‘Happy Birthday. Don’t go joining that stupid club.’
Welcome back to The Disinfectant Project. I am delighted to return for the first time in 2019 after dedicating the last year to finishing my English degree. I am writing this at the subsequent crossroads; in the space of a few weeks I finished my degree, went to Australia for the first time in years, and celebrated my twenty-seventh birthday. It marked the end of a ten-year journey to this moment of triumph, to be mercifully alive and, after much crawling and clawing, receive the promise of a certificate with my name on it. As this milestone ticked over I was in the embrace of close friends who had seen me from the beginning of this decade to the end, a weary but ecstatic conclusion all the sweeter for the scores of those who gently pulled, pushed and bore me to the finish line.
The next question is, what lies after that finish line?
Film - Sydney
You have probably heard of ‘The 27 Club’. It is the long list of celebrities, usually people in show business, who died at the age of twenty-seven. It became a phenomenon a few decades ago, was resurrected with the death of Kurt Cobain in the nineties, and then returned once more, to great media speculation, with the death of Amy Winehouse in 2011. In the great human tradition of assigning meaning to these things, people found it eerie that so many actors and musicians were dying at that age, and the label, ‘The 27 Club’, became a cultural staple.
I have thought about Amy Winehouse a lot. I love her music. She went to several different hospitals for her addiction, but one of her most prolonged stays was in the same mental hospital that I was a patient in, and have written about. As a schizoaffective I was there for different reasons and was receiving different treatment, but even years after the fact I still heard the story from some who were around at the time. It was mainly about the day she left the hospital. They spoke about how vulnerable she looked when the door opened and a swarm of photographers and journalists heaved outside. They say she then walked into the hornet’s nest and never came back.
It is exactly two years since my third admission to the hospital, when I felt a hopelessness spread through my entire body that scrounged out every positive impulse, rational thought and belief that I could ‘come back’ from that dark place.
Journal 07/11/2018
A year ago I sat on the bed in room 32 with a sense of disbelief that I was there again. Part of me was not surprised at all, but I had suppressed that part, and was living in denial. I remember looking around that room and feeling desperate. It was very white it was very bland it was like living in fog, in a daze.
This response is one of many I have had to sudden emotional upheaval and I have experienced it a lot over the last few years. To this day distress does not manifest in a singular way; it is multiple, even dichotomous. Sometimes I am empty, other times I am full to burst. The former is a type of moment in which I feel completely extinguished, an emotional vacuum, a shell. It is an unbearable weightlessness, it is to be completely erased, it is to be hollowed out with a sharp knife. In other moments of significant distress the opposite occurs: I am overwhelmed to the point of boiling over, blood teeming, chest heaving. It is a complete engulfment of heart and mind, a sensory overload that leaves me thinking, ‘My body is going to break,’. It is one of the reasons the depression can be so physiologically wearying even when I have not moved a muscle.
However, while my depressive-schizoaffective disorder remains in its various manifestations, I do not feel its fingers around my throat the way I did then. I am thankful to God that, while the last year has been challenging, I have been emancipated from the jail of suicidal blindness, the cage has vanished, and fear abated. Every day that light appears and is perpetually refracted, greater than any sadness; the following tale, in all its’ ebbs and flows, is one of unwavering grace.
The conceit of ‘The New 27 Club’ is that I am creating a club in which twenty-seven year-old people survive their mental illnesses. It could be said that it would make far more sense for me to write this post upon turning twenty-eight, but I would reply that the creation of this ‘club’ is an exercise in optimism, not superstition. The last year has been a huge test where the manifestations of schizoaffective disorder and dissociation made survival and beyond – the achievement of my goals – an uphill battle. Having now lugged this tired, tender body to the desired pinnacle I find myself looking over my shoulder and attempting to process the passing from one era to another. It is significant that I have begun writing this while in Australia, the place where I embarked upon the trek to graduating with a degree without losing my life.
Film - Sydney
Journal: I am nearing three weeks in Australia and I have been feeling the love through that time. There has also been anxiety, sleeplessness and moments of deep sadness. However… I have not dissociated!
I enjoyed English classes, and the humanities in general, throughout my schooling. However, it was not until my final two years that I realised how much I loved to study English for the sake of studying it. I have my Grade 11 and 12 teacher to thank for this; she was incredibly wise, she was passionate about literature, and her thoughtful encouragement spurred me on to pursue and improve my own writing both in her classes, and beyond. It was a beginning. I can only hope that, at the time, I adequately expressed my gratitude to her and how much I valued what she taught me, but knowing me it probably came out in an awkward and disorganised tumble. This has only worsened with time; I often struggle to verbalise my thoughts and feelings the way I would like to. So I write.
I was a student at University of Queensland from 2010 and in 2014 I transferred to Queen Mary University of London. Normally one graduates after three years at Queen Mary but it took me five, after two interruptions due to my mental and neurological illnesses. Last September I returned to university to complete my final year. I picked up the dissertation I had been forced to abandon for depression and psychosis. My subject – representations of consciousness in the modernist novel - was also concerned with the mind. This was not a deliberate overlap; I was preoccupied with form, and the actual philosophical, psychological and neuroscientific question of how people think was relayed to the background. I was focusing on two novels: The Waves by Virginia Woolf and Pointed Roofs by Dorothy Richardson, and I spent more time analysing their syntax than seemed rational to those outside of the modernist bubble.
The freedom allowed by this project was sensational and although the final result was riddled with issues it was fuelled by passion and I was proud of it, even if I opened the final copy - after it was bound and ready to submit - and immediately saw a glaring error. Oh well. I was able to muse about how literature is better equipped than the other disciplines at representing consciousness - and a great many other things - which gave me a warm feeling.
Film - Mile End Canal, next to Queen Mary
A significant challenge of studying with schizoaffective disorder and dissociation, as well as the side effects of several medications, was the diminishment of my ability to concentrate. The desire to learn was there. My love for the subject was there. It was a matter of convincing my brain to stay focused for small blocks of time. The problem partly lies in a lack of energy and how drained I would become. I would have to work in twenty minute chunks. After twenty minutes I would sit and breathe, decompress, make a to-do list, and then resume. Eventually the chunks would begin to accumulate and tasks would be slowly completed; slow but steady study worked far better than throwing myself into a storm of productivity for hours without reprieve; that method would usually result in sudden, debilitating distress and being too exhausted the next day to accomplish anything I would not be embarrassed for a lecturer to read.
Journal 02/10/2018
Living with depression has often meant limited energy and I have sighed the (Australian?) phrase, ‘I am nearing the end of my tether’ many a time over the years to a myriad of concerned people who really do not deserve this. I often feel guilt gurgling in my stomach at how often different variations of ‘I’m tired’ I release into the ether, but even in a state of relative health the depressive drum still thuds throughout my body, and I can only do my best with what I have despite its oppressive presence.
I am greatly helped by the stimulating and thought-provoking classes I have attended so far…
This difficulty resulted in continual mental distraction. I would maintain a steady stream of self-talk, mainly cajoling myself to focus on specific tasks: Think about the essay. What is Susan Sontag saying. Read that sentence again. What is the argument don’t think about that thing that happened five years ago what. is. her. argument. Stop being a muppet, muppet. Sometimes it worked, other times pictures and memories would suddenly settle over the present like a blanket, obscuring the task at hand.
My brain produces many powerful images that have flashed across the screen for months and years: the fall down stairs into walls, internal organs covered in rust, a view of the back of my own head. Some of these are still and some are moving; they are all perpetually occurring. These images are not entirely random. Some are related to traumas from years past which feel branded into my mind’s flesh. Others act as metaphors for certain feelings, for example: when I was thirteen I had my appendix taken out via keyhole surgery which involved the surgeon inserting a camera through a cut in my stomach. They took pictures and printed them out for me as a strange kind of souvenir that was simultaneously repulsive and fascinating. I still remember what my internal organs looked like in those pictures, and in my depression I began to visualise them again, but in this scenario they were rusting over. I believe this is because in those times I felt myself becoming corroded, my insides disintegrating, my very core deadening, so if I was then cut open and photographed there would only be a dark, flaking wasteland where a functioning system used to be.
That is the image. It was completely unhelpful when I was trying to study and batting it away became an exercise in itself.
Journal 01/11/2018
I am stuck in my own head right now; I’m tired but I’m happy to be here.
I am often overwhelmed by memory in the everyday. My memory is next to non-existent (my medications are responsible for that) but I am dwelling in my longer-term recollections. In about a week’s time it will have been a year since I was admitted to hospital. There has actually been a media storm surrounding my hospital right now; it is about the infamous death of one of my fellow inpatients that occurred while I was there. I can’t forget it, how do I forget it? I can try and be ‘mindful’, as they say, and think about walking through the park, drinking coffee, sitting in the sun, but it is still there. This terrible memory serves the purpose of reminding me that feeling overwhelmed because I can’t read enough is nothing compared to feeling overwhelmed because I don’t see a way out. I would know; I have experienced both.
The most disruptive result of attempting to study with these conditions was my dissociative seizures. Unlike my epileptic seizures – a story in themselves – which were powerful but brief, a dissociative seizure could last for up to an hour, after which I would be a crumpled husk for the rest of the day. The other difference is that I am completely conscious during a dissociative seizure, and am acutely aware of every sensation, as my mind breaks away from my body.
For more information on dissociation please see the post, ‘6. Dissociation: Saying Goodbye to Reality’.
Despite these obstacles, having the opportunity to study at Queen Mary was one of the best things that ever happened to me – and I have met Keanu Reeves.
This is not diminished by the difficult realities of studying with a complex mental illness. To be clear, it was a frenzied see-saw, but a gratifying one. On the one hand, I had a small relapse in my first semester and had to take two weeks out. I handed every single essay in late. A couple of hours in to working I was so drained I would have to withdraw to the isolation of my ‘cave’. I was constantly in pain. I started getting migraines, I had stress acid which left me curled up, clutching my chest, and I continued to have the dissociative seizures. My insomnia worsened and after class I would fall on to my bed, limbs aching, head pounding, and close my eyes as the sun went down. The work often overwhelmed me and every time I hit a wall a voice whispered, I don’t know if this is going to happen. In a lot of ways this was not new territory. Girls have to learn at a very young age how to be in pain, and be productive, at the same time.
The question that may pop to some people’s minds is, why do this to myself?
This is also a question a lot of my peers asked me when they discovered I was deliberately studying modernist literature, instead of, well, anything else.
If my body is fabric cut into a shape, seamed, and stitched, it would appear that ‘student’ is not the pattern from which I am made. Physically. I make this distinction to assure you that this temporary stress on my body and mind was worth it. I completely adore academia. I remember telling one of my teachers when I finished how I had spent a lot of my life just enduring, and had learnt from them how much devoting myself to something I am passionate about can uplift me from simply crawling through to feeling pleasure in my vocation and a sense of purpose in the every day. I was privileged to discuss fascinating texts with experts, even if my own contributions felt like inarticulate blathering. I would feel my sedated brain become animated. I could talk about Virginia Woolf all day. I have talked about Virginia Woolf all day.
A Writer’s Diary - Virginia Woolf
Courtesy of Mariner Books (2003)
Fast-forward to those last few months before my deadline. I will not pretend they were an uninhibited, triumphant leap across the waters of adversity. There were ebbs and flows. Passion for my subject matter was no match for the desperation and the mania as my mental health was stretched to a breaking point, snagging and splitting a little more every day. My psychiatrist was continually raising my multiple antidepressants and sleeping pills to fight this, and was eventually forced to prescribe benzodiazepines for me to simply get through the days and nights. I shed weight from Stress Not-Eating, my hair fell out and I had dark circles engraved under my eyes.
Yet there were peaceful periods too. After each raise in medication there was a pleasant bump in my mood and productivity which I was extremely grateful for. I would feel exhausted but uplifted every time I finished an essay and the burden would diminish slightly. On those days I would wander home and announce the milestone, maybe groove around the kitchen, and then cheerfully collapse with some escapist viewing (BBC’s Sherlock or any Lord of the Rings film, the extended editions, obviously).
Journals
We are nearly at the end, so now for the final ebb: three weeks before the deadline I hit a peculiar kind of wall. The anxiety reached such a pitch that I stopped sleeping. This is standard; I have had insomnia since I was seven. However, during the day I would gaze at my computer screen, unable to absorb what I had already written or write anything new, as my mind would not focus for more than a few seconds at a time, no matter how hard I tried to squeeze even a few minutes of concentration out of it. As a result, despite all the coaxing I was producing nothing, and this increased the feverish stress, and these effects, in a self-defeating cycle. I sat in my psychiatrist’s office with one leg shaking uncontrollably, compulsively scratching the chair and struggling to enunciate how I was feeling. She took one glance at me and understood, explained to me how severe anxiety could manifest in these ways given my situation and illness, and prescribed emergency medication to moderate the mania and usher me to a comparatively stable state of being.
I resembled a human again and the work got done. There was serenity. It was a Wednesday when I finally submitted four essays and the dissertation. My feelings overwhelmed me in that moment and I had no idea what to do. I expected to take flight, to shout with elation and feel the adrenaline course through me in triumph, but instead I felt utterly dumbfounded. It all amounted to this. It is over. Joy was staggering that day and I will never forget it.
I am keenly aware of how blessed I am to have this medical treatment. The superb care and expertise of my psychiatrist and therapist in this final year has been a saving grace.
Attempting to pay tribute to the people around me during the circus really exposes my deficiencies as a writer. I have struggled to find the right words to describe the absolute gift that has been the people in my life. This includes everyone from my loved ones, my church family, the various healthcare professionals who manage this basket case of a brain, my teachers, even the people in the admin office at university who answered all my panicked emails with kindness and patience. There are the baristas at my local café who gave me a lot of hugs and bought prosecco when I submitted my dissertation. I am writing an entire blog post about my beloved dog, Archie, who passed away at the end of my final semester to much heartbreak, but spent his final months – his entire life, really - being the best friend I could ask for in a stressful time.
Archie in Hatchards bookshop on Piccadilly, London. I took him to many bookshops but this was his favourite, I believe due to the carpeting.
I have seen answered prayer in how God worked through these people. They have borne me up, helped me mute the demons, assuage the pain and keep the faith. This includes those who I could not see face to face. I withdrew a lot in those last few months and regret I did not see a host of people; my timetable became sleep, study, sleep and sometimes eat. However, in a frenzied time there remained quiet arbours. Despite an illness hissing to me how small and alone I am and always will be, I have never felt the sting of abandonment. The chorus echoed, I lifted my face and felt the fear evaporate. ‘Thank you’ is an insufficient phrase.
I must acknowledge the extraordinary care and support I received from the people at Queen Mary University of London throughout this final year. My teachers and the department’s staff were an astonishment. Not only did I learn from them on an intellectual level about the various glories of literature – knowledge I will continue to cherish – but witnessed and received an abiding support that inspired me through every moment of excitement and anguish in the process of study. I was not the only one who became emotional at the pure expressions of empathy and compassion experienced during my time there, throughout a journey that often felt impossible due to the thorny grasp of a mental illness. I will remember these people for the rest of my life.
I also learnt to avoid writing emails to faculty on my phone as one too many times I would clumsily sign off and nearly send an email with an incorrect name that felt depressingly appropriate: my phone autocorrects ‘Isabel’ to ‘Insane’. Is it possible for a piece of technology to have a Freudian slip?
Where to now?
I remember thinking after my third hospital stay that it is easy to start seeing humans as nothing more than damaged animals, bodies constantly breaking apart, and healing a little less every time. I have looked at my body in the mirror and only seen things knitting, I have observed my life as merely an undignified stumbling from one dissociative set piece to another, and I have gazed into a future shaped by nothing but annihilation.
I have also learnt that I cannot always trust my eyes.
Years of psychosis have demonstrated how I can witness a ‘reality’ that is actually a lie.
I am not just another blooded creature. I will not be butchered by these fissures. I feel my mortal spine crumble and my face fall away, but this skin and this bone, and all that dissolves, the weak and the putrid, is not a brand of death that I accept, for where is my spirit? Where is my soul? I am not defined by this body; it is temporary dressing for an immortal whole.
That is a real reason to rejoice.
Film - Sydney
‘The New 27 Club’ is no guarantee. There will be no badges or t-shirts. I might write prolifically but I will not pretend to be a philosopher producing mental health manifestos for the masses. I can only write me and what is true in my life.
‘The New 27 Club’ represents a new start. I am proud of what I have done this year but it has also been riddled with my mistakes, errors of judgment, footsteps misplaced. I have lost perspective, I take and take, and often fail to reciprocate. I have let people down, through stupidity, blindness and a whole host of other shortcomings. Throughout it all I have been blessed with people who are incredibly patient with and generous to me; if I could give out even a fraction of what I have received it would move mountains.
Furthermore, reaching this point has been a collaborative effort and none of these people ever held it against me. In dark moments I have forgotten this and an irrational type of guilt has swooped in; I have felt like shattered glass, mirror splinters, puncturing those who put them back together, ingrained in fingers. This is depressive-schizoaffective logic, something that is illogical and eschews reality, of which I have a tentative grasp even at the best of times. I cannot always trust my eyes.
Even my brave little dog, Archie, who was also battling significant physical ailments for a long time, nonetheless remained the most loyal, affectionate, best friend until the end.
In December I will graduate. My adult life has included some highly traumatic events, which I have not named, but have had a big hand in shaping the last few years, manifesting in a number of destructive ways like slow-spreading poisons. Yet they do not hold power over me anymore. After a prolonged hurricane of very hard work I am now on to the next great adventure. I do not know what that is except to keep living and keep writing, to ignore the voices that insist, you are breaking, to move forward in faith and embrace every blessing, of which there are legions.
Journal 10/10/2018
I remember the hospital a lot… The person I am now seems like a stranger to the person I was then. I think one of the most debilitating things was that I did not believe, I genuinely did not believe that it was possible for me to get back to this place. I thought I would be stuck there forever, and even now I sometimes feel like I will never be truly well but I have to force myself to have perspective, that this is well, that I am alive and that I want to be here and that is well. The level of determination people around me have is infectious. I am going to graduate.
I feel like I am standing on a precipice with everything I know lying behind me, but in my ‘club’, taking the plunge off the edge and into the water is not death, but the moment all of life will surround me, in many colours and textures, both pushing and pulling my body in flux, very much alive, now and always.
In my natural habitat where I have done some of my best writing and ranting.
The next Disinfectant blog will be posted within two weeks. You are invited to subscribe at the bottom of the page to be notified of upcoming posts.
Update: The next post, ‘30. Is She Drunk or Dissociating?’, is about dissociative seizures and has been delayed because I am having a lot of dissociative seizures.