A poem I composed

About my allotment in the autistic writer’s group I am currently participating in/ I’m really pleased with it 🙂

 

Birdsong sprinkled in the background of the morning.

Blue vaulted above their heads when they looked up.

Brown hands and feet from the earth, brown faces and skin from the sun.

Calm; that was all they could describe at the time.

Green, the colour of their eyes, that met their eyes.

Music to get lost in, so needed at this time.

Peace, quiet and time alone, strangely essential under current circumstances.

Productive in a way that doesn’t involve tick boxes

Shit, mountains of the fucking stuff.

Silence.

Spade; an essential implement, but the process sometimes make you feel like one.

Vegetables, so delicious to eat.

 

Virus-free. www.avg.com

#FurnitureFreeLiving

Last time I posted I wrote about my overall experiences of using space more flexibly; a process I have undertaken since we moved house and into a new property that was slightly smaller than our last home. The walls were a lot higher, so it gave me an opportunity to think about how we use space and how to use it to better effect. Originally, we built up, utilising higher storage options and creating a bespoke bunk bed for my son out of reclaimed scaffolding planks to give him full access to the floor space in his room.

A rug is located diagonally with a small pile of cushions at one end.
Cushions and a rug make a furniture free space more comfortable and invite lingering.

Most recently I have moved away from the idea of different rooms have a designated purpose, often assigned by the type of furniture in it. Houses have bedrooms, with beds in, kitchens and bathrooms, (whose function we can’t really move away from), but otherwise part of the consumption driven approach to housing in capitalist societies is to keep buying a bigger house with extra rooms, all with a designated function. Therefore you end up with a couple living in a five or six bedroom property, with a games room, laundry room, lounge dining room and mud room for example.

Small wooden creates create flexible and attractive storage that is easily moved,

We’ve made the choice to use our home more flexibly. We have our television in one of our bedrooms, whose occupant prefers to watch this to relax and so the TV did not dominate the living space downstairs and overall layout options available within it. As a family most of our living takes place upstairs, but our son was struggling with a lack of space in his bedroom to play in, so he ended up with what would traditionally be the lounge/diner as a play room. In the future, this space may well be converted into a bedroom as well. Given we have multiple family members on the spectrum, personal space for downtime, hobbies and special interests is more important to us all that a space for collective socialising. The one bugbear at the moment is a dining space. I’m not happy without, one but other family members don’t feel they could manage with eating upstairs converting the smallest current bedroom. I guess that time will tell what the greater need will end up being.

A large wooden shelving unit contains drawers, boxed and folded quilts.
Storage allows furniture free spaces to stay clear and even houses bedding.

Within my own personal space I have embraced the idea of furniture free living quite radically and have found it to be a great release from constraint. The space taken up by a bed is massive in terms of the lost opportunity to move and play in different ways.

Bed is made up on different quilts on the floor
My sleeping arrangements – a bed as big as is required.

At the moment I have got rid of my bed, choosing to sleep on the floor Japanese style instead. My desk and kneeling chair has gone and has been replaced with a squatting desk and winebox stool. The main pieces of furniture in my living space comprise of storage, a really important feature given that the benefits of using space flexibly are maximised when things are packed away and not left around the room.

A black and white cat is curled up on a pile of colourful cushions
Feline embracing of furniture free living, every space becomes a napping spot!

Instead, the new room we gain becomes an exercise and rough-play gym, sleepover space, hooping studio and sensory playroom. Toys and props are left around as provocations for movement and we have a range of accessories to use with our ceiling anchor points which are invaluable for sensory breaks in winter when the weather is crap. Side tables are made from wooden crates which can be moved about to accommodate a whole range of activities as well as stacked to add a degree of novelty as moods change. Rugs and cushions make using the room during the day more comfortable whilst still gaining the benefit of different opportunities for the body to move and be used in many ways. Simply banning chairs and other furniture which only allow the body to lower to thigh height makes such a difference in terms of flexibility and muscle strength. I’m also pleased that my son is adopting some of these changes, such as sleeping on his own floor at times. Not only do they bode well for his future health, but can make a real difference in the perception of what is ‘needed’ and what is optional across a life time of buying things, or not as the case may be.

A low desk with a lit lamp and two monitors on top
A squatting desk encourages more movement and greater use of the body.

I am finding that I am getting healthier the older I get, mainly by removing many of the trappings of wealth and convenience we indulge in, in western cultures. I’m thinking about writing about these in the coming weeks, as lockdown challenges me to think differently about my life and space.

Three colourful hulahoops lean against a wall in front of a radiator and window
Movement provocations are left out to play and interact with.

Lets get back to the old school – ways of working…

Sitting at the end of probably the worst week ever that would have been possible to begin a year with. Four days in, we have entered another national lockdown, with the children off school again, after having been back only one day. 

I am sitting here getting angrier and angrier with the issues I am experiencing with technology. The laptop I have been sent is not working with the second monitor that I usually have, the wifi drivers keep failing and to top it off the whole house’s internet connection has been off since this morning.

I realised, rather than getting frustrated (which I was and it’s not good for well being, resilience or mental health) I stepped back from the situation and realised that despite my reliance on this technology and connectivity, I did not depend upon it to actually do my work. I am thirty eight, and although I had internet access consistently from the time I was studying for my ‘A’ levels and first degree, it was dial up which meant that the pages took a long time to load, the reliability of the service was questionable and the opportunity to store information in the cloud and use this facility as a dump for data and information was non-existent. I still managed to study, produce some amazing work and get a bloody good mark though.

Perhaps this situation is the answer I am looking for; to explore more focused ways of working for my PhD though. This experience is the prompt that I need, the pause to look at my situation differently.

What I do have access to, even with no wifi:

  • An excellent laptop and a comfortable work station
  • A mobile phone which I can send and answer emails on and access the internet, and if required, tether a hotspot connection to for short periods of time
  • A printer (can I connect my mobile to my printer through Bluetooth?) – note yes I can but I only found out because of needing to get past the shit caused by the lack of wifi
  • The ability to conduct meetings online through my mobile app via teams and skype (I am not out of touch with my colleagues and professional networks)
  • Pen and paper, lots of both
  • Wall space and post it notes
  • My brain
  • A print out of planners for the next week of my calendar and diary that I can update manually (an analogue diary)
  • I have a telephone land line that I can make and receive calls on if required
  • An FM radio I can listen to music on and receive news through
  • A scanner and copier if I want to reproduce anything
  • The ability to record audio from myself and online meetings and upload this to the cloud.

The truth is that I am still better connected and equipped with all this stuff than I ever was for my undergrad degree, even without a wifi connection.

It’s funny how your perspective can change when you start to think about a situation differently.

One of the things that I wanted to and certainly need to work on, is thinking about my reading and writing time; finding time, staying focused and being consistent. There are umpteen apps for ‘improving’ your productivity and quality of output in these areas, but the truth of the matter is that people have been undertaking these activities and doing a pretty good job of them for centuries without the ‘advantages’ of digital technologies and connectivity to aid them.

Perhaps the answer that I am seeking is actually staring me in the face and I have to switch off and reduce the level of technological ability that I have. I need to appoint days where I begin with my phone and laptop on aeroplane mode so that I can work without distraction and interruption. Both roam research and google docs have local functionality that I have make use of to avoid the onerous task of remembering to upload my work, I can still take advantage of some of the digital tech’ that enable local versions of themselves whilst still enjoying the advantages of the efficiency of these products and services. This flexibility is what I can exploit to return to some of the working practices of my twenties.

Even not having my monitor working has meant that I am working differently. I’m not chained to my desk and have spent more time organising myself on the floor. Even writing this blog post has meant that I have thought about the possibility of lowering my desk to make it at the height at which I can work at it squatting on a very low stool or even self supporting in a primal squat at times.

Update: I decided to get rid of my kneeling chair and lower my desk and overall I’m really pleased with it. I’ll definitely be posting some pictures of my work and living space soon.

Update 2: This process of reflection was really useful and has made some quite significant changes to my work and living space. 

Sex and Autism: a gender-queer perspective.

I am a late identified autistic individual who was born biologically female and remains so, but identifies as genderqueer. My sexuality and, following on from this, relationships, have been diverse exciting and often challenging because of the path less trodden that I have chosen, but also because the difference of autistic experience I that have can create confusion and conflict. Often I have not understood why I do and enjoy the things I do. I have only that they felt right.

Most recently I have found the words and language to express more coherently just what I am sexually and in relationships; genderqueer and polyamorous. This is my own language. I cannot claim to speak for everyone who is autistic. Merely I hope to offer some suggestions for those seeking their own sexual and relationship fulfilment who are also on the spectrum.

Therefore my first thought is, seek your own truth.


Like all things every autistic individual is unique and our profiles are all different. What I love, you might detest. What I choose to engage in with partners, you may prefer to do on your own. Things, like genital contact, which I cannot cope with much of the time you might revel in. I believe though, that this individuality must be balanced with broader traits that we all share to a greater or lesser degree than can also cause difficulties.

Challenges around body language and social interaction can make meeting
new people and introducing ourselves extremely hard. Sensory situations means that the places often picked for first dates can be overwhelming.

Most importantly, is acknowledging that autistic individuals can be more vulnerable to abuse and exploitation as I myself have been at a number of times in my life. This has included surviving rape and domestic abuse and other highly risky situations when I was simply, at the time, not able to understand the potential danger to me.

So my second thought is, seek out people and spaces that you can trust and receive wisdom and education from them. Support groups for individuals (both in real-life and online, on Facebook) with similar challenges may offer a place to meet and seek support and advice from those who have lived experiences to your own.

The autistic brain can be analytical and detail-oriented, so use this to your advantage. Think about the kind of person you would like to meet. Reflect upon encounters that went well and not so well to analyse what you think caused the direction the interaction took. Explore risky situations you may encounter and how you might deal with these assertively and safely.

Practice saying no, but practice saying yes too, within the parameters of your own comfort zone.

The act of sex itself can be deeply satisfying or deeply challenging from a visceral sensory perspective. It is also important to note that a person’s perspective on this can change and fluctuate depending on many other factors such as how stressed they already are at any time, whether the proposal to make love or be intimate (if a partner is involved) was made at a time and place in which it can be processed or even if verbal notice was given of the first touch. I myself respond very badly to unsolicited touch and my partners have struggled against natural instincts to hug me spontaneously, especially if they have seen me in distress or aroused.

Touch at the wrong time can cause a very bad reaction and spoil the whole mood, so this particular aspect of my own sexuality always takes negotiation.

My third thought therefore is about taking the time, which may be a long period, to explore your own body and understand how your need for sexual
satisfaction and intimate touch manifests itself.

Masturbation is a wonderful activity as you are in control, a vital characteristic (I have found anyway) for an autistic person to explore something safely and develop their confidence. It is a solitary practice. Many people find that this is enough.

Some discover they are in fact asexual and can take some time to process this and become comfortable with it.

I have chosen and experienced a diverse range of sexual relationships and partners. From those considerably older than myself to living in a polyamorous triad for nearly a year I have been blessed to experience a huge variety in my sex life and relationships, having my life and body touched in many different ways. Sex can serve many purposes for autistic individuals, as I figured out when I received my sensory integration assessment which suggested, amongst other things, wearing tight clothing (latex?) and swinging (rope suspension) as well as deep tissue massage. I remember clearly walking out of a message appointment, stretching and thinking, “wow, that was just like a full body beating!”. (I have also tried kink too!). Obviously both massage and a beating activated my proprioceptive system in a beneficial and positive way.

My fourth and last thought is therefore about being true to yourself.

Autistic individuals are can be less constrained by social norms than our non-autistic peers. This in itself is a blessing and curse, as both a source of freedom and stigma. If you can reach a place where you can be truly happy with yourself, your sexual and gender identity whatever they might be, (and the fact that it might well change over the course of a lifetime), then I think you will have taken the first step towards enjoying a satisfying and safe sexual experience with whomever might be the right companion[s] for you.

I would like to finish by offering my hope for you as an autistic person, whoever you are and whatever your experience, to enjoy a safe, healthy and suitable sex life for you and your individual needs and differences.

As a community we are just beginning to find one another and ourselves. Each sex or relationship positive experience we have is a move closer to neutralising the stigma and marginalisation we can so often be subject to.

Covid-19 lock down in photos

Although I have found lock down incredibly stressful and challenging, as most people have, a review of my photo stream on Google of the last five months reveals just how much fun, love and enjoyment we have had together since we all started socially distancing in March. 

Highlights for me have included developing my sour-dough bread baking, visits to Cleethorpes and Derbyshire to go wild swimming and visit the coast, home-made birthday cakes, den-building and sleepovers as well as butterfly hatching and spending a lot of time in the garden. I’ve also taken on a new allotment plot, got rid of some really toxic relationships and taken the time to assess my life before beginning my PhD in October.

I have learned a lot about myself and my family in this time and I love the fact that I had the mind to take photos of so much so that we can look back on the Covid-19 pandemic and some point in the future and reflect on what we gained as well as what we struggled through.

 

Sourdough gluten free bread
A train park discovered on an early morning walk in Derby
Face planted sleepovers
A view from a hill in the Derbyshire Peak District
Jenn's hastily assembled birthday cake
A den created in a green hammock
M holding a painted lady butterfly
M's door sign asking for consultation fees
A sunset walk on a beach at Cleethorpes
Playing in the sand on a sunny day
Pink blossom on a tree in the street
A cat squashed between two pillows

Autistic Women Matter.

It is time to close the mental health gap that autistic women experience

Autistic people deserve good mental health just as much as their non-autistic peers. Jenn Layton Annable, an autistic woman and master’s student, explains why good quality co-produced research is needed to address this.

Autistic people matter. Autistic women matter. 

There is, however, increasingly strong evidence that autistic people, in particular autistic women, can be subject to a whole host of mental health issues their neurotypical (NT) peers do not have. Alternatively, they may be more likely to struggle with misdiagnoses or poorly understood co-occurring mental distress and illnesses.

Consider the following research findings:

Writing as a diagnosed high-functioning autistic women this places me, statistically, in one of the highest risk groups within the autism cohort. I am sorry to say that my personal experience also bears this out.

Since 2012, and the birth of my first child, I have been subject to repeated mental health crises that have included stays as a hospital inpatient and in crisis houses. In my case, as I now realise, much of the poor and inappropriate ‘care’ I was subject to, actually made things much worse for me and my family. This is my first-hand experience of the ignorance, misinformation and poor support that abounds in services about the interaction between autism, gender and mental health challenges. It not only exposes autistic women when they are most vulnerable, to delays in their recovery but can also actively traumatise them. The end result is ultimately that autistic people are dying and being detained in psychiatric hospitals unnecessarily, as the tragic publicity around the failure of the Transforming Care Programme, which was supposed to get autistic people out of hospitals and into homes, demonstrates.

So what can be done about this?

Research. Solid, high-quality, participatory research, must take its place front and centre if we are to begin to unpick some of these life-threatening issues and ensure that these lived experiences of autistic women and girls of the UK’s mental health system cease. 

Positive steps are being taken by researchers beginning to explore the correlations between mental health and being autistic. Autistic autism researchers are beginning to put forward alternative concepts for what autism is, such as the ‘double empathy problem’ (in which autistic people consider NT people to be as different as we are to them, and so may always to struggle to understand each another) or the ‘monotropism’ interpretation of autism (that constructs deficit-based autism traits such as restricted interests in a more positive light). These alternatives challenge the medicalised deficit-based model that has been the dominant narrative about autistic people since the difference was first identified in the nineteen-forties. 

We still have a great deal of work to do though. 

Genuine autistic voices are excluded from research. The preferences of autistic people about the research priorities they would like to see studied are still woefully underrepresented in academia, with much of the focus remaining on causes and cures. Major autism organisations still portray autism negatively; as a ‘thing’ which destroys families and steals away their loved ones. Autistic people’s human rights are still violated, every day, by people they consider friends, or professionals employed to support them.

This is the reality for autistic people like me, living in the UK and struggling to build and enjoy lives and enjoy positive mental health and citizenship like their non-autistic peers. These autistic people are possibly a family member, a friend’s child or even you.

So, what can you, or we do, to ensure that autistic people matter? That autistic women matter?

The article was originally posted on mcpinn.com in May 2020.

Jenn Layton Annable is in the final year of her MSc in mental health recovery and social inclusion. She is passionate about using research to improve the lives of people with autism, which is a central focus of Words That Carry on. This is a fund established in the name of Lindsay Riddoch and is being hosted by the McPin Foundation.







My first authorship has been published!

The book that I contributed to (here is a link to the publication page), as my first authorship, was published last month.
 
We received some really positive testimonials from experts across a number of fields on the blurb section on the back. 
 
‘This must-read research-based text represents a step-change in our understanding of neurodiversity; challenging old assumptions, generating new knowledge and understandings of importance to us all. Written by editors and authors who really know what they are talking about, and organised around five key themes, it builds on critical race theory, feminist and queer studies, connects with disability and Mad Studies, to explore a new and important field – Neurodiversity Studies.’

– Peter Beresford is Professor of Citizen Participation at the University of Essex and Co-Chair of Shaping Our Lives, the national user led organisation.

“The increasing recognition that there is no ‘normal’ brain type against which all others must be judged pathological is having a transformative effect on every aspect of society: on employment, education, research, public policy, and how we conceive of the minds of other people. This book makes an important contribution to the evolving scholarly discourse around neurodiversity by centering the voices and experiences of neurodivergent people.”

– Steve Silberman, author of the prize-winning NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (Avery Publishing)

‘There is SO MUCH here. (The essays by Alyssa Hillary and Matthew Belmonte alone are worth the cost of the book.) Neurodiversity advances, less like an army than like an ecosystem after a fire. Growth and renewal beyond measure.’

–Ralph James Savarese, Professor of English, Grinnell College and author of See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor  (Duke University Press)

—  ‘Neurodiversity Studies: A New Critical Paradigm is interesting, enjoyable and thought provoking, and I think its theoretical discourse and positions have clear constructive practical implications which really matter.’

– Dr Dinah Murray, autism researcher and campaigner productiveirritant.org    

‘Neurodiversity Studies: A New Critical Paradigm provides a deep-dive into the complex world of autism and the neurologically different.  Ranging through the humanities, social sciences, philosophy, ethics, and communication studies, among other areas, the book breaks new ground in the academic study of the inner worlds and sensoria of a significant portion of the population too often ignored politically while over-treated medically.’

– Professor Lennard J. Davis,  Distinguished Professor of English at the University of Illinois at Chicago, School of Arts and Sciences, and also Professor of Disability and Human Development in the School of Applied Health Sciences and Professor of Medical Education in the University of Illinois College of Medicine.
 
I am incredibly excited to be included in this collection of papers on Critical Autism Studies and found the experience of co-writing with my follow authors so rewarding. As a first foray into the development of data through an collective-autoethnographic methodology, the experience of using the self and one’s own experiences as the basis of research is challenging, as too was the process of finding a shared meaning in the interpretation of the data, a process we touch upon in the chapter.
 
If you have an opportunity to read any of the collection or my chapter please drop me a line to comment or offer your own thoughts via my contacts page

If you think you’re beaten you are…

A rather fab poem that I return to from time to time when I am feeling deflated. I like the sentiment. It reminds me to keep going and enjoy the journey.

“If you think you are beaten, you are
If you think you dare not, you don’t,
If you like to win, but you think you can’t
It’s almost a cinch you won’t.
If you think you’ll lose, you’ve lost
For out in the world we find,
Success begins with a fellow’s will
It’s all in the state of mind.
If you think you are outclassed, you are
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.
Life’s battles don’t always go
To the stronger or faster man,
But sooner or later the man who wins
Is the man who thinks he can!”

Walter D Wintle

Dissertation work and life progress

The last three months have been so fraught trying to work and study and parent during lock-down I have hardly had time to think, let alone write about what has been going on. The good news is that I have completed my literature review which has had some amazing feedback (including an offer for support to publish it!) and I am now well on the way to completing my final piece of work for my MSc. It has been such an exciting journey, but one which has been really tough sometimes. When I think about what has happened concurrently in my life over the same period I can hardly believe how much change has happened and how much I have grown, along with my family as well.

People often ask me if my diagnosis has changed my life.

This often mirrors the question that gets asked by clinicians to lots of adult autistic women seeking diagnosis; “you’ve managed this far, what difference will it make?”

My answer is that my diagnosis was a starting point that I needed to truly understand who I am. Currently where I am in my life feels a little like having gone through the looking glass. I went through the diagnosis metaphorically. I used up everything it had to offer me to understand myself and acted as a launch pad to spring me in the right direction. I am still on that journey and not knowing where the destination is which is frightening and exhilarating in equal measures. The truly strange thing is that I don’t really know myself anymore.

I’ve gone beyond labels.

I know myself, the presence and consciousness that I recognise as me but I can’t really describe that in positive terms anymore. I can tell you what I’m not, but what I am is a different question.

I know that this might not make much sense and it doesn’t, but the great thing is that this doesn’t matter anymore. It’s not important to me because I’m moving beyond the need to define myself by other people’s standards.

Hope – a letter from my long past.

Hope      

Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

 

I don’t know who I’m writing this to, your name or much about your situation. I know that you are suffering, and that my own experiences may be of some help to you or your family. 

A little bit about myself, my name is Jen. I’m 24 years old and have suffered from depression from one degree or another for the last eleven years of my life, possibly more. There is a family history of depression and self abuse, down both sides of my family, but mainly through my paternal line. My father, uncle and grandfather are all diagnosed depressives and are or have been serious alcoholics at some point in their lives. However, throughout all of this I have educated myself, being awarded the highest mark ever on my degree course, maintained healthy and happy relationships with my friends and family, always kept my goals in sight, and developed and grown as an individual. I am happy now, and contented and finally achieving what I should. I also know though that I shall probably have to deal and live with this condition throughout my life, but through learning about it and myself, I know that it is manageable, and no impediment at all to my dreams and aspirations. I am happy, but know that there may come a day when I maybe less happy. I thank God for everyday I wake up feeling like this because throughout everything I have had support and people who have done their best for and by me. I am blessed, it can be hard to remember that at times, but it is essential for the maintenance of hope, which is what makes life worth living. 

I have come out the other side, and life is beautiful. The road is long and hard, but it’s worth every little baby step you have to make to get there, and I’m certain you all will. It will make you stronger, bring you closer together and bring you to a greater understanding of one another and yourselves.

For me depression and self abuse are separate things, not necessarily going together. The abuse is symptomatic of the depression and is an outward symbol and sign of how I was feeling about myself and my life.

Many people, in my experience, think of self abuse as the typical cutting or burning. For me it isn’t. Self abuse for me has included anorexia and bulimia, binge eating and then puking up. Alcohol, and major recreational drug abuse. Chronic infidelity in relationships, constant self degradation; you are often your own worst critic when you are down. Obviously the cutting and the burning, but also tearing out of hair, continuous scratching and chaffing, head butting walls …anything which has a detrimental effect on your life and your relationships is self abuse, anything that stops you from being your absolute level best, from achieving the absolute most that you can from your life. If it something that is happening that you can put a stop to then, for me it falls under the category of being abusive.   As well as this, when you are feeling so low, have so little faith in yourself and your ability to function, unfortunately you can attract individuals into your life who may take advantage. I have just removed myself from an abusive relationship, and this for me has been the last stage of letting go of my past and accepting myself. 

What I have come to realise is that the common thread throughout all I have described is fear. Fear that you can’t make it, that you shall or are failing, that you will never be good enough. (My experiences again, I would add, I am not addressing this to you as your experiences). The fear of letting go, of allowing yourself to be set adrift in the world, to hope that everything will be okay. From this for me comes a need to control. I have also in very mild form got OCD (Obsessive Compulsive Disorder), checking that I always have my mobile on me, silly things. I know it’s in my hand bag, I put it there two minutes earlier, but I don’t quite have enough faith in myself to believe, and it’s an expensive phone to loose.  

I have spent much time in the last four years undergoing quite intense self analysis. I have read books, spoken of my feelings and experiences and been through three counsellors and therapists in as many years to find someone who was right for me. I would also say, don’t forget each other. The people closest are those who can hurt the most, but they are also our biggest comfort. 

Depression, my experience of this condition, is a initially a feeling of loss of control, firstly of what I call negative emotions, frustration, anger, rage, hate, upset, misery, rejection, loss, isolation, envy, the list could go on and on. All these, when I am depressed combine into a huge ball, it weighs constantly, and I can feel it all the time, in my chest, the weight there, requiring a constant effort to suppress it, to keep up the little smiles, the “hi how are you’s?” the stupid rituals that define us as normal healthy and functioning human beings. It’s hard to distinguish at first. Gradually I become aware that something is wrong, but it can take me a while to work out what it is, the shape and texture and weight of it.  

As it becomes heavier, more distinct, it becomes harder to ignore, harder to pretend that nothing is wrong. Like you hear of an alcoholic, I can deny the very existence of the problem, because to admit to it means I will have to admit it to myself and maybe to other people, and I have to start dealing with it. As this realisation begins, as it becomes harder to ignore it scares me, more than anything. It makes me want to scream, like you see people in the movies scream, that blood curdling sound from the bottom of your soul. I have sometimes too. To realise and admit to this problem is to admit that I may stop being Jennifer Layton, bright, intelligent attractive, and become ‘depressed’. I lose the person I am, to the monster that I can feel growing inside my chest, the one that I have to control with every ounce of my being and will power, because the society we live in doesn’t allow any room for loss of control, for negative emotions, and I have to function here from day to day.

 At this point, the need for control becomes paramount. If the condition is not checked and dealt with, it can be sometimes, and then the rituals become harder. Every minute is a struggle for control, a struggle for you against yourself. Controlling the urge to cry, to lash out at people for things that really shouldn’t matter, that would normally make you laugh becomes the most important thing, above all else. For me the guilt sets in at this point. That it’s happening again, that I should be able to do and deal with this. I am an adult after all. Why can’t I be normal like everyone else? Why do I have to go through this? The guilt of what I have put my friends and family through in the past and potentially in the future, the guilt of what I have done to myself adds to the ball, it grows and begins to lash out, the control becomes harder and then the piss your pants fear of losing control and what is just around the next corner and how the fuck am I going to deal with it gets heavier and heavier and worse and worse.

The outward signs of my depression become more obvious to those who are close to me. The withdrawal, the mood changes, the lack of communication. This is the monster losing itself on me. I become the monster, I become the negative feelings that I have been unable to suppress or deal with or make go away or ignore. This for me is the next stage of my depression. This is where the feelings come out. The continued functioning, but a gradual shutting down of my life, my interests, literally my personality, as the inky blackness that has taken a hold in my heart enters my brain and then my soul until there is nothing happy, being told to deal with it, that everything will be alright just doesn’t work anymore. I am loosing hope, the vital understanding and belief that we all need to get out of bed in the morning, to function and know that what we are doing is worthwhile. That is why I have included that poem at the start, because beating this is about the restoration of hope for the next minute, tomorrow, next year for those who suffer and those who are close to them. This for me is normally where the drug taking, the infidelity and the cutting or burning or tearing out of my hair occurs. It lets me feel or forget the emotions I can’t get out, it lets me, temporarily, do something about the monster, the heavy weight I have inside me constantly. This, when you are at this stage is terrible. I remember standing in a supermarket and being asked if I wanted white or wholemeal bread. I couldn’t decide, the feelings were too much, they had taken away my ability to speak or communicate in anyway, to think, to make the simplest decision. I cried in the bread aisle. I broke down and sobbed because I had reached this point again, that I felt that I had made no progress at all, that I was still reduced to so little. I cried because I didn’t know what bread I wanted, because I needed someone else to tell me what I wanted because I was so reduced. I cried because I felt I was losing the fight against myself again. I cried because I know what was coming next. 

Towards the end of this stage for me is the feeling of standing at the edge of a precipice. Below you is a dark vortex, of despair, and self loathing and the unknown. That is what I felt in the supermarket that day, and because I had reached this point before, I knew what might happen next, because it had happened before, the monster, myself, my feelings THE DEPRESSION (all these become one and indistinguishable) will push the real me over, Jennifer Layton, the bright young intelligent attractive capable young woman over the edge into myself and I will be lost again in the vortex of THE DEPRESSION.

As I have lived with the condition for so long I know now that there is no shame in asking for help. My logical rational self knows this, but it is a constant fight against THE DEPRESSION and the monster voices telling you how worthless and useless and bad and wrong I am. I know now that I can ignore these voices, that it is alright to ask for help even if it doesn’t feel it at the time. I know because I have been over that precipice several times in my life and anything on earth is preferable to going there. It has taken me several journeys, there and back to be able to find the strength to reach out during these first two stages and shout, “Help, I need help, just a little.”  It goes against everything that you feel, everything that you believe, but when you do it for the first time and everyone comes running, saying what can we do, we love you, how can we make this better, let us share your burden if it is heavy, it breaks the monster, the feelings of isolation, the lack of love in and for yourself and those you loved in the past. You know that you would do it for anyone you loved or cared for, but again, at this stage you forget you can love, yourself, your family, your friends and you forget that they love you too. Love is an alien concept in THE DEPRESSION, and if it can be restored, the belief in love and in yourself, then hope is restored as well. John Lennon was right, love is all we need at the beginning and then through everything else. It is the foundation for everything, and nothing is possible without it.  It is the first step, the first baby step toward making things right. 

Before I was able to realise this, I have hit the last stage of what my experience of depression is. This is my white hell. Imagine being inside a glass bubble, thick glass, perfectly clear, but reasonably sound proofed. It goes everywhere with you, and you cannot get out and nothing can penetrate it. Muffled noises can get through but seventy percent of real life, apart from the visual is blocked out. The numb, the white noise, the autopilot, I have used all these words to describe this stage and I hope that you may grasp what I am groping for. This is the last stage of THE DEPRESSION for me, the destination as it were. This is the stage that can continue indefinitely, it has no measured end and the beginning is soon forgotten. It is existing in the basest sense of the word. This is being pushed over the edge by your feelings, by your inability to handle them. The precipice is your brain, your body saying “ENOUGH, I CANNOT DEAL WITH THIS ANYMORE.” It’s like a switch.  I may wake up one morning and it will happen, something may happen that will cause the switch to go. My memories of these periods are quite indistinct. It feels very clean and sterile and peaceful. After the turmoil of rage, the fright, the frustration, it is calm and the calm is good. I begin to need less sleep, or more sleep, I begin to need less food. I get over the need to function, I just am. I am on autopilot, I become numb, I smile and nod and feel empty and clean inside. I am a vessel that has been scrubbed and sterilised and contains nothing, and it feels good after the previous incarnations. This is the stage where control of my eating habits begin to assert themselves. I have no desire to hurt myself, to express the rage and the pain as I did before because I no longer feel it. My brain has disassociated itself from the feelings, and also in doing so has disassociated itself from me, my vitality, my uniqueness and from life itself. I just wish to exercise and maintain this calm. I remember feeling almost Zen like, and a desire to exercise control and maintain this state of being. I look back on photos of myself from this period and I am almost emaciated, but at the time I was chasing perfection, I was pushing myself, to maintain the calm. How long could I go without food? Three and a half, nearly four days. How long can I go without sleep? Three days without drugs, five days with. These little goals, so ridiculous now, became all consuming. This is what people cannot understand when I am in this stage, my whole perception of myself is skewed and distorted, my perceptions and belief of the world are. I am living a fantasy because the reality has become too much, and reason and logic and feeling have no place in this fantasy. 

 

For all the peace, this stage is the most dangerous. This is where in the past I have stopped functioning. It is not possible to maintain this existence. This is where hope is gone. This is where you stop getting out of bed in the morning, stop washing, stop leaving the house, just stop.  Reality has feelings, and reality cannot be dealt with so, you don’t. I would happily have locked myself in my room and never left my bed at this stage. Visiting the toilet and eating become an irritation, so you eat and drink less to avoid disturbing your state.  Communication and contact are vital at this stage; these must be maintained, for me to come out of this stage. Life is an unwelcome intrusion to the blankness behind your closed eyes and inside you.  Reality must bite and it bites harder when you have drifted to this point because in order to become healthy again, you must rise back up through the waters, through the two previous stages in order to breathe again. This stage is denial, of everything, of feeling, of yourself and who and what you are. You either get out or you die. 

This is my knowledge of depression, in its entirety. It is the sum total, no holds barred. I have cried when I have written this, but I hope that is doing so I may be able to reach out to you and show that there is an end, there is hope and there is happiness and fulfilment. I know I am much stronger and determined than many people my own age, and I have achieved more in my lifetime so far than many manage in sixty years.

I have done it. I have hope and know that this condition can be controlled. The monsters are inconsequential, they are yourself, your own fears and doubts becoming real when they need not. The third stage of depression for me is a comfort zone, a mental coffin, with me (THE DEPRESSION as I become it and it me) in and everything else out. These are my own experiences, my own beliefs. They may be wildly different to your own, they may hit a note with every sentence. 

The things I have realised in order to deal with the condition is that it is absolutely imperative to learn and recognise the signs in yourself. When you see them tell people, more eyes are better than just your own, especially if your are beginning to see things differently. Take each little things in one go, every achievement, every triumph is worth celebrating. Remember these, not the failings. Remember you are human, do not expect perfection from yourself. It is okay to cry and to be vulnerable; often people love you more for it. You should love yourself more for it, because it is the bravest thing in the world to be able to do, to admit you are less than perfect, that you might need a bit of help to get sorted. I have hope and faith in you, even though I do not know you, because I have hope and faith in myself and this life. Be happy and safe and well.

Love and affection,

Jen Layton. xxxx