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The fog of sorrow

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William on the Intensive Care Unit door security screen © John MacPherson

I knelt on the hill, both arms wrapped around William (aged 5). Tears streamed down his small face and his little shoulders bobbed up and down in the unmistakable rhythm of sorrow. The ‘hill’ is the main street in our village, down which all the parents on the school run drive, walk, cycle, and if you’re late like me, try to run.

Several cars passed, each driver a witness to this scene of obvious distress. My own face, concerned and trying hard to be reassuring to my son, is dark eyed after a succession of sleepless nights. I caught the eye of a few drivers, some averted theirs, others pursed their lips in sympathy. Eventually we arrived in the playground, a tangled mess of children, each one desperately embracing freedom before the morning bell signifies the start of school.

Numerous parents milled around, many averting their gaze as I arrive. Normally I get spoken to by quite a few. But living in a small community, with my partner in the Intensive Care Unit with some brain damage and all the life-support kit kept close by her bed, its understandable that some feel uncomfortable engaging in conversation with me in case they upset me. The bell rings and all the children form in their lines. William is reluctant to go in and, crying, clings to my leg. His line moves and all the P1′s file in, leaving us behind. I’m left stranded, the anchor of a distressed child pinning me in full view of all the other children, and their parents.

It’s not easy. Decidedly not easy. I waddle forwards to meet the teacher who is intent on rescuing us both. William is ‘taken’ from me, his little face pleading with me to not let go. He disappears inside, the marks from the pressure of his fingers on my hand still visible as I walk away hesitantly from the door.

I put a brave face on and wander back to the fence and slump, then sigh.

I’m only there a moment and a concerned voice intrudes: “Are you ok John, is William ok? I saw you on the hill, he looked distraught. Is everything……….alright? Any improvement with your partner?”

“Yes she’s progressing well. Not out of danger yet, but awake, talking, moving all her limbs, some memory loss but only the short-term stuff, long term seems reasonably intact, and the doctors are amazed at her recovery. She’s been having some fits, but the medication is being tweaked to try to control that. And there are some motor issues, her coordination is a bit haphazard, but that may improve in the next few days – it’s all a waiting game at present, but each days sees remarkable progress.  Problem is that they cannot establish a cause of this, there’s no apparent heart problem so no heart attack, and no sign of any catastrophic brain injury like a blood clot or aneurysm, and the current brain injury is simply a consequence of oxygen starvation. All a bit of a mystery…..” I tail off into silence again.

“Is Melanie aware of what’s happened?”

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The ‘visual toolkit’ helping recovery (thanks everyone!) © John MacPherson

“Oh yes! She’s been told several times, although forgets, but each day remembers more of what we’ve told her. She’s been quizzing each of the family to see if our stories all match in case there’s something awful being concealed from her – she’s a professional researcher, that’s what she does so that’s a good sign! But her friends and work  colleagues have been brilliant and instead of get-well cards and flowers (which are not allowed in critical care anyway) I asked them to take a photo of themselves, smiling and happy and to put a message on the back, and something about who they are and what they do, and their connection to Melanie.

The response has been overwhelming, pictures are flooding in from across the country  and the academic network and her room is now awash with photos of smiling faces, personal messages and jokes and all sorts of stuff. It’s helped the nurses gain a fuller picture of who she is, what she does, and provides a focus for discussion and fixed points of reference against which they can assess Melanie’s brain functions and recollection. It’s not every brain injury patient who get excited over a picture of a massive salmon! But Melanie’s been managing a wild salmon project on a remote river over on the west coast for several years and the sender knew this particular image would make her smile. It did!  They’re only simple photographs but they are a window into her world, and will be hugely valuable in aiding her recovery, socially and intellectually. When I tipped the first pile out on her bed her face lit up and she was quite emotional remarking softly “ALL these are for me? They are all thinking about ME….?” and all I could say was ‘Yes, they are’.”

Then, a short silence. Children in their lines laughing. A deep sigh as emotion sneaked up on me again………….

 

Something fishy has been going on for a long time © John MacPherson

Something fishy has been going on for a long time © John MacPherson

 

“….but on the hill…all the tears…no…no that was all about William’s nana, Melanie’s mum. Nana was supposed to be walking down with us to school, William gets on really well with his grandparents, but when we opened the door to leave, Melanie’s collie dog shot out and ran off after a cat and disappeared. Nana had to race off after it and we’d to leave without her, much to William’s dismay. We set off for school and he expected her to catch up but despite him dithering and looking back she didn’t show and he got more and more anxious. When he realized she’d not be coming he just dissolved, distraught. And that was us stranded. With both of us in tears………

…………so thanks for talking to me, it wasn’t what it seemed!

……you know I’ve been anxious about that, that some parents do find this difficult, and don’t want to upset me by ‘intruding’, but I was afraid that it would affect William, that he’d detect their ‘distance’ and wonder about it. You know, it’s bloody hard just now for everyone….but well…..we all need to talk about these things……….thanks very much……….really, I appreciate it,  just talking…….”  

…………..and she said nothing more, simply gave me a warm and very welcome hug. One not filled with sadness, simply relief.

The difference, trust me, is noticeable.

Sometimes the fog of sorrow obscures everything, even the heartening truth.

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    6 comments to The fog of sorrow

    • So many truths in this post John. Glad to read that Melanie is showing signs of progress. Thoughts and prayers for all three of you.

    • Carli from Hinterlands

      John, I’ve just seen your posts and am so so sorry to hear about the terrible time you’ve all been through. It’s great to hear that Melanie is already making so much progress and I hope that continues day by day. I can hear from your posts what a fantastic job you are doing supporting, Melanie, William, family and friends and I hope you can call for the support you need too – hang on in there. My brother had a really bad time this summer, collapsing on holiday in Scotland, also his head. It was very frightening for everyone, not least him and his wife, but he has almost made a full recovery now – long and slow – and he will be back at work very soon. I trust and believe you will get there. Lots of love

      • Thanks Carli – been a strange 10 days I have to say. Melanie improving but cause of all of this is still a mystery. SHe has no recollection and forgets so I’ve had to retell her the story numerous times. Still, she gets a new sesne of wonder every time! Groundhog day!

    • John, this is a beautifully written piece about the essential stuff of life. Coming to terms with the mystery of what has caused this must be utterly horrendous.

      I found it particularly poignant as I just found out that my mother is rather unwell with Lymphoma but is expected to respond well to treatment as she is very fit and robust for someone her age. So fit, in fact, that none of us saw it coming. But there’s no mystery here. It’s just an aspect of aging.

      I wish you all well and that Melanie makes a full recovery. Your idea of having her friends and colleagues photograph themselves was a stroke of genius and a most beautiful idea.

      - Paul Treacy

      • Thank you Paul. There were a lot of ‘empty’ hours to fill and I think there’s great value in writing ‘in the moment’ rather than with the clarity of hindsight. The photos are flowing in from her colleagues and friends and its proving to be a hugely valuable thing – the nurses are enjoying (and valuing) the ability to ‘flesh out’ Melanie’s life through them, and I think its going to be a really useful tool going forwards. Good luck with your own situation – despite the awfulness of the circumstances having folks around you can enjoy a laugh with, as well as a weep, makes a huge difference.
        Regards
        John