I know I haven’t been to enough AA meetings by the way I make my entrance: a little too rambunctious – too stressed, too comically coping, too animated in my gestures. Somebody familiar asks me how I am and I unload a litany which, on reflection, was just not, well, authentic. That is not to say that the stresses aren’t on my mind, but I recognise (after I’ve spoken) that they aren’t as relentless as I’ve just made out. That isn’t to say that they aren’t a constant; but they are punctuated with periods of peaceful harmony with my 6-year old son, Daniel who is, when all is said and done, the light of my life and the best thing that has ever happened to me.
I deal with my demons by writing about them; my narrative is my coping mechanism. By setting them down in words, I maintain a sense of control; and the worst thing that can happen is to have that mechanism taken away, as the brain injury did, for quite some time. I battled on courageously (this is very true) and tried to write it down, despite my hard drive having been tampered with to the point of being untrustworthy. How could I trust the judgement of a thing that, in the event of some trauma in a part of itself, had had to re-wire its messengers to remain able to continue to function? All over my brain, there were little glitches, unused to the task being assigned to them at that moment, throwing up their hands and saying, “I’m sorry, I’m just the Temp”
This made for some extreme difficulties when it came to navigating life. And it was this, looking back, that was a turning point for me. Having lost my coping mechanisms for a long time, I realised how much I had taken them for granted in the first place and – this is important: I could be extinguished in an instant, so it was vital to pick up my tools, however imperfect they may be, and use them since, throughout the trauma, the desire to extemporise remained intact.
My son was diagnosed last year with Autism Spectrum Disorder. This can be extremely hard-going as, especially when he is feeling tired and a little under-the-weather (both of which are the case now), any attempts to impose discipline light a kind of touch-paper or fuse which erupts in Oppositional Defiance Disorder. This can also parade as Pathological Demand Avoidance. In short, in response to an anxiety that even he can’t consciously pinpoint, let alone process, brought about by any request, demand, authoritative tone of voice or insufficient attention being paid, Daniel will impersonate the sort of spoiled brat that total strangers would line up to take a swipe at.
If these behavioural ‘quirks’ aren’t intensively dealt with at the earliest point of intervention possible – including his age and when the behaviours start to manifest – then he might need a Police escort when he is bigger. As it is, he resembles the sort of belligerent drunk person who, at the end of the night, must be arrested for his own good and for that of the public. And these tendencies repeat with an obstinate monotony that never fails to send my stress-levels (and concurrent fatigue levels) through the roof. Only last year, when Daniel started Primary School, his behaviours were so challenging during the first term of the Reception year that another woman, who I shall only ever refer to as BTM (Bulbous Troll Mum) and never by name (lest she eat me alive) attempted to mount a smear campaign against him because her son was “terrified” and didn’t want to go to school. Apparently. Fortunately, this lie was exposed simply by how well the children got on, even when she stipulated that her son and his friend should be kept away from my son, so awfully did Daniel behave. Thankfully, it all blew over when all the children continued to hug each other on sight and exchange fond greetings, and the other mother whom this woman had co-opted in an attempt to have my son excluded from the school was clearly no friend of BTM’s either.
While this is almost comical in retrospect (I was having a breakdown at the time and will come to that later), it does show that my son can inspire wariness in others, and even antipathy when those people aren’t the most compassionate souls to begin with.
Obviously, I wonder whether the anti-depressants I was on whilst pregnant have caused him any harm, but I suspect that there is little proof – I was told, at the time, that Fluoxetine poses low risk and I halved my dosage from 40 to 20mg per day at the time. There was also the birth, during which both Daniel and I nearly died. Labour had to be induced due to my waters not breaking, but setting up a slow and steady trickle, which meant I had to sit on towels for 12 hours or so, and then go in to be hooked up to a monitor and an antibiotic drip for Daniel because the ‘seal’ between the world and my womb was broken, which made him vulnerable to infection.
If I hadn’t been in the pretty sub-optimal mental state in which I was at the time, and a first-time mother, I would have insisted on a caesarean section early in the proceedings. But I was monitored for another 12 hours or so, and then, when already exhausted, my labour was induced. I cannot overstate the volume of the horror, and the pain, of that awful night six years ago. I say awful; it was amazing – my son made it in the end. But such was the trauma that, even last year, on Daniel’s sixth birthday, I was semi-paralysed with grief during the day while he was in school, simply trying to hold myself together. That evening, at dinner, when my closest friend asked me a little about it in passing, I fled into the loo in tears.
There is something else about me – I am a recovering alcoholic and drug addict. I make the distinction here because, as my AA sponsor points out, alcohol is extremely difficult to become addicted to. You really need something in your mental make-up that renders you powerless over drinking despite a litany of evidence that this is absolutely not going to be a simple case of letting-off-steam or one boozy night out. People can indulge for years in piss-artistry without experiencing the kinds of problems that I did, both when I drank and when I quit. I needed a lot of help. My Father is one example of this. His drunken escapades make my own boozing look like a walk in the park, and yet, when I went into rehab, he quit drinking and actually enjoyed the exercise. Almost eighteen years later he remains a non-drinker and has, as the saying goes, never looked back.
My mental wiring, however, remains fairly high-maintenance. As an alcoholic in recovery, my ‘cure’ for loneliness or feeling at a loss is … isolation. I am only just on the cusp of seeking support from other parents of children on the Autism Spectrum because, well, I’ve been trying to sort it out myself. And finding out that, no matter how many books I read about the condition, I am not a psychologist. I’m a Mummy. And, owing to my wiring, I feel fearful about joining a support group made up by other parents because – thanks to my congenital low self-esteem – they might find out that I’m doing it wrong.
I found some old artwork that I made during my Art Foundation Course; boy, did I need the therapy: I was in tremendous pain and I was pulling out the demons, bit by bit by bit. Looking at it now – February 2017 – I think, I have got to tell my story. It just seems so obvious to me now that I have always had these issues; these dark demons that I have sought to silence or satisfy or exorcise entirely throughout my life. And I cannot sit in silence any more. I never quite fitted in, and never felt that I did; then, when brain injury exempted me almost entirely from the mainstream population, I had to get used to living in the shadows, for that is how it felt. Looking back, I think I always felt I drifted in and out of those odd shadows on the margin of what people who were either less troubled, or untroubled by mental health issues, were doing.
I have never been able to feel comfortable in my own skin. I have always tried to ‘unzip the banana’ or shrink it or mark it somehow to wear my heart on my sleeve: advertise that I am just not standard issue.
I do not relish the prospect of an appointment with the Job Centre on March 23rd to discuss my having been placed, after medical assessment, in the ‘work-based activity group’. This will be interesting. The last encounter that I had with the lady allotted to me was unpleasant in the extreme. While I understand that the DWP is perhaps not supposed to boast ‘people skills’ – after all, the government doesn’t want people to get too comfortable being unemployed and not contributing to the GDP in any ‘respectable’ way, I also feel that some compassion is required.
Here is why:
“Two thirds (66.4%) of people in receipt of ESA had thought about taking their life, almost half (43.2%) had made a suicide attempt, and a third (33.5%) reported self-harming, indicating that this is a population in great need of support. People in receipt of other benefits also had higher rates of suicidal thoughts, suicide attempts and self-harm than those not in receipt of these benefits”[1]
My own suicidal ideations have decreased markedly since January 2016 now that I am on appropriate medication. Self-harm ideation has not decreased but, as this has always ever been the first thought to occur to me since I was about 15, I am almost blasé about opting not to carry it out. I last attempted to self-harm a couple of years ago, when I was prone to mini breakdowns and finding, not just single-parenthood, but life at large, challenging.
The DWP Has Much To Learn
When it comes to interviews with Job Centre representatives, what can I say to describe, in a nutshell, the difficulties that I have experienced over the past 9+ years? This is a bunch of people who do not strike me as in the least bit approachable.
I have, last year, been penalised financially for an honest mistake (of which more later); I have been treated like an errant child, and these smug little mechanisms of a social-regulation engine which, let’s not forget, has caused the death of many disabled people made, by ATOS, to go to jobs they could not physically manage to turn up for, have mocked and irritated me. It has, at times, felt hideously Kafkaesque.
I get my feistiness from my Mother and I am so grateful. It was this stubborn refusal to lie down and die that aided my recovery from the brain injury since, at many points, I felt abject and suicidal. I’ve never had much self-acceptance or self-forgiveness – that’s my alcoholic wiring – so, home for a brief period some time after the brain injury to see how well I coped, I sat by the hearth in my old flat and held the whole sorry situation against myself. “You cunt.” I hissed, detesting myself entirely.
My self-opinion was so low that I wouldn’t have put it past myself to have created the whole situation deliberately just to be a drama queen. This has been the mechanism, over the years, by which my mind’s wiring leads me to sabotage good situations because, well, I don’t deserve them. Or so I have always believed. Until now.
Life has a funny habit of dealing me a large slap upside the head every once in a while. I say this because there I am, floundering along feeling shattered and overwhelmed a few months after recovering from a mild nervous breakdown, but grateful to be on medication now that my son is on the cusp of an Autism Spectrum diagnosis when, out of nowhere, I receive an email from a Facebook friend. Well, I don’t know who befriended who, to be honest, but there is something terribly effusive about his email and I’m not exactly fighting suitors off with a shitty stick. I pick up the phone and say, “Hello, yes, I remember you; you’re also in AA and you pop up every so often in a meeting I’m attending” or something. He sounds rather nice, in a tame, well-spoken-but-not-brusque way (although my best mate is a total posho), and I think, ah, how lovely to make a new friend.
I am inundated thereafter with photos, text messages and so on and, well, I am flattered. Like I say, I could do with a lift: the tribulations of single-parenthood when you’re medicated for depression and have a child who is, at this time, diagnosed with long-suspected Autism Spectrum Disorder do take their toll.
17th March 2017
An item on Woman’s Hour on Radio 4 this morning has got me excited. It is about the creation, in workplaces, of a Mental Health First Aider as part of the Social Health government agenda. This sounds most encouraging. Throughout my adult life, I have struggled to establish and maintain a career, although I have made tremendous – if misguided – efforts.
I was invalided out of work 9 years ago, when I sustained a Traumatic Brain Injury as the result of a road traffic collision. A letter from the DWP stated that I was entitled to receive Incapacity Benefit (as it was then known) “indefinitely” – a term still used as, in my most recent Disability Living Allowance review letter, I am “entitled to: middle rate care component for help with personal care, indefinitely”.
I became a single parent as the result of a difficult relationship when my son, Daniel was nearly one year old. I experienced enormous mental and emotional difficulties but, with the help of my mother, an eating disorders unit and my GP, I became able to undertake 5 hours of voluntary work per week. In the last 6 years, I have experienced several smaller breakdowns (following one, I sought assessment for Bipolar Affective Disorder when my friend, Jenny, mistook my symptoms for those of her sister’s long-since diagnosed depression) and one larger one in November 2015. Following Daniel’s 5th birthday I found myself unable to function and, in a grim toss-up, opted to telephone the GP surgery rather than the Samaritans. This paid off wisely, although it was not without difficulties in the form of a GP whose bedside manner left a lot to be desired, and it was only with the help and recommendation of my closest friend that I was directed to seek private help, which I did using some of the ‘compensation’ money I had received after the brain injury.
Thank heavens for posh doctors. This one, a highly-regarded neuro-enterologist and psychiatrist, declared, after hearing my history, that the brain injury had affected an already “vulnerable chemistry”. This made sense of my struggles since childhood, and I now take appropriate medication in appropriate dosages since Professor Libby prescribed for me in late 2015. It is now that I seek to help break the stigma that surrounds Mental Health Issues, which are gaining increasing currency in the media and in general culture, thank goodness.
For much of my life, I feel close to exhaustion in that psychologically highly-strung way that wonders whether the next thing (large or small) will be the last straw in guaranteeing my total dissolution and need to be sectioned. In my experience, however, you really have to go some in this country to get that far, or that sort of care which, in itself, is subject to increasing scrutiny due to the large volume of tragic disasters of insufficient care. Perhaps this is why the Mental Health First Aiders are an idea more widely mooted nowadays. In the wake of the breakdown in November ’15, fearful overthinking (panic) often sets in. Daniel was diagnosed in August 2016 with Autism Spectrum Disorder which, although a shock, wasn’t entirely a surprise since prior behavioural challenges had already taken their toll.
While I understand the role of the DWP in striving to support a population capable of producing a good GDP and with good self-esteem thanks to gainful employment, I cannot help but regard my ‘mandatory work-related activity’ appointments as an imposition, and I’ll tell you why.
Last year in February (2016) I failed to make it to an appointment that had been scheduled with the ‘employment coach’. It was during half term and, in the wake of the breakdown, my medication was slowly taking effect – so it was, I felt, an understandable mistake. However, traumatic brain injury recovery, breakdown and single parenthood were not deemed, by the DWP, to be a “good reason” for having missed the appointment – even though, at the time and when I realised my mistake, my ‘employment coach’ and I had rescheduled the appointment in a telephone conversation. An open-ended sanction was therefore placed on the ESA money that I had been receiving.
I didn’t discover this immediately because I had tried, by joining a temping agency, to do a week’s paid work to help me to gauge my energy levels and to determine whether I really was ‘unfit for human consumption’ or a deadbeat, as I often critically dismiss myself. I had been told (incorrectly as it turned out) to sign off for that week and, since my case would be held open for a grace period of up to three months, to sign back on again when the work was finished. How wonderfully supportive, I had thought. The week of working nine-to-five had indeed sapped my energy levels, and had my mother not had Daniel to stay with her, I could not have managed.
I was very surprised, however when, after spending what felt like a year on hold to the DWP, I was told that I could not have my benefits reinstated and that I would have to become a new claimant again. Apart from this meaning the reversion to a lower amount (losing increases gained over years) I was perplexed. What had in fact happened, it turned out at a meeting in the Job Centre, was that a sanction had been placed on my benefits since the missed appointment in February. When I expressed my surprise and dismay, a flippant remark distressed me deeply. One of the interviewers asked me what strategies I have employed, since the brain injury, as aides-memoire. “I write things down,” I told her, “I have notebooks and calendars to help me to remember.”
Now then, as a parent getting over a breakdown and trying to concentrate on adding dates to calendars whilst attending to a child’s needs, not to mention the volume and the frequency of distraction, I quite often get things wrong. For example, at the start of this Spring term, it was a complete surprise when other mums in the playground at collection time revealed the existence of the new homework grid, and the urgency of the deadline that day. When I say I get easily tired, I am not kidding. The insouciant smirk on the face of the Job Centre rep as she chirped, “You shouldn’t have missed the appointment then” reduced me to tears.
Financial hardship had already set in; teachers were suggesting that my son be assessed for Autism, and the cheek of someone who has no idea about my journey, especially since the brain injury – it’s a long walk back to a more exaggerated, or more deflated version of who you were beforehand, it turns out (it exacerbates pre-existing neurochemical imbalance), was about the final straw.
“How dare you.” I hissed through my tears. Characteristically, I don’t remember what else was said, but I do recall stomping across the green patch of common land opposite the Job Centre shouting words that turned the air of Weybridge blue.
With the help of my closest friend, I recovered my spirits and wrote to the Secretary of State for the Department of Work and Pensions at his constituency address and at the Houses of Parliament; the management of the organisation who won the tender to manage the ‘journey to return to work’ for my area (G4S, of all companies!), and all my local MPs. I received, in due course, an apology from the DWP on House of Commons letterhead and a note from Dominic Raab thanking me for contacting him and urging me to get in touch if I need any further help. Quite fucking so.
And so, it occurs to me to set down precisely what I have come through – or as near to precisely as I can manage – up to this point. A growing culture, it would seem, about Mental Health awareness inspires me to speak out.
[1] file:///C:/Users/user/Documents/fundamental-facts-about-mental-health-2016.pdf – 2016, page 26
ASD: on being a special-needs single parent 