Tuesday, August 16

essence of sad

Have you been so sick for so many years, that you lack the will to go on?
They say health is the most important thing, cheerfully they pronounce it, to inspire their gratefulness, 
to wash away their great unhappiness.
But you don't have health. 
You don't have well. 
They say friends too, they are better than career you know. 
Career, it went, but friends you have. 
You have friends you rarely see,
friends you hold on to, but always fob off. 
You love them from your couch, but it isnt enough.
You don't cook for them, ever, and you're always writing to say 
'less than an hour, but I love you ok'. 
I'd love you better if I could. 
My mind loves you. I swear. 
They say happiness inside, that's up there too. 
Peace for the ride.
And you have that one. But with essense of sad.
You want it unconditionally. 
In the sore, crawling, lonely, drought.
But it morphed into sad, behind your back, so now you feel bad. 
That you're sad. 
Sick bad, and then guilt bad. 
And lonely bad, and too-long bad,
And hermit, outcast, worthless, cold,
too-much, and can't-go-on bad. 
Till the sun pops out. 
It kisses you and hugs you and shouts:
It's a beautiful day to be alive.
You have alive! 
And alive is meant to be here,
and meant to be here is purpose,
and purpose is go on. 

Thursday, August 11

hi struggler, have you tried...?

It's been over 300 days now since I gave birth, or kind of gave permission to have my stomach cut open. I said, "I can't read all that stuff about dying or never walking again, so I consent but I'm not looking at what I'm consenting to," and signed a blotchy left handed signature, a Freudian smudge, thinking to myself, I probably will die of panic, or feel the surgery and then die, and I hate this idea and being an adult even though I simultaneously love that my body grew a baby, and I bet she's not even as sick as you think, I bet she's perfect, and I really hope we both live.  

And we both lived. We have lived strugglingly and lovingly ever after. 

I'm accustomed to struggles, as are most humans. There have been a couple of uncanny similarities between chronic illnesses and the more woeful parts of parenting, which sounds like a miserable thing to say, but it has happily made the whole experience almost familiar. 

I went to an opshop after not sleeping through the night for nine long months, and having chronic fatigue and another illness, and the man at the counter said perkily, "You look well rested!" I fumbled for a reply, but I was so absolutely unrested I could not think of one. Awkwardly I murmmed something about resting during the day. To which I'm sure he thought, see, these housewives just sleep all day, no wonder they're well rested. I have a feeling he either isn't parent, had a unicorn baby who slept in a cot and through the night before it walked {please may this happen to us, there's still time, please}, or snored through his offspring's night time howls for comfort. Or maybe he suspected it had been a while since I'd received a 'fresh as a daisy' type of comment, so he took it upon himself to deliver it. 

Whatever the case. Have you seen me lately?! Probably not, because I'm too tired to leave the house. But the dark moons under my eyes, they take pleasure in shocking me when I pass mirrors. If you looked up my Google searches which you must never ever do because you will think I am unfit to be an adult (I never wanted to be one anyway) you would find ,"how to make eye shadows go away?" written all different ways to get the best search results possible. They said: Get more sleep. I closed the tabs. They have no idea, they have not met my child. They said: Wear make up. That's not 'away'. That's hidden under paint, and I don't like that when I take paint off I feel more fugly. They said: Wear cucumber circles. I don't think we even have cucumber because I'm too sick to go to the shops and Ben doesn't buy them because they're not carby enough for me, and I don't lounge round in a bathrobe with slimy disks over my eyes because that's not keeping half an eye on my charge. I didn't find one single thing that would help, not one glimmer of hope. And then I started finding white hairs, aged twenty five almost twenty six.

Google, Google, on my phone: how come my hairs are already snow white?!?! 

Google said, genetics. I said, sleep deprivation too.
Anyway, I am not well rested. I used to feel unwell after sleeping from 9.30 pm till 8.30 am only waking to coldy inform my bedmate that he was snoring, but now I'm lucky to get till 12.30am in one stint. So, I feel tired-dead-tired-dead, as I expected to. Tired isn't a good enough word. Wasted. Or my favourite for this year: Haggard.

Humans have been trying to make other people's lives better since the first suffering. I have a serious case of it, though I'm trying to reform. It's a way of loving, it can also be a way of irritating. Early on, just after my diagnosis, people who had never had this illness used to say 'have you tried this expensive treatment and this almost extinct herb and this quack of a doctor and this unlikely and exorbitant retreat you can't afford because you're on the pension and this mental health book and this YouTube video, because I think it will cure you?' Every second day. I tried so many things I can't remember them; things which seemed affordable or scientific or whatever. Mostly I only tried the advice of actual sickies, because the other people had read something about my illness for one minute, and myself and my friends had been reading  for years. 

And then came along my baby, who doesn't sleep if she isn't touching me or Ben {slash using us as her mattress}, and 'doesn't sleep through' which is code for 'normal non-unicorn baby'. You know when you accidentally let slip that life is hard? Help arrives! So fast you're not even sure if you asked for it! Usually, a vast array of suggestions you've already dismissed. There was a flood of kindliness in the form of, "have you tried warming her bed up, or rocking like this, patting like so, going to a sleep clinic where you won't sleep for five nights and will consequently end up in hospital with vertigo again, or making her cry till she gags and then gives up because she knows you're never coming back?" And "Have you tried solids, solids, solids?" And "Oh, she doesn't like solids? Mine does. But, I love my food!" Ah. Well that solves the solids question. I only eat with gusto seven times a day.
All the comments were relevant to different kinds of mini human beings, but not the kind I have. And amidst all the kindly comments came this one,
"You guys are troopers. These sensitive koala babies are really hard work, and you're doing so good. You'll get through one night at a time. " 
No advice.
Even though she was the best poised to give it because she's mothered one just like mine. There were also people at church who made us dinners, and said, we struggle too, we have no advice, how can we help. 
As it is with the sick ones. They don't hand out advice, because they know that of course you've tried, and you will ask. Or that you have no choice but to endure, and you merely need a kind word.

They're strangely familiar, these fresh struggles. We have met before.
 An issue not easily resolved. Plodding on, sometimes hopefully and peacefully, and sometimes with bitter lead in my veins. There's always the poignant symptom I am well acquainted with: the struggle to feel untainted happiness for the ones who have what I don't.
It bears the hallmarks of my longing to be well, and my friend's longing for a partner, and my other friend's longing for a child.
This year it just hit. Deja vu. It's all the same, when you simmer away the specifics.
We're all the same.
We've all just weary and in need of a kind word. A really kind word.

Wednesday, June 29

if you want to understand me, voila.

Many thanks to fellow CFS sufferer Jessica for making an extremely accurate infographic of my life. 
Our lives. 
 And thanks to my fellow spoonie Lauren for sharing it with me.


It’s a chilly June morning. The cold lights a red swollen fire in my throat and keeps it burning all season long. “I’ve got a virus at the moment,” my sister warns when I ask her if she’d like to join me on a walk. “Oh no, me too,” I reply. I mean, I have a glandular fever flare like last week and the week before, because it’s permanently active. When I expend extra energy, resources my body usually uses to control the virus, things become a fiery hell. A day in bed. It sounds fairly innocuous. But then again, all things seem innocuous in small doses, and I have a full time job now. We made a decision earlier in the year that we would either move to a warmer climate or buy a winter-long supply of the only thing that helps. The thing is not at all cheap, and not at all vegan, but it helps contain the flare radically. We ship it on bulk from the US. It is made from a calf’s thymus gland, a protein that my immune system needs more of to fight infection.

But I digress from the cold morning. I hustle to eat breakfast, tidy up the lounge, have a shower, because I have to lie down at 8.30 am with the poppet. Aurelia sleeps radically better next to a human, and we made a decision to stop the cot fights and fails, and co sleep for now. I only resent needing to nap with her when I compare to the women whose babies sleep alone, in cots. Comparison is especially the thief of joy in parenting. I know some mums get ten entire minutes to sip a hot drink all by themselves because they share it on social media. I fantasize about cleaning the bathroom without my often groaning spectator. On the weekend I was whittling through the flesh in my lobes, trying to re-pierce my neglected holes because my morning slot is a mad rush to get up and get back to bed.

Neither Aurelia nor I believe that we need to go to sleep at 8.30 am. We lie down thinking this is quite unnecessary, and that of course we can both stay up all day. But in a few minutes she surrenders, and as I surrender to mothering her in this manner, a sleepiness I could have sworn I would not feel, creeps into my eyelids. Maybe this isn’t such an encumbrance after all. Maybe this is actually the perfect thing.
The irony does not escape me. I feel a lot worse on days where I busy myself in these sleep slots. My baby, whose sensitivity and high demands require more hands on mothering than I’d expected, her needs also force me to lie down twice a day. An unwanted, frequently bemoaned, and yet vitally restorative practice. I do not believe in random events, and I thank my Creator for the silver lining.

I sense that silver linings are woven into the universe, and with time {sometimes many years}, and a softness of heart, we glimpse them. Closer to home even than rainbows and stars in the dark.

I grieve winter’s effect on me, but when spring arrives and we drive through the country and buy our first jonquils for the season, I swear I am happier than most. I get a relief+joy cocktail appropriate to the degree I have suffered.

Having a sensitive daughter is similar. She asks for physical contact all day and all night, and when I recoil from the intensity, I remind myself to lean in rather than pull away from her needs. People everywhere try to procure smiles from her, as she holds her face with porcelain solemnity. They would like to hold her but she dissents loudly and clams up, apart from with one person she knows well. Later in the warmth of our lounge we are privy to the hugest smiles, most adoring eyes, scrumptious cuddles and giggles. That leaning in to meet her needs for security? It is rewarded with the most exclusive view of her true person. The smile she gives me when she wakes from her nap to see me lying next to her? It’s like the golden sun coming out, not even behind a cloud.  

I’ve written about my closeness with Ben, and the chance I’ve had to learn to sew, the unexpected light in the pain and isolation. I love that I must always be fit and healthy because of my diet and exercise regime. The friends I’ve made through computer screens are intuitive, sensitive, compassionate and suffering women who I will love for all my days. Being awake while operated on has been my worst fear for a long time, but even that way of birthing came with a strange glow of empowerment after surviving the ordeal. I didn’t realise till Aurelia was born that having a tiny baby, while complicating things immensely prenatally, also meant that she would be my tiny baby for a lot longer than usual, and it delights me.

But there was one sizable cloud that didn’t appear to have a silver lining. I have long wondered what the point of my education in music and ballet was, once my body brought it to a close. The hours and years of dedication seemed to be a snapped branch. Did it have a place in my life beyond a wistful memory?

Only years later do I see that without the richness the arts bring me daily, I would be even more prone to despair. Sustaining my mind in a long illness; this is an immense value. I don’t want to end my life so much when I have danced around the lounge to Tchaicovsky to Aurelia’s delight, when I have listened to a composer’s representation of all the emotions on the human spectrum and felt understood, seen myself in the characters I read of, been transported in these books to harder eras, and breathed in perspective. If education’s purpose is to enable us to live a rich, abundant life, then that richness is beneficial all the more when we move into a barren place. That richness is sustaining life. Susan Shaeffer Macauley shared in her book this quote: “Education is a matter of the spirit.”
I know this now.

I want to get up even though I hurt, and smell the ocean again, and create a garment, and read another poem, and hug my scrumptious baby, and eat more cake. I think that there is an iridescent lining attached to each crushing cloud.

“There are always flowers for those who want to see them.”

Henri Matisse

Sunday, May 15

let's all wear my shoes

I often wonder what the world would be like if everyone was like me. The first conclusion I come to is that there would be no ‘everyone’ because we would be too ill to work for food, and would have starved to death long ago. The unfit do not survive.

After I have finished with this sobering thought, I move on to wondering hypothetically what it would be like if society wasn’t designed for able bodied people, because that is where a significant chunk of my discomfort comes from. The energy packet and lifestyle of the majority is completely out of kilter with my own. Imagine if society was constructed for a different set of humans.

One of my parents, whom I love dearly, is celebrating a significant birthday this year. I was fully expecting the festivities to occur from twilight onwards. This is a lovely time for most to celebrate, after work, over the heartiest meal of the day, lingering on into the night. I had already decided that I was willing to suffer for this. Headaches, insomnia, vertigo, exhaustion, a few days of dysfunction. And then the invitation arrived, and it was for a 10am brunch. Joy erupted inside me. My first thought: oh my goodness, I don’t have to add extra pain to my already pain?! Of course there will be pay-back for the day event, but not to the degree there is for a night event, an event that begins when I have accumulated an overwhelming need to lie down in dark silence after being up for eleven hours already. People have every right to invite me to celebrations that work best for them, just as I have every right to decline and preserve the health I do have. But when they have considered me to a significant degree, that warms me right through to my fingertips. They care about me too. That is exactly when people like me would have their celebrations.

I have been very isolated these past seven months, because of that vicious post-baby vertigo. My sense of missing out has been strong. One morning I decided I could not endure another moment in my dull home with my moaning-myrtle infant, and I went to hang out with my friends from church as they do every Friday. For the first thirty minutes, it was so worth it. I was like yes, this is what I need. Two hours later, lying on my couch, vertigo, unable to care for child, I vowed off the experience. It had been a welcome distraction but the afternoon consequences were too great. I couldn’t afford to suffer that much. And if I had stayed for just half an hour, the part where my body was ok? Well, then I’ve only just arrived and barely settled in before I bluster out. I felt afterwards a stabbing envy that my friends were going home with their babes in tow, and probably getting lunch for themselves, probably even cooking dinner for their families, something I haven’t done in years. I couldn’t even feed a puree to my baby after going there.

The isolation hit me in the face. I crave companionship, but companionship doesn’t come in my size range. It comes long, frequent, and inoppurtune. I could come and go in a manner which works for me, but in my ideal world, I am not the odd one out, always sticking out like a sore thumb, always modifying because the default is not made for me. My utopia is a place where social interactions are designed for bodies like mine. A place where I am not perpetually the uncommitted no-show. Surviving with very little face-to-face friendship, or suffering for what I do partake in, this is one of the most awful parts of chronic fatigue syndrome.

How would people like me get their companionship?

We would meet in very small numbers, fortnightly, in an open air park. To remove the intensity of walls, confined spaces, fluourescent lights. We would meet for an hour, maximum, reclining if possible. We would never meet before 10, or after 4. Maybe we would come by taxi. By broomstick would be nice. We would shop at markets and naturally lit street shops, not malls. We would rest in coffee shops with day beds while we were out in winter, and on the grass in summer. Actually, no, it would always be spring. Maybe we’d all send a message to each other after we’d caught up, saying we were thinking of each other as we recover, reminding each other that the pain wouldn’t last, and it was worth it for our spirits.

The strain from not fitting would be gone, even if the rest wasn’t. The rhythms we formed would be custom made for our abilities, and it would be less lonely.

But, I wouldn’t wish this on my worst enemy.
Let alone the majority. 

Tuesday, April 12

not to be pitied

from here, via pinterest

"Sometimes I feel like we are the lucky ones."
We lie in bed before he slips off to spend the night tending to our offspring.
"I think that too."

He had just applied to drop back to part time work for six months. At first I was dark and brooding over it, the fact that ill health was robbing us of societal normality once again.
Us, not just me. That made it even worse.
It passed, like an angry cloud, when I saw the sparkle in his eye.

We have thought for years, there is a significant upside to living in the slow lane, keeping life a gentle pain-managing whisper. We have many an hour on our couch* becoming closer than we ever imagined, more united and delighted with our companionship, more than we could have if my body roared all day and into the night. It trickles down into the next generation too, time and ensuing fondness, which exists away from the hurry and scurry.

Sometimes the miserable path where you get stabbed and almost beheaded by an onslaught of low lying branches, has magical foliage not found on other paths. We get time and closeness.

Not a creative career, not as much money, not many pain-free days, but something so lush. '

* sans tv, is the key