit I’m nervous about saying this, why wouldn’t I be, but the fact is that for the past five months or so, I’ve really been really pretty…well. Actually feeling well. I could go so far as to say feeling ‘normal’, whatever normal means? Consistently enough for me not to feel like I have any health problems at all - it’s disconcerting and bloody marvellous in equal measures. I feel like a spring flower emerging from the longest ever winter. Whilst it’s probably down to the immunosuppressant drugs I’m taking (which will no doubt have their own consequences), I’ve started to allow myself to remember how it is to feel good, and to enjoy that feeling!! To be knackered in a normal way, instead of debilitated. To feel pain in response to logical occurrences instead of just randomly.
It’s interesting how quickly this has become my ‘new’ normal. I almost can’t remember feeling any other way. Interestingly I spoke to two friends recently who had both had breast cancer surgery and treatments – and watching them speak to each other, they both realised how much they had ‘forgotten’ or blocked out about it, until they started talking about it. The brains’ extraordinary capacity to paper over traumatic periods – sometimes successfully, sometimes not so. Presenting a fresh new outlook, a wallpapered veneer of brightness and vitality, hoping a corner doesn’t start to peel.
Do you think you have a sick wife?
Last week I was washing up in the kitchen, not really even consciously mentioning how tired I was to my family, although I was feeling a bit dizzy. Ok, they said, time to stop.
‘Stop mum,’ Taz said, ‘go to bed.’ ‘Stop Em,’ said Himself. ‘Go and rest.’
‘I can’t, I have too much to do.’ ‘There’s always too much to do,’ they chimed, ‘but you know you need to rest.’ They both left for the day which meant I could carry on unobserved.
After school, Taz came in and I was still busying – ‘Mum, stop.’ She said. ‘PLEASE. Stop.’
I brushed her off, I was quite happy, listening to music, light of heart, happy in the moment. ‘And anyway, I feel fine!’
Himself went out to drop Taz somewhere, because I...er…had said I didn’t feel able to drive (shhh)… and when he came back and I was still pottering, he got quite cross with me. He never gets cross with me.
‘For God’s sake Em, STOP . Will you go and rest?’
‘I feel ok though.’
‘You keep saying you’re knackered…’
‘But I’ve been feeling well for a few months’
‘Em, you’ve been constantly knackered since you got back from India’.
Fiver came in and instantly sided with him, arms folded, looking at me sternly - that never happens!! What was going on?! Why was everyone cross with me?
Because it doesn’t just impact you.
Because we’ve seen this before.
'But I’m well right now! I’m doing really good!’ Subconsciously repeating it again and again, because if I say it often enough, then that will make it true, and perhaps I will be someone who is just well. Period.
He was not convinced.
I asked him – ‘so do you think of me as sick? Do you think you have sick wife?’
‘Yes.’
Wow.
‘For how long?’
‘Years’
‘What do you remember?’
‘Holding you when you couldn’t stand, you being in bed for days, you going through months of rehabilitation therapy, calling me in agony and crying down the phone…’
Oh.
Yes, I guess I remember that too.
And then he said; ‘I never know when you’re going to get sick again’.
When he married me I wasn’t sick. When did I go from someone who had an illness to being someone who my family think of as ‘sick’? I don’t ask my daughters the same question because I don’t want to hear their answer, nor present that concept of a ’sick mother’ to their still highly suggestible (and melodramatically teenage) minds.
It turns out there is an elephant in all of their rooms that I had not yet seen, and that elephant was my illness. That elephant was me.
As we spoke, that elephant became wholly apparent in my room – shimmering into view. Wow. Where was that creature a minute ago? Whilst I have somehow strangely swept away the bad bits of being ill from my memory, and put them in that dusty cupboard alongside birth trauma and the toddler years; it seems my own ability to forget did not translate to the erosion of their memories. My new shiny wallpaper hadn’t covered their rooms. They remained vigilant.
Reflections
It made me reflect, not for the first time, upon how things like chronic illness and mental health vulnerabilities don’t just affect the individual, they impact the entire family. Direct family, work colleagues, anyone who depends on you, anyone for whom you are an integral part of their daily lives. I felt this acutely when I was sick at work for one long period and one of my work colleagues got really angry. I couldn’t understand why someone was angry with me for being sick: ‘I knew this would happen, you took on too much, you got sick and I can’t do it without you’.
The irony is not lost on me.
I look back at my medical photo/video album – the place where I record the physical and mental ravages to share with my doctors. Whilst there is nothing saved in there since October 2023, evidence of five whole months of ostensible wellness, which is HUGE, I can see that over the previous years it has been real and it has been brutal. This is why they haven’t forgotten.
I write about this is Breaking Waves, reflecting on a sick period and a well period during which I was writing the same chapter:
Several months after starting this chapter (it goes like that), I am back in the library in North Wales, and I’m really pretty well, having been prescribed a different immunosuppressant drug. When I’m well I wonder if I have indeed made the whole thing up. My head starts to mess with me – I read what’s above and I don’t see how it can be true. I’m not ill at all. I have to ask my husband and friends to remind me of how it is when it’s bad. Seriously, why do I do this to myself, and why do I need to justify it either way? Can I not just revel in the wellness?
A Facebook memory comes up – it’s as if the universe knows how I question myself. One year ago today I posted about the ‘pernicious, insidious, unseen’ nature of chronic illness, about sobbing with a friend saying, ‘I can’t do this anymore’, crying at the pharmacy begging for help, friends bringing round food and my (then) 80 year old mother doing my laundry, cleaning and driving my kids around because I wasn’t able to. It is real, and it's ok to feel well again.
This morning I am definitely feeling the fatigue, it is niggling, other symptoms are nibbling at my edges, reminding me that they are there - lest I once more, forget. I have listened to this and taken myself down to the lake, to my sanctuary, and cleared all meetings from my day so I can come home, wrap up warm and write, and care for myself.
So I will take the wellness when it comes, I will celebrate it and hope it will remain, but I must also hold responsibility for my own wellness, and try not to be careless with it. I will remember that even if I let the elephant out of my room, she stays with those that live with me, and that is something, like elephants, that I must not forget.
I’d love to hear if this resonates with you,
Love & lemons 💕🍋
Em xx
Lovely, Emma and in my mind a metaphor for life...we take what we get, hopefully with a measure of grace tho being only human sometimes not, being mindful of how we effect our beloveds, and holding responsibility for our own selves.
xx
Great to hear you're feeling well Emma. This piece resonates a lot with my own journey with autoimmune disease. It's so tempting to push it in the windows of wellness and then crash all over again. I think I did this last year and have paid the price by being in hibernation for the last 3 months, all through the New Zealand summer. Learning to rest sufficiently BEFORE I hit the wall is an ongoing process of calibration....