…So allow me to paint a picture for you… Right now I’m in a period of convalescence. I don’t know about others, but I often carry a simmering sort of guilt since falling ill – it makes me hypervigilant about how I convey my experience of life on a daily basis, which is tricky because I really crave honesty and sincerity but often feel I have to adjust or edit my reality in daily life just to smooth things over. I could choose to be more blunt but it’s never really been my style. By contrast, fortunately before falling ill my basic self and life direction weren’t particularly controversial or socially awkward so I felt more at ease with communicating my life story and goals to others. I basically fell out of the rhythm of my own life and I don’t think I’ve ever properly settled into this ‘new’ life of wavering vitality and myriad symptoms. In my head it just isn’t me. Part of my growing up process in the years since falling ill has been about making the tough decision on whether I was comfortable to open up and be honest about my more uncomfortable life story now. It has been a conscious choice to keep to talking and documenting my life even after it turned into something I never wanted, nor would want for anyone really.
I wouldn’t say I’m ‘blossoming’ but certainly the pain of silencing and censoring myself (which lasted about a year after I fell ill and was grappling with my new reality) became too great so that the risk of exposing my life as this new, more challenging and unenviable thing became less hard to bear. I reached a point where I felt so low that I didn’t much care about peoples’ opinions anymore. Since then it has been a rollercoaster but by and large, each time I’ve opened up about my experience I’ve been both relieved and pleasantly surprised by the support I’ve had from others.
I still don’t wear this role with ease though. Maybe that’s just because a lot of the time it’s really objectively difficult, it would be no matter who you are. I’m not saying that for sympathy – I’m saying it to be honest, with whoever reads this and with myself. By writing I learn things I can’t process purely on my own in my head. Somehow the process of typing it out makes it easier to understand – like plastering my thoughts on a mirror. I can ‘see’ it, work with it and put it outside myself before trying to reintegrate it. Maybe that doesn’t make sense – as a visual it’s like my thoughts are a ball of wool that’s all tangled and complicated in my head and as I write it comes out as a nice smooth thread and then eventually is woven into something recognisable, with shape and form. Okay if that metaphor isn’t doing it for you then skip on ahead because that’s all I’ve got!
(This kitten represents my internal confusion. No, it doesn’t. I just wanted to put the kitten picture in. Because…kittens.)
So this guilty feeling I think is more a sort of tacit understanding of being ‘different’ now. Both in my life’s occupation (getting well – which is proving to be quite involved) and in tangible ways socially like when I need a wheelchair when out in public (not all the time, but certainly if I’m out and meant to be going any extended distances I would ordinarily otherwise walk) which is a very obvious marker of ‘she’s unwell’. This is what I mean by difficult…difficult is the sensation of constant friction and discord with my social environment which then translates into discord within myself about myself. Oh and I feel defensive too! There’s like an inner critic that sounds a bit like people I’ve known and just a bit like plain old insecurity – probably a mixture of both and it says: “my god you’re so self-absorbed, why are you writing about this no-one cares, some people have real lives to worry about you know???” I’m often dialoguing internally with this voice – it comments on almost everything. Right now it’s telling me that writing about my various ‘internal voices’ makes me sound schizophrenic. I’ve told it to eff off. Mentioning social awkwardness was just my foreshadowing for what I just wrote. Other people have conversations with themselves in their own heads? Right? Anyway…
What I’ve been doing today, as I recuperate from travelling a VERY. LONG. WAY. (over an entire ocean and then some) to see a Doctor who specialises in what ails me (not mental neurosis, Lyme disease, the neurosis is just part of my personality, it’s here to stay folks!) is I’ve been reconnecting with some writing. Specifically poetry. Even more specifically the poetry of a man called John O’Donohue who I did not know of until a few years ago when a poem of his was shared in an online support group for people with chronic illness and I read it and it struck me very strongly. Each time I reread it I’m similarly struck. To the extent I’d consider getting part of it as a tattoo – I have no tattoos to date – not because I’m against them but more that I feel my aesthetics are too fickle to permanently put something in ink on my body, I don’t trust myself not to change and despise it in the future. But there’s a particular line in this poem that I feel so deeply connected with that I may just commit to inking it. I’ll keep you posted on that.
I’m sharing the poem here, along with what I wrote about it in the post where I shared it on my personal Facebook page, at New Year, a few years ago. I later learned this poet was born on New Year’s Day and died shortly after New Year suddenly and unexpectedly in 2008 so the timing of me finding the poem and how aptly it fit my mood and sentiments in New Year a few years ago, is quite incredible.
I wrote: New Year’s Eve feels like a raw and aching sort of challenge for the chronically ill – it throws our personal situation into stark relief against the temporal mood of festivity, anticipation and hope. Promises of new beginnings are undercut by rememberings of relentless struggle. It’s hard to believe with any conviction that ‘this will be THE year’ …the year we get ‘better’, which is to say: healthier, more free, independent and in control once more of our lives.
Still, there is something a bit magical about New Year and for me, that flickering light of hope and belief in brighter days ahead is fuelled by a subtle and gentle philosophy of compromise. My expectations remain, yet only so long as they are in a state of fluidity. Black and white declarations about what I will do and how I will be are not useful. They are born in my mind and then swiftly crumble to ash when I attempt to conceive them into reality. An all or nothing approach, it turns out, is a hindrance to my survival.
Someone I don’t know shared a poem this morning on one of the online groups I am part of and it really epitomised so much of what I feel is my inner world but I know is shared by many, many others in a similar position. It’s one of those things that hit me a bit like a lightning bolt – right to the chest. It never ceases to fascinate me how a stranger’s words can feel so much my own. Like the song “Killing me softly”, sometimes those we don’t know seem to know us – and there’s a strange sort of comfort in that.
I would say that this poem reads somewhat like the kind words of a friend or loved one to someone suffering illness, and somewhat like a prayer. I’m not religious in any traditional sense so instead I like to think of these words as being like a ‘hug for the soul’, a gift of solace, insight and empathy when it feels like you’re walking a dark path made an inkier black by uncertainty and isolation. They offer a little light to brighten and hold a space in what would be nothingness. And light cancels dark, simply by virtue of its own existence. That’s the magic I’m holding onto this New Year.
For a friend, on the arrival of illness
Now is the time of dark invitation
Beyond a frontier that you did not expect;
Abruptly, your old life seems distant.
You barely noticed how each day opened
A path through fields never questioned,
Yet expected deep down to hold treasure.
Now your time on earth becomes full of threat;
Before your eyes your future shrinks.
You lived absorbed in the day to day,
So continuous with everything around you,
That you could forget you were separate;
Now this dark companion has come between you,
Distances have opened in your eyes,
You feel that against your will
A stranger has married your heart.
Nothing before has made you
Feel so isolated and lost.
When the reverberations of shock subside in you,
May grace come to restore you to balance.
May it shape a new space in your heart
To embrace this illness as a teacher
Who has come to open your life to new worlds.
May you find in yourself
A courageous hospitality
Towards what is difficult,
Painful and unknown.
May you use this illness
As a lantern to illuminate
The new qualities that will emerge in you.
May the fragile harvesting of this slow light
Help you to release whatever has become false in you.
May you trust this light to clear a path
Through all the fog of old unease and anxiety
Until you feel arising within you a tranquility
Profound enough to call the storm to stillness.
May you find the wisdom to listen to your illness:
Ask it why it came? Why it chose your friendship?
Where it wants to take you? What it wants you to know?
What quality of space it wants to create in you?
What you need to learn to become more fully yourself
That your presence may shine in the world.
May you keep faith with your body,
Learning to see it as a holy sanctuary
Which can bring this night-wound gradually
Towards the healing and freedom of dawn.
May you be granted the courage and vision
To work through passivity and self-pity,
To see the beauty you can harvest
From the riches of this dark invitation.
May you learn to receive it graciously,
And promise to learn swiftly
That it may leave you newborn,
Willing to dedicate your time to birth.
I don’t know about you but writing like this, to me, is life-affirming. I’ve been reading more of John O’Donohue’s work today from my bed and it’s a sort of ecstatic feeling to ‘hear’ someone put words together in ways that aren’t purely utilitarian but instead they’re artful and non-linear and faceted. It’s beautiful. Like a great live music gig or falling in love. I don’t know it must just do something to my brain. I think it’s also the realisation that someone else I’ve never met has this rich, complex, artful and inquiring internal world and by writing in such a way it makes me feel more connected to humanity. It’s the externalisation and communication of feelings and impressions that might otherwise never be captured and conveyed. Probably we all wonder but few can express this wonder, create that thought-photograph if you will, as well as the late John O’Donohue. May he Rest In Peace.