Revisiting bad memories

I feel very conflicted about this – but haven’t quite learned to trust my own instincts. Do I not want to do this because I know it will hurt or because it’s not helpful, not time yet?  This is my “homework” from the psychiatrist I was referred to by the Chronic Pain clinic, and whilst it has been on my mind I have struggled to write anything at all.  My blog looks pretty blank.  My writing usually feels therapeutic, and I have had encouragement over the past month or two with where I am, which helps me to know I am in the right place.

From the time I was in AA, and reading the AA literature, I know it is not an uncommon experience to have entirely wrecked one’s instincts for what is right and wrong, to not be certain what will help you get well, to want advice and then feel frustrated and overwhelmed by that advice.  I know that when I was drinking, I ignored the Holy Spirit in my heart, screaming out “No! Don’t do it again” and went against it, ignoring my own instinct for right and wrong until I couldn’t tell which way was up anymore.  I became so desperate for human contact, for something that felt a little bit like love or support, because despite having damaged and misused my close family relationships and friendships, letting them down again and again until they needed to distance themselves for their own well-being.  I would latch onto anything that felt like love, especially if it felt like it might be unconditional, not caring eventually where that might come from, using people to make myself feel less awful about myself.

Ultimately I was so destroyed inside I realised that my only hope was to really, fully, trust Jesus Christ for my salvation.  This had to stop being just a belief that I kind of hoped might work out but wasn’t able to access on a day-to-day basis and be the hope that is certainty and is eternal.  That for all that I’ve done, and he can see into those dark places that I won’t share with anyone, there is eternal forgiveness, but also, daily encouragement, strength, and love.  There is inward change – by the power of the Holy Spirit, I am not who I was when I was drinking, and I am far from finished yet, but my instincts are still a work in progress.  So I’m doing it – maybe because I’m still a “good girl”, people-pleasing and doing as I’m told, not quite ready to let myself take charge and know that my decisions are good.

Even that is a justification.  I did it even though it doesn’t seem right for me.  The task is to blog about the following:  Remember, voluntarily, a bad memory with respect to my daughter, and imagine myself now, talking to my younger self, 4 years younger than now.  What would I say?  What mistakes did I make, and why did they happen?  Reassure your younger self as to how things turn out.    From here I’ll let what I’ve written stand as it is, except to say I’ve taken her name out, and it doesn’t read quite so well:

Some of the worst times weren’t the sober times, they were the hungover and recovering times.  I would get angry, irrationally so.  I have never been someone who verbalises their anger at anyone, but I would shout at my precious daughter.  I would be incredibly angry, over something that she could hardly help, being just a little girl, and take it out on her.  The anger would course through my veins and I would feel utterly powerless to react any other way.  I remember standing at the top of the stairs in the house where my alcohol problem solidified into dependent daily drinking, with daytime drinking at weekends – I was yelling, and throwing my phone so hard it shattered.  I would always apologise to my sobbing little daughter afterwards, saying Mummy loved her and didn’t really mean it, and we would cuddle together.  I feel so angry with myself, for continuing the cycle that I wanted to break, and for seeking absolution that I didn’t deserve, from a 3 year old.

I feel distraught at the memory, at what my lovely girl must have endured at my hands at times.  I would have had a drink, later, maybe not very much later, to “calm me down”, and drunk I was never angry, I would be sleepy, and cut corners, saying ‘you can have a bath in the morning’ and ‘no stories tonight, Mummy’s tired’.  The vision of the stairs, and of her crying, haunts me.  I go into it with no control over leaving it – usually what happens is eventually I get exhausted with sobbing, often with my fiancé there, and wrap myself up in a duvet, waking later with a congested head.  The grief feels uncomplicated at these, its worst times, and it is a raw pain of separation, gaping jaws of loss combined with this badness that is guilt and punishment and uncertainty.

If I could face myself as I was then – only 4 years or so ago – I would see this young woman desperately in need of a hug, a hand, and a way out of the denial.  I refused to see a problem then, just “don’t you know how tough this is, looking after a child in isolation and loneliness?” and this “me and my girl against the world” attitude that grew every time I tried to ask for help and was failed.  What I needed was love.  What I needed was God, was Him working through human forms, through people that would care, and show me that unconditional love without which I would never have got well.  There’s two things about that, though, the first being that the 28-year-old Sarah would have told the now Sarah to get lost, at the very least.  “I’m fine on my own” would have come out and denial, formed into defensiveness, would stand as the barrier through which any alcoholic tries to deal with the world, like spines of a hedgehog to push anyone away.  And the second is this understanding of forgiveness.  Because, if Christ died for me, for my salvation, then I have no business refusing to forgive myself.  Because, that’s not how it works.  My guilt, which leads to condemnation and death is paid for.  The slate is wiped clean.  To keep trying to write my sins on the slate is to say that Christ isn’t enough.  I live in the tension that is between ‘right with God’, which is utterly true because I have trusted in Jesus Christ for my salvation, and living in this world with all the consequences.  The separation doesn’t go away, and the other consequences of what I have done, the guilt, the recriminations, the fear that the pain will swallow me whole, still exist.  Of course underneath it all I have to admit – that I long for forgiveness from my daughter, and that is what I may never get, never know about, and I may have to live with the anguish that genetic predisposition and her early life circumstances lead her to experience addiction herself in some form with me powerless to help.

What else would I say to myself – to say that it all turns out well would be a lie, or at least, would be a language I didn’t speak then.  The only version of well that I was interested in was the one with ‘my daughter returning home and she and I living happily ever after, together’ description of turning out well.  I have no reassurance for myself on that score – just the promise of 12 months of agonising Social Services involvement until I gave in and said, yes, get on with it then, get her placed permanently and safely and I will stop slowing down the proceedings.  I could tell myself about the lies social workers tell and that I shouldn’t believe that I was responsible for slowing down her being placed, that one day I’ll learn that’s not true.  The version of things turning out well is like a jigsaw and I had half the pieces missing.  I’d learn sobriety.  I’d learn to line up over 400 24-hours in a row without a drink.  And that during that sobriety, slowly, I’ll get the pieces back, one or a few at a time, as I understand how to live in the Kingdom of God in the world.  I would tell myself that work isn’t everything, but it’s a big something.  I’d learn that actually, I had the whole jigsaw the wrong way round, not realising that what was wrong with my life was me, and that when I looked at the world, I looked at it with my broken vision, and broken understanding.  And that letting God back into my life was going to turn everything round the right way again.

My younger self wouldn’t have been reassured by these things.  But when I imagine being sat looking at her, I don’t have anger that matched her destructive anger, just compassion for her pain.  I have a meaningful way of understanding life, and such sorrow for her that things will have to get so much worse, that she will lose almost everything, to find it.  But that’s what I must hold on to: compassion for her pain, and let the agony for my little girl I feel and see when I have been remembering, and haunted by, go.

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The sort of landscape that makes you want to burst into spontaneous applause!

I was on holiday last week, the most exciting and relaxing and amazing holiday in years.  I went on a cruise to the Norwegian fjords for a week.  And it was beautiful.

I have much to unpack from that week but I’m going to just start in 2 sections inspired by quotations that were given to me during the week.  The first, is a short poem, given to me by Dr Peter Dean who is a highly qualified Forensic Medical Examiner and Senior Lecturer at Barts’ and The London Medical School.  He delivered a couple of lectures, and revealed himself to be a very gentle, and empathic man – not qualities usually found in pathologists in my experience – and I do not know if he is of any faith or none, but whilst lecturing on “The Elephant Man” he shared the following:

Tis true my form is something odd,
But blaming me is blaming God.
Could I create myself anew,
I would not fail in pleasing you

If I could reach from pole to pole,
Or grasp the ocean with a span,
I would be measured by the soul:
The mind’s the standard of the man.

The Elephant Man’s real name was Joseph Merrick, and he suffered from what is generally thought to be a very rare type of Neurofibromatosis, a condition guaranteed to have any medical student quaking*.  He had tumorous growths of the nose, palate and of the bone surrounding the jaw and within the skull, and during his teens and early twenties he was transported through England and Holland as part of ‘freak shows’ in the years leading to their outlaw.  He lived his last 4 years in some degree of comfort, after being taken under the wing of the eminent London surgeon Sir Frederick Treves.

This poem was written by Joseph Merrick during his last years.  This isn’t a literary criticism, because I am itching to sort the punctuation out and it’s dying to be made into proper sonnet form – but this man had relatively little education, and what it shared here, and what speaks to me, is his heart.  This man looked wrong, in the eyes of the world – but he knew that God ultimately looked at his soul.  He had been treated quite literally as an animal and stripped of dignity and still he knew he could not please people on the Earth – he realised that what he had was more valuable than an external form that looked good.

And how that can be a lesson for us today.  For me – to value my soul, bought at a price, and to stop getting so worked up about my external form.  One of the consequences of chronic mobility problems, for me as for many, is weight gain.  I dislike it, and for all that I am concerned with the health complications, when I look into my heart I know it is at least as great a part down to aesthetics.  What-do-I-look-like and What-will-people-think.  And the other issue is that for those of us who have acquired disabilities (as opposed to having been born that way, congenital abnormalities) is that we have to get used to having a form that is – to use Merrick’s turn of phrase – unpleasing.  How many times I have said “I never realised about… how difficult steps are or how few places are wheelchair adapted”, or not quite joking “I’m getting well acquainted with disability services, toilets, assisted travel, etc.”  I’m not saying it’s worse, or better, than something which is lifelong, but there is a sudden shift of focus and the associated loss that must be dealt with.  And in the midst of that, be confident that I am still myself, and the bit of me that counts is still functioning.

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In his hand are the depths of the earth,
and the mountain peaks belong to him.
The sea is his, for he made it,
and his hands formed the dry land.

Come, let us bow down in worship,
let us kneel before the Lord our Maker;
for he is our God
and we are the people of his pasture,
the flock under his care.

Psalm 95v3-6

These verses and many like them were just bursting out of me throughout our days in the fjords.  The photos, I hope, do a little towards explaining why.  The landscape was just awesome.  I cannot think of a better description of it.  It was beautiful, vast, and majestic, and I just couldn’t see how anyone could look at it and not see the hand of our creator God.

Others far more capable than me can expound the verses, I just want to say a couple of things about what Scripture, combined with these wonderful holiday opportunities, has given to me this past week.  I tend to be someone who learns more easily in the hard times, and like all of us I depend on God more completely when things are really tough, because that’s all I really can do.  When things are good, I do one (or both) of two things, firstly, I start to take God for granted and forget where and whose the power really is, and secondly to feel guilty, especially in this instance as being able to be on holiday in a really luxurious way.  But I was forgetting the power of Scripture to transform me in any situation.  My whole being leaped with joy at His creation, and I don’t think I’d have been able to enjoy the other parts of the holiday so much if I hadn’t been able to have my heart redirected into praise.  It bubbled out of me more than a couple of times – in any company.  What an amazing way to start to bear witness to the might and power of God, to be in a landscape that dramatic, and so full of life and creation.

Mainly, the response that I felt called to was exactly as the psalmist says – let us worship and bow down before the Lord our maker.  What other response could there be but to praise Him with a heart full of joy and thanks.

*due to its complexity.  Around a quarter are familial, and they can be broadly classified, but it’s a difficult diagnosis to make, and they crop up far too often in finals considering how infrequently encountered in clinical practice.

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What I wish every doctor knew about alcoholism

I have really struggled to complete anything over the last week, after experiencing a bit of “success” with my last post.  I’ve written lots, I now have 6 posts in varying shades of incompleteness, which I have added a paragraph or two to each time I’ve sat down to write, which has been most days.  And I have been grappling with what was well over 2000 words on “what is alcoholism” – and, you know, this is a blog not some essay competition.  So this is an attempt to break it down, and I am intending to do a series of 3, the 2nd being “What I wish ever counsellor knew about alcoholism” and “What I wish every minister knew about alcoholism”.  (Like all good genies (and preachers) I get 3 wishes!)  This post is fairly medicalised, assumes a certain degree of knowledge, and is less centred on faith than my usual writing (apart from that I find it impossible to think without it).

 

1. Alcoholics are shape shifters

Once you’ve been addicted to one thing, you are at massively higher risk of becoming addicted to something else, and just because that something else is a prescription drug doesn’t lessen the agony and the damage it can go on to cause. The following should be given in my opinion with extreme caution and not without very solid indications: opiates; benzos; zopiclone and its friends; anything with sedating side effects eg. tri-cyclics, chorphenamine.  You get the idea.  I have met so many people who, sometimes in established recovery from alcohol, then became addicted to something else, and it was initially prescribed by a doctor.

Now, I’m not saying it’s the doctor’s fault that these people then went on to using the substance irresponsibly or switched to illicit drugs, but the doctor must take some responsibility.  AA is variable on how wisely it informs people about this – from the “take nothing” extreme to its ‘declining to comment on outside issues’ opposite. Addiction services can also be variable, and so the ‘it’s ok if it’s prescribed by a doctor’ myth pervades.

It comes down to whether we believe in Hippocrates, and his famous saying of “above all, do no harm”.  This isn’t an obvious harm, and it’s certainly not a glamorous bit of medicine.  It takes real guts though to see these people in all their humanity and do right by them, knowing that not only will they not thank you for it, they’ll probably give you a fair amount of grief for not giving them the sleepers they asked for.  Tough.  This is tough love time.  You might not think you trained all those years to sit and listen to some drunk berate you because you won’t give them any more painkillers for their gallstones but you know what?  You really did.

 

2. Just because there are “alcohol services” and “drugs workers” doesn’t mean you get to shirk responsibility for your patient.

Of course there are plenty of good doctors.  And it’s very significant too that alcoholics are mostly heartsinks, a pain in the neck to look after, and dash your hopes time and again. Smelly, full of tears of self pity, of everyone else’s failings, and in all their active addictive glory, I can understand it being very tempting to hand them over to the alcohol/drug service as soon as possible, and to hand them back whenever there is a problem, or change, or they go back to the drink or drugs.  This happened to me, it happened when I attended in crisis, and when I asked for disulfiram, and when I said I’d had a single night’s drinking, and when I had been sober for a while and was looking for counselling.  And I’d get reported to Social Services with each of those, too, but that’s a whole other post.  And maybe that’s the protocol – I’m sure each consultation could be defended, and maybe will be by my GP friends and readers.  But it felt like my own doctor would not engage with me, was not interested in or able to help me, and really disliked seeing me, actually.  I certainly came to dislike seeing him.  I felt he lacked the courage, or kindness, to engage with me, and when talking to my peers in treatment I know I was not alone.  I am reminded that Jesus said, ‘Truly I tell you, whatever you did not do for one of the least of these brothers and sisters of mine, you did not do for me.’ (Matthew 25v45).  We are called to remember our own humanity, to listen, and to have the guts, quite honestly, to go out on a limb for this difficult patient group – who feel as if they are ‘the least’ – and to treat them as the King.

 

3. Learn to self-soothe (healthily)

There is a much quoted phrase among students and doctors that “an alcoholic is someone who drinks more than their doctor”.  Like all good stereotypes, this has its feet in the truth, and doctors are indeed up there in the top 5 professions to have a problem with drink.  We all know someone who drinks to much, and it was admired, in my student years, to have been out at 2 dancing and on a ward round at 9, green with a hangover, but present nonetheless.  We think spectacularly incoherently about alcohol with respect to ourselves.  13% of people have a problem with unsafe alcohol use (WHO).  I believe it is a lack of learning to self-soothe in a healthy manner that means, by the time these hungover students are practising, alcohol seems to fulfil the need to take the pain and stress away, just for a little while.

I taught communication skills courses at Manchester Royal Infirmary for a while, and on an excellent full day course for final years there was a section for an informal discussion on ‘coping’.  Ironic, considering I was the one quietly not coping, and not telling anyone, but I think what I observed is valuable nonetheless – within a couple of minutes, someone would mention the benefits of sharing a bottle of wine, or a night with the lads in the pub.  By the time we finally get round to mentioning the need to learn to cope and not just hang on in hope that it will happen (and this is not being negative about Manchester – at least it’s in there, I don’t recall it being for us 10 years ago) the words drinking and coping have become almost synonymous.  It’s too late.  Whilst there were a few positive suggestions from students, and I taught that particular course a good number of times, I did feel they were often theoretical ideas, not something that had become a regular part of the student’s life and routine.

Jesus says in Luke 4v23, “Surely you will quote this proverb to me: ‘Physician, heal yourself!’”, where he is expecting the proverb to be used in mockery of him.  In treatment, both in the roughness of Birkenhead, and the privilege of Bayberry, I had my training thrown back at me.  “Isn’t there somewhere else you can go”, said Eileen*, leaving unsaid, “you’re just all wrong for here”. By normalizing it and laughing it off, we increase a culture of blame, secrecy and shame.  We are not superheroes and we cannot heal ourselves from alcoholism.  We need to change the culture.

 

I realise I have tried to sit both sides of the fence here – it remains impossible not to.  When it comes to identity, I count both highly on a list of what makes me who I am.  The one I am glad to be throwing a little further off each day, the other I hope to soonish step back into

 

*name changed to protect anonymity

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She’s gone

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This is my daughter, who for her own sake, I am not going to name here.

My daughter, who was removed from my care by Social Services.  The evidence was 3 reported incidences of being drunk in charge of a child.  I got her home 6 months later, but then it happened again.  She never spent another night in my care, or even another hour unsupervised in my company.  I continued with drinking binges after she was removed, until I conceded defeat and that I couldn’t get well for her, that Social Services should do as they were planning, which was that for her own best interests she should be placed with adoptive parents.  Each of the initial incidences was reported to Social Services by my family members.

I have two things to say – firstly that this is what alcoholism does.  It affects the way that you think.  You think it won’t be that bad.  This time I’ll be able to stop.  It’ll never really happen to me.  I’m in control, I’m not that bad, I can still take care of my child, no-one will find out.  Lies, all lies, to justify that the drink is ok, and pretend that it hasn’t taken that primary place in my life above my girl, my career, my health, my finances, my God, and my self respect.  I couldn’t even stop for my beautiful, creative, loving, and very special daughter.  It is a madness of the mind, the emotions, the body and most importantly the soul.  This is what proves incontrovertibly to me that I had become powerless to stop in my own strength.  I will discuss what alcoholism is in another post.

And secondly, that this is the worst grief I have ever experienced.  I was 9 months sober by the time she was placed.  I never stopped loving her, and I have never stopped missing her, and longing that things could have been different, that my recovery could have started sooner, that I could have been the best person for her to be with.  I have had to admit that, for her own best interests, it was better for her to be adopted and settled with loving and secure parents, than remain in the care system in the hope that I got well.  Except that then, I did get well, and have faced losing her, in sobriety.

I must learn to live with the inconsistencies of Social Services.  I know many women who are alcoholics who have done what I did who still have their children, either because Social Services never found out, or because they decided that despite the problems the children were still better off with their parents than removed from them.  When I am crying “it’s not fair” I am trying to wriggle out from what I have done – and what I have done is extremely wrong and damaging to a young child who was powerless to escape from it.  Children cannot and should not have to wait until their parents get well.  This is the spirit of the law in this area of child protection and it is true and it was true for my daughter.  However I do want to also highlight that she never missed school, was always fed and clean and bathed and we read stories, we spent endless hours making things, and there had been no other concerns at any times, Social Services could find no emotional or psychological problems, apart from the normal distress caused by separation from her mother.  There is an assumption that children who are removed are unclean, unfed, absent from school, and there are concerns from all who encounter them.  Not always.

I must also grieve in silence and in private. The world does not want to hear of my grief, the primal wound that results from a mother forcibly separated from her child, because it is an unpleasant story, and I am the villain in it.  And yet I must grieve.  In the midst of all this, I am hurting and I have relinquished the way I had learned to cope with pain, in substances.  I miss her and I love her and this hurts every part of me and some days I feel like it will consume me.  I cry out to God that I am hurting and that I am grieving in the midst of terrible guilt and shame and I can’t sort all this mess out.  This isn’t clean grief – having lost my mum just over 2 years ago, I know that grief too – but that is right, in the natural order of things, because children at some stage should lose their parents.  My mum was young, but still, it is a clean and acceptable grief.  For my daughter these feelings are complicated.

I started this blog prepared to talk about the messy and controversial stuff.  I love my little girl, and I miss her with a pain that is physical, in the way it eats me up, she is lost and she is gone.  I am usually comforted with being told that there will be letters, and I might see her when she is 18 or older, and if she is ready.  That is little comfort.  I had this precious child in my life, and she has gone in the most awful of ways, and the pain seems unending and unbearable.  I am joining one of society’s most unwanted and disliked groups, but I am going to give this process a voice, to bring my shame and grief and hurt out of the dark where it cannot resolve, into the light.  I trust that nothing can separate me from the love of my heavenly Father whilst I do it.  And I hope that this might help someone else, perhaps who is facing this threat.  And as I continue to cry out in pain, in prayer, for my daughter, that she will grow up loved, and if at all possible secure, and healed.  God is able to bring joy and peace from sadness and brokenness.

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Ability…Disability

Just look how far you’ve come…

I have come a long, long way.  I remember… being in hospital, being hoisted by the staff from chair to commode to bed.  Because otherwise I couldn’t get out of bed. The material of the sling harsh against my bare legs, bandaged thickly up to my knees, oedematous with hypoalbuminaemia.  It was probably easier to list which of my blood results was normal than abnormal, and my physio consisted of learning to sit up on the edge of the bed and feel my feet on the floor.  Or rather, feel the feeling of not feeling my feet on the floor.  I was slid back into position with slide sheets – a heavy, back-injuring task otherwise – but I couldn’t just ‘wriggle up the bed’.  And to stay with ‘couldn’ts’ for the moment, I could hardly eat anything, especially breakfast, I couldn’t go to the toilet without a bedpan, I could barely roll over to have the bedpan pushed under me, I couldn’t feel anything below my knees, I couldn’t even wear knickers because I couldn’t put them on.  I couldn’t produce my own red blood cells – the kidneys produce a substance called erythropoetin which stimulates the production of red blood cells, and mine had given up on that job too.  I couldn’t sit with my legs down, because I would faint, as my calf pumps weren’t pumping blood back to my head again.  They couldn’t get blood from anywhere apart from my tunnelled line… but always thought they’d have a try or 20 first.  I couldn’t ever imagine walking around, being independent in any way in a home of my own.

So I admit, as I have to, every time I try to talk about it, that I’ve come a long way.  I really have, and I need it held up to me every now and again to see that, a year ago, I was still in intensive care, though conscious, still anuric, and they’d taken the catheter out because it had become, quite honestly, pointless, and my greatest daily achievements were washing my face, and feeding myself a bit.

But I am still disabled, by deformity, pain, sensory loss, and fatigue.  And I am facing, lately, how much of normal life I can’t manage and how this might be as good as I can get. Not being able to stand for very long is probably more disabling than not being able to walk.  Because, sat down, you can’t reach like everyone else.  To pour things, move things, pass things, assess patients, see what you’re looking at.  No one is on your level, so you end up with this really uncomfortable looking-up-all-the-time feeling.  You’re separate and different.  And so everything has adjusted, to be done sitting, and leaving something in another room becomes a disaster, and so I

Not being able to walk isn’t great, and it didn’t take nearly tripping right over in front of the whole congregation last Sunday to prove that to me – few people can (or will) slow down to walk with you and it’s just not very nice looking at someone who walks awkwardly.  To anyone who has stayed with me for any distance, I’ve usually long-started apologising. which is something between a verbal tic and a craving for reassurance.

And usually “Just look how far you’ve come” comes from someone able to fetch their own shoes off the shoe rack in the morning and doesn’t have to balance every toilet visit against how much pain they’ll have to endure to get there.  Now, I know that not receiving it very well is a sign of something not right in me, because acceptance and gratitude flow from my heart most days without real effort on my part, just the Holy Spirit working within me.  But I do rather think it’s normal to have these times of pain and hurting and frustration at how things are and attempts to cajole me back to grateful acceptance seem intolerable because I feel like no-one really gets how bad and hard and limited things are.  But I can’t say so because it was my final drink that led to this and so I should be in sobriety always feeling gratitude that things weren’t worse.

God the Father can see how hurt and confused and torn I am, God the Son was and is there walking through every step of the pain, and God the Holy Spirit is within me turning me back to God and bringing my broken incoherence into those everlasting arms, comforting, restoring, offering hope again.

How far I’ve come, indeed, to find some stillness and seek God and find that every painful step, in Him, is victory.

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Last year, in ITU

I came to, slowly, gradually, surfacing, with memories of my aunt’s brightly patterned blouse (oh! It was real! – 3 weeks later when she came in wearing it again) and knowing that the door opposite me was where visitors came from, where beds where dragged, and the station to the left was where the staff were, reading and writing about me, but I was in Clatterbridge, in my head, in some sort of medical rehabilitation programme assisting neonates and geneticists and walking horses in water.  I didn’t understand and it was a really heavy sort of consciousness with anxiety crossed with drifting because that was all I could do.  They say ITU hallucinations usually have some root in reality – I know I was being asked where I was, who I was, what had happened, and it seemed really aggressive, because THEIR reality was right and mine was wrong.  I couldn’t speak, except I thought I was or had spoken.  I was busy, and they were just sitting there.  I was out of body, sometimes body-less, but full of consciousness, sometimes completely, bodily, into my hallucination and absent again from the real room of ITU.

I remember the people that came to see me – my sister and my brother-in-law; my aunt and uncle; the then church Rector and his wife – and (or so I thought) all those clinicians I’d worked for that I’d held in high regard, and they had all become Christian Missionaries, that being before the boat, tense but real, when my (now deceased) mum was there, and we stayed in her hotel room and…  I could probably write pages now I’ve started, because this went on for days.  Delusional memory in ITU patients is laid down like real memory.  So unlike dreams which, intense and real, disappear like mist, slipping away faster the more you hang on, this is in the place that the real memories of A+E, and me telling Andy that I could lose my legs, because no-one else seemed to say it, also contains those delusions that took me weeks to get my head round.  Who am I kidding?… I still haven’t got my head round them.

There is an excellent website called http://www.icusteps,org which explains and supports the many issues that it is common for ITU survivors to have, and my hallucinations aren’t anything special, they are in fact entirely ordinary.  But they are mine, and they are unlike anything else, so I don’t know how to explain them easily, and post traumatic stress is a spectrum which I could put myself on if I thought it would help.  The main thing is that I survived, and the terror I experienced slips away with time and with talking.

And maybe I’ll go to one of their drop-ins, but what I’ve mostly found with these specific groups, in which I include AA and BDDG among other support groups I’ve experienced, is that I don’t want to be pigeonholed. I am an ITU survivor, an alcoholic, an addict, but I’m also a child of God and that is my primary definition.  So what I need, mostly, is to be with my church family, as children of God, covered with the blood of the risen Lord Jesus Christ.  I can bring my terror there and that’s where the talking and time do their work, in healing.  I’m not knocking support groups – they do a lot of good and at times they ARE really useful and necessary.  But I do think the more I find labels for myself, the less I am attached to that important label of one saved by grace.

I didn’t realise this was where this piece was headed but I am only learning, to write and to be guided by the Spirit.  Please do talk to me – especially if you have experience, questions, disagreements, or have been challenged.

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Laid low

I’ve been forced to retreat to bed the last day or so with a water infection combined with a viral URTI.  I’m talking like Donald Duck and even my walking gets affected by its reduction to to/from the toilet with zimmer frame.  You would think, after a year spent far more in bed than anyone would like, and with myriad limitations, I would be used to how this feels, patient and calm, peaceful and sure.  But it is not so.

I have certainly grown, because I’ve been forced to, not because I am especially good at it, in patience, and in the peace that comes from knowing I am right where I should be in God’s will for my life.  But I am far, far from where I should be.  I doubt myself.  I disbelieve my need to be in bed.  I want to be doing.  I start using that word “should” a lot and endless “I’m sorry”s.  There may be some superwoman who can write job application forms and blog posts and make financial decisions when all the air spaces in her head are full of snot, but she is not me.

I AM affected more by simple infections these days.

I DO have a huge dip in energy after “big” things – and our Saturday night celebration was a “big” thing.

The two together, and I am either in bed or horizontal in front of the tennis on the television, finally being still before the Lord, catching up on a bit of reading (‘A new name’ by Emma Scrivener – really highly recommended) and accepting that I AM ill and can’t do any more.

What I had planned to do during this stretch of “a year ago I was in hospital” was try and talk about what it was really like, the stuff I hold back, telling amusing anecdotes of wandering ladies and the triumphs of standing and showers, leaving out the painful undignified stuff.  I’ll do that another time.

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