I made a conscious decision a number of weeks ago, when my anxiety and panic disorder was first officially diagnosed, that I was going to be open and non-secretive about my condition.
I don't mean, by this, that I go around with a big sign on my chest saying "Hi! I'm Kathy McOddBrain!" I do mean that when colleagues, friends and family ask me how I am - I tell them. When they ask about the illnesses that have led to me moving to part-time at work, or withdrawing from many activities, or losing weight or looking strained - I tell them. I tell them about the post-viral fatigue / CFS, yes, but I also tell them about the chronic insomnia, the panic attacks, and the anxiety. I tell them it's been hard, and is being hard. I tell them I am struggling.
I made this decision knowing that it might cause some people to withdraw from me, and that it constitutes a breach of the fourth wall in the professional sphere, where there is often an expectation that people's ... peopleness ... gets left at the door. I made this decision knowing that there is a stigma around mental illness, that I was inviting into the way others judge me. I made this decision knowing that I was choosing to make myself vulnerable, to let people see the scale and scope of my journey with this thing. Losing love may be like a window in the heart, where everybody sees you're blown apart, and everybody feels the wind blow (to paraphrase Paul Simon) - but so is mental illness, when you choose to share it.
And here is the thing. This has been risky, yes, but it has also been absolutely the right thing for me, in my circumstances, and with my personality. Not speaking is toxic for me. Holding things inside is dangerous. Pretending I am OK when I am not is stressful. I am a person who is open to the world and open to other people - I always have been - and to close down when in pain would be alien to me, would hurt me more.
I have been amazed, humbled, uplifted by the response I have had from choosing to walk this path in the sunlight rather than in shadow. The care, the concern, the practical love, of so many friends and colleagues has been overwhelming. When I need to cry (which is often), I have always found someone there to hand me a tissue or hold me gently. When I battle panic, I have been lifted by the presence, the words, the care of those around me. When I need to go away for a while, this has been accepted and not questioned, even when it's been inconvenient, even when it's been sudden.
But actually, the real reason I know beyond doubt that being open is right for me is because in being open, in making myself vulnerable, in showing where I'm blown apart - something in that has allowed other people to be vulnerable in return, to speak of their own struggles and find some comfort in it. I am not exaggerating even a little when I say that 20 different people have confided in me about their own mental health issues, about dark times they have had or in some cases are having, about the places in the heart where the wind blows through. I have held people as they've cried, just as I've been held; I have connected, and if the thread of connection is a dark one, it's nonetheless real for that.
I am very aware of the privilege I have that allows me to choose to be vulnerable and open. I'm white, educated and articulate, employed by an organisation with strong anti-discrimination policies, middle-aged, in a stable relationship with a supportive husband and family. I'm not addicted to anything, including alcohol. I don't need to fear that showing my cracks will result in losing my job or losing my children, being treated against my will, being sub-humanised. For so many people struggling with these issues, the parameters of their lives make disclosure dangerous, and that is so wrong and so sad.
Because, for me, letting people in has been THE factor in continuing to keep going, in trying to wrangle my odd brain into some semblance of peace. Being surrounded by people who see me and see the mess and choose to be with me anyway; people to whom I am drawn closer because my own vulnerability has made me a safe pair of hands for their pain - well, that is everything.
Friday, October 31, 2014
Tuesday, October 28, 2014
My current life in song lyrics
Most days,
I ain't nothing but tiredIt has a cause, and consequences:
Man I'm just tired and bored with myself
I'm so tired, I haven't slept a winkThis, too:
I'm so tired, my mind is on the blink
That’s what’s going onEven, to be a bit emo about it:
Nothing’s fine
I’m torn
Say a prayer for me,This:
Help me to feel the strength, I did.
My identity, has it been taken?
Is my heart breakin’ on me?
Come on mood shift, shift back to good againSo, to sum up:
Come on mood shift, shift back to good again
Come on be a friend
And even though I have felt beaten down by constant doubt,Bonus points if you can ID all the songs...
Depression, and confusion brought about by people’s actions, death, and tax forms,
I keep getting up. And I am loved by all my friends and family;
Though, there have been lots of raised eyebrows
And concerned glances lately.
Monday, October 27, 2014
On Creative NaBloPoMo
So I indicated a while back on Twitter that I was mourning (again) my lack of ability to try NaNoWriMo this year. For the third year in a row, circumstances preclude - in 2012 I was swamped with contracting work, in 2013 I was still settling into my fulltime job, and this year I am struggling with ongoing health issues.
I've decided, instead, to do a cut-down, more manageable, writing project in November - NaBloPoMo (National Blog Posting Month) but as a creative endeavour. Every day in November, I'm going to post something here that stretches a nerve or two. Poems, short-short stories, prose sketches, maybe even some fan-fiction ... we'll see what blows in on the spring wind. Some days will be yellow, some days blue, in keeping with my current state of transience in my own head. A lot of it will be garbage but sometimes getting the garbage out on the kerb has a value, too.
If anyone wants to play along, happy to set up a linky thing - just let me know. I'll be doing it anyway, even if it's just the sound of one hand clapping.
I've decided, instead, to do a cut-down, more manageable, writing project in November - NaBloPoMo (National Blog Posting Month) but as a creative endeavour. Every day in November, I'm going to post something here that stretches a nerve or two. Poems, short-short stories, prose sketches, maybe even some fan-fiction ... we'll see what blows in on the spring wind. Some days will be yellow, some days blue, in keeping with my current state of transience in my own head. A lot of it will be garbage but sometimes getting the garbage out on the kerb has a value, too.
If anyone wants to play along, happy to set up a linky thing - just let me know. I'll be doing it anyway, even if it's just the sound of one hand clapping.
Saturday, October 18, 2014
On liminality (poem)
the pollens are inflicting their suffering on the red-eyed army
days are sunnier, or stormier, sometimes both;
nights are still black and cold.
the lavender encroaches yet further on the doorway,
the eucalypts are full of sharp, spiky scents.
the interloping roses shove blooms of enormous beauty
out of every reaching stem.
the world floats, suspended, in a time-between-extremes
that is, nonetheless, flagrant in its own right
season for growing things, and season for hope
and for pain and for change and for wrenching
fitted to it, I hang, weightless, or leaden,
as the day determines (or, rather, the night before)
fighting a battle I don't properly understand
like a sping wraith, in the limen,
hovering between sun and shade
seeking colour, and finding it, sometimes,
but other days,
finding only tears in a monochrome sky.
- Kathy, 18/10/14
Monday, October 13, 2014
In a public hospital emergency department, 3am
The cubicle is clean and off white, the floor speckled with grey mica. I'm half reclined in the bed, hospital gown and baby blue pyjama pants tucked under a thin woolen blanket, but it's not really cold, or at least I'm not feeling that way. I feel distrait - well, why else would I be here, at this witching hour? - but not cold, not that.
We're not long back from x-ray, where I wrapped my arms, lover-like, around a chest radiography machine and took deep breaths on command for the radiographer. My friend, who's brought me here, is sitting on the chair, as we exchange low-voiced remarks about family, mutual friends, my children, our work, our states of being, sickness, the heart-deep longing to be well. She's tired, I can see, but unflagging. I think to myself, greater love hath no one than this, that they should sit in an emergency cubicle all night for their friend.
I can hear various machines doing their pip-pip squeeeeeeal in the cubicles all around us. My own monitor, which is just an oxygen reader and a blood pressure cuff, is quiescient - everything is as it ought to be, no need for alarms. I am tired, but not sleepy - I'm well beyond that. My hands and legs hurt as great deal.
"I've been very good, and now I want to go outside and have a smoke. No, TWO smokes!" declaims a hoarse voice two cubicles down. "You need to come outside with me while I ..." Her voice trails off into a paroxsym of coughing that sounds like a lung is going to appear on the floor momentarily. I can't hear the nurse's soft-voiced reply, but we hear well enough her riposte: "I CAN'T stop smoking so forget about that. Anyway, I want to be discharged to home. I want to go home!"
Her voice is hectoring and aggressive, but as she marches, pink-dressing-gowned and dry-haired, past our cubicle, the nurse trailing at her heels, I can hear the fear and longing in it too, the desire to be away from this place, kind as it is, necessary as it is. In the nurses' central glass box, I see someone lift the phone and ask quietly for security to attend.
Somewhere, quite remote, a baby wails. It sounds as thin and high as a Siamese cat, and is quickly stilled.
A nurse is quizzing an older man on his pains. "Did it feel like squeezing? Or stabbing? Or -"
"Yes, yes," he says, his voice unutterably weary. "All those things. All those things".
"Well, I think you had better have an angiogram to be sure -"
We've left the cubicle curtain open, the better to accommodate my claustrophobia and to allow ourselves to feel part of the flow of this place. We've seen several patients come through - like animals to the Ark, they are almost all two by two, a patient and a carer. A young couple, holding hands, looking anxious, but no real way to tell which is the sick one. A woman with a badly bleeding hand, paced by a grim-looking middle aged man. An exhausted-looking woman of about my age, carrying a girl of maybe 6 or 7 who's croupy cough cuts the night.
"I think we shouldn't have come", I say. "I think -"
"We're here now," says my friend. "Let's see what the doctor says."
Like summoning a genie, Dr M appears - short, friendly, remarkably cheerful for a woman who's been dealing with the sick for the past umpteen hours. She talks to me, listens to my chest, and asks the nurse to run a quick ecg trace to ensure my heart is working as it should. (It is). Then she gently, matter-of-factly explains that I have had a severe panic attack; that it isn't my fault or my doing, and that they must always be checked out; that my lungs and heart are very healthy and that I may need to talk to my own doctor about what she is fairly confident is advanced treatment-worthy anxiety and depression, which may or may not co-exist with the CFS I may or may not have.
I am not surprised, or even upset. If anything, it's a relief, to give the dog a name.
As we gather our things and go, we pass an elderly lady sitting straight in the chair of her cubicle, hospital gown on, wispy scant hair feathered across her pink head. Her eyes are very dark brown, and look directly at me. I instruct my mouth to form a smile, and I see her lips move as she inclines her head gravely.
Later, drifting into exhausted sleep in my own bed, I think she might have told me that dawn was not far away.
We're not long back from x-ray, where I wrapped my arms, lover-like, around a chest radiography machine and took deep breaths on command for the radiographer. My friend, who's brought me here, is sitting on the chair, as we exchange low-voiced remarks about family, mutual friends, my children, our work, our states of being, sickness, the heart-deep longing to be well. She's tired, I can see, but unflagging. I think to myself, greater love hath no one than this, that they should sit in an emergency cubicle all night for their friend.
I can hear various machines doing their pip-pip squeeeeeeal in the cubicles all around us. My own monitor, which is just an oxygen reader and a blood pressure cuff, is quiescient - everything is as it ought to be, no need for alarms. I am tired, but not sleepy - I'm well beyond that. My hands and legs hurt as great deal.
"I've been very good, and now I want to go outside and have a smoke. No, TWO smokes!" declaims a hoarse voice two cubicles down. "You need to come outside with me while I ..." Her voice trails off into a paroxsym of coughing that sounds like a lung is going to appear on the floor momentarily. I can't hear the nurse's soft-voiced reply, but we hear well enough her riposte: "I CAN'T stop smoking so forget about that. Anyway, I want to be discharged to home. I want to go home!"
Her voice is hectoring and aggressive, but as she marches, pink-dressing-gowned and dry-haired, past our cubicle, the nurse trailing at her heels, I can hear the fear and longing in it too, the desire to be away from this place, kind as it is, necessary as it is. In the nurses' central glass box, I see someone lift the phone and ask quietly for security to attend.
Somewhere, quite remote, a baby wails. It sounds as thin and high as a Siamese cat, and is quickly stilled.
A nurse is quizzing an older man on his pains. "Did it feel like squeezing? Or stabbing? Or -"
"Yes, yes," he says, his voice unutterably weary. "All those things. All those things".
"Well, I think you had better have an angiogram to be sure -"
We've left the cubicle curtain open, the better to accommodate my claustrophobia and to allow ourselves to feel part of the flow of this place. We've seen several patients come through - like animals to the Ark, they are almost all two by two, a patient and a carer. A young couple, holding hands, looking anxious, but no real way to tell which is the sick one. A woman with a badly bleeding hand, paced by a grim-looking middle aged man. An exhausted-looking woman of about my age, carrying a girl of maybe 6 or 7 who's croupy cough cuts the night.
"I think we shouldn't have come", I say. "I think -"
"We're here now," says my friend. "Let's see what the doctor says."
Like summoning a genie, Dr M appears - short, friendly, remarkably cheerful for a woman who's been dealing with the sick for the past umpteen hours. She talks to me, listens to my chest, and asks the nurse to run a quick ecg trace to ensure my heart is working as it should. (It is). Then she gently, matter-of-factly explains that I have had a severe panic attack; that it isn't my fault or my doing, and that they must always be checked out; that my lungs and heart are very healthy and that I may need to talk to my own doctor about what she is fairly confident is advanced treatment-worthy anxiety and depression, which may or may not co-exist with the CFS I may or may not have.
I am not surprised, or even upset. If anything, it's a relief, to give the dog a name.
As we gather our things and go, we pass an elderly lady sitting straight in the chair of her cubicle, hospital gown on, wispy scant hair feathered across her pink head. Her eyes are very dark brown, and look directly at me. I instruct my mouth to form a smile, and I see her lips move as she inclines her head gravely.
Later, drifting into exhausted sleep in my own bed, I think she might have told me that dawn was not far away.
Tuesday, October 7, 2014
On being down, down, down in the deeps
So I have not been well at all since August.
I came back from our wonderful Port Douglas holiday in mid-July relaxed, happy and other than some leftover ear soreness from a cold, healthy. Within two or three weeks, though, I started feeling pretty off-colour, with non-specific but gradually worsening symptoms featuring low level headaches, tooth pain, tingling, loss of concentration, cold shakes, severe emotional disequilibrium (especially extreme teariness) and everyone's favourite ... extreme fatigue that was not relieved with sleep.
A warning siren was sounded as August ended, when I tweeted this:
Since then, each week has been a crapshoot, as I have dealt with sick kids, supported my husband to help his sick mum, and every day faced feeling like death dragged backwards through a hedge made of broken glass.
There have, of course, been better days and worse days - I have had a few shining moments of feeling basically really good for a few hours, and a few more of feeling just average rather than seriously bloody. It's fair to say, though, that the trend has been a downwards one.
I have battled on (mostly) at work for the five weeks since I first tagged my fatigue publicly on 31 August. I've interspersed a week of annual leave, just over a week of sick leave, and many working at home days with occasional appearances in the office I am the ghost in the machine now - not often seen, but frequently heard from. Indeed, I have only been in 11 days out of the possible 30 in that period, whereas normally I would've been in 25 after subtracting my usual work at home Thursdays, or 21 if you also subtract my planned annual leave.
I have two major dental procedures to go through now, and it's possible that getting those dealt with will help in time. My doctor, though, is coming to the conclusion that the likeliest cause of my symptoms is a thing I never wanted to hear in regard to myself - ME / CFS.
Only time is going to tell if this is what's going on with me. Only time will tell how severely this is going to impact my ongoing life and my family, and indeed my work. Only time will tell if our planned Tasmania holiday in January is going to be possible or not (definitely NOT if I am still like this).
While time does its telling, I am going to be extremely protective of myself and my inadequate energy levels. That means managing work, social life and commitments super carefully and building everything around rest and recovery time. It means probably not blogging much, but if I feel like it and I feel I can, blogging entirely to interest and taste. It means making me a priority so that I can maybe soon again make others the priority I want them to be.
I do know that there is no valley so deep that the sun can't find it. Even if it is a weak and struggling thing, that sunbeam; even then.
I came back from our wonderful Port Douglas holiday in mid-July relaxed, happy and other than some leftover ear soreness from a cold, healthy. Within two or three weeks, though, I started feeling pretty off-colour, with non-specific but gradually worsening symptoms featuring low level headaches, tooth pain, tingling, loss of concentration, cold shakes, severe emotional disequilibrium (especially extreme teariness) and everyone's favourite ... extreme fatigue that was not relieved with sleep.
A warning siren was sounded as August ended, when I tweeted this:
I do not understand why I am so exhausted. I have just had 4 days off work FFS. Shld be peppy!
— Empress Zucchini (@ZucchiniBikini) August 31, 2014
Since then, each week has been a crapshoot, as I have dealt with sick kids, supported my husband to help his sick mum, and every day faced feeling like death dragged backwards through a hedge made of broken glass.
There have, of course, been better days and worse days - I have had a few shining moments of feeling basically really good for a few hours, and a few more of feeling just average rather than seriously bloody. It's fair to say, though, that the trend has been a downwards one.
I have battled on (mostly) at work for the five weeks since I first tagged my fatigue publicly on 31 August. I've interspersed a week of annual leave, just over a week of sick leave, and many working at home days with occasional appearances in the office I am the ghost in the machine now - not often seen, but frequently heard from. Indeed, I have only been in 11 days out of the possible 30 in that period, whereas normally I would've been in 25 after subtracting my usual work at home Thursdays, or 21 if you also subtract my planned annual leave.
I have two major dental procedures to go through now, and it's possible that getting those dealt with will help in time. My doctor, though, is coming to the conclusion that the likeliest cause of my symptoms is a thing I never wanted to hear in regard to myself - ME / CFS.
Only time is going to tell if this is what's going on with me. Only time will tell how severely this is going to impact my ongoing life and my family, and indeed my work. Only time will tell if our planned Tasmania holiday in January is going to be possible or not (definitely NOT if I am still like this).
While time does its telling, I am going to be extremely protective of myself and my inadequate energy levels. That means managing work, social life and commitments super carefully and building everything around rest and recovery time. It means probably not blogging much, but if I feel like it and I feel I can, blogging entirely to interest and taste. It means making me a priority so that I can maybe soon again make others the priority I want them to be.
I do know that there is no valley so deep that the sun can't find it. Even if it is a weak and struggling thing, that sunbeam; even then.
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