This week’s Guest Blog spot has kindly been written by an old friend of mine, Barry. This covers the subjects of his anxiety, depression and Asperger’s syndrome diagnosis as a child and the fact he only came to terms with the acknowledgement and acceptance of these diagnosis as an adult.
Barry has poured his heart in to letting you in to in to his experiences, to help spread awareness and to let you know the importance of having a solid support network
Good morning, afternoon or evening to whoever may be reading this. My name is Barry and I have known Rachael (the mind behind this very website) ever since we were both in primary school and she very kindly asked me to write about my own experiences dealing with lifelong anxiety and depression (or moderate-severe depression as per officialdom), combined with the additional diagnosis of Asperger’s Syndrome.
It was tough to write this, not only on a personal level but because it was tough to narrow it all down without self-editing going on, but I have the gist of what I’m trying to describe to your eyes and stuff.
Right, where do we start? I was born in a hospital in Derry with an armed soldier in the operating room. From there it gets boring. My mother was married at the time to a soldier situated in Northern Ireland and shortly afterwards we relocated to my mum’s manor, Ipswich. Father moved on and left me and my ma in an area that she didn’t like but seemed wonderful to me.
It was rough and grimy but I used to enjoy playing with the other children on the street. However, just before the age of 7 we moved in with my new step-dad it was a much quieter and civilised road – no kids playing on the street in this lower-middle-class area – so this began a change in character, becoming more withdrawn and solitary, but in a way this led to developing more of a taste in music and films.
I discovered the wonders of reading, ranging from comic books, old annuals from the 60s and 70s and art books. I used to sit for hours and gaze in wonder at works of beauty from the Renaissance or the detailed full-colour atrocities of Hieronymus Bosch’s “The Garden of Earthly Delights” and Goya’s infamous black paintings, such as the graphic painting of Neptune eating his son. Also, I discovered world cinema and silent films mainly via Saturday afternoon programming on Channel 4.
While other kids went to sports clubs and other social things, but I preferred to be at home watching films such as ‘Safety Last’ and ‘The Gold Rush’ and loving every moment. I also developed a taste for foreign films, in addition to a previous love for horror and action films. Naturally as a young boy I also had a love of lowest-common-denominator garbage that was not suitable for young ‘uns like us but it didn’t do me (or the others at school) any harm.
Another moment for me was discovering the local library and reading all sorts of books, ranging from grown up fiction by the likes of JD Salinger to books about cinema, censorship and music. I began to develop a taste for wanting to learn more about the mechanical process behind both films and music, which then led on to learning musical instruments.
My step-dad had a drum kit and I managed to twist his arm into practicing on it on a few Saturdays, but for some reason he didn’t want me to “compete” with him so I later graduated to bass guitar.
My mother tried to raise me as best as she could, but not all of the choices were particularly wise. I’m pretty sure my diet was terrible, I was also quite a poorly child who hated school and never felt like I fitted in.
I also realised at this stage that my mother’s side of the family (I cannot speak for my father) all had anger management issues and had a very short fuse, which to no one’s surprise kicked in for me around the time I had my initial diagnosis of Asperger’s Syndrome. One cannot assume that other members of my family are on the so-called ‘spectrum’ (more on that later), mainly because my family have always been close-lipped. My life is one where questions were never asked and it is rare for a satisfactory conclusion to unfold.
My memories of the initial diagnosis were either deliberately blocked out by me or delivered in hushed tones between my mother and the step-dad. Needless to say my problems at school prompted this and I would be whisked out of school early to see a counsellor.
I remember not being happy when I could have been at home watching the TV instead, and proceeded to be silent throughout most of the sessions only talking near the end. I remember taking a test but nothing else. Maybe my parents were in denial because it would be seen as a stigma, but I cannot be entirely sure. But when the headmaster loudly mentioning my sessions to the teacher, the bullying certainly ramped up.
Moving onto secondary school and things seemed to get better. I reined in my short temper and reverted inward. Initially this helped me cope but what seemed to start as anger issues gradually turned into severe depression.
At first the school tried to help by shortening the days and even giving me short 1:1 sessions in the assisted learning block, as this was all taking a toll on my energy and my wellbeing, but I probably rejected it as I felt there was nothing wrong with me. It was around this time that I was officially told about my Asperger’s diagnosis but any offer of support was not elaborated on, and it appears that mother chose to bat away any offers of support.
My doctor initially suggested a trial dose of anti-depressants (child-friendly levels presumably), but nothing worked. I simply ate as a way to get through it all. When the GP looked at this, he simply upped the dose. This only further detached me from the real world and I developed some weird obsessions which made me look absolutely dumb and child-like. I guess you could say I regressed. Anyway, it all came to a head in January 2000 and I had a proper full-on nervous breakdown, the first proper one that I had been building up too. Something completely inconsequential and random caused it. And that was it: I stayed in my room and never came out, with the exception of a transfer to another school dealing with pupils who had problems with regular school to complete my GCSEs.
Once school was done with, I stayed in my room and wasted a few years. Friends from my previous school would knock on the door with genuine concern wanting to see me, but I didn’t answer the door. Instead I would hide upstairs looking out the window at them secretly. I got a strange kick out of denying stuff to myself but needing to feel wanted. In all honesty, my mind was all over the place at this time. Around the time of the breakdown I swore off anti-depressants and didn’t go out.
Looking back, I appeared to have regressed and set myself back for a number of years, all endorsed by my mother. I am sure she meant well, but once I finally crawled out of that sorry state of mind I have alternated between love, distrust and anger towards her.
I still don’t feel comfortable with some of her decisions and I feel that it has held me back and destroyed any confidence and trust that I have in people. It still takes a long time for me to trust others and it sometimes crosses over into paranoia and suspicion, even if others are genuinely good people. This has cost me friendships over the years. On the plus side, this steely reserve did protect me from being overly taken advantage of or ridiculed by people.
I was still in a dark place and I was off in my own world. The depression and the tangled way my brain operated at the time did not help. Sometimes it seems like a miracle that I am in the current situation I am in today. It did not help that I chose to hide my Asperger’s diagnosis.
For once, this was my decision. I felt like enough of an outsider, I had no way of processing who I was or what the world was like. It was hard enough to go from A to B without having to point out my diagnosis and my mental health issues.
The adult world slowly became a nasty cruel place which could use my quirks as ammunition right back at me, so I pretended that everything was okay. When I look back at this period, it’s all so painful and it is impossible to remove it all or to even see any good points. It was a waste of a life.
Connecting with like minded people..
The only respite was reading film and music magazines for stuff to check out, going down to the Corn Exchange Film Theatre – specifically the tiny, cosy second screen – to watch loads of obscure films (I discovered ‘8½’ and ‘Bicycle Thieves’ this way) and a 4 year period of hosting my own haphazard radio show on a local station. Even these were psychological and social nightmares which needed to be overcome and even then I look back and wince at whatever social interactions I took part in.
Despite this I began to make slow but steady steps in into the world of normalcy and started speaking to other people, those that loved the same film and music as me.
Mainly, the Internet turned out to be a surprisingly good outlet for social interactivity and through conversing with others all over the UK and elsewhere, I began to make my own decisions to meet up with people in London.
Mum was initially opposed to this and it did lead to a fair amount of screaming from me, but eventually she relented and it was a wonderful experience. With a love for demented, obscure low-budget films, other fans from the US and Australia kept recommending stuff, books about particular directors or scenes led to the discovery of pristine quality DVDs. It was wonderful to exchange e-mails with authors, directors and musicians and have some delightful and enlightening discussions.
Some time later, I chatted to someone living in Norwich and was invited up for a house party, where I met a number of people who would have a positive effect on me. Locally, when I discovered the admittedly small and deliberately closed off local music scene in Ipswich, I wanted to try and fit in but I would have panic attacks even thinking of going to places like the Steamboat Tavern.
I felt more comfortable heading down to Norwich, especially since some of the more notable bands I wanted to see stopped off there. Slowly but surely, I was introduced to folks all over the place, went to gigs, slept on settees and had a great time. Through these friends, I even managed to take part in a guitar orchestra led by the late composer Glenn Branca at the Roundhouse in 2007, followed by a trip to Rome in 2008 replete with severe food poisoning. Thanks to these experiences, I began to become more empowered and more keen to make tentative stabs at becoming more independent. This all accumulated in me moving to Bristol in early 2008.
However, from this period up until a few years later I was attaching myself to people like a lamprey eel, blissfully unaware that my “I have friends now and I don’t want to lose them” only served to drive people away or make them dread ever meeting me. Unfortunately, this carried on when I moved to Bristol to share a house with some friends. As I was still keeping my diagnosis under wraps and was hesitant to open up and be honest, I caused damage with my pettiness, childishness and random outbursts.
Only when I had to find another place to stay with people I didn’t know and didn’t really see that often did I only get a true understanding of personal space. Although there were some good moments to cherish, I can only see the damage caused by not being honest and truthful.
Socially, things were better. I began to become more self-aware but not totally. I assumed that everyone thought that I was some sort of unpredictable eccentric and left it at that. I was recording my own music and playing with all sorts of wacky combos, recording demos and playing gigs in Bristol, Edinburgh and London.
Meeting my wife..
At some point, I was invited to a house party wherein I became totally smitten with a beautiful blonde who happened to have a killer collection of records and films. She admitted that she didn’t know what I was all about but we eventually met up for an incredibly fascinating and engaging chat down at her local pub and we’ve been together ever since.
For all the sturm und drang that I would occasionally blurt and holler out, we did care for each other and always wanted to resolve these issues in a tactful and adult manner. She has been such a stabilising influence on my life and I will always be in debt to her for helping me change my life for the better. I even became vegetarian not long after we got together. We started a family when our wonderful daughter arrived in 2012 followed by a wonderful hip ‘n’ happenin’ wedding in 2015.
However, because of the events around 1999/2000 I had sworn off anti-depressants despite the fact that my depression and unpredictable mood swings were consuming me and destroying me.
One-on-one and group counselling sessions had no effect on me. It was the wife’s urging following a horrid breakdown in 2013 when she demanded for me to see the GP about commencing anti-depressants. Initially I tried Sertraline and was on it for roughly 4 years. Initially it worked like a charm, but it then began to wear off despite increasing doses.
By 2018 I was unhappy in my current job and the line manager absolutely despised me and would not hesitate in arranging last-minute meetings which only served to demoralise me further.
At the same time, I was weaning off the Sertraline and these events conspired to leave me a nervous gibbering wreck and led to a long period off work. Amazingly, I still had enough energy to attempt the whole applying for jobs joy. I went for an interview within the NHS and – despite suffering crushing brain zaps throughout – they liked the cut of my gib and I got the job.
By winter I was still a wreck, my stress was through the roof and my intense anxiety made it impossible for me leave the house, at least not without a tantrum. I was withdrawing from everyone, even my own wife and daughter and I got no joy from whatever used to interest me. I didn’t want to talk to anyone – if I saw long lost friends I would do my best to avoid them at all costs.
The first acknowledgement..
But then I left a clinic letter out on the kitchen table which listed Asperger’s Syndrome as part of my past medical history. The wife read it and asked what on Earth was going on. At first I screamed that it was a mistake and I didn’t have it, but soon she was able to gently get me to be open and honest about my diagnoses, and particularly why I chose to keep it secret from my friends for so long.
My feeling was that by admitting it I would be giving in to the diagnosis and returning to the childlike state of 2000 and using it as a way of getting my own way. My wife reassured me that this would not be the case and that by being open about this, it would be a lot easier for me to seek help and support.
Things started moving slowly but surely. I still found it tough to acknowledge my condition privately but my wife has been a loyal supporter throughout and if it wasn’t for her, who knows what would have happened. The acknowledgment of my diagnosis also helped to put a lot of my problems with anxiety and moderate-severe depression (as per the GP’s description) into perspective.
Understanding and accepting Asperger’s..
At the same time relocating to a much better and fully understanding GP also provided another major leap and I made a number of important decisions: firstly, I opened up to my bosses and not only were they considerably understanding, they also helped me relocate to a quieter desk to improve my day-to-day work experience; secondly, I published a statement on my Facebook account to inform my friends; and thirdly, I was encouraged to fully come to terms with my diagnosis by picking up a number of books specifically tailored towards Asperger’s Syndrome – the first one focused on anxiety and depression, although there was a slight slip up early on where one anonymous contributor said that they like the music of Chris De Burgh, but I ignored that and read on.
However, the most important and most effective book was “Parallel Play” written by the US classical music scholar Tim Page, who was diagnosed with Asperger’s in middle age but used it to come to terms with all the previously difficult to answer questions about his life so far.
It certainly helped that he also loved the music of Captain Beefheart, Steve Reich and Philip Glass and was there for the premiere of Reich’s “Music For 18 Musicians” (my all-time favourite piece of music). I have corresponded with Page quite a lot and it has been absolutely wonderful to connect with like-minded souls that happen to share the same diagnosis. I would highly recommend this book to other people with the same diagnosis.
Finally, I was encouraged by a number of friends to start writing, resulting in a blog (tremendousproteinvalue.blogspot.co.uk – warning: some of the stuff is very NSFW) devoted to a variety of subjects, admittedly obscure yet stuff that I felt was still slightly neglected and not covered that often.
However, it was also a time of massive emotional upheaval as I was also in the midst one of my lowest ebbs. In summer 2019, I went on holiday with the in-laws and my burning dislike of them only intensified. I had an utterly miserable time and was locked into a very negative frame of mind. I had started cutting my arms again around that time and didn’t give a fuck about hiding them.
I was called a “joy vacuum” by my brother-in-law and for once he was actually quite right. My wife threatened to kick me out of the house unless I sought help immediately. My new GP trialled me on Mirtazipine. This helped me sleep (insomnia has always been part of my life) but I felt like a zombie for the first few days, I ate like a motherfucker and put on so much weight in a short space of time and I was still utterly miserable.
Cue another breakdown. As a sidenote, the only positive outcomes for me when it comes to full-on emotional breakdowns is a strange liberation and open-mindedness that tends to pop up after going through the worst parts. It is strange to describe but examples could be the times where I discovered that I learn to love old school hip-hop and the most recent episode where I decided that tea is far more preferable to coffee.
However I was reading up on the difference between SSRI medication (yer Prozacs, Sertralines) and SNRIs. The GP and I had a detailed discussion and she commenced me on Venlafaxine by November 2019. On the surface, things changed radically almost overnight. My appetite went down to practically nothing, I began to become more upbeat and sociable, actively wanting to be involved with my family and engaging with them. There were less freak outs and the tantrums went down to practically zero. I have become much more focused at work and even the desire to write is coming back.
On the up..
Venlafaxine (even on the low dose that I am currently on) is like a miracle drug, so much that the wife feels like she cannot cope with the constant upbeat joviality, but I know this is probably not going to last forever. The most important part that I need to focus on is how to develop effective coping strategies in the long-term.
As for short-term solutions: listening to music and podcasts (Chart Music, Mental Illness Happy Hour and Adam Buxton’s podcast are essential listening), tons of reading and checking out rare, weird, obscure films – both high-brow and oh-so-incredibly low-brow – are my ways of coping, reading long and expansive articles about film restoration, reading articles about recording engineers and all sorts of esoteric stuff…they’re my bag at the mo.
Oh, and keeping my dark sense of humour and ludicrous flights of fancy is always important. And also looking at pictures of cute animals. One of the main features that people I know particularly enjoy is my sense of humour and encyclopaedic knowledge about stuff that is not important whatsoever.
I am making tentative steps to being the sociable man I used to be and it can be a challenge but thanks to the anti-depressants I am not wracked with the anxiety and the daily spectre of doom that was previously swamping me like a blanket of shit. I’m getting better, I’m managing things a lot better, my confidence is returning and I’m being much more of a sympathetic husband and father that I always wanted to be. But that’s not the nice neat tidy conclusion you were hoping for. It’s still hard for me to put on a brave face and be sure of myself on a day-to-day basis.
Thank you, Barry!
This was one man’s story and as with most mental illnesses, is an on going journey. I was incredibly proud when Barry posted his Facebook status announcing his diagnosis, it was extremely courageous and inspiring, and I was extremely honoured when he agreed to do a guest blog on my site.
I would like to thank Barry for taking the time to talk about this and to share his experiences with his anxiety, depression and Asperger’s diagnosis.
Also, I’d like reiterate, as I often do, how important it is to be kind to each other, you don’t truly know what that other person is going through.
It’s okay to not be okay, it’s okay to ask for help.
I’d also like to extend my offer to anyone who has a story about their mental health that they would like to share on future guest blog spots. It could be about a geeky fandom that helped you understand what you were experiencing, or helped you through some bad times, or just a story of discovery you want to share.
Last week I shared a blog post of things I like about myself, which I find helped me, and I hope that writing this blog will help Barry feel better about his future with Asperger’s syndrome.
If this interests you, please contact me on any social media platforms below, or email me on Tgatbmystory@gmail.com
Please also feel free to post below or message me with your supportive comments to Barry.
Stay strong everyone, you’re all doing amazing.
Love, Ray X