post captivity complications

I don't want to say that I'm an efflorescent butterfly because then people seem to say things like 'I'm so glad you're better forever', and 'Now do every thing because you're a butterfly'. And then they get shocks like,
'But you said you were a butterfly, yet you seem to be in a cocoon, I'm so confused, did you mean moth?'

Life is in, out, up, down, waxing, waning. Serious waning for all us crescent moons. But we wax too, and I am increasingly convinced that we must not only converse about our woes if we want to accurately share our lives. There is a time to bawl and a time to squeal.

Some days, I'm a butterfly. After being a guttingly grovvely caterpillar for two years, it's surreal. I'm a butterfly, in the way that a clip-winged butterfly can be, if I'm calm and gentle, ever so calm, ever so unstimulated.

I don't quite know how to feel about not waiting by the window in a crumpled mess for Ben. For getting his message "The case has gone over I'm sorry, I'll be a little bit late," and thinking, well that's ok, I'm still able to stand, I'll chop the beans. I don't chop food, so it's a bit weird. I did the dishes, cared for my child, strolled for an hour, and chopped beans? Then I sat up (versus slumped on the couch) to eat dinner, in our sun drenched dining room.

It's a bit too glorious to feel that okay.

The trouble with butterfly days is this: I know it won't last and minute shards of sadness zoom around because I want to feel like this forever, because the relief is too excruciatingly nice, and the contrast seems all the more glaringly piercing.

I'm a living oxymoron when I'm euphorically pain-free, because my heart physically aches.

Is it actually good for a bird from captivity to fly in the expansive sky and then be returned to its cage? I lean towards, yes, its better than captivity it's whole life. But oh, going back in the cage.

I didn't know if other human beings also feel what I'm inadequately describing, for it doesn't come up in conversation.

But I found the answer to my question in a book I recently read:

Perfection is beyond the reach of humankind, beyond the reach of magic. In every shining moment of happiness is that drop of poison: the knowledge that pain will come again.

Dumbledore, J.K.Rowling


I had an epiphany reading that: I am seeking perfection once again, this time in emotions. Perfection is truly unattainable and mixed emotions are not my solo struggle but a universal reality. I always feel that the earth embodies these realities, and weeds springing up by daphne and jonquils and jasmine is proof.

The weeks that followed this passage were ones where I mulled and ruminated, granting myself permission to feel relief with a sprinkle of grief for the past and future. I felt a lot more peaceful once self recriminations for heart shards were removed. I thought, perhaps every joy is tainted because of the fallen world? It struck me as a fairly miserable thought, that every happy moment had to be part sad. I needed more reliefs and elations to test the theory on.

Out of the hopeless blue, one arrived. Our impling slept for nine hours in a row. No letters to warn me of her plans, no gradated steps. In this matter of sleep, I had finally annihilated my expectations, because it was the only way to be content. I had decided that the poison of expectation was not doing me any good, and I'd slowly picked it all out.

We had goofy shocked faces that morning. 'How could this happen to us?'

She might do it again in another six months I thought with ineffable happiness, high expectation me having done a solid 180.

Two nights later she did it again.

Deep sleep deprivation and ensuing pain will come again, but my joy was weedless, and curiously I don't have a sore spot under my left rib thinking about it. {When I say weedless joy, I refer to the following day. The actual night I lay on my bed worrying she had suffocated and died, and I strained to hear a cry, please, I just needed to hear a cry.}

Maybe heart shards during relief are a peculiar experience reserved for the heavy grief of eight years of mostly unrelenting illness?

Perhaps many joys will be less tainted by sadness, with a quarter drop of poison versus a dollop, with just a lightly held mental recognition of the transient nature of elation.

I cannot curse transient elation, for the same principal promises transient pain.

Nothing lasts forever.

Except eternity, and I have a feeling I will never tire of an earth free from poison.

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

i want to be the mother

Motherhood is taking the most vulnerable little person under you wing, and keeping it safe and fed until it’s ready to venture forth. It’s giving and giving and giving, when you long to be admitted into the hospital and nursed yourself. For someone who has struggled for many years just to shower and feed herself, it’s outrageous to turn around and give my sparse feathers up to a scrap of babe. I’m shivering, wanting to be wrapped up, but giving that blanket away. I sometimes groan, ‘I want to be the baby’. I get occasional bouts of jealousy. My friend has abbreviated it to IWBB, for ease of use in messaging {also known as mother’s group for the sick}. Who wouldn’t want to be fed, hugged, bathed, carried and gently popped to bed on repeat? That’s all any sickie ever wanted.

Apart from getting better.

But really, actually, not very deep down, I want to be the mother. IWBM. It’s painful yes, but strangely cathartic. I am the carer, for once. I get to love on her the way I want to be loved when I am a vulnerable inhabitant of a painful body. When I fold my arms tightly around her, I am stronger than my illness because my heart is acting. My heart is what motivates my aching arms to respond to her cries for me, and bundle her up. I like that there is more to me than pain and disability. There is fierce love. Sometimes the two wrestle it out, and the pain punches my heart and tells it that it is stronger and I can’t give anymore. I can’t give with vertigo, I can’t give with fatigue. But it underestimates the heart. I haven’t had to grapple with parenting books and styles. It’s instinctual, and it has been shaped by what I have learned through my walls being broken down and becoming weak.

It’s gentle. There is enough life ahead of her brimming with disappointment, raised levels of stress, tears. I will nurture her like she will only be an innocent baby once. Ben and I mock parenting labels, but then go ahead and name our style ‘low cortisol parenting’. Or shall we paraphrase it with this sleek version: ‘Actively minimising adrenal stress in infants because life gets hard fast parenting.'

As she grows she will learn that her mama hurts, that every family is a bit different, that her well papa struggles, that not every smiling face is feeling fine. She will find that life is messy, imperfect, uncontrollable, and at times downright miserable. But the answer to the sadness is love coming vertically from above, and horizontally from us. And it’s tender. It lessens pain; it keeps me soft instead of bitter. It lets me give when I’m hurting. It’s the reason that I want to be the mother. 

muttering in public

Today I was sitting in the car with Wolfgang my pup, our windows all the way down to prevent us from melting. I saw a six foot man with a protruding tummy coming down the street. He was wearing a polo shirt tucked thoroughly into faded navy track pants. The trackpants were pulled almost up to his chest, with the cords hanging out. I could see that he was talking to himself, and as he passed my window I caught what he was saying.

“My disability.”

Then there was silence. A few seconds later,

“My disability.”

Silence.

I just sat there feeling stunned and sad. I wished he had been singing to himself, or muttering about the beautiful weather – but he was pondering his and society’s perception of himself. I wanted to go and tell him that he was great just as he was, that he didn’t need to sweat it. I wished he didn’t even know he had a disability, that he could accept himself without a label.

I found it hard to forget him, hard to see him so internally disturbed by this view of himself. Then it was dawned on me that I was just like him. In my head, a hundred times a day I mutter,

“My disability.”

I say it when I wake up and face the day at home, and when I get weak cleaning the bathroom, when someone asks me what I do, and when I send another message saying ‘no’ or ‘less’.

I’m painfully acutely aware that I am abnormal, and that people aren’t into abnormal. I absolutely dread that moment of discovery in conversation: that I am disabled.

I wished most for the man not that he was able bodied {I do wish that too}, but that he could walk down the street unconcerned by difference or disability. I just wanted him to embrace being him without all the fear. I wish that for myself. I see all the ‘can'ts’ and ‘no longers’ and ‘abnormals’ and the thought that my life is less valuable than another’s is like a load of lead. Just imagine if the whole motley bunch of us mostly ailed humans stopped adding the requirement of seeming ‘normal’ and simulating ‘ideal’ to our diverse issues.

I think if I lived within the boundaries which allow me to function somewhat pain free, and let go of all the “Help, I don’t have a career!  Help, I’m a social failure!  Help, people must judge me because I can’t do things!” I’d stand a chance at less misery, more joy, more living. I want to live the life that I lead at peace with the path I am on. Enough with the muttering, more of the appreciating, loving, giving and receiving grace.   

words for wednesday {page 16, laughter club}

" For peace of mind, resign as general manager of the universe." 

Larry Eisenberg

"Nature does not hurry, yet everything is accomplished."

Lao Tzu

"Always laugh when you can. It is cheap medicine."

Lord Byron

Yesterday I went to the nursery and came home with baby Daphne, who smells like lemony spring and looks like my wedding bouquet. I keep sneaking out the front door to bend down and take in her fragrance (i.e. nearly every hour). I think Lao Tzu articulated one of the most restorative things about creation - it's never rushing or stressing or worrying. 

This Saturday, I am hoping to try the most wacky bizarre unconventional thing I've ever done.

I thought going back to ballet as an adult was courageous. This time I'm going to go along to laughter club.  I have no idea whether I will find it mad and crazy as I am inclined to think, or refreshing and freeing. I feel as though I am a crazy lady for even deciding to try it. I asked my other half if he would join me after he was quite positive about my decision to trial it, but he wasn't so keen for himself and cited concerns about co-workers seeing him there and having to explain himself {the 'laughers' meet at the Waterfront}. He doesn't want to be associated with 'hippy healthy nutters', which is quite understandable. My main concern is that I will laugh uncontrollably in the sections where we supposed to be quiet. I have this difficulty, bordering on disorder, where I lose the plot in serious situations, and struggle to stop laughing at a socially appropriate times. I might share my laughter experience next week.

Have you heard of Norman Cousins? 

He was diagnosed in 1964 with a connective tissue disease and given a very slim chance of recovery. After getting progressively worse in hospital under conventional medicine, he became active in his health and decided to put himself on a course of vitamins, and.....laughter. He knew that stress could cause harm to the body and wanted to see if positive emotions could help with healing. He tested his sedimentation rate before and after laughter (achieved by watching the Marx Brothers) - and found that afterwards it would drop, and he would be pain-free for two hours of sleep. After recovering, he went on to study the effects of humour on the body.

Thankyou cfsjourney for the Eisenberg quote.

thirteen things i do to stay okay

Facebook is not a good place to linger. It’s nice to share in people’s joys as they display their highlights reel, but the second thought after joy for them is, ‘but what about me?! Why have I not been in a photo shoot, graduated, got pregnant, made something original, been to europe or thought of something funny to say?” This addiction ends in greater sadness at my own lot. 

Sunshine is an antidepressant

Crying is an anti depressant

Tea is an anti depressant

Antidepressants (the official kind) can be wonderful and terrible, but it is not embarrassing to be on them. Nor is it embarrassing to sit in the office of a psychiatrist and fight back tears while you tell him that you are scared of holding cups in case you drop them. The mind is complex, and it’s ok for it to get sick, just like your body.

If you find a nice medic, don’t move away or let them retire. If you find a nasty one, cry a bit and get the courage to disengage them.

You can be happy even when your health gives way and your dreams are put aside. You can’t be happy if you hold onto the way you thought things would go. You actually have to surrender, maybe multiple times a day if you’re like me.

Do whatever you need to do to make life manageable. Dare to be unlike those around you and dare to be unashamed. 

Young marriage may seem like a horrifying idea to the majority, but the joy I get from knowing that we are stable when the rest of my life isn’t is indescribable. For me there was nothing more beautiful than the guy I love wanting to commit himself to me, despite my lack of health, career or certain future. I am slightly scarred from all the comments about how we’re still babies, but I’m getting over them.

On that note, lots of people will say/do lots of unkind things to you in your life. Or stupid insensitive things. The longer you are alive and the more comments you hear, the stronger and more bullet proof you become. Crying, again, is reccomended for a short spell. {ps. one benefit of an unpopular blog is lack of mean comments.}

  

Being at home all day long makes you want a baby desperately, despite physical limitations. Try to be uncommonly rational in this situation (picture babies crying at 2 am) and get a dog or cat if you are struggling.

Things can be true even if you do not understand them. I think my life is valuable even though i stay in the lounge on the couch most of the time. I think I could get better, despite not knowing how.

Every single day, God gives new mercies. Don’t worry if you are empty the night before, because they don’t come till morning. 

words for wednesday {page 12, nice people}

My friend finds the best words and gives them to me as presents. She found the ones you read today.

“Fame is a vapour

Popularity an accident

Riches take wings

Only one thing endures, and that is Character.”

Horace Greeley

And then, I think what my friend wrote after this is even better. “It doesn’t matter if you spend 8 hours a day at a job you hate or all day in your home. It matters who you were in that 8 hours."

I just have me left - I don't have the qualifications or income or social life I had envisaged. Sometimes I feel scared even to talk to my hairdresser in case she asks what I've been doing that day. I fear someone will come to the door while I am asleep at midday. I feel that I need to justify my very existence by proof of things achieved. It's the darkest cage, the thought that I am a waste if I don't do the usual things, have the conventional life. But when I think that it's how I live my moments, I feel like I am alive; that my days matter, that my existence is valid.

  

"Kind words can be short and easy to speak, but their echoes are truly endless."

Mother Theresa

Disillusionment with medics had settled thick inside me, and last week I had to attend another appointment with a nurse to be put on a ‘care plan’. I wasn’t looking forward to it – I could predict the unhelpful comments and anticipate the deep sense of misunderstanding I so often stumble away with. 

‘You only weigh such and such, are you sure you don’t have anorexia rather than CFS?’

 ‘You don’t eat sugar, dairy or wheat; I’m concerned it’s not a balanced enough diet.’

‘Your tests are all spot on perfect, so things are obviously going well.’

But this nurse, she had me bouncing out of the clinic, ecstatic. I actually had an adrenalin rush from happiness, and managed to go to a few shops afterwards before it wore off. Not only did she empathise about my illness, she spoke with sadness about all the misunderstanding that invisible and longterm illness sufferers get. Centrelink, dreams lost, and patience were just some of the things we talked about. She knew I was petite, she knew my diet was healthy, she knew I was sick. We laughed and talked for almost an hour and every word she said was balm to me. It was like having a warm bubble bath after many ice ones.

I went away and thought that if every single person was as kind as she was, we would have a very happy world. I naively wonder why more people can’t be like that? She is doing one of the greatest jobs on earth.

words for wednesday {page 8, silver lining}

 

“Man is fond of counting his troubles, but he does not count his joys. If he counted them up as he ought, he would see that every lot has enough happiness provided for it.”

Fyodor Dostoevsky

Yesterday was one of those bliss days, the rare ones where you are singing inside because you are overwhelmed with the good, all the good which is as clear daylight. Not only was I well enough to do the dishes and other chores, I was well enough to play my flute. My two month music drought ended, and I felt wildly happy not only to be able to play, but to be able to feel all the raw highs and lows that music expresses. I danced, and played, and enjoyed my yellow teacup, and walking through puddles in gumboots, and my dog and man’s cuddles. I even saw three elegant dolphins at the waterfront, which tells you what kind of a day it was. And I won’t have this euphoria every day, but it told me that there is so much good I have been overlooking. As my friend{who always says the best things} wrote me,

“So the silver lining is quite thick.”

 It always is quite thick, when I choose to have a look.

If you want some ecstatic music, try Tchaikovsky’s Hungarian Dance, the happiness begins part way through, but isn’t it so much better after some melancholy?

words for wednesday {page 7, home}

Pinterest

“Joy is what happens to us when we allow ourselves to recognise how good things really are.”

Marianne Williamson

If you were to ask me how I was, I would probably sigh.

I am relieved.

I have endured a month of too many appointments, and weariness from being a vulnerable patient too many times. I have been ill from hour long waits at doctor surgeries, saddened by coolness and misunderstanding in medics, and exhausted from leaving my safe little home, the one place I have a chance of surviving in. The ironic truth is that I am ill from seeing my medics. I am always learning how better to manage my life, and going to these doctors just after I moved house was not my wisest plan. Sadness has been all pervasive - the greyness that robs every usually-fun moment of its fun.

My great relief comes not just from getting to stay home, but from feeling little bits of joy again, of happiness, or pleasure, or humour, where before it was entirely bleak. I am enjoying relief, savouring it, and remembering for future that it always comes.

“There is nothing like staying at home for real comfort.”

Jane Austen

Although I would rather enjoy my home in moderation i.e. on the weekend and in the evening, I think Austen is perfectly right. My home is a beautiful, comfy, cosy, restful, safe haven. To view it like that rather than my prison changes everything.

Flannelette jamies have been really doing it for me lately. Who knew $11 spent at kmart could make for such snuggy appreciation.

“Change your thoughts and you change your world.” 

Normal Peale 

“Although the world is full of suffering, it is also full of the overcoming of it.”

Helen Keller