a collective unravelling

written in march

I send love to my friends who have been practicing being housebound for five or ten years before this era, who had already capped meeting sizes, distanced and locked down. We would have been incredulous had we been told these measures would become not just widespread, but illegal to deviate from in our lifetime.
Due to a virus.
Albeit, not the infester that changed many of our histories, that insidious but rarely fatal, glandular fever. It all began with a virus for me and whilst I believe the fear being spread is too strong, I also know in my very cells that viruses can alter.

If we had been told this strange time was to come, I would have thought that it could have been almost heartening to be all in the same boat for a league. Me no longer an inch more distanced than others. A special pass handed to me to skip everything that was over exerting, and a pass given to everyone else just for good measure so that no one feels a pang of FOMO. Missing Out Together (MOT), will that be good?

In reality, no.

It's almost like I can feel a heaviness that wafts in the air, and settles on empty cafes, and seeps in and out of the nooks and crannies of every house which looks more lonely than it used to. It's a groan. It rings loudly in the silence, that everyone is missing a lot.

I overheard two conversations on my recent forays into fresh air, one was a man saying to another, 'I'm just waiting to get it...' and another was, 'masks'.

(I was cycling and my chain came off. With greasy hands I struggled to get it back on for my first time and a kind gentlemen noticed my plight and came to help. We were closer than 1.5 meters from each other. I said, 'I know we're not meant to be close, just tell me what to do from a distance', but he came in and risked my breath and then I couldnt wipe the smile on my face for a few minutes as I raced along afterwards.)

I would have thought before if it had been prophesied to me (and mercifully it wasn't), maybe everyone will handle their removal from their old lives with mental tranquility? Has my illness grief been a defect in my resilience and adaptability? But, I would have been wrong. I see humans ache, hardcore ache like I have never witnessed. It's a little inhuman not to work and rub shoulders with others often. Composer Brett Dean, isolated in hospital with covid wrote: "A number of correspondents have asked whether I can use the time to compose, however it hasn’t felt like a time of creativity in any way whatsoever. Like the rest of humanity at the moment, I see this as a period we must all get through, learn from and then put behind us."
Illness and isolation never will be cruisey, despite what cursory glances suggest. It isn't a holiday or escape. Daily sleeps for ten years have not been a pleasant task for me in the slightest; they are intruders to waking plans, not naps on a balmy island.

I doubt a many-year stint of isolation would lessen the ache, for anyone. It hasn't for me though I have carved a new way of living. Adjusting to things and aches going away are entirely different things and not to be confused. The missing-humans-and-human-flourishing ache lingers. Intrinsically programmed.

This unexpected release from outing hangovers and the novelty of being like everyone else is not as comforting as I would have thought. I savour some parts of it. Mostly I am struck by something new - that staggered suffering, whilst often bringing a sense of isolation, is very good. Waves dunk us at different times in our lives and we drink in gulps of joy at different times. We use ventilators one by one. It's better to have a few pulls in a jumper, than a whole row unravelled.
I can see it clearly now, of course it's better that not everyone is struggling at once with the same thing.

A couple of nights ago I loaded a recording from the MSO as I sat on the couch with Ben, a pleasant evening where our children had gone to sleep for a short spell, and we had banned ourselves from covidity conversations. I saw that one of the musicians was a classmate from school.

That school where I got the virus which left the package: Post Viral Fatigue for DC, at my door, and gently taped it closed.
I thought, as I watched the musos do what I was hoping to do: I was the snag, the pulled stitch. I have not liked being the snag, but mercifully the whole knit didn't unravel, just to keep me company. They kept on in their practice rooms and now they're bringing us unadulterated beauty.
When I later see others return from isolation to unlimited human interaction, and I don't go as far as them, and I don't go without hangovers, I think I will be able to be more wholeheartedly celebrate that many can flourish after tasting a collective unravelling.  

the end of drudgery

Often when I sat in the gym on the seated row machine, looking around the grey equipment, I had a curious experience. I felt like I was looking in on our society as one from another society or from a century ago. I saw us like rats on ferriswheels, encaged, in an artificial environment, human yet almost robotic. I felt bleak like I did when I read 1984.

I never thought of not going, though. Never. And I didn't hate it even though I often had a mini existential crisis there. I just did it and felt a little unhuman mentally. When dwelling in a body that stashes blood in the feet making them the hue of luscious berries, whilst the other organs are in a state of weak jealousy, you take rat wheels with gratefulness. Cardio helps my low blood pressure a lot, and instantly. It is like life to me, because blood is life.

Years ago on the exercise bike, I would try to inspire myself to push through the discomfort by reminding myself that this was so I could get well enough to have a baby. Now that this deepest dream has come to fruition twice, I chant that I want strong legs so I can dance. I have to have a reason to get my heart rate up to that unconfortable can't-talk level. I don't like to think about POTS much, though it is the reason I am there. It doesn't uplift me to dwell on the labels which describe the challenges in my body. Apart from grief days when I'm very unwell, and bad recoveries from 'normal' outings which sting me with their wrongness, I tend to manage my health and it's requirements without giving it much mental space now days. Just as I brush my hair and dress by humdrum habbit, so I take keep my diet, manage my supplements, and exercise.

So, exercise at the gym was a fine yet drab peice in my life. For ten years, almost without break. I can't even lie down unwell for a half a day without my blood pressure dropping in a very life affecting way due to lack of exercise.
Ballet, that's desert. My come-alive form of activity, although the muscle recoveries are a significant cost.

When Covid-19 sprang into my unsuspecting reality, I was not excited about outdoor rides. I didn't like that I couldn't get my heartrate up to precisely 170 bpm, for exactly a 2 minute interval, in a completely wind free environment, on the one not-squeaky exercise bike at the gym, looking out at the carpark watching people buy pizza and park their cars with more skill than me one hundred percent of the time.

I wanted that; that blandness.
I wanted it because it was normal.

My first ride was on Ben's bike. He is 6 foot, and I am not. I was precariously balanced on top of it, riding down roads at peak hour, and because the frame was such a stretch for me I soon had blisters on my hands. I was so unstable on it I couldn't even use my arm to indicate and my saddle was bruised for days.

Next I tried my baby sister's bike and it was just right. It was a wonderful size for me, but I was frustrated that the one gear wasn't hard enough to get my heart beating fast in the minimum amount of time that I could achieve at the gym. And I didn't like riding on the road.

Eventually I decided to try the rail trail which my house is located on, because I hadn't any fondness for wondering if cars would treat me with respect. After 2 years of living along the trail, I finally set off down it.

I got a whiff of fire smoke in the first minute, and it took me to childhood and early marriage holidays and golden autumns. I had never smelt anything at the gym other than sweat, my own and others, or men who had held the trigger too long on their aerosols, so I was pleased.

I rode past old people with frames and on scooters, and pondered their lives and their courage as they fill their days without physical prowess. I saw two ducks splashing away with glee in their muddy playdate. I involuntarily smiled. You don't smile at the gym. It's not cool. You will look like you're a real person, with real feelings.

As I rode on, to my amazement I found myself in the country. I live near the city centre where Ben rides to work, so I wasn't expecting rural properties so soon. Trees and green surrounded me, and dappled sunlight littered the path with excruciating loveliness. I smelt dung and it made my heart leap as I located the cows of it's making. I smelt sheep. I'm a kiwi who will never tire of the scent of sheep. I sniff my balls of wool with relish. I saw people tending their glorious horses. I saw alpacas, stubby ponies, and great danes. Rabbits were nibbling on the side of the path.
The air was crisp, and the sky was beginning to paint it's end of day pictures. I felt the time of day, the almost twilight, was too beautiful for me to inhale. By now I was puffing and sore and struggling, with no idea what my heart rate was. But I didn't care if it was 120 or 170 bpm, the stats didn't seem to matter.

Soon it came to deciding to purchase a bike instead of a gym membership. Now I set off with happy anticipation into the cold evening air when I'm feeling unwell, and arrive home in better health almost invariably. It still astounds me almost as freshly as the first time a decade ago, like it's some bizarre magic trick. Will I ever adjust to this back to front cure? And now, it's not drudgery.

To find this aliveness and happiess, through being forced to exercise for ten gruelling years, is so bright. To find it from another forced event: a pandemic.

It is like many other things that have happened to me, a books worth, of unexpected blessings. I have a yellow book with them all in and more to write.
Ben cosleeps with our babies because I need blocks of sleep and we wouldn't train them that their cries go unheard. This 'imposition' has given our little ones a deep love and trust of Ben that would not have been likely to occur if they'd spent only an hour with him after work each day.
And so, something else life enriching grows up out of this life we would not have signed up for.

Ben and I have no shortage of mutual interests, and we began our cloning early, but he has spent 12 years interested in biking without me sharing in it whatsoever. He is fairly stoked to be looking into baby seats and tail gaiters for family weekend rides.

Time, my friend!
I was told two years: two years and your illness should end.
And now it passes ten years.
I am somewhat healed. That's the terminology I use instead of still unwell. No blasts of recovery, no healing prayer success story, no tale of how I changed my thoughts and overpowered my body's reality, no miraculous diet or curative supplement or medication.

The plant in my garden that I thought was totally dead, not a hint of green, it was slowly working underground. Imperceptibly. And then it budded and I was astounded.
That's my journey, so slow, it's almost imperceptible even to me. But growth takes place in private darkness, hidden away, and I was made by One who views ten years as a minute.

Thinking in decades is strangely hope inducing!
What hopeless or bleak situation will be eliminated in another ten?
What aliveness will come from something still dormant...

still still

We all stopped for an illness

And in the stark stillness

Though short in term, and heath intact,

We struggled

Taste of those who live, sick and long, without the fullness

We will soon embrace, resume, 

And my pace, soon solo: looms

Cheer deeply the whir restarting after the collective crumble 

And ponder the time the world asked nothing of us...

divided: on being great and awful

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.

Mummy coming too?

A few weeks ago Aurelia was going out with Ben. She's been going out solo with him since she could first go without milk for a few seconds. He used to rush back and pass me a boobie obsessed waif, but the trips can be longer these days. It used to be her favourite thing to go with just him, but now she says, 

"Mummy coming too?" 

She asked it brightly, with hope that I would be joining them. 

"Mummy's staying home this time. Just Aurelia and Papa," I said. 

Resignedly she said,

"Mummy bit tired. Mummy need a little break." 

I felt sober as I agreed with her. How many times has she heard those words to be uttering them at just turned two? It must be hundreds of times. I was stunned by her comprehension, but hearing her disappointment in my body grazed me. My body has daily let me down and down, and it is not comfortable to know that it's going to disappoint her too. She was born oblivious, neither aware nor affected by my state, but each year she will discover a tiny bit more about how her mummy is tired, hurting, can't go, can't stay up late, can't entertain, can't work part time, can't exist as she expected she would. Aurelia encounters illness young, and she will watch it from the closest seats in the house. One day, it's likely she will glimpse me lying in bed unable to lift a fork and bowl because I went to one of her evening concerts, and will that hurt her more or less than me not attending? 

I'm like a rose which withers soon after it has opened. A saggy petal after my shower, and wilted by noon. I don't imagine it would very pleasant having a wilted mother. My mother is and was a beautiful and robust evergreen. I will have to figure out a different way. 

"Mummy bit tired," is certainly the sanitized version. I'm glad that she didn't say, "Mummy so wildly zausted she calling Papa frantically to come home from work, cause Mummy can't form nother word in eternal strength-sucking story she reading me, and can't cope with nother of my tantrums where I lie on the floor and scream, they must really push Mummy over the edge cause she buyed ear plugs so that she is less zausted by my commotions. Mummy and Papa lucky to get me in bed before 9 o'clock anymore cause Mummy holding onto to my long day sleeps like a woman obsessed. She must be very tired lady."   

I mean, we haven't told her all the gory details. 

I was watching the heart wrenching documentary about CFS, called Unrest. I've waited and donated for it's release since 2012. Interviewed in the piece is a mother who said she missed the events that no parent misses: sports events, dance concerts, school ceremonies, and parties. The big ones, where every mum and dad shows up with all the other exuberantly proud parents. But she said something important: CFS mums may miss the documented events (or suffer disproportionately afterwards), but they are more present than most parents. They can't fly out the door leaving a whiff of perfume as they drive off to work, and socialise, and volunteer. They are allergic to perfume. Current thought says that children need to see their mothers taking on the world, but I'm not convinced.  

Unwell parents will be there when their child leaves for school, and when they get home, and years after the toddler doesn't need them every minute. They will be there for listening and talking and reading and being, the being that occurs behind closed doors or in peaceful nature. They are not too busy. 

The pace of life in our family isn't exciting. I want to take her to Christmas Carols this year because the last two years I was not well enough from her waking in the night. It stung, the FOMO that arose from hearing of people blithely attending my favourite event and probably not being incapacitated afterwards. I also wanted to get through Christmas Day without a bad hangover, and that didn't eventuate either, despite avoiding a month of preliminary fun. My body objects to the flutterings of December that I have loved so much since childhood, and the missing out pains haven't completely resolved. But I spent some of the happiest mornings of my life that December, dancing her around the lounge to Rend Collective carols every morning, smelling the pine needles and her pink onesie, and showing her Christmas lights and mice on the tree. In our home tucked away from eyes and hype, we lived quite wonderfully that month. 

It is to my detriment that I forget that the unseen and undocumented lounge room living is as important and impacting as all the rest. Not as glossy, no, but full of heart. My body is a bit tired and I need a little break, but my heart has as much vigour as it did before I wilted. Hearts can be green when bodies are withered, and love is not bound by the vessel it dwells within. Love can be exhaled in a quiet moment from a weak person on a couch.

what evil befell me in the night?

On Tuesdays I have a slight problem. I have a problem that I don't want to talk about much, because I know full well that I am to blame. And if I talk about it, well, then my counselling listener may say: "How about you either stop bringing this upon your self, or don't complain? Don't hurt yourself and then moan that you're hurt."

And I fully agree, and fully disagree. 

I wake up in the morning on Tuesdays and hello dark world, something is wrong. What evil befell me in the night? Yesterday I was living on land, and today I have been dragged beneath the deep waters and not been turned into a mermaid. A metal corset has been screwed around my waist, and hanging from it are two rusty chains with concrete weights attached to them. I have to wade for hours, and the waters feel thick, slow, and the weights are heavy.

My cells are not the same as a healthy humans, alas. Though, alas is not a sad enough word. Alas seems to shrug, too nonchalantly.  

My cells cannot heal micro tears in my muscles whilst generating the energy I need, all at the same time. That would be asking too much, that would be asking for the pleasantness of normality and we must not forget that All Normality Must Have Very Unpleasant Side Effects. If it didn't, would I really have CFS?

I ate a delightful slice of normality on Monday night. I've been starved of normality ever since I was eighteen and it became a status not to be attained any longer.

 I dance with radical happiness on Monday, ecstatic to be moving and strong enough to move. I don't feel my illness once I have begun the class. I am in a room of women who are intoxicated by ballet's precision and elegance, who are sensitive and who laugh freely. I laugh too freely, to the bright-red and sometimes way-longer-than-anyone-else stage, to the dorky stage, to the 'faithful bladder, must we flirt with disgrace' stage. I am not Danielle-The-Ill there, I am Danielle. I dance with all of me, I laugh, I talk, I forget pain and loneliness and difference, and I feel as myself as I can feel. Without a moments hesitation, this is the most pure spark of joy in my life. It's an antidepressant bordering on euphoric drug - but I of all people should know that antidepressants are not side effect free. My last one caused my mind to conjure up such abusive sweat-drenched dreams that I had to farewell those little pills of yin and yang, stability and torment. 

My cells stop giving me life while they work on my broken ballet muscles, leaving me feeling sub-human, a human body in appearance but chained in painful slowmo land.

Oh I need to get a nappy for very-busy always-talking toddler? OK, sure. Let me wade against this heavy water, or is it oil, it must be denser than water? I'll try to shift with these weights dragging me low. Oh, now I need to empty my own bladder. I think that can wait a dozen minutes or hours. I can't fight the seas and these chains. I am just too drowned to do much more than survive. I read "heave ho, up we go," Aurelia's book about a bus that has gotten stuck in a hole. She dictates that I read this book two hundred times a week, and it is not lost on me that I share a lot in common with this pit prone bus. On Tuesdays it's hard to say "heave ho, up we go," let alone "heave ho" myself around.  A tractor gets it out of the hole. My tractor is Wednesday's arrival. 

The side effect of one hour of dancing and half an hour of talking with people I love...is, well, a kind of internal physical abuse that lasts twelve hours. Do the maths and it seems that perhaps the side effects aren't worth the pill. 

But here is the thing: I am so wretchedly tired of side effect mathematics. And even more tired of side effects themselves. And even more tired of avoiding side effects, which is code for: not living very fully. 

I have been reading a book on raising children and the author puts forward that parents and educators should equip children with a rich interest in many good things - in literature, art, food, movement, music, nature, truth. Things that will later help that person live fully, not miserably and messily and depressively. (Not that mental sickness can be whisked away with a dose of nature, if only, but it will always enhance a life.) Seeing the beauty in life, given to us as therapy, is essential when work and challenges rise high.

Humans weren't meant to live between four walls, their only contact with the outside world being a screen. Illness often forces one into a little four walled prison, with not much abundance of life. 

I choose to live fully on Monday night and suffer fully on Tuesday, and the maths of pleasure to pain doesn't work out, and I could avoid that pain if I didn't go, and I should not groan that I hurt horribly when I brought it on and even paid money to bring it on...

But, I am a human being and I need to dance or else I might morph into a grey-minded robot who stays at home to avoid micro tears and macro consequences, and whose heart forgets what liveliness is, embittered by caution and restraint and post exertional malaise. Embittered. Physically struggling, but not putting up a struggle against despair. 

In the end, I can risk torture Tuesdays, but not a listless life.