Posted in Blog

Happy New Year! Happy New Gigging!

First post of the year!

Sincerest apologies for the lack of blogging.

Since the new year chimed in I’ve been incredibly poorly and trying really hard to get better, whilst battling seizures and juggling assignments and volunteering. Have I mentioned how much I hate winter? Like seriously, I feel like every winter I age another ten years. Earlier this week during my therapy session, we used dolls for play therapy and when I had to choose a doll that represent me, I picked the oldest lady in the bunch, because that’s how I feel!

So I will blog about Vienna soon, but firstly I want to talk about my first gig of the year, which was Ben Howard at the O2 Brixton Academy. Brixton Academy used to be one of my fave venues until last year when I went to see Feeder, since which it’s unfortunately been a venue that makes me incredibly anxious. However, one of my new year’s resolutions is to have “Big Dick Energy” LOL. It’s a term we use a lot on “Black Twitter” for having insane amounts of confidence and while walking around Vienna, I realised that I was no longer walking using long strides and had my head down a lot, probably projecting to passersby that I’m not only not very confident, but also a target for pushing around. In a city like London, you cannot show any weakness, especially when walking through the streets and Underground stations, otherwise you get picked off by the fittest.

So, since I’ve been back, I’ve been experimenting with my hypothesis and I think I’ve proven it true! People tend to not push you out of the way if you’re walking down the streets with long strides and a fixed stare facing your front.

Anyhoo, I digress; since the Feeder gig I’ve been too anxious to go to gigs on my own and have felt extremely vulnerable, exposed to the elements of victimisation. (In December I went to see Razorlight on my own and not only did I ensure to arrive late so that I wouldn’t have to stay long, I also stayed at the back to ensure that I was around as few people as possible.) However, having booked the ticket to see Ben Howard a while back, I’ve had ample time to prepare myself mentally and was very much able to protect myself. Going to a gig is very much like a battle: you must stand firm and protect your territory and people become almost fearful of disrupting you! For the first time in ages, I had people apologising for bumping into me, and asking permission to pass me by, basically treating me like a fucking human being. For the first time in ages, I also felt safe in a crowd again. Giving off “Big Dick Energy” I guess also gives off the impression that you belong in that space, just as much as everybody else.

The last time I saw Ben Howard was at Citadel Festival in 2015. I barely remember his performance to be honest, because by then I was absolutely wasted, but I do remember it being beautiful (he was headlining so it was night time) but being extremely annoyed by the people around me screaming out the lyrics to his “hits” and then talking loudly during the songs they didn’t know the words to. It just kinda ruined the atmosphere for me (I’m a snob get over it). His last album Noonday Dream is incredibly atmospheric, so I was glad to read that during his first night at Brixton, he played it in its entirety. Many critics and “fans” however took this as him snubbing his true fans who wanted to hear him sing his classics from his debut album. So, I Forget Where We Were came out almost five years ago, this is his current album tour, so is there not a clue somewhere that he might be promoting his latest album as opposed to first hits? In 2008, I went to see Radiohead in Victoria Park for their In Rainbows tour and was not disappointed that the majority of the set contained songs from that album! It wasn’t a greatest hits tour! I knew what I was getting myself into!

So many critics accused Ben Howard of refusing to play his hits and “getting too big for his boots, forgetting his roots and the people who put him there”. When did musicians become such public property?

Ben Howard review – serious music sabotaged by a charisma vacuum

I know that Ben Howard has struggled with his fame and growing up in the public eye, which has had negative effects to his mental health. The public tend to struggle with the concept that people do grow as artists, hence their art grows too; some people perceive artists as Peter Pans who never age and I’m sure that this has a lot to do with our connections to certain songs, for instance Ben Howard’s “Keep Your Head Up” played a significant part in my mental health journey while I was still living at home when I was 27. However, just like musicians, I’ve grown too; I’m not the same person I was when that song came out and I love when artists grow with you. It almost feels like they continue to be a part of your life because you’re both changing and moving forwards, sometimes in similar directions both mentally and psychologically.

Many people online also commented that although he’s very much a studio performer, he should alter his performance to accommodate for bigger venues by interacting with the crowd more. However, interacting with the crowd is asking him to change his personality and why should he be forced to do that just because he’s famous? Secondly, to me he’s a poet who also sings (in fact, he took a break from music to focus on poetry and came back with the STUNNING Noonday Dream), so I would expect his performance to focus on lyrics as opposed to stage presence.

Finally, he did adapt his performance for a bigger venue by having two drummers and an orchestra for sound, and lighting and imagery for production! And even if he did apparently did “take 40 minutes to say hello to the crowd” (he didn’t), at least he didn’t call us a bunch of c*nts like he apparently did a few years ago!

Taken just before the encore

For me, last night’s gig was beautiful: Atmospheric, mesmerising, heartwrenching – everything I needed and expected the gig to be.

Taken during the encore – in fact, the gig was so beautiful, this was the only picture I took the entire night!

It’s just a shame that so many others failed to appreciate that. There was A LOT of talking within the crowd – which I always find incredibly rude anyway (who the fuck comes to a gig to talk?? That’s what bars and social media is for!) but it was clear from the talking on and off social media that people found the set boring.

I, on the other hand, did not.

Posted in Blog

“It’s Because of Their Mental Health Issues” – Labelling and Stigma

This might be a controversial post for some, however it’s a question I often ask myself when I look at the people around me, observing their behaviour and the way they interact with the world around them.

So the question is:

How far can somebody go with using their mental health issues as an excuse for being abusive towards others?

In other words, can you excuse somebody hurting you because they have mental health issues?

The reason I ask is because although I know and through volunteering have met some amazing people with various mental health illnesses and disorders (in fact, these are people who I have come to highly respect), on the other hand I’ve also met and witnessed people who treat others appallingly: Making racist remarks, being homophobic, being verbally abusive, physically assaulting people, committing sexual assault and even murder, and society tends to excuse the behaviour as mental instability.

Last month I was physically assaulted and it was racially motivated. The perpetrator is mentally ill and many people were divided because of that, some excusing the behaviour because of his mental health issues, while others felt that although he suffers from a mental illness there is no excuse for racism. My trauma was also minimised by some because as the perpetrator has schizophrenia he was seen by them as the victim.

What do you think?

Where I volunteer, there’s a member of our team who can be extremely abrupt and rude, even to the service users. At first, especially because I’m protective of the people we look after, my first reaction was to think of him as a dick, however I then wondered if he was perhaps on the spectrum: Because he struggles with communication and becomes very unsettled when there are interruptions to the daily schedule perhaps causing him difficulty in expressing his emotions. However, considering that the people we work with are vulnerable too, does that excuse his rude behaviour towards them?

I come to recognise (through the thankful help of therapy) that I tend to get ahead of myself in making assumptions about a person’s behaviour when actually I have not right to.

This can also be applied to us as a society.

We often excuse criminal behaviour for mental instability. Very often if a white man commits mass murder, society is very quick to label him and assume that he is mentally unstable and in need of help rather than judgement. However, as I’ve mentioned in a previous post, many young black men who have suffered horrendous trauma might commit acts of violence, yet society very rarely shows any understanding or sympathy towards them.

Those of us in the UK remember the incident earlier this year, where a white man verbally abused a black woman whose seat had been allocated next to his and because he didn’t want her to sit next to him, he shouted offensive racially abusive things to her (including calling her a “monkey” and referring to her as “that“), just because he didn’t want a black woman sitting next to him. Many white people who read the story excused the man’s behaviour because he was old and “probably had mental health issues”, but clearly the guy was a dick with no respect for women as well as being obviously racist.

I personally feel that there is a thin line between mental illness and hurting people. I’m not perfect and although my mental illnesses may not as severe as the people I come across while volunteering, I have definitely had moments of spontaneous emotion where I’m not thinking clearly about my actions and hurt people in the process. My personality issues make me extremely impulsive where I act before I’ve even had time to process the thoughts behind it. However, I am extremely remorseful afterwards, sometimes immediately, sometimes a little bit later on, sometimes longer. But I do show remorse which is very much genuine and very much off my own back.

This is important to note.

Last week while volunteering I had a conversation with one of the service users, who while in a fit of rage made some homophobic comments. He had been accused of hitting someone and in the process of saying he wouldn’t hurt anyone, he then said “it’s not like I’m going around beating up f****s“. I told him he couldn’t say what he was saying because it was offensive. He walked away but then a few minutes later came back with his head hung low and apologised; he explained that he was upset and struggling to express his feelings and sometimes when that happens he says things he doesn’t mean, however he had not meant to say what he had and was deeply ashamed. He also has schizophrenia and can struggle to sort through his own thoughts and beliefs. Being a queer woman, I had every right to be upset with him but to me, that was a blip for him; in my opinion he showed genuine remorse and he’s proven himself to be a kind soul. That conversation was actually our first real encounter and it could’ve had a negative impact on how I saw him, but he very quickly proved himself to be a kind-hearted and genuine person.

Unfortunately this isn’t always the case.

I think we really have to be mindful of how we’re using the term mental ill-health, because excusing bad behaviour as a symptom of mental illness only intensifies the stigma surrounding it, penalising the many people who are struggling to be seen as real people as opposed to monsters.

And these are my final thoughts for 2018! I’m going on the short mini-break to Vienna and I’ll be back on 2nd January, so when I’m back I’ll post about my trip as well as my highlights for 2018. Happy New Year to all of my readers and subscribers 💋 your support has been a lifeline for me! See you in 2019!

Posted in Blog, Mental Health

Friendships: Scared to Get Close

Hiiiiiiii!

I’m extremely happy; yesterday I met up with a friend for coffee and each time we see each other, it’s just fun and chilled and time just flies. I can be myself; I can struggle to get out of bed because I haven’t had a good night’s sleep, or my joints and muscles are aching, I’m feeling lethargic from the side-effects of my medication, but it feels worth the struggle; I don’t have to pretend that I’m feeling superb but still have a great time because I with a friend I can open up to.

We’ve known each other for about six or seven years now and up until this year we would only see each other when I went to one of his gigs (he’s the lead singer in a band. It wasn’t until summer of this year I realised that not only was he now my oldest friend, but we hadn’t really hung out 1:1. So since then, we’ve been meeting up to have coffee and a catch up regularly and I feel like I’m ending the year on a positive.

I may not have any family, but I have an amazing girlfriend who I’m madly in love with and a friend that I can rely on and be myself with.

It is petrifying though…

Each time I get close to somebody, they hurt me.

They want me to be somebody I’m not, they want to be able to forget my blackness so that they can say shitty things about black people and people of colour, they want to forget about my disability, they want me to give my life and everything I am to accommodate them to the detriment of myself.

In the past four years I’ve lost an entire family (both immediate and extended), best friends from school and early adulthood, and people I formed intense bonds with only to realise that our friendship had been built on sand (I still know my bible references!).

So, I am frightened of getting close to people. I’ve been rejected by both of my parents, of course I have abandonment issues!

It’s only natural right?

I’m also incredibly impulsive which leads me to make intense relationships with people I realise I hardly even know (which is actually a symptom of personality disorders). For instance: My BFF from Bumble, I had no idea where she even lived yet I truly believed I’d made a best friend for life! And I told this gal eeeeeeverything like we’d known each other for years. Which she then used against me because that was the kind of person she was and I’d failed to see it.

I guess I wear my heart on my sleeve.

So I’m scared.

But at the same time, I’m not one for standing still. I’m one for trying to pick myself up and move forwards. Therapy has taught me that not everybody is going to hurt and abandon me. Human beings are not a monolith. I’m also becoming really good at checking my judgments with others, particularly my girlfriend, just to check that I’m reading situations right and not being too impulsive with my relationships with other people. Sometimes it’s just good to check in with people you trust to protect your heart and mental health.

Posted in Blog, Mental Health

Why Doesn’t Anyone Check In? Pt. 2

As I was sobbing to my girlfriend on Wednesday night, it became unclear what I was most upset about: my ailing health, or my loneliness.

As I mentioned in my previous post, people perceive me as somebody who can look after themselves so they forget to check in on me. In fact, I think that my girlfriend is now the only person who has seen me ugly cry, and at my lowest points. But that’s probably because we live together. Even then, sometimes she forgets that I’m not always good at taking care of myself and need a little help.

As I mentioned in the previous post, I’m the kind of person who checks in on people without needing to be asked. I just fucking care so hard about the people I love.

As a blogger, I am aware that I’m very adept at creating the allusion that I can look after myself, that I’m strong and determined and I think that I’m also probably good at throwing this perception of myself into real life settings. Upon reflection, at times, I can be incredibly dishonest when people ask if I’m ok. Only a very small handful of my friends can instantly tell when I’m lying. This is not because I expect people to be psychic, or play “guess how I’m really feeling”; I think a lot of it comes from pride and not wanting to be the sick girl. There is so much stigma around being sick, particularly within communities and although I’m an advocate for mental health issues and epilepsy awareness, sometimes I’m just sick of battling the stigma especially from people I know. I see the eye rolls and the awkward checking-of-the-time to get out of a conversation with me. And it’s not like I’m constantly going on about my health; if I’m bringing it up, it’s because I’m feeling particularly shitty and am desperately reaching out, but I rarely find a hand to grasp while I’m reaching leaving me waving into empty air.

I can also be surrounded by people but feel incredibly lonely. When I’m around able-bodied people, I feel like I can’t really open up about my disabilities without bringing a black cloud to the gathering; when I’m around white people, I’m forced to reserve my true feelings of discomfort as they ignore incidents of racism, because I don’t want to be accused of steering the conversation “back to me” or playing the all-allusive “race card”. In fact, around particular people, I’m starting to feel like the minstrel again, where I’m only tolerated when I perform the role of the joker or happy girl. I was talking this through to my therapist, who responded that she felt like I was in bondage like a slave, who wasn’t allowed to open her mouth unless given permission, which I completely agree with.

I recently quoted this on Twitter and I’ll say it again here: last week on Celebs Go Dating (we all know that I’m a slut for reality TV), Chloe Simms said:

I’m too tired to give a shit about anybody else right now.

For me, this was such a MOOD!

Around certain people, I do feel that I care too much about what they think, how they might react; basically I’m not myself around these people. Fortunately these are not people I invest a lot of time in, but it’s still time which is energy. And now I’m too tired to give a shit.

This has given me a lot to think about! And I hope it resonates with some of you too about looking after yourself when the people around you might be failing in some aspects. Please feel free to share your thoughts in the comments.

XOXO

Posted in Blog, Mental Health

Why Doesn’t Anyone Check In? Pt. 1

As I mentioned in my last post, I’ve been really struggling with my mental health recently, as well as battling an increase in seizures.

I found a draft post that I starting writing weeks ago and never finished, about sometimes feeling like a “Billy No Mates”. Some people put this down to age: once you start reaching your late-twenties/early thirties, existing friendships dwindle and it becomes more difficult to ignite new friendships (don’t we miss the days when you could just walk up to somebody and ask them to be your best friend? LOL). When you have a chronic health condition too, nobody really wants to be friends with you, when you’re the one who’s always cancelling plans at the last minute and aren’t really that much fun anymore.

However, although I can relate to both of these, I also think that I give off an impression that I can look after myself, so people don’t think to check in on me. I was discussing this in my most recent therapy session: I’m the kind of person who, if I know you’re going through a shit time, I’m going to check in on you. You need to know that you’re loved and I need to know that you’re still alive. But I rarely, if ever if I’m honest, receive the same back. Don’t get it twisted, I don’t give to receive, but when I’m hanging off the edge of cliff, I can’t be expected to save my bloody self really, can I?

In yesterday’s session I brought up my mother and my anger that she fails to check in on me, even though we’re not talking and this is something she actually failed to do, even when we were apparently close and was something I desperately needed particularly after my epilepsy diagnosis but I never got. At least my sister would check in to make sure I’d eaten, but my mother… nothing. If she heard from me, then that would be her confirmation that I was still alive.

Whenever I confronted her about this, her argument was that she knew that God was taking care of me, to which my response was, so does God relinquish your responsibilities as a mother? Sometimes, my therapist and I do role-playing in our sessions, where she will play the role of the person I have the conflict with, while I – as myself – take this opportunity to not only confront that person but simultaneously hear their point-of-view of the conflict between us. It’s also a great way of bringing past conflicts into the present and I always find this technique extremely enlightening. It went as follows:

Me: why don’t check in on me? It’s like you don’t seem to care about me.

Mother: Well,  you’ve always been really good at looking after yourself… and I just don’t want to look after anymore you because I’m tired of having to do it. I’ve done enough.

I often think that my mother was never prepared for motherhood and then being thrown into single-parenthood was just too much for her.

I often think that she never wanted to be a mother – particularly to me; it was a role forced upon her by her environment.

I often think that she resented and blamed me for putting her into those situations.

I often think that while I was the practice child, my sister who followed me was the one who received everything my mother could never give me.

Although my mother thinks that she took care of me, our perceptions of my childhood are complete polar opposites: I was consistently lonely and emotionally, psychologically and physically (denial of treatment for my epilepsy) neglected, forcing me into extreme survival mode, taking on the role of the parent for myself.

I’ve been reading a lot recently too, which I’ll get into more in a future post, but I just wanted to reference Halsey Street by Naima Coster, because without wanting to give too much away, like me the female protagonist is often perceived as this tough young woman who can look after herself, when inside she’s still the broken child crying out to be loved and like her mother who made sure that she was one to walk out on her family, mine always wanted to be the one who walked out on us instead of our father.

(Header image source) 

Have you been forced into looking after yourself and often find it difficult to balance that kind of self care with showing a side that people can reach out to when you need it? If so, I’d love to know how you deal with it in the comments.

Posted in Blog, Mental Health

Medication Update: Epilepsy AND Mental Health

A lot my fellow bloggers are taking part in the Epilepsy #BlogRelay this month and as always I’m late to the party! I did intend to participate every day, however I’ve been extremely unwell and even now I’m not feeling any better. Better late than never right!

I was also supposed to take part in #NaNoWriMo (National Novel Writing Month) but obviously that’s been put on the back-burner too.

Seizure control has taken a turn for the worse lately. I actually had two seizures this morning and I’ve been having multiple everyday since Sunday. I saw my epilepsy team today and we’ve agreed to increase my Lacosamide doses to see if that has any effect. As we know, seizures can also be affected by seasons; I just think that it’s a combination of the season change and being so under-the-weather, so I am hoping that the dose change will be effective over the winter and then if it works, perhaps I can decrease over the summer.

Speaking of season changes, I always used to laugh off my dip in mood during the winter months. I have dips over the course of the year, however over recent years I’ve definitely noticed my mental health becoming quite unbearable during the winter and in retrospect it’s been a recurring issue for a number of years which I’ve failed to address. I do recall a friend once mentioning SAD (Seasonal Affective Disorder), suggesting that I might be affected by that however I laughed it off. Then last month, my girlfriend and I went away on holiday to Mallorca and I literally felt rejuvenated by the sunshine, warmth and sense of happiness and freedom the sun brings. When we returned to the UK, I immediately felt overcome with a heavy sadness and oppression, which I initially brushed off as post-holiday blues. Until I began to find it more and more difficult to get out of bed. Then I was suddenly crying for hours for no apparent reason.

I was due for a GP visit anyway, as I’d been asked to book a medication review for my AEDs, however I decided to use the opportunity to hijack the spotlight from my epilepsy and shine it on my mental health. Come to think of it, I’ve never been called in for a review of anti-depressants yet I’ve been on-and-off them since I was 19 years old. Unless I go and visit a GP to discuss them using my own initiative, concern for my wellbeing on anti-depressants has always been a big fat zero. The annoying thing is that GPs know very little to nothing about AEDs, therefore these medication reviews are more of a tick box exercise than actual care and concern for my wellbeing in my opinion.

So, once I’d gone through the formalities of review questions, I swiftly steered the attention to my mental health. The GP was reluctant to discuss it, was actually visibly uncomfortable with talking about it (???) and when I asked if I could increase my dose of anti-depressants just for over the winter months, I was immediately dismissed. At first she advised that she was always hesitant to increase anti-depressants until we’d seen the full affect and particularly if nothing else has been tried. Fair enough. However, doesn’t relate to my situation because…

  • Firstly, I’ve been on Fluoxetine for a fucking year.
  • Secondly, I’m already in therapy (which is on my file), therefore am also relying on alternative therapies as well as pharmacotherapy (medication).
  • Thirdly, she then asked if I’d ever tried Talking Therapies – because it’s on my file that I’m seeing a private therapist, but nothing on the NHS has been offered – I said yes but not recently. She then moved on from the subject of therapy instead of asking any further questions! To me, this is an obscene disregard for duty of care and something I have experienced regularly when it comes to my mental health.

She then expressed her concerns about what effect the increase in Fluoxetine will do to my seizure-threshold. Thankfully, I know that this is nonsense, (which was confirmed by my consultant in today’s appointment!) but can you imagine if I wasn’t as clued up as I am. And this is the fundamental problem with co-morbidity: clinicians tend to focus on only one condition and tend to prefer to ignore the others. As my consultant rightly pointed out, many patients with epilepsy also battle mental health issues which then affects their epilepsy. If I can’t get out of bed in the morning because of mental health issues, I’m skipping meals which then guess what? Triggers seizures, so why wouldn’t you want to treat the mental health issues? It is so bizarre.

So after arguing my case with the GP, I won the battle. I’m increasing my Fluoxetine. With the recent increase in Lacosamide, this means I might be a bit zombie-like during the winter months, but if I’m a happy seizure-free zombie, then I ain’t going to complain!

It’s also amazing to have such an awesome specialist team by my side and I am forever thankful. My GP actually gave me a letter to pass onto them about the increase in Fluoxetine, with her concerns about seizure-threshold and my consultant refused to take it, after throwing a fit at how frustrating GPs are for constantly believing in AEDs myths and congratulating me for arguing my case.

Welcome to my world mate.

Do you have epilepsy or another chronic illness and find that your mental health and wellbeing is often ignored? I’d really love to hear your thoughts and experiences in the comments below.

XOXO

Posted in Blog, Short Stories

The Label [Flash Fiction]

She turned the label over in her hands; the white background illuminated the handwritten dark font printed on its face. It had been attached to her bag, perhaps as she was walking through the dense corridors of school. Focussed on getting from one classroom to another with as much speed as her legs could carry her five-foot four-inch body, she guessed she hadn’t noticed anybody pinning the label onto her backpack.

She turned it back over as tears began to run down her cherub cheeks, then into her lap. As she was hiding in the haven of the girls’ toilets, nobody could hear her crying out in pain; the knife of humiliation stabbed her in the chest as her heart broke for the girl she would never be. She would never be like the other girls: slim with long legs and pert bums perfect for their skinny jeans; small, delicate chests, perfectly made for their boyfriend’s t-shirts. As she sobbed even harder, the stale smell of the school toilet became drowned out by the grief of a first romance she had not been privy to. Her heavy chest heaved over her round stomach; as she hugged her chest closer to her, she imagined herself in the arms of another she had not yet had; bitter tears kissed her virgin lips.

She turned the label back around, to read the cruel words one final time: “lard arse”. As she meditated on those words, her devastation transformed into anger; her thoughts of helplessness became foundations for a plan of action.

A plan for revenge.

 

© Cece Alex Noel, 2018