Phone calls to my friends of late have been them cajoling their toddlers to let Mummy talk for a minute, interjected with feeble enquiries as to how each of us are going and just as we reach the end of a fragmented sentence mostly filled with vacant 'ums', the frittered thought is interrupted by my baby bellowing down the receiver because of course, he is attached to my very person. We will hang up after our chaotic interchange, and I will quickly change a nappy, sard a onesie, dress a doll, sweep a mess, breastfeed a baby, navigate a tantrum (try to), burn my eggs and take a sip of my lukewarm tea with one hand. Quickly quickly, because I need to wear baby bear for his next nap. Then we will do that for another eight hours, eight weeks, eight months until our fantasies have simmered down from a holiday in a warm location to: just one hour to concentrate on just one thing. That is what I dream of. To do something in an undivided manner, with mindfulness, to indulge in a pause from two minute staccato tasks. This season is like scrolling through a social media feed, 5 seconds on one person, scroll on, and on and on and on until you your very being has been fragmented like unruly confetti.
But it's not just physical dividedness that grates us, it's emotional complexity.
In our peicey conversations, my friends and I try to convey complex thoughts which do not fit into one minute, especially one minute punctuated by squawking small people. We would actually like to feel one simple emotion at a time, and it would be far easier to convey too. "I'm doing good, how are you?" Imagine feeling good about all areas of your life. Purely good in all ways. How pleasant it would be to feel pure euphoria, pure happiness, pure contentment, pure health, pure goodwill. So much better than the usual 'fine with a dash of sad and splash of disappointed and a smidge of frustrated'. It would be simple on a personal level, and simple relationally. We could understand a person without having to invest large amounts of time if they weren't so multifaceted. But we live in a world, as I recently read, which is constantly fraying at the edges. Occasionally life may seem like a freshly trimmed piece of fabric, but in a few minutes the ends will be wiggling and fraying and perfection which seemed almost within your grasp, evaporates.
There is no perfect on planet earth. This is a place of dust and dirt when you just vacuumed two days ago. Especially if you have two shaggy pets as we do, one of which is our morrocan rug.
Myalgic Encephalomyelitis or the poorly named Chronic Fatigue Syndrome has done a fine job of inserting not dashes, but drenchings of imperfection in theoretically good times. I would say that is the super power of this illness: making every moment a complex experience. Though to be fair, the common cold achieves this too. The premise of ME is that your body will, on a deep cellular level, suffer for doing things in proportion to the energy expenditure of the thing you did. Post Exertional Malaise (PEM), the defining characteristic of this disease. Not just tired after things, actually dysfunctional.
In my worst times, taking a shower has been over-exertion, and the malaise lasted a day, so I am astounded and thankful to God that my womb grew two human beings, which is far more exertion than standing under hot water. During their gestations I was faint like a whisper and woefully wiped. Almost lifeless, whilst giving life. But when I met my son after 9 months, in all his wide-eyed chubby aliveness, my heart overflowed with relief and amazement that my grey, black and blue time was worth it. Our son's names mean Bright, and Lucky. Our daughter's mean Golden. After the night, we wanted their names to be like a sparkling new morning.
With Ben significantly sharing the load and grandparental support, here we are traversing again 'the baby year'. Extreme exertion, much malaise. This is a year of ill health, few outings, and not much at all left over. This is a year of much delight. I'm overjoyed and pummeled, fulfilled and struggling, never wanting this to end and longing for it, happy and broken.
It's terribly confusing to be so polarised. I am not a quick conversation. As my friends know, I do not write brief messages. I am words for days.
ME sufferers are notoriously missing. My good shoes are lying in my closet, in a condition too neat for how many years I've had them. This saving has not offset the pill spendings. Going beyond our allotted energy packet is a risky business, and it is rare we escape from punishment for 'over' exertion. Over the last decade I have nervously and hopefully, gone to events that I knew were beyond my payment-free zone. Nervous, because that's the emotion one has before something difficult befalls them. For a time, I may be thrilled and beaming to be out doing something I deemed worthwhile: in a car, in a cafe, in a concert, in a church, in a home, in a mall. Connecting, investing, living, enjoying, bombing through energy.
I vow to keep my thoughts about the event and the aftermath totally separate, so that the aftermath bleeding doesn't seep into the event and stain it.
Now I am lying in bed with vertigo and walking to the toilet hunched in half so that I don't pass out. As I lie through my 'hangover' hours in the dark, strength all stripped away, thoughts of what occurred are muddied; dark seeps into what was light. It was worth it? It was the right thing, by myself and my family? This body flagellation feels wrong...this inability to parent, to care for myself, this use of Ben's sick leave? I wobble in my ability to keep the aftermath separate. It was not thrilling, it was tainted. It was mixed, and murky.
So possibly not wise. So sad.
I long for: 'it was great, had no payback.' A single experience.
No payback. No murkiness. No fumbled replies about how it was.
No, "It was great, and awful."
Great and awful don't go well together. But they are always hanging out.
I admire the women who are taking to the world of clipped one liners, social media, and writing mini essays with the intention of being real. Because sunny pictures with sunny captions give the impression of: unpolarised realities. Two paragraphs of real talk still doesn't quite capture it all though. I can't summarise my life lived with ME in two paragraphs, nor do I want to. I find it complex to articulate, and raw for me to casually bear to a casual hundred-and-something persons who may read for 10 seconds before they return to their own fragmented reality. Perhaps then, I shouldn't share my happy moments there, so that I am truly authentic. Perhaps scrollers are aware this isn't the full reality, that lives are deep and wide beneath the surface, or maybe they ponder if they're the only one with dust everywhere.
Being seen and known is such a profound longing; a soul longing. To matter when we are thriving, yes, but even more so on our least sunny, most humdrum, feeling awful, achievement-free, shoes-in-closet, no camera days. To be known fully, weaknesses hanging out all over the place, and loved anyway. I taste this with Ben and it is one of the best tastes in the world.
My health is thorny, but I'm not the only one who is great and awful. Humanity is dreaming of the day when great and awful are paired no more, and the sunny needs no two or ten paragraph disclaimer because, it. is.all.
