It has been years since Hell took up residence between my ears, and it is one of its peculiar quirks that I never quite get used to it. When I am at a low ebb, all the negatives join up and crowd in, each one wanting to wield its particular branding power. The prospect even of beginning to articulate one aspect of what has made life so tough for sixteen years is overwhelming, since no element stands alone, but is woven into a wider, intricately hellish tapestry.
After three years of therapy, I have begun to be able to be honest about episodes when they occur, and not simply to take refuge behind Candy Crush and other dopamine-generating hiding places from the real world. Events continue to occur, but now that I am anaesthetised the pain is softened slightly. This became a coping mechanism early on after I sustained the brain injury, within the first three years post-trauma.
The film Hellraiser, which I loved when I first saw it as a teenager, came to extemporise my experience post – brain injury, since it was indeed another dimension opening up, and one from which I cannot ever quite escape since that December evening in 2007.
It is therefore both a soft jibe at myself, and an affirmation of the strength that I have found within, that I have taken the surname Cenobite online.
Two themes characterise my life over the last sixteen years: grief, and respite. As the mother of a child with special educational needs, I was sold the myth quite early on that respite was available from the endless battles, which were considerable with my child as endless repetitions of instructions and with rephrasing demands into requests took years; the results were mixed. Generally speaking, people – including childminders, play scheme staff, nursery, reception and school staff, members of the public and other parents – judged my child’s behaviour harshly and looked askance at me in shops, restaurants, supermarkets and at the school. One parent, when my son was in Reception, mounted a campaign against my son after a couple of quite natural and insignificant (in my view) altercations with her son. Children in Primary school are bound to fall out; some of them are bound to display ‘challenging’ behaviour; but the behaviour of parents was by far the most bewildering for me.
At this point, I had had several assessments for different types of depression following two breakdowns, one lasting approximately a week, and the other resulting in two months’ absence from the voluntary job from which I gained a great deal of self-esteem and sense of purpose at a time when life seemed almost exclusively to revolve around very young children and their cliquey, as it turned out, parents.
The doctor whose recalcitrance when I asked for a referral almost cost my life remains employed at the practice and, as it turns out, is named on my prescription dispensation slips. Has this given him an attack of conscience? I doubt it; I wonder why the guy who tried, through omission, to kill me remains both employed and assigned to my medication dispensation.
Battles, as I say, have been considerable and, as it transpires, never-ending. Perhaps one of the cruellest cuts has been, and continues to be, the resistance displayed by local authorities and even schools whose job it was supposed to be to understand and to provide opportunities on a par with those provided in the mainstream for neurotypical children, but who have in fact obfuscated any chances of progression for my child as I have sought them.
My son was excluded from mainstream school in 2018, at a review of his Education, Health and Care Plan (EHCP). In an attempt to shield him from the isolation that I feared was looming, I invited lots of children and their parents from the mainstream school to my son’s eighth birthday party, and though some of them attended, none of the parents (except for one fantastic, compassionate woman) stayed in touch or even checked in on us.
We were not okay. I was deeply affected by the lack of support from local authority and educational agencies; the case worker was dragging his heels and, in addition, schools which were supposed to provide education and support for children with special educational needs, as well as mainstream schools, were unwilling to assess my son.
Grief has featured to an enormous degree in my life post-brain injury. Firstly, it was overshadowed by other factors which became apparent a year after my accident. My stepfather was diagnosed with Primary Progressive Multiple Sclerosis after years of finding it difficult to balance, leading to him giving up golf and snooker, which required precision that he found, increasingly, he lacked. It had been suggested for some time by then that some sort of vestibular disorder – something about the Eustachian Tube in his inner ear – was playing a part and, by the time that he and my mother returned to the UK after ten happy years living in Portugal, he had earned the nickname of “Large Hadron Collider”, which progressive scientific tool had gained acclaim by then.
At the end of 2008, his Primary Progressive Multiple Sclerosis diagnosis came from a Neurologist and, having by then had multiple sessions with these people myself in the wake of my accident, we came to equate them with more curses at the time than blessings.
Two things ran concurrently: the compensation claim, which I had been advised to pursue and which brought a deal of misery from legal professionals, and my stepfather’s diagnosis and increasingly evident decline in health. I was always, to an unpredictable extent, going to get better or at least, live well in spite of the injury; my stepfather, however, was given a limited range of options which would, at the very most, delay the onset of the inevitable immobilisation of pretty much everything. All of who he was would drain away into a state of inability to do the slightest thing. Two choices: sooner, or later. This was a bleak prognosis.
I was doing very well as a cyclist, and was achieving greater times and distances between destinations: the brain injury association support group in Elephant and Castle, the outpatient support at the neurorehabilitation centre in Wimbledon; the Buddhist Centre in Croydon, AA meetings around south west London. Upon diagnosis of my stepfather, I cycled from Clapham Park to Esher in Surrey, via Kingston, with two heavy volumes about MS in my backpack, and stayed overnight one Saturday because two hours of cycling was a lot of effort. I was delighted, however, that my cycling might be getting back to speed as it had been in the days previous to the injury, when I had cycled to work in Mayfair or the South Bank and back, and between an art exhibition at the end of my Masters degree in London Bridge or thereabouts, and friends’ places in Wandsworth, for example.
Following the injury, I became a super-cyclist; it gave me self-esteem; I was better able to balance on a bicycle than on my own legs, and it generated endorphins, which were essential for me to feel okay.
My obsession with calories and with burning them goes back a long way and was one of the first things to ‘recover’ after the injury; several months after discharge from hospital and from my parents’ care, I went back to trying to live on half a bag of peanut M&M’s a day, and spending as little on food as possible. The Tesco £1:00 pasta ready meals were a particular favourite, since they provided energy for cycling, and vegetables were present to some degree. If I cycled further I permitted myself to eat more, of more ‘lavish’ types of food: fruit loaf slices, flapjacks or granola bars.
There is a book by a Dutch neurologist, which talks about something in the brain called the infundibular nucleus; located in the ‘older’ part of the brain around the stem, cerebellum and hippocampus, this controls our appetite.1
I wonder how much this part of the brain remains responsible for abiding behaviours and difficulties, injury notwithstanding. It is almost seventeen years since the injury at the time of writing, and my fixation about calorie-burning and body shape remain as prominent as ever; they have metamorphosed, however, into a fitness addiction, which enables me to eat, more or less, with impunity.
Cycling also gave me and those around me the impression that I was doing well; that I had bounced back better than before from an injury which had required the induction of a coma for approximately 48 hours immediately afterwards in order to prevent further bleeding and additional damage.
“She weighs eight stone soaking wet,” said my my mother at the time of the accident, meaning that I didn’t look like the most robust candidate, and that it was enough of a feat that I had survived being thrown around in the first place.
What I didn’t realise, in my puny foggy-headedness and then post-partum pudginess, was that there was more to it than ‘just’ coma and intensive care at the start. Though lucky to be alive, it seemed, I felt anything but. It is important to note here that, even before my pregnancy and while I was still trying to build a sense of myself after the injury, features came into being which were imperative to my state of mind a long time post-injury.2 For example, after I had accepted the suggestion by the brain injury support group facilitator that I talk to other members about art, and maybe encourage some people to try some drawing, I remember cycling home after that session dreaming of drinking bleach in a bid to snuff myself out. I had no confidence, no sense of familiar ‘self’; the artwork had been done by someone else, and perhaps she had gone forever. I couldn’t very well remember her, anyway, and I felt desolate, like an empty vessel that could never be filled again.
“Moderate to Severe Traumatic Brain Injury is a Lifelong Condition … Long-term negative effects of TBI are sigificant.”3
Great. It was explained to me by the solicitor whose job it was to oversee my compensation claim that people often found, after a brain injury, that their confidence was gone in areas in which they had previously enjoyed a high level of confidence and achievement.
He was later to prove entirely untrustworthy when the person or people supposed to retrieve my accident report lied that it was nowhere to be found and, when I gave him the name and telephone number of the Police Inspector who had confirmed that the accident report remained where it had been filed to begin with, the solicitor said that he would have to charge extra as he would have to go and retrieve the report himself. To say that I was chagrined by the possible disappearance of a near-extinction about which I had no memory would be an understatement. Still trying to come to terms with what had happened and its likely and actual effects at the time, I was not predisposed to have the healthiest, most balanced response to this obstacle.
I may have dreamed this, but I think I sent the solicitor a furious email about this seeming obfuscation, and copied in my father, who was helping me to pursue the claim as I did not feel able to process very much. I think my father sent me a reply in which the phrase “defamation of character” was used to describe my behaviour in writing the email, and I recall vaguely that the sense that I was some sort of pariah began to take root.
At around this time, the sense that, having sustained a brain injury, I must not behave as though I had one, gained traction. An early appointment with a psychologist resulted in my having been discharged for being “too angry” in the words of, I think, the Occupational Therapist at the time. My GP was blasé about the whole thing and prescribed fluoxetine when I said I was finding it increasingly difficult to get out of the house or motivate myself to do anything; no-one seemed particularly alarmed or bothered by the injury so much as by my behaviour, and life went on in a most bewildering fashion.
https://my.clevelandclinic.org/health/diseases/8874-traumatic-brain-injury
At that time, in 2008, when I was staying with my parents, into whose care the hospital had discharged me, my stepfather drove me to AA meetings and collected me at the end of them, since this was the coping mechanism, they said, that I had had for almost nine years.
Looking back, depression was one of the first things I noticed; there were, of course, impulsive decisions, which meant that I got into debt. If I had been told about these things, I certainly couldn’t remember them. Imagining that this situation was only a temporary ‘blip’, I suppose I thought that I would one day go back to work and earn enough to be able to pay off the debts. The suggestion that I make a compensation claim was first made by a medical practitioner, who couldn’t guarantee when or if I might make a full enough recovery to return to paid employment. More than that, I cannot recall.
Opening my mouth to ‘share’ in AA meetings became a somewhat alarming ‘occupational hazard’; I was crying out for help, I imagine; I was angry, probably verbose, and I think I swore a great deal. I don’t remember exactly what I said, but people were not supportive. One person, it turned out, had gossiped, saying to another member, “I can’t stand her reaction to her brain injury.” When I found out who it was and told them, they were as unfazed as anything and, I suppose, must have thought I ought to pull my socks up or something. As though that was something available to me as an option. I have since tried, over the years, to do this and to ‘carry on regardless’ as though it’s going to fade into the background but, as I have already said, Hell had taken up residence between my ears, and has provided the backdrop for everything else in my life ever since.
My stepfather’s PPMS diagnosis galvanised the family in several ways: my mother and he travelled to Poland for a stent or some form of stem cell treatment; the physiotherapist came weekly, and was dismayed to find that he was not attempting the suggested exercises and food plan; various falls meant hospital visits and admissions were necessary and, over time, his mobility and continence decreased markedly. My mother’s ‘Flight’ response meant that she went away on holidays in an attempt to duck the inescapable; this continued even when he had to go into a care home, and I was left with my son, my stepfather and the frequent visits, and the growing phenomenon of school difficulties related to my son’s autism.
People will tell you that the greatest improvements – the most noticeable ones – are made in the first two years following a ‘severe’ traumatic brain injury, and by the end of 2009 another unfortunate exchange with a psychiatric nurse, as it turned out, had left me feeling alienated and resentful. Following a visit to my GP with my son’s father and a list of all of the difficulties that I was having, the GP referred me for an assessment upstairs in a dingy building in Streatham Hill, the purpose of which was unclear to me at the time, but it had something to do with identifying what kinds of support I needed.
The practitioner had a medical student with him, and asked if I minded them being present. I did not. General questions about previous hospital procedures came about, and I declared that, at the age of 17, I had had a tonsillectomy. The medical student asked, “A what?” and before I knew it, I had enunciated, sharply, “The clue is in the title: a tonsil -ectomy.” He seemed not to understand, and I remember feeling, at this point, that this was something pretty basic, which everyone ought to know, but especially a medical student. It occurred to me in a flash that nobody seemed to know a damn thing anymore, and that the world would soon be filled with medical practitioners who couldn’t tell an arse from an elbow.
I raised my eyes to Heaven. “Fucking hell …” I muttered to the ceiling, feeling desperate, pretty bereft. Hopeless, in fact.
“We do not tolerate such language,” admonished the psychiatric nurse; “It counts as abuse, and we do not tolerate abuse.” I was blindsided by this, as I hadn’t been talking to anyone when I had sworn as an expression of hopelessness. I didn’t understand why I was being scolded, and felt that this was another example of the lack of support towards people whose brains had been injured, as it served as a sort of continuation of the jokes and dismissive comments that I had received in AA meetings. The world had, for some time now, been a hostile and unfriendly place; it was impossible to articulate what I felt and, when I tried, my words were met with laughter. For example, I could remember saying, in a meeting, “I feel as though I don’t quite exist, as though I’m not quite real, and I wonder if I’m invisible as well as invincible – could I walk out in front of a speeding car? I wouldn’t dare, though, in case I am here after all.” This had been met with mirth from the assembled group, and I remember thinking that, in fact, it wasn’t funny at all. It wasn’t funny to walk to the supermarket with very little peripheral vision early on after the injury, and find that I was so overwhelmed by the volume of, say, tea bags available that I wanted to curl up and die. I now know this to be something called neuro-fatigue, or ‘brain fog’ – which is the brain getting tired of processing information, be it visual or auditory or so on, very quickly. I countered ideation with logic in those moments: “I came to buy tea bags; we can die later” and grabbing whatever box was nearest.
Sitting in this dingy upstairs room in Streatham, being lectured by someone I had never met before, struck me as ridiculously harsh, and I had neither the wit, nor the presence of mind, to be able to say, at the time, that I wasn’t swearing at any body; it was an exclamation of despair and not aimed specifically at anyone in the room.
I looked at this man. “You are a fucking idiot.” I said. The session was terminated then and there; he said that he had been a psychiatric nurse for 20 years and that he had never been so insulted.
Looking back, he – and the doctor who wouldn’t care if I was dead – hadn’t received the advice that you are given when your child is diagnosed as having autism: “Don’t take it personally,” people say, “Generally speaking, the more challenging the child’s behaviour seems to be, the more it is an indication of their distress. They need you to meet their chaos with calm, as they are lost and puzzled most of all.”
However, the Hippocratic Oath comes to mind: these people seem not to have paid attention to the detail:
” to prescribe only beneficial treatments, according to his abilities and judgment; to refrain from causing harm or hurt; and to live an exemplary personal and professional life.”4
I have directly experienced unpleasant and inappropriate attitudes towards me by medical and psychiatric ‘professionals’ since sustaining the brain injury. It has meant that I do not trust NHS medics in particular; they have neglected my case, fobbed me off, criticised my language as though laying claim to the moral high ground. I have also experienced this in the area of special education, local government and agencies who purport to provide support. When you take a person’s behaviour personally, as directed against you, rather than to accept that it is an expression of that person, pupil or patient’s difficulties, you are a narcissist. In that case, why are you doing the job?
If you want moral high ground, let me tell you something about me: I am a highly educated person who has worked, throughout my recovery from addiction to drugs and alcohol, eating disorders, and other trauma-response examples of lack of self-worth stemming back years, because I do not want to perpetuate harmful patterns by handing them to my child. The buck, quite simply, stops here, with me. Over the years since brain injury, I have fought to develop and recover the coping mechanisms that the injury took away. I continue to work hard to keep anorexia, bulimia, self-harm by cutting, and suicidal ideation at bay and I do not believe that stigmatising these things has done anything other than keep me in a state of shame and isolation that I do not deserve.
Despite the ‘advances’ in discussion about mental health and illness in books by such people as Ruby Wax, Bryony Gordon and many others, the stigma continues. You can hear it in the way people describe having mental-health difficulties; they tend to say, “She’s got/I’ve got … mental health issues“. I have been and am sometimes mentally ‘ill’. Or perhaps I am mentally and emotionally drained in the face of such an unending and relentless tranche of resistance, prejudice, false morality (narcissism) and being ignored.
In my bid to deal appropriately with my anger, which does make me want to swear loudly and commit criminal damage and grievous bodily harm, I have gone to AA meetings; meditated; taken up Thai boxing; I have run, cycled, lifted and AMRAPped my way through the miasma of shit. When the going has got tough, and it has on so many occasions, I have gone to the gym or done some sort of physically effortful exercise in order to combat neuro-fatigue and give myself a fighting chance of making self-esteem.
In all of the years that I have been in receipt of benefits because, after the brain injury, I am entitled to Disability Living Allowance (soon to become Personal Independence Payment and, doubtless, get delayed and reduced in the transition, which is only re-naming, but which exacts a pound of flesh for every change initiated ‘to improve the service that we provide’) I have striven to do better.
Until 2018, I was training to become a fitness instructor because the benefits that I have found since sustaining brain injury almost make it feel as though it’s disappeared, or never happened. I am calm, regulated, alert, socially well-disposed, articulate, congruent; I discovered in about 2015, at a conference about sensory issues in children with autism, that proprioceptive action makes me make more energy, more calm, more confidence, more inclined to stop apologising for my very existence. I was so delighted by this that I decided to share the gift with others, that they, too may find release and revitalisation in their lives. I passed my first training level towards becoming a BodypumpTM instructor in Summer 2018, not believing that, when the Autumn term began, all children would go to school except mine.
When mine did not go back to school that September, I had to work hard to keep my head above water, to refrain from eating, vomiting cutting and even getting wasted on drink and drugs – as I so wanted to do – in a bid to fight for my child’s legal rights.
The SEND Crisis at that time was nicknamed by the head of Ofsted a “national scandal”; a group of women went to the High Court to demand that the provision stipulated in their children’s EHCP was delivered – they lost the case; the scene was set for some of the steepest learning curves that I have ever encountered. During the period between September 2018 and September 2019 (one year, we got off lightly), I was to find out the extent of the recalcitrance, lack of due diligence and accountability in school and local authority alike; I was to find out that referring myself for support through some sort of ‘Early Help Hub’ on the local government web site was almost completely fruitless.
I say ‘almost’; at one point a fat social worker contacted me and visited to talk about mine and my son’s needs. He was here for two hours. At the end, he pronounced that, with regard to my son, he had no concerns as he was clean and fed and his bedroom was clean and vacuumed and nicely furnished. “There are some houses, we joke,” he said, in a mock-confidential tone, “Where you have to wipe your feet on the way out” and smiled at me. I was aghast.
He then proved impossible to contact and, at one point, I had a telephone call from someone in the Redhill office from where he had come to say that he had been trying to contact me, without success. I hadn’t really time to breathe – the MP to whom I had written about this appalling debacle of a situation had a helpful assistant, and another lady with a senior position in another local authority had written on my behalf to Elmbridge, our own local authority. This all occurred at about the same time, and I think I confirmed my contact details to this woman who had ‘phoned me from the Redhill office. I never heard from the fat social worker again. Months later, I sent him an email, saying, “I still need help; do you even exist?” and received an out-of-office auto reply to say that he was on annual leave. He may never have returned, for all I know years later.
At this time, I was also having difficulties processing written information as this led to something I now know is neuro-fatigue, or brain fog. This happens because the brain, having been damaged and having had to go to all the trouble of re-routing commands down different pathways, is still easily tired out by new information. And if, on top, it turns out to be emotionally upsetting information, the brain practically cringes. I can remember starting to read passages on the old mainstream school’s web site, which it turned out were untruths, and snippets of articles online about the predicament of kids with SEND across the country, and feeling almost immediately heavy-eyed and breathless. I know this now to be the shutting-down mechanism of entry to the Dorsal Vagal Space. To “Fight, Flight, Freeze”, add “Flop”.
I spent that year alternately in “Fight” and “Flop”; grateful for the medication that I was on, though timid to approach my consultant in case he said, “Stop it now, you’re doing it all wrong, you snivelling git”. I figured that, if I didn’t know how bad it was (if it was) then I would do better at getting through it than if it turned out to be as catastrophic as it felt.
In the process, I was attending regular gym classes and had certainly found that, together with my medication, it almost made me feel okay. I knew, though, that my mental health felt pretty poor (as per the urges and cravings I have described above); so I approached the GP – a friendlier one at the practice – to ask for a referral to a mental health assessment. This he duly did, and I received an appointment some time hence at the mental health assessment centre in West Molesey that I had visited some years before for an assessment for Bipolar Affective Disorder, when a friend had mistaken my first, more minor breakdown, for a depressive episode of the opposite to the manic variety, like her sister, who was diagnosed when they were quite young. As it turned out, I was not “bipolar”, according to the assessor, I had “just had a brain injury”. Oh, was that all it was …
In 2019, I had been booked for the mental health assessment and then, as it turned out, I had a sports massage appointment after finding difficulties along the way with hip-flexors, calves (gastrocnemius) and so forth, which was helping with my knowledge of anatomy. My son was inconsolable when I left the house, and I came away with his screams echoing in my ears, worried about the babysitter (whom we had had before), feeling like I was messing up my child by abandoning him and, basically, just wanting someone or something to decapitate me outright in a bid to solve the problems once and for all.
The lady who assessed me was pleasant, and hadn’t seen my medical records; the interview was polite and efficient; at the end of it she told me that I could self-refer online to CBT and other therapies available, but that she wasn’t worried. This did not reassure me, as I was extremely worried, knowing my background all too well.
I couldn’t face going home as I felt I didn’t have the emotional capacity to reassure my son, so I went straight to the sports massage appointment and hung around, breathing in the peace and quiet outside the slightly rickety-seeming sports club at the top of the local racecourse.
The woman who greeted me was someone I had never met before. She introduced herself, and said that she had cured herself of Chronic Fatigue Syndrome using EFT.
“Tapping?” I gasped; I hadn’t even thought about that for several years. Yes; tapping.
All of a sudden I remembered the ‘God Box’ on a high shelf in the garage; containing an opaque orange drawstring bag, inside which, folded neatly, was ‘the round’ that I was shown some years ago by Brenda, a healer in Forest Hill.
I visited Emily several times for therapeutic massage; freeing up blocked energy, removing layers of defence sometimes and showing the chaotic discomfort, the flotsam and jetsam that lay beneath; at times it felt like looking into the wreck of the Marie Celeste, or the Titanic, cluttered with indistinct shapes and murmurs, some blood-red and tasting metallic.
On this occasion, however, when I went home I fetched the God Box down and felt an immense relief when I saw the little drawstring bag, the folded paper inside. I picked it up; it smelled vaguely of incense, something of the webs of energy in the air which surrounds us and flows through us. I retreated into the downstairs loo (my brain remembered this as a place of refuge in a former life) and tapped the round.
I suddenly became aware of energy within me; as though I had woken up all of a sudden. I saw that it wasn’t my child I needed to fear, but the greater barriers which came to crowd us in; I saw suddenly an opportunity to spend time with this precious person who almost didn’t make it into life. I reflected, briefly, on the traumatic birth and saw: I got the gig. This boy, nicknamed ‘Zen baby’ by the monks in the Buddhist Centre when I was pregnant, had chosen to incarnate; after two long minutes, he had taken his first breath outside my body; he was meant to be.
Although the difficulties continued, my allegiance was renewed, to this boy, whose life, infinitely precious, I will fight with every bone and every breath for, for as long as I shall live.
- We Are Our Brains – Dick Swaab – Penguin Books 2013 ↩︎
- http://www.cdc.gov/TraumaticBrainInjury
↩︎ - http://www.cdc.gov/TraumaticBrainInjury ↩︎
- https://www.bing.com/search?q=hippocratic+oath&filters=ufn%3a%22Hippocratic+Oath%22+sid%3a%22f919313e-2e63-8d56-459b-861a7ffe6e6b%22&asbe=AS&qs=MB&pq=hippocratic+&sc=10-12&cvid=DC0377B04E6E433E8CC5381CD4874E8B&FORM=QBRE&sp=1&ghc=1&lq=0&ntref=1 ↩︎
Capital Punishment 