Random people call me “high-functioning.” They will tell me I have “high-functioning” autism. This is strange. They do it to other autistic people too. It’s an unhelpful label in every single ‘hidden’ disability.
My diagnosis is Autistic Spectrum Disorder with high support needs, (Level 2) and co-existing diagnoses. (A more accurate term is ‘situational autism support needs.’)
Calling me “high-functioning,” puts me under even more pressure to meet your non-autistic expectations. It’s like being French and having to hide your strong accent, culture, identity, confusion, etc.
You can’t see my support needs and maybe I don’t feel safe to show you them.
Random people inform me that my autism is “mild,” like a tolerable curry. YOU might experience my autism mildly, but my autism has always ‘held hands’ with suicidality.
People say, “be yourself,” without realising how unsafe that would be. The same people correct our behaviour using shaming, punishments and rejection. According to them, the more different we are from them, the more severe our autism is.
The only way to know how disabling autism is, is to ask the individual. It will depend on the expectations they’re trying to meet, and the support and acceptance of the people around them.
My concentration decreases by about 90% during eye-contact. It feels like I am consciously looking into the sun, but I attempt it for YOUR comfort.
A person’s eye movements, and the changing details on a face, are FASCINATING to me. But I cannot ‘read meaning’ from these details the way non-autistic people can. Mimicking the eye-contact of the person in my company is something I have been conditioned to do. For me, eye-contact is not my instinct; but I will “make” it because it is important to YOU.
My autism does not co-exist with physical speech or learning diagnoses. But autism makes my talking ability fluctuate in extremes.
Giving factual information about something I know a lot about, giving people information I have scripted, delivering a lesson to children about a specific topic, helping someone with a clear need, retelling an event I have witnessed and responding to a direct question like “do you like rice pudding?” are things I am really good at!
Instigating conversations, ‘small talk,’ and spontaneous verbal interactions are some of the things I need support to do.
During overwhelm I am minimally vocal or mute. My communication preference is not talking, but this makes society question my intelligence.
Sensory differences in the way I experience the world and my body’s internal organs, mean there are entire topics I need support to identify, verbalise and manage, i.e., needs, feelings and emotions.
Many in my autistic community find it hard to comprehend why talking is so important to ‘neurotypical’ people, but we accept it.
My friend is called “low functioning,” by the non-autistic community, because he has speech dyspraxia. He can’t understand why you call him “low-functioning” when he works full time, lives independently and has no mental health problems.
I was so “high-functioning” in this environment it was unsustainable.
Yes, I chose a job in an environment I have been in since aged 4. I intricately studied my teachers’ behaviour and knew exactly the type of teacher I wanted to be. Struggling with learning gave me empathy for others who struggle with learning. Giving information about a topic I have planned, scripted and rehearsed is something I am good at. Breaking down learning, making things make sense, and delivering information visually are things I do easily because they are things I need myself. Communicating with children, in an environment I have created myself, is developmentally within my communication limit.
But in my daily life, where the rules, expectations and people are changeable and unclear, my ‘functioning abilities’ are considerably less.
True. The differences are age, gender, personality, upbringing, values, life lessons, expectations of those around us, … etc.
Your son already has occupational therapy, sensory integration, accommodations that I am finally accessing as an adult. Your son is accepted and safe in all of his environments. Your son functions within his limits meaning he is less likely to find himself under mental health services. His abilities and disabilities are valued. Your son probably won’t obsess over books about ‘how to read body language,’ and ‘how to be more like a human.’ Or Google endless questions like “why am I stupid?”
Your unique, four-year-old autistic son’s autism is incomparable to mine, and so are his personal feelings about it. Autism is not a one-dimensional, one-size-fits-all neuro-type and we all have a diagnosis for a reason.
But I relate to him better than I relate to you.
You’re going to strip me of my authentic identity, encourage me to ‘act’ non-autistic, and then tell me we are all a little bit the same?
Autism is as diverse as non-autism, and you’re either autistic or you’re not. Autism is humanness in the extremes and when you fall into these extremes you receive a diagnosis because the world is not designed for extremes. A person’s autism needs will fluctuate depending on who they are with, and the environment they are in.
If they’re doing a particularly great job of ‘masking’ their autism, it might be because you’re not safe enough to show it to.
“She asked me direct questions with no judgement; I didn’t feel like a problem!” 🙏🏻
I’m 21 weeks pregnant today – things are really happy and exciting! Especially now I can feel the baby (Cub) moving! 🥰 For me, the toughest part of pregnancy is the appointments. When you have ‘additional needs’ you get referred to additional professionals, which, is tougher than you might think.
Health appointments and face-to-face interactions where the focus is ‘talking,’ challenges my autism the most: the risk of it going wrong is very high; the ‘mask,’ fits extra tight and bad memories of negative responses fill up my mind. 🤯
Health professionals are usually non-autistic people, who have been trained to help non-autistic people, in environments that have been designed by non-autistic people, for non-autistic people. (The only way for you to understand the difficulties here, is if you could swap brains with me, go into a healthcare setting and sit face-to-face with a healthcare professional.)
The expectation is that I will be able to use verbal language to communicate physical feelings, needs, senses and emotions the way non-autistic people do. And when I’m not successful at processing the language and appearing non-autistic, I am ashamed and subsequently unwell.
Today I went (with my midwife, who is amazing) to visit the obstetrician for the first time; and I’m writing about it because it was a positive experience that I want to remember.
[FIRST, SOME FACTS]
Having your basic human needs met when you have a lifelong, hidden disability like autism, (with no *obvious speech difference) rarely ever happens.
Rather than be helped to access [appointments] successfully, we’re ignored, (or we have to exclude ourselves for safety, to protect our shame and mental health), or, it is assumed we will have anxiety and be labelled “non-compliant.” (I’ll leave you to imagine how this feels.)
The alternative is that we will ‘mask,’ our disabilities for the comfort of the non-autistic people/professionals around us. We do this by mimicking eye-contact, body language, face expressions, etc., hiding our innate soothing behaviours, hiding emotions, confusion and communication styles, scripting conversations in advance and, tolerating overwhelming environmental distractions.
Sometimes, ‘masking’ autism support needs is what keeps us safe from bullying, abuse, rejection and wrong assumptions from others; (we will have learned this by experience at a very young age.)
The mental health consequences of ‘masking,’ and the (burnout/self-worth) crises behind closed doors, are severe.
[MEETING THE OBSTETRICIAN]
I was scared of meeting the obstetrician doctor, because ‘on paper,’ there are (bad) words about me, that might make a stranger underestimate my abilities: words like: ‘autism,’ ‘bipolar,’ ‘inpatient,’ ‘disabilities,’ ‘impairments,’ etc, etc.
But despite the paranoia, the obstetrician appointment went really well, and, these are the reasons why:
• She read my whole autism assessment profile before meeting me. This never happens; it felt (validating?) My assessment was an emergency, and the document (in the right hands) has saved my life and made it easier to live. It saves a LOT of misunderstandings too, when people read the specific details of my diagnoses.
• She asked me direct questions with no judgement; I didn’t feel like a ‘problem;’ I felt like she was just (interested?)
• She let me ask her loads of questions about her job and what she does (I’m super interested in medical jobs and surgery!)
• She looked at my visual communication aids and told me they were excellent. She’s asked me if she can have some for all the maternity wards, and of course I’m delighted to help!
• She told me the way I engage with the community and perinatal mental health teams, the trusting relationship I’ve built with my nurse, and the way I manage medication, is admirable and reassuring.
• She said my midwife and I are a “supersonic team” working hard to make everything successfully accessible; we’ll do tours of the wards, theatre etc., soon.
• She said if Cub and I need to go to the mother and baby psych unit at Melbury after birth, to re-stabilise meds (or manage any circumstances) it’s a positive, “good mummy,” thing to cooperate with. It is nothing to be ashamed of, and no reflection on my ability as a mum at all. And we will do a tour of the ward in advance.
• She asked about communication difficulties during labour – the chance of being non-verbal, situational mutism, and/or not processing verbal instructions and quick decisions – and said we will make visual communication aids for every eventuality.
• She told me my life experiences and mental difficulties – and all the skills I’ve learned over the past six years as a result – will make me a wise, attentive and empathic mummy, and a brilliant peer support worker for autistic mental health patients in the future! And when I said “I am a teacher,” she said I am “many things!”
I want to remember all of this
People close to me will know I am definitely not used to this; I am used to hearing language used about me that is negative, presumptive and disabling; but I felt really (involved, empowered?) and part of a team working together. Maybe respected, like a real lioness human, despite the things I struggle with, that others take for granted.
I also learned that physically, I am very low risk, and my carbon monoxide is 0% 🙂 Just a really good experience all round; I might start a mini-blog diary of my pregnancy for memories; I’m so proud of me and my Cub!
In 1988, Gregory Maguire wrote the novel Wicked: The Life and Times of the Wicked Witch of the West, as a prequel to the children’s novel The Wizard of Oz, by Lyman Frank Baum.
Gregory Maguire always had problems with The Wizard of Oz. While most people unquestionably followed the adventures of Dorothy, Toto and their straw, tin, and lion friends through the land of Oz, Gregory Maguire dwelled on the novel’s morality. Why did the ‘wonderful’ Wizard command Dorothy to kill the ‘wicked’ witch? Why did Glinda the ‘good’ witch wait until Dorothy had nearly been killed, to tell her that the ruby slippers would lead her home to Kansas? Gregory Maguire then knew that the time had come to pen a book that explored the darker corners of Oz. To find out if that infamous black-clad, (witch?) on the broomstick was actually… misunderstood.
So Gregory Maguire began his fascination with the ‘wicked witch,’ whom he called Elphaba. A name made to honour the writer L. Frank Baum (LFB). Posing the question, ‘are people born wicked? Or do they have wickedness thrust upon them?’ This is a fascination that Gregory Maguire and I both share.
Gregory Maguire’s book Wicked, caught the attention of Stephen Schwarz (composer and lyricist) Marc Platt (producer) and Winnie Holzman (book writer.) The book was originally going to be made into a film. Universal had the rights to it, and they had already started on the screenplay. After hard work, the three creators realised that the story of Elphaba was meant to be a stage musical for three main reasons. First, we all think of Oz as a musical place. Second, music lends itself to the heightened nature of a ‘fantasy,’ world. Third, Wicked is about behaviour, appearance, deception, honesty, courage, friendship. It explores societal beliefs regarding ‘goodness,’ and ‘badness’ and challenges them. It explores how it feels to be born different. It is a show about inner beauty and goodness, and, in a musical, a character can literally turn to an audience and sing about what he or she is feeling on the inside.
But Wicked is not a fantasy story about two witches and a wizard. It is about a girl (Elphaba) who, because of her differences, finds it hard to be accepted by society. She is quickly cast aside and misunderstood despite her courageous goodness. Despite her devotion to caring for her physically disabled sister (Nessa-Rose), and her longing to save the animals and give them a voice. It is about another girl, (Galinda) who is seen as ‘good’ by society, because of her outward beauty, white privilege, and popularity. Despite the fact that her (very public) efforts to be seen as good, are manipulative, deceptive, shallow and benefit herself. It is about a person of authority (Wizard) who is known as all powerful, wonderful, and magical but, is actually corrupt and not wonderful at all. It is about the love triangle between Elphaba, Glinda and Fiyero, and, how Fiyero and Glinda both mature throughout the show – at different rates – changed, and influenced by Elphaba’s genuine, inner goodness.
Wicked is a show that appeals to people with social differences and hardships, as Elphaba’s ‘greenness’ is a visual representation of the struggles we can face. Perhaps the Wizard, who has a relatively small part to play in the show, has the most prominent line to speak:
“The truth is not a thing of fact or reason; the truth is just what everyone agrees on.”
The story of Wicked begins in the land of Oz. The Ozians are celebrating the death of Elphaba, the ‘Wicked Witch’ of the West. Who [supposedly] died, “as the direct result of a bucket of water, thrown by a female child.”
Galinda the ‘good’ witch floats in (in her bubble dress) to reveal Elphaba’s past… Elphaba’s mother had an affair with a travelling salesman while Elphaba’s father was away. The travelling salesman gave her a “drink of greenelixir,” (essentially to get her into bed.) Consequently, she gives birth to a baby girl with green skin, whom her father resents. Elphaba’s father showers his affection on Elphaba’s younger sister, Nessa-Rose, who uses a wheelchair. (Song: No One Mourns the Wicked) and does not care for Elphaba.
The moment Elphaba appears on stage, she not only represents people of social difference (i.e., neurodiversity, language, region, caste, colour, race, sexual orientation, and sex), she also emerges as the only character who is innately empathic towards others ‘born differently.’ She is empathic to those deemed inferior by the society created by the Wizard, i.e., the animals, the munchkins, her disabled sister Nessa-Rose.
Years earlier, Elphaba and her sister Nessa-Rose arrive at Shiz University. (Song: Dear Old Shiz.) Their father gives Nessa-Rose a pair of jewelled shoes. The headmistress of Shiz (Madame Morrible) takes Nessa under her own wing, assigning Elphaba and Galinda to be roommates. Elphaba: “but, I’ve always looked after my sister.” Anxious, Elphaba uses “magic” to pull Nessa’s wheelchair back, after Madame Morrible attempts to wheel Nessa away from her. The presence of “magic,” visually shows Elphaba’s strong emotion (similar to how Matilda, in Matilda the Musical, experiences telekinesis, which seems to peak when something angers her.) Elphaba: “something just comes over me sometimes, something I can’t describe.” However, ‘magic’ merely gives the producers scope for creative license – to showcase tricks of the stage – leaving the audience to wonder “how did they make that happen?” Madame Morrible is stunned by Elphaba’s ‘special talent’ and decides (with an ulterior motive, which becomes clear later) to give her private sorcery lessons. Madame Morrible tells Elphaba that her talent might one day allow her to work with the Wonderful Wizard of Oz, something Elphaba has dreamed of her whole life. (Song: The Wizard and I.)
Madame Morrible: I’ll write at once to the Wizard, tell him of you, in advance. With a talent like yours, dear, there is, a definish chance. If you work as you should, you’ll be making good.
The Wizard and I is Elphaba’s first song, and the lyrics are prominent. When she sings – “…have I actually understood? This weird quirk I’ve tried to suppress, or hide, is a talent that could help me meet the Wizard?” – she seems to be speaking for people of difference, reframing their differences as strengths and gifts rather than curses.
Elphaba and Galinda have been assigned to be room mates and they immediately sing about their “loathing” of one another. (Song: What Is This Feeling?) They also clash in classes like History. Doctor Dillamond is the professor of History. He is (a goat) the only animal professor at the University of Shiz, “the token goat.” He suffers from discrimination because he is the only animal professor, and he confides in Elphaba, (the only student who genuinely cares about his problem,) about a conspiracy in Oz to stop the animals from being able to speak. Someone has graffitied the blackboard with “Animals should be seen and not heard.” Immediately, Elphaba wants to help Doctor Dillamond. She wants to let the Wizard of Oz know about the threat to the animals’ voices and get help. (Song: Something Bad [is happening in Oz])
Doctor Dillamond: “I’ve heard of an Ox, a professor from Quox
No longer permitted to teach, who has lost all powers of speech…”
Fiyero, a rich and handsome boy, arrives at the University of Shiz and introduces his fellow students to his philosophy of dancing through life. (Song: Dancing through Life.)
This is a pivotal song lasting 7 minutes and 37 seconds, in which Galinda’s deceptive ‘goodness,’ is truly revealed. During the song, Fiyero shares his philosophy “life’s more painless, for the brainless.” He throws a party at the Ozdust Ballroom that evening. A munchkin called Boq asks Galinda to go to the Ozdust party with him, but Galinda manipulates Boq (who she always misnames ‘Biq,’) to take Nessa-Rose instead. (“I know someone would be my hero, if that someone were, to go invite her.”) This is because she wants to go with the handsome Fiyero. So Boq invites Nessa to the Ozdust party to impress Galinda. Nessa is delighted; shewrongly believes Galinda encouraged Boq to invite her to the party out of the goodness of her heart.
Meanwhile,Galinda gives Elphaba a “hideodious” hat her grandmother had given her; it looks like a witches hat. “It’s really…er… sharp, don’t you think? You know black, is this year’s pink.” Elphaba wrongly believes Galinda is being kind and generous by gifting her the hat “out of the goodness of her heart,” so Elphaba requests that Madame Morrible includes Galinda in the private sorcery lessons, to show her gratitude.For the first time, we see Galinda experiencing a genuine crisis of conscience for her deceptive ‘good behaviour.’
When Elphaba arrives at the party wearing the pointed black hat, everyone laughs, and Galinda seems regretful. We are left to wonder, who is worse? Galinda who pretends to be good and help others, or Fiyero, who is open about his shallow values? By the end of the song, friendship is blooming between Galinda and Elphaba through choreography. And, because of Galinda’s social influence, the others at the party begin to show acceptance by standing close to Elphaba, rather than being repelled by her appearance as they were in the beginning. But is Galinda’s kindness real, or does she just see Elphaba as a ”project?”
Later, in their shared room, Galinda and Elphaba continue to bond by sharing secrets, and Galinda decides to give Elphaba a personality make-over. (Song: Popular.)
Galinda: Elphie, now that we’re friends, I’ve decided to make you my new project.
Elphaba: Oh, you really don’t have to do that.
Galinda: I know. That’s what makes me so nice.
The next day, History professor Doctor Dillamond tells the class that he has been dismissed and replaced. (“This is my last day here at Shiz. Animals are no longer permitted to teach.”) Elphaba is desperate to put this right, but nobody will stand up with her. The students are shown a caged lion cub, in a cage that will control all the animals. Elphaba is furiously sad. In the chaos, Elphaba and Fiyero steal the lion cub because they want to free him. They share a private moment in which it is revealed that Fiyero is unhappy being shallow and self-absorbed. There seems to be a kind heart beneath his facade. Alone, Elphaba laments, confused. Could a girl like her be with a boy like Fiyero? (Song: I’m Not That Girl.)
Madame Morrible tells Elphaba that the Wizard will see her. Elphaba believes that Madame Morrible has her best interests at heart. Nessa-Rose, Fiyero and Galinda see Elphaba off at the train station. Galinda tries to impress Fiyero – who is paying Elphaba lots of attention – by changing her name to ‘Glinda,’ in honour of Doctor Dillamond who used to mispronounce her name. But Fiyero just says goodbye to Glinda, unimpressed. Elphaba invites Glinda for a day of sight-seeing in the Emerald City, where the Wizard lives. (Song: One Short Day in the Emerald City.)
Elphaba (at the Emerald City): “Nobody’s staring, nobody’s pointing. For the first time I am somewhere where I belong.”
Galinda: You are positively emerald.
Elphaba and Glinda meet the Wizard of Oz, who is not as they imagined. (Song: A Sentimental Man.) The Wizard promises Elphaba that he will grant her requests to save the animals, (and de-greenify her) if she “proves herself.” Madame Morrible appears, unexpectedly; she has become the Wizard’s new ‘press secretary.’ Madame Morrible presents Elphaba with a book of spells called the Grimmerie which only the magically gifted can read. This is because it is written in the “lost language of spells,”which neither the Wizard, nor Madame Morrible, can read. Elphaba is tricked into trying a levitation spell on the Wizard’s monkey servant, Chistery, but it makes Chistery sprout wings. Elphaba discovers that the Wizard is behind the suppression of the animals, and that he is a fraud. The Wizard wants the monkeys, who are now flying monkeys, to “fly around Oz and report any “subversive animal activity.” Elphaba says “so it’s you? You’re behind it all?And the Wizard replies “when I first got here there was discord and discontent. And everyone knows the way to bring folks together is to give them a really good enemy.” Elphaba flees the Wizard’s chamber, (Wizard: “we’ve got to get her back, she knows too much”) so, Madame Morrible, who has deceived Elphaba, tells all of Oz that Elphaba is a “wicked witch!”
“Citizens of Oz, there is an enemy who must be found and captured. Believe nothing she says, she is evil, responsible for the mutilation of these poor, innocent monkeys…”
Elphaba vows revenge on the Wizard. Courageously Elphaba vows to fight against the Wizard, and the whole of Oz, to save the animals. She invites Glinda to help her save the animals, but Glinda chooses to stay behind and conform. She hasn’t the courage to rise above the ‘toxic authority’ and do what is good and right. Elphaba enchants a broom using the levitation spell and flies from Emerald City. (Song: Defying Gravity.)
Elphaba is now known as the terrifying Wicked Witch of the West.(“Where will she strike next?”) The Wizard has given Glinda the title “Glinda the Good,” and made her the nation’s defender against Elphaba. Fiyero, who knows that Elphaba is good, has searched everywhere for Elphaba, but he cannot find her, so reluctantly he agrees to marry Glinda. There is a press conference to celebrate the engagement of Fiyero and Glinda. Fiyero’s appointment of ‘captain of the guards’ is hijacked by the crowd’s panicked rumours about Elphaba. One says that “water can melt her!” (“I hear she has an extra eye, that always remains awake! I hear that she can shed her skin as easily as a snake!”) Both Glinda and Fiyero know that these rumours – spread by the Wizard and Madame Morrible about Elphaba – are untrue. Fiyero struggles to hear people speak badly of Elphaba. Glinda maintains a cheerful front. It is clear that Glinda’s quest is for ‘happiness’ rather than ‘goodness,’ but she regrets her actions. She is realising that having her dreams come true (i.e., working with the Wizard and being popular) comes “at a cost,” and it is creating a moral conflict inside her, for she knows that Elphaba is good. (Song: Thank Goodness.)
Elphaba visits her sister, Nessa-Rose, who is now the governor of Munchkin land following the death of their father. Nessa -Rose says that their father “died of shame,”of Elphaba: “embarrassed to death.” Nessa has taken away the Munchkins’ rights so that Boq cannot leave her. Elphaba tries to convince her sister Nessa to join her against the Wizard, and help her save the animals, but Nessa is consumed by her own problems. She cries “you fly all over Oz, saving animals you haven’t even met, and never once have you thought to save me.” Elphaba tries to help by giving Nessa the power to walk, by turning Nessa’s jewelled shoes into ruby slippers. Nessa thinks Boq would love her properly if she could walk, but Boq sees this as proof that she no longer needs him and he wants to tell Glinda that he is still in love with her. (“I’ve got to go appeal to her; express the way I feel to her.”) Enraged,Nessa-Rose takes the Grimmerie (spell book) to cast a spell to make Boq fall in love with her. But she pronounces the words wrong and accidentally shrinks Boq’s heart. (Song: The Wicked Witch of the East.) Elphaba works on a spell to try and save Boq’s life. The only way she can save his life is to transform him into the Tin Woodman. Horrified, Nessa-Rose blames Elphaba, and that would be the last time the sisters ever see one another.
Elphaba returns to the Wizard’s palace to free the monkey servants and she encounters the Wizard. The Wizard admits that he is an ordinary man (“I am a sentimental man, who always longed to be a father,”) and offers to redeem Elphaba’s reputation. (Song: Wonderful.)
Elphaba almost feels sorry for the Wizard, almost empathising with how he came to claim the label “wonderful.” She is eager for the Wizard to work with her, to restore her reputation. But when she learns that Doctor Dillamond has completely lost his powers of speech, she angrily accuses the Wizard. The Wizard calls the guards to arrest Elphaba. Fiyero, (as one of the guards) helps Elphaba escape, and he leaves with Elphaba. Heartbroken and betrayed by them leaving together, (Song: I’m Not That Girl Reprise) Glinda turns against Elphaba and suggests that the Wizard and Madame Morrible use Nessa-Rose as bait to catch Elphaba. Glinda: “Make her think her sister is in trouble.” Madame Morrible agrees and conjures up a “change in the weather” …a terrible cyclone to kill Nessa-Rose.
In the woods, Elphaba and Fiyero express their love for each other (Song: As Long as You’re Mine) Fiyero to Elphaba: “maybe I’m brainless, maybe I’m wise; but, you’ve got me seeing, through different eyes.”
Elphaba has a vision of Nessa-Rose in danger.Fiyero says she can stay at Kiamo Ko, his family’s castle. In Munchkin Land, Elphaba is devastated to find Nessa-Rose crushed by a house carrying Dorothy Gale and her dog, Toto, who Glinda has sent on the yellow brick road with Nessa’s ruby slippers. The Wizard’s guards arrive.
Elphaba: “I can’t believe you’d sink this low, to use my sister’s death as a trap to capture me?”
Fiyero holds Glinda hostage so Elphaba can flee. Glinda pleads with the guards not to harm Fiyero, but the guards escort Fiyero to a nearby cornfield. At Kiamo Ko, Elphaba casts a spell to save Fiyero from the guards but is crestfallen by the limitations of her ‘power.’ (Song: No Good Deed (Goes Unpunished)) During the song, Elphaba’s mindset is changed by her love for Fiyero. So much so that she accepts her reputation as a ‘wicked witch.’ As long as Fiyero lives, she is willing to accept the ‘wicked’ label society has put upon her.
“Let his flesh not be torn, let his blood leave no stain, though they beat him, let him feel no pain.”
In the capital of Oz, Glinda realises that Madame Morrible’s weather spell is responsible for Nessa’s death. The citizens of Oz declare war on Elphaba and set out to Kiamo Ko, where Elphaba holds Dorothy captive, demanding that Dorothy gives her Nessa’s slippers. Elphaba: “Who takes a dead woman’s shoes? You must’ve been raised in a barn.” Glinda arrives at Kiamo Ko to warn Elphaba of the danger and begs her to free Dorothy. Elphaba refuses until she receives a letter from Glinda concerning Fiyero. The two women forgive each other and Elphaba gives the Grimmerie to Glinda. Glinda: “But you know I can’t read it.” Elphaba: You have to try.(Song: For Good) During this song, Glinda declares that, because she’s known Elphaba, she (like Fiyero) has been changed for good.
As the mob of guards arrives, Glinda hides, and Dorothy throws a bucket of water over Elphaba, melting her. The only remains of Elphaba are her pointy hat, and the bottle of Green Elixir that her mother drank. Elphaba has always kept the bottle, as a keepsake of her mother.
In the Emerald City, Glinda confronts the Wizard with Elphaba’s Green Elixir bottle, which he recognises as his own. They realise that he was Elphaba’s biological father and the reason her skin was green. Glinda, finally finding the courage to do good, banishes the Wizard from Oz and sends Madame Morrible to prison. Meanwhile, Fiyero, transformed into a scarecrow by Elphaba’s spell, comes to the spot where Elphaba melted. He knocks on the floor, and Elphaba steps out from a trap door. She regrets that she will never see Glinda again but knows that there is no choice.
Back in the present, Glinda finishes the story of Elphaba’s life, and promises the people of Oz that she will earn her title as Glinda the Good. “If you’ll let me, I’d like to try to help. I’d like to try to be, Glinda the Good.” The Ozians celebrate Elphaba’s perceived death by singing “no one mourns the wicked” as Glinda secretly mourns Elphaba.
Elphaba and Fiyero leave Oz. (Song: Finale)
Elphaba: We can never come back to Oz, can we.
Elphaba: I only wish that Glinda could know?
Fiyero: She can’t know, not if we want to be safe. No one can ever know.
Synesthesia is an ordinary experience for me that causes no harm. So until now, I haven’t paid it much attention. I can’t imagine things being different. I can’t imagine what it is like to listen to a sound and not see it’s colour, and feel it.
I was inspired to write this blog by a 6 year old girl ❤️ I hope it’s helpful to her and her mummy, and I hope it makes sense…
Every person with sensory processing differences have different experiences. We seek and avoid different senses because we have lower (than normal) registration in some senses, and, higher (than normal) registration in others.
Additionally, we have the experience that our brains are not just ‘turned up,’ or ‘turned down,’ but “wired differently.” For example, my brain’s ‘wires’ connect to parts of my brain that give me different experiences to most people. Noise connects to pain, light connects to heat, etc. My internal body senses don’t appear to connect to my brain at all.
Recently, I was told that, (if we imagine the traditional five senses) most people tend to experience them as separate entities. Noise makes sound, but, doesn’t have a taste or a pain. Colour is something that can be seen, but, not heard. This clean segregation of the world is what gives most people their sense of reality. To them, this reality feels fixed and permanent, and, they have the impression that anybody standing in their shoes will experience the world in exactly the same way.
But our perception of the world is filtered through the individuality of our brain. And, because some brains, (for instance autistic brains) differ in subtle ways, some people experience the world as a different place.
Synesthesia is ‘pairing, or co-occurring of the senses.’ Apparently, there are over 128 types of Synethesia, effecting 4.4% of the population. Many of these people are autistic, (and there’s science about why, but it won’t all fit in this blog!) I mainly have phoneme-colour, and sound-colour Synethesia. I’ve been this way forever, but, it was only ‘named’ for the first time in 2018, (about a year after my autism diagnosis) when a professional was trying to access how I communicate feelings. (This will be better explained later.) It was picked up again by another professional, in 2021.
Many people *associate different colours/feelings with things. My mum associates the colour blue with sadness, “feeling blue.” My friend associates January with the colour red, because of the birthstone Garnet. He associates the number 8 with ‘green,’ because the fridge magnet is green. The word ‘steak,’ makes his mouth water, and, when he hears the name of his grandmother, he feels sad because she died. These types of deliberate associations are not synesthesia, but part of the human ability to pair senses in preferred ways.
I’m going to try and explain my experience of Synesthesia. People that know me well, know that I have a very intricate love for words. My A levels were in English Language, English Literature, Spanish and French. My degree was English and Creative Writing. My hobby is music/theatre, and, I am particularly passionate about names of people and song lyrics. Words give me joy, and, my emotional relationship with words is stronger than my emotional relationship with people. When I hear a word, I see it in (a very specific shade of) colour, involuntarily; a sentence becomes a picture. Hearing a song is when my Synethesia is most mobile, vivid and layered.
When I was in hospital, I had very reduced verbal communication, but, I did a lot of painting. I painted pictures and the staff would say, “that’s nice, what is it?” I would say “it’s a song!” And then their faces would do peculiar things. Like they’d move their head to the side, their eyebrows rise a bit, their eyes looked like they were struggling with a problem, but, they were smiling about it. I was never happy with my paintings because, whilst I could paint the shapes of the sounds accurately, I could rarely mix the specific colour I was experiencing in my mind.
Many ‘synesthetes’ experience a colour for every letter sound. But, I only seem to experience colour when I hear vowel sounds in a word. Particularly, long vowel sounds. For example, all the words that contain the sound ‘a’ (including ay, a-e, ai, ey, eigh) are always yellows. (Side note: the sound of a cello is also yellow, and shares all the characteristics of honey.) All the words that contain the long sound ‘e’ or ‘i’ are blueish shades, (including ee, e-e, y, ea, ei, ie, y, igh, i-e). All the words that contain the long vowel sound ‘o’ (including o-e, oe, oa, ow,) are greens. And all the words that contain the long vowel sound ‘u’ (including u-e, ue, ew, oo) are purples.
Words with short vowel sounds like a-ant, e-egg, i-ill, o-olive, u-up, have always been reddish-pink colours. I’ve learned these feel ‘uneasy,’ but I have lots of empathy for these words. The emotion words ‘happy,’ ‘sad,’ ‘angry,’ ‘anxious,’ and ‘bad,’ all have the hard ‘a’ sound, but, mean contrasting things. (Both ‘angry’ and ‘happy,’ have blue edges.) They are also all words I do not like to say out loud.
When I hear the Louis Armstrong lyric, ‘I see trees are green,’ I see moving, bluish shapes on a blue background, and the image is gentle. When I experience this blueness, my mood is directly effected, i.e, blue is carefree and good.
This links to my autism assessment, in which I was diagnosed as alexithymic, “no words for feelings.” At the time, I accepted this as accurate, as, I have always struggled to identify and label feelings inside myself, and, on other people’s faces. However, in therapy, (and through the development of my sassy lioness,) I’ve learned that I DO have words for feelings. They’re just not the words most people expect. One reason I mask feelings is that, I am self-aware enough to observe that other people have another language for feelings, that I don’t innately have.
For example, if someone says, “how are you?” They might be expecting, “fine thank you,” or “I’m sad,” or “I feel happy.” My instinctual response would be, “Louis Armstrong, 1967, I see trees are green, blue,” and, I could then draw the image that those sounds and colours give to me.
The first person to realise my expression of feelings was my therapist. She encouraged my synesthetic experiences, and, used them to connect me with really complicated vocabulary like, ‘I feel shame,’ ‘anxiety,’ ‘guilt,’ etc.
It is very hard to ‘bend my mind’ around the fact that not everyone experiences this visual pairing of sound, colour and emotion. Which means it must be hard for others to ‘bend their mind’ around the fact that I do. It’s also hard for me to imagine other peoples’ synesthesia. For example, some people can taste words in their mouth, or, see colours when they taste certain foods, but this does not happen to me.
As my therapist (who, is not a neuroscientist) said, hearing the word “maybe,” and experiencing a lemon-yellow ‘pond’ (with blue diamond-shapes that focus, fly and fade), is as real to me as someone hearing an emotional song and getting goosebumps on their skin. Or hearing the word ‘hospital’ and having ‘butterflies.’ (The word “maybe” is also female, yes, she has a gender.)
How does this help me? I think that this helps me to remember long lists, sequences, scripts and lyrics, because, they create pictures in my mind that never change, i.e., the colours and the movement in the word ‘family,’ are exactly the same as when I heard this word as a child.
When I first learned that this wasn’t how people usually experience sounds, it gave me a variety of worries.
When I have completed choreography projects for dancers, I have never felt I deserved the recognition. People say “how did you create that piece of dance,” and, my instinct is to say “the music just tells me.” The intricate sounds in the music give me the colours and shapes, and, I just have to figure out how to recreate that with the human body.
So, I recently agreed to be part of someone’s university research on synesthesia. I have no idea what they’re going to get me to do, but, hopefully it will be tested and explored, and I will actually get some science about why.
There’s so much more to write, maybe another time. I hope this makes sense.
Non-vocal Sounds and Synesthesia
People That Claim Synesthesia (and Synethesia testing)
Other Types of Synesthesia (this one is going to take some SERIOUS research.
Thoughts are not facts. Intrusive thoughts are like bad habits that need to be given up. Like smoking, once you give up the habit, your lungs becomes healthier and you can breathe. Once you start challenging negative thoughts, your brain becomes healthier and you can breathe.
Is this easy? Nooooo
I was going to call this blog ‘Making Sense of Intrusive Thoughts.’ The thing is, intrusive thoughts do not make sense, because they are intruders, and they are not real. They are like burglars coming into your house: they are not welcome; they do not belong there. I’m learning to change my thinking, because my thoughts hurt me and make me ill. Do I want to be hurt and ill? Nope.
My nurse told me that my thoughts (about myself and others) are not facts. It’s taken me a very long time to understand the difference between a thought and a fact, (so, she still has to remind me a lot!) but, I am changing, and I can feel myself changing, and I have chosen to change.
There is this pattern I go through multiple times a day. The pattern is: thought, emotion, more thoughts, behaviour, repeat. My thought creates an emotion, which leads to worst thoughts, and, a subsequent action/ behaviour, but I am choosing to break this cycle.
Intrusive thoughts come in different shapes and sizes, and, like buses, they can take you to places you don’t want to go. My therapist taught me to say, “do I want to get on that bus?” Nope! “Do I want to go to that place?” Nope! At first I was like, buses? Huh? So she showed me a video and she said, “if you’re at a bus stop and a bus comes along going to Southampton, and you want to go to Winchester, are you going to get on that bus?” Nope!
During lockdown I was bullied by recurring thoughts, I fell down many thought spirals. Three of them were:
My friends don’t like me – my friends are plotting against me – my friends are going to report me to the police – I am going to be arrested – I need to hand myself in.
I am bad – my badness is contagious – I am the coronavirus – I have killed thousands of people – I have to punish myself.
I am a terrible teacher – I have a negative impact on the children I teach – I must quit my job before I get sacked – I am a failure – I need to punish myself.
If you tell yourself something often enough, you believe it, even if there is no factual evidence for it. The emphasis is on the fact that YOU are telling YOURSELF and this is a massive waste of your time. Like, finding a burglar in your house and saying, “hey, why don’t you move in?” Is that wise? Nope!
Next come the emotions – are these thoughts hurting my feelings? Yes, literally hurting me, impacting my daily function. These thoughts are bullies that lie. They want to trap you in their cages so you live a life restricted. The physical effects on the body are intense because the thoughts have infiltrated your “wise” mind, making you emotional and reactive. They make you think, “I cannot cope with the feelings this thought is giving me, I just want it to end.”
More thoughts pile in. “How can I escape these feelings?” Having autism means it’s tricky to identify the emotion, know why it’s there, and treat it compassionately, but, with time it’s possible to learn, and use safe emotion coping skills before you act on it.
Behaviour – “what can I physically do to stop feeling this way.” A struggling mind may not come to a safe, self-caring solution. Even though you know that if someone else were being bullied, you would treat them with care and sensitivity. Instead, it might lead you down punishing pathways. Withdrawal, impulsive decisions, self-harm, and then, into a whole separate spiral of guilt, shame, regret, repeat.
All this pain and suffering and bad decisions for a thought that isn’t even a fact? Rather than stress over kicking the intruder out, maybe don’t let him in in the first place.
Reassurance – is something kind people do, to help you ease a thought in the moment. But this doesn’t help long-term. Thoughts are recurring, persistent, and, they creep back; and, what if that kind, reassuring person isn’t there when the thought creeps back in?
Challenging intrusive thoughts comes from within: it is a skill that takes time, lots of practise and, in some cases, therapy. Therapy is a life-changing, life-saving process. In therapy, I named my ‘thought bullies.’ I drew them, personified them, to separate them from myself. (Cozbi and Eugenia.) I now see them as unkind “intruders,” that I do not need/want in my house/life. I don’t swear much, but, when they show up in my head with bad thoughts, I literally STOP, and tell them to f* off, out loud!
Now, I have alternative voices in my head, that challenge the bad, unhelpful ones. They switch the narrative. I have a fierce lioness that does not tolerate bullies, and, I have a wise policewoman (aka my nurse) that looks for ‘evidence’ to back up the bad thoughts… but, she can never find any cold hard evidence for intrusive thoughts.
Maybe you’re thinking, “but the lioness and the policewoman aren’t real either!” Well, that’s right. But focussing on positive things is far more productive than focussing on negatives? If you hate peas but you like broccoli, you’ll probably choose the broccoli?
Cozbi: no-one likes you
Lioness: some people may not like you and what? That’s a normal thing. Not everyone likes the Queen.
Eugenia: you’re bad at your job (ps. you’re overweight)
Policewoman: evidence shows there were moments of success today! Let’s list them! (Ps: your BMI is normal for your height and weight, so, take that piece of info and eat it whole!)
Cozbi: you’re an attention seeker
Lioness: is this true? No! Is this a fact? No! Is this intended? No! Is it ok for people to think this? Sure! It’s a SEP! Someone Else’s Problem!
Eugenia: the TV is spying on you
Policewoman: really? Well, it’s wasting it’s time because you’re sitting here doing nothing remotely interesting.
Am I a hypocrite? A bit, yes. Can I always respond to irrationality with logic? Nope! I have bipolar and I am well at the moment, so these things are easier said than done. But it is important to practise these skills, to strengthen the mindset-muscle, for when the mind does deep-dive into the dark planet.
This blog is ‘Part 2’ of my experience of going into hospital for a bipolar (etc, etc) relapse during lockdown. ‘Part 1’ was about my arrival at the hospital, and, the fear. This blog is about growth, hope and confidence. It’s taken a long time for me to get the confidence to share another blog, because, well, will people think bad things about me?
But, I’ve been listening to lots of Matt Haig interviews on YouTube lately. (Matt Haig has written many books about his mental health, and, has the confidence to share a lot on Twitter.) In one interview, Matt Haig was asked why he talks about mental health so much? His response was, that he spent so many years not talking about it: he wouldn’t, and, he couldn’t. This is the same as me.
For Matt Haig, like for me, writing is not just therapeutic and releasing – it has also connected him with a community of others who can relate to him. His writing has helped people understand themselves, and their loved ones, and, he has turned his biggest difficulties into silver linings of hope for others.
Whenever I share writing, I always ask myself two questions. These questions are, ‘is this helpful?’ And, ‘is this hopeful?’ For this reason, there’s heaps of details I need to leave out of this blog – as, I’m sure you will understand. This is for my own privacy and dignity, and the privacy and dignity of other patients.
The hospital was noisy: filled with very poorly people doing very poorly things; behaving in very poorly (sometimes scary) ways. But, quickly, I learned that every single one of them were beautiful people, with beautiful souls. That’s the thing about a lot of people with mental health problems – often, they are stuffed full of empathy, and, quick to want to help.
The most significant thing that happened to me in hospital, was, meeting my occupational therapist (OT). I can’t remember my first time meeting her because my first few days at the hospital are blurry. But, it was like my OT had a brain full of golden threads, that she would pull out and give to me. (She gave me my ‘lioness’ – I’ll explain this next time.)
Soon, my OT had me leaving my room, which was mega. She helped me be able to use the shower (I was paranoid to shower at my flat, because, I thought I’d be arrested in the shower… I know, mental), and, the toilets; go to the drugs hatch morning, noon and night for my medication, and, even attend some activities, like art: (I made a huge picture of a parrot by finger painting) and baking, (one day I made red velvet cakes.)
To feel clean and showered was so, transforming.
Somehow, my OT knew so much about autism and sensory therapy. She knew to break everything down into manageable tasks, so, I was left with confidence, and not distress. (Apart from the canteen, ain’t no-one was getting me in there!)
Every time I would accomplish something, however small, my OT would look at me and say, “happiness?” And I would say, “yes!” She made me a little card that said, “I need help,” because she knew I couldn’t approach nurses and ask.
Because of my OT, I started to be able to mix with the other patients in the communal lounge. This was scary at first, because, at this time, all of the patients were older than me accept one, so, I wasn’t sure if I would be accepted. Also, I’d been isolated by lockdown for so long, my, (already awkward) social skills had gotten very rusty. Quickly, I learned that I did not have to worry about acceptance at this hospital.
I was accepted when I could talk, and, when I couldn’t: when I was calm, and when I was distressed; when I was ill and when I was well. Being in hospital meant that my mental health was being seen, in real time, by people for the first time. People saw me at my worst, which, is something I hide from the community because, what follows is such an ugly shade of shame. But, the nurses would say things like: “that wasn’t you, that was your illness.” They didn’t judge my “bad” behaviour; rather, they were compassionate.
I began to be able to separate myself from my (deeply engrained, perceived) “badness,” which, was a revelation. And, I had a lot of special chats with the chaplains at the hospital about ‘goodness’ and ‘badness.’
In the communal lounge, I did a lot of colourings, and, I made friends (with an autistic patient, who had the same name as my cat,) who taught me how to make Loom band bracelets. (I sat and made hundreds of Loom band bracelets.) But, when I wasn’t sociable, my 15 minute Obs nurse would likely find me in the sensory room, where there were enormous beanbags I could lie on, under my weighted blanket.
I also started to try and start conversations with patients by saying: “do you want to see some pictures of my cat?” And, “do you want to watch a film with me?” (The TV is behind a locked, protected case and, the TV remotes were kept by the nurses because we needed supervision with the batteries.) I made friends with this amazing person, ❤️, who, I still see. And we used to take our blankets into the lounge and watch Bridget Jones’ Diary.
The police used to bring new patients to the ward, (I was totally scared of the police coming.) But, I approached this patient and asked if she wanted to watch a film. She told me to “f**k off,” (and, she was whispering to some sort of hateful demon in her head.) So I said, “do you want to play cards?” She said “sure!” I really liked her: she was exceptionally dirty when she was bought in, and extremely tall, and, she had two nurses on 24 hour Obs with her. I cared about her heartbeat, all buried underneath all of this. My mind was saying “who is loving this person?” All people know that, those who seem hardest to love, need the most love, don’t they.
(I’m starting to think this blog is going to need a ‘Part 3.’)
I’ll just finish this blog by talking about my mum and dad. Mum and dad visited me quite regularly when I was in hospital, but, they were never allowed inside the building because of the Corona virus. Instead, I would go into the ‘family room,’ and, they would stand outside in the cold and talk to me through the window. It was quite emotional. The window was covered in a sort of metal sheet with little holes in it, so, I could see and hear them, but, I couldn’t get out.
My mum and dad would tell me how Saffie was doing. They bought me my weighted blanket, some slippers, and, a ‘Frozen’ themed game of Top Trumps, that I played with the nurses. The nurses had to go outside to collect things from mum and dad, because, I wasn’t allowed. It must have been pretty hard for mum and dad, but, I tried to always be reassuring.
Once, after my mum and dad had left, I returned to the communal lounge with my nurse to do some colourings. (This next part is funny,)… briefly, my nurse had to leave the room, so (naturally) I spied on her notes. I found my name and the time, and her note about me said: “appears to be asleep!” This made me laugh so much, as, (I know I was unwell, but) I was pretty sure that I was awake and not asleep!
Ah well, that’s enough writing for now. Hope everyone is enjoying their Easter weekend ❤️
Never do I think, “I’m going to write a blog today.” These blogs seem to write themselves, whenever they feel like being written. I don’t chase words, the words come to me, and, when I read them back I think, “gosh, I’m not really sure where that came from!” It’s a process that happens naturally, and therapeutically.
I’m going to write a couple of blogs about going to the psych ward.
It’s been a year since I was admitted onto the psychiatric ward for the first time, so I’ve been thinking a lot about that lately. I was admitted on Valentine’s Day, which is a pretty memorable date. It’s not necessary or helpful to others to describe the reasons why I was admitted: my mind was on another planet, and I was ill. I’d been having daily ‘shared care’ visits from the nurses, and nightly visits from the Acute team for, (I don’t know how long,) until, one afternoon, a nurse came and said it was time for me to be admitted. (I think you get admitted as a last resort, for your safety and the safety of others, but, they generally try to keep you in the community if possible.)
The nurse, Stuart, gave me an hour to pack some pyjamas, etc. and to call my parents to have Saffie, my cat, collected. Then, a different nurse, Emma, came to take me to the hospital. On the way to the ward, I was terrified: I didn’t know where we were going, or, how long I would have to stay. It was also my first time being away from Saffie. Emma told me that I was going to Melbury Lodge, so, I was able to text my parents and let them know.
It was dark and raining when we got to the hospital. Two nurses let Emma and me in the doors, and then the doors were locked behind us. One of the nurses took my bag away to be searched, and the other nurse led Emma and I down some corridors to my room. (I’ll tell you about my room later.)
All I know is that I was terrified. Many autistic people, like myself, find change, unfamiliarity and uncertainty extremely difficult, and, I had no idea what was happening. I sat on the bed, and, there were three nurses in the room. One of the nurses was asking me lots of questions, like, “do you know why you’re here?” And, “do you intend to cause yourself or others harm while you’re here?” But, I was too overwhelmed to speak. It was like I had become mute with fear, and, this lasted a couple of days.
The nurses told me that I was going to be on “fifteen minute observations,” which meant that, every fifteen minutes, a nurse would check on me and write an observation. This would happen throughout the day and the night. The door to my room had blinds in it, that could be opened from the outside. They explained to me that, during the night, the nurses would either shine a torch through the blind, or, they would open the door and come in to check on me. Often, I would wake up to nurses pulling my blankets down, because, I had a habit of sleeping with my blankets covering my face, which, I wasn’t allowed to do.
The nurses told me that I would be allocated a certain nurse everyday, and that I would have 1:1 time with that nurse if I wanted too. They said my allocated nurse’s name would be written on the ‘patient board’ outside the nurses’ office. They then gave me a Covid test, and said I would need to isolate in my room until the test result came back negative. (The nurses all wore masks, but the patients didn’t.) I was given a special key card for my door, (which, I would keep in my sock, so I didn’t lose it) and, another nurse bought my belongings back to me, minus a few confiscated items.
I don’t recall much more about that first night (apart from the scary alarms); I think they’d given me sedating medication, which, I was glad for, because, I was so sad to be sleeping without Saffie for the first time.
When my Covid result finally came back negative, the nurses told me I was free to go anywhere in the female part of the ward, but, I was afraid to do this for ages. I was afraid of the shower, the toilets, the canteen, the drugs hatch and the communal lounge, so, at first, I stayed in bed. (That was before I met my amazing OT, Mareli, who I’ll tell you about in a different blog.)
My room was small and I liked to keep the lights off. All the furniture was attached to the wall and floor, so, it couldn’t be moved. There was a sink with no taps, instead, a button to press to make the water come out. The door less wardrobe had shelves, but, you couldn’t hang clothes up, and, the door to the room had a circular handle that you twist to open or lock. Basically, there were no ligature points in the rooms. There was also a window, which, it was impossible to get out of. But I sometimes used to sit by it and watch the women and babies from the mother and baby unit, walk around the garden with their nurses.
I don’t really know how the alarms worked on the ward, I just know that they would go off all the time. I think the nurses, and all the ward staff, had an alarm attached to themselves, that they could press when a patient was in trouble or if things were kicking-off on the ward. It must have also given the staff the location of the incident, because, when the alarm went off, all the staff on the ward would run to that location. I only set the alarm off three times during my time there, and, one of those times was an accident! Stuart, the acute nurse, had come to visit me in my room, and, he leaned on the top of the door as he spoke to me, which made the alarm go off. That was actually pretty funny.
The next day I think was my first ‘ward round.’ I had to go to a big room, with a big table. The ward doctor would lead it, I think, but there were other people there too, typing notes and asking questions, etc. It was very overwhelming, and I was bad at answering the questions and sharing information. After my first ‘ward round,’ I was excused from going to them anymore. Instead, the meeting would happen without me, and the doctor would visit me 1:1 in my room.
During one of the visits from the doctor, Dr Gemmeker, she told me that she had bought my book and read it in one sitting. (I had written and published a book called Too Much World: How I Survive as an Autistic Girl.) She was so kind about my book, and, I was so shocked because I had never mentioned my book to anyone. I still don’t actually know how she’d come to know about it. I never imagined that precisely one year after my book launch I would find myself in hospital.
In my next blog, I might write about how I started to ‘find my feet’ on the ward. About the things I did there, the things that happened, and the friends I made.
Sharing writing about mental health creates an ALMIGHTY conflict inside me.
I fear it; but, it is also important to me. I’m going to explore this ‘inner conflict’ by writing. Sometimes, I feel the fear, and write it anyway, and I do this for the people who feel the fear and bottle it up. Often I bury the writing in notes and diaries and boxes and bins – never to be seen by anybody.
Why is there so much fear?
Well, first of all, it’s about what other people will think. There is so much fear about what other people will think if you start writing about your mental health: fear of social stigma. Social stigma is about the negative, discriminatory attitudes people can have about mental illness, that, they don’t seem to have about physical illness. You can have ten positive interactions on a blog, but you’re still worried about ‘the others.’ ‘Cozbi’ pops up here, just to tell you that you’re an “attention seeker.” (I’ll come back to the word ‘attention’ later on.) But writing about autism (not a mental health condition) is so much easier than writing about bipolar.
There is also self-stigma, and internalised shame that people feel about their own illness. Shame is a bitch, because, it sidles-up alongside your illness and tells you to hide it. Hiding mental illness makes people more ill than they need to be. The more you hide mental illness, the ‘louder’ it gets, until, suddenly, it bursts out of you: ‘it’ controls you rather than you controlling ‘it.’ It wasn’t until I broke through the ‘shame barrier,’ by writing, that I began to be able to work on managing the actual illness. This was an enormous breakthrough, because, I have been ashamed of my mental health since about the age of 8. It’s also why I encourage other people to write.
As I write, I learn. I start to be able to simplify and solve complex things and I think: this might be relatable to others.
Attention-seeking vs connection-seeking: many people with mental health problems, including me, are terrified of being seen as an “attention seeker,” if they share. This is very sad (also lonely, dangerous.) People lose their lives because they are afraid of seeking attention for their mental illness. “Attention” is seen as a bad word: ignore them, they’re just attention seeking. Reframing this, and calling it “connection seeking,” seems easier for people to empathise with.
I share my writing because I am ‘connection-seeking.’ I seek to connect with other people like me, with friends who have family members like me, with people who might develop a mental health condition in the future (no-one is immune.) The more you ‘connect’ the more ‘normal’ your mental health illness seems to become. By writing, I finally ‘told’ people that I have Autism and Bipolar. Not because I “wanted attention,” or, because I feel defined by these diagnoses, but, because they provide an ‘explanation.’
Having an explanation is important to me and the people around me: suddenly, I was not a ‘bad’ person, (which is what I’ve spent my life believing.) I would rather people know that I have autism and bipolar, than make up their own wrong assumptions about my personality and behaviour changes. Like, ‘odd,’ rude, distracted, awkward, weak, anti-social, unreliable, emotional etc.
Writing about my diagnoses suddenly made me part of a community: I’m not alone or ‘bad,’ I’m part of the autistic community, I’m part of the bipolar community. I’m part of a community of people that also have mental health care nurses and support workers and psychiatrists in their lives. People are starting to tell me about their diagnoses; they’re saying “me too” for the first time. They are telling me to “keep writing” and that my blogs are helping them understand their loved ones better. This brings me joy! This, – since mental health stole my beloved job as a teacher – is my new purpose to hold on to, until I can get my job back. But there is still a real ‘inner conflict’ that I can’t shake.
I spoke to my chaplain, Melissa, about the horrid paranoia I get when I share a mental health blog. She was reassuring. She helped me realise my intention for writing: “I am writing FOR people, who do not have a voice.” When I am writing, it feels like my purpose is to share information that I have learned in order to help others. (I am bereaved by suicide.) It’s part of being a teacher. When I learn a new coping mechanism – or a skill that is healing – it feels important to share it so that my healing is not wasted on just myself.
When I am sharing writing – I am not a mental health patient – I am a teacher again.
Am I an ‘open’ person? No. This might surprise you. Whilst I find it therapeutic to write – and (sometimes) share the writing to help others – there are only about two people in the world that I could ever ‘talk’ to about mental health. I actually find it very difficult to ‘say’ the words ‘autism’ and ‘bipolar’ out loud.
Most of the writing I share, I could never ‘talk’ about face-to-face; moreover, most of the writing I do, doesn’t get shared. This is because my purpose is to help people, so anything (negative, shameful, draining, triggering) gets edited out. I also don’t write about trauma. For everything that is written, there are hundreds of ‘unwritten’ things. I think: is this helpful and necessary, or is this unhelpful and personal.
During an ‘episode’ I am not ‘open,’ I am the opposite; I withdraw from family, from writing, and even the mental health team. (They are often encouraging me to “be more open.”) It’s usually months afterwards that I can process and write about mental health because each blog needs to contain genuine hope.
Autism and honesty: whilst I don’t believe I am as ‘open,’ as I have led people to believe in my writing, I know that I am honest. I think autism makes me share ‘no-nonsense’ details about mental health as facts to break down stigmas. Usually the things I write, don’t have an awful lot of emotions attached to them: this is what happened, this is how it is.
Also, autism gets overwhelmed by the ‘attention’ a blog gets – even the really positive comments can feel overwhelming. It’s not uncommon for me to share a blog on Facebook, and then deactivate my account for a few days.
There is a second ‘inner conflict’ within me, that is: autism vs bipolar. Many people with autism, including myself, develop “special interests” in autism, psychology, mental health, human behaviour etc. Autism wants me to collect information about these things and share it with whoever will read it. Bipolar wants me to hide away in a room and not tell anyone anything.
But hiding away in a room – and not telling anyone anything – is not going to help me truly connect with people. It’s not going to help me help others, and it certainly isn’t going to help me get my job back.
At the weekend I had a depressive episode. It lasted two and a half days and it came unexpectedly. I’m grateful it didn’t last longer because my previous episode lasted seven months.
It was kind of my fault. My routine was ‘off,’ my support worker left to go to a brand new job (I’ll write about this in a separate blog) and, I had forgotten to order my medication for the week. This meant I didn’t sleep. (It’s frightening how missed medication and a few hours less sleep can ‘alter’ the mind of a bipolar person so quickly.)
Anyway, let’s not focus on the details of that episode. I got my medication on Sunday at 4am from an NHS 111 doctor and I woke up on Monday – a totally different person (!) – after a 14 hour sleep! “Oh my gosh – I’m on a different planet – today, I’m back on Earth!” This led me to think that bipolar is like planets.
On planet Earth, I am a ‘“normal” autistic person.’ It’s where my personality is. It’s where my ‘inner lioness’ is. (I’ll tell you about my lioness in another blog.) You still have ‘highs’ and depressing ‘lows’ on Earth – as everyone does – but my nurse has taught me skills to manage those times and I’m getting good at it.
It’s hard living ‘on Earth’ with autism, because, autism is an ‘alternate’ way of being. Planet Earth is not autistic; and, neither are most of the people who live on planet Earth.
My friend Pat (who works on the radio) recently interviewed another autistic author who explained autism perfectly. He explained that, as an autist, it can be extremely difficult to try to act like everyone else: to network socially; to deal with different pressures, senses and anxiety. This is because you don’t have some of the innate abilities most ‘Earthlings’ have – so, you have to use cognitive load to be able to match it. You spend every second of the day analysing, checking and rechecking to see if you’re behaving in the ‘right’ way. Like carrying a huge load on top of just struggling to exist day-to-day, that other people don’t have to carry. But, Earth is still the closest I can get to being ‘well.’
On Earth, with some support, I can recognise my moods and regulate them wisely, now, but – at the weekend – I went to The Dark Planet.
The Dark Planet is an unbearable place to be: it’s where Cozbi lives; it’s where she is most powerful. (You may know about Cozbi from my previous blogs.) On The Dark planet, your brain gets twisted by the atmosphere: your thoughts are warped, abnormal, destructive, and reality is skewed. Suddenly, your friends are scheming enemies: you see, hear and believe things that you don’t see, hear and believe on Earth. There is no evidence for the things you’re believing, but, there’s no logic either. And, the worst part: ‘Cozbi’ steals your hope, so you don’t even have anything to hold on to.
Some people don’t survive The Dark Planet because it is tormenting and dangerous; and, you can’t imagine ever getting back to planet Earth. People, (like the police or the mental health team) sometimes intervene and put you in the hospital for your own safety and the safety of others.
On Earth I can think: ‘what can I do to make this depression better?’ But, on The Dark Planet, all I can think is ‘how can I make this stop?’ When I arrived on The Dark Planet on Friday night, I realised that I had left all my coping skills behind on Earth. They were locked in a box in my brain that was inaccessible. I realised that I can manage depression on Earth, but I still have a way to go, to learn how to manage this mind-bending bipolar depression on The Dark Planet. I know it can be done.
I’d ordered wine (mind-numbing), which I’m not really allowed, and I picked it up with my left hand, my medication in my right. I thought, “this is a test.” Cozbi wants me to drink the wine to make me more vulnerable to impulsive behaviour, but, my nurse would tell me to take the medication early and sleep.
Well, I’m proud to tell you, that, for the very first time, I won a test on The Dark Planet. I heard Cozbi loud in my head, but, I ‘acted opposite’ with all of my lioness strength and took the medication. It’s the first time my lioness has turned up on The Dark Planet, and, I think it shows that I am getting better at making decisions and understanding and managing bipolar!
(Cozbi 0- Claire 1)
My message here is, do not give up.
Ps: there’s another planet in my mind too, other than planet Earth and The Dark Planet. It’s called The Fast Planet – and, I’ll take you there next time.
Autism makes me simplify complicated things. It also makes me simplify easy things: go back a bit; work up to the goal carefully. Everything in the world can be simplified.
This happens in teaching all the time. If a child in your class can’t count to 10 yet, you don’t make them count to 10 over-and-over until they get it. You go back a few steps, and you fill in the gaps until they’ve got enough knowledge, practise (and confidence) to count to 10.
It’s the same with mental health.
I’m going to focus in on one of the symptoms of (bipolar) depression: that is, ‘lacking energy and motivation.’ This seems misunderstood, not given enough understanding. You tell yourself you’re “lazy,” “just get on with it,” but, this symptom is not laziness.
Repeat – this is not ‘laziness’ – that is a bad word. ‘Laziness’ is judgement (from yourself or others.) It is a ‘Cozbi’ thought. Lack of energy and motivation is a debilitating symptom in depression. When depression takes your energy and motivation, you need a lot of willpower to combat it, and willpower is like a muscle.
Mental illnesses that encompass depression, weaken the ‘willpower muscle’ significantly. You become de-skilled at the most basic daily activities and self-care: like getting out of bed; having a shower; drinking water; exercise; going for a walk; texting back; taking medication; preparing food for yourself, etc. You know that these things will make you feel better, but depression doesn’t want you to be better. It wants to exhaust you mentally: mental exhaustion – don’t underestimate it. Instead, depression motivates you to do things that make you feel worse, or that give you a brief ‘sticking plaster’ from the mental pain, like drugs, alcohol, comfort eating etc. All these things come with their own cycle of difficulties.
Because activities (like washing yourself, exercising, eating and drinking, etc.) will make your depression better, people repeatedly tell you to do them. They tell you to do them, without realising quite how de-skilled and demotivated depression has made you. Without realising how weak your ‘willpower muscle’ has become.
You disconnect from people completely when they say “go out for a walk,” or “have a shower.” You think, “they’re not on my level, they don’t understand,” and, you withdraw from them because depression has made these simple tasks feel impossible. Along comes shame, and the dreaded word ‘should.’ I ‘should’ be able to do this – I am useless, unhelpable.
The people giving the advice may think – “I’ve given my advice, they’re choosing not to take it: they’re not listening to sense; they’re not trying to get better; they’re draining my energy; you can’t help someone who won’t help themselves; we’re having the same conversation over and over again; I’ll give up.”
What you need is for someone to say: “I’m hearing you tell me that you can’t do this right now – so let’s go back a few steps – let’s break it right down.” It’s not about what you’re physically able to do, or what you’ve been able to do in the past. It’s what you are mentally able to do now, because depression has you in its grasp, and it’s grasp is tight.
Remembering when I’ve been unwell, I couldn’t leave the house. Lockdown was happening, and I was unable to work because of all of my symptoms, including lack of energy and motivation, fear. (Add in autistic executive dysfunction – probably another blog!) Not even managing to take the rubbish out to the bin for months; yet, I was told to “go for a walk.”
One day my nurse started to break it right down for me. Going for a short walk – to the lamppost and back – became my future goal. When you’re working toward any goal, you take it step-by-step, gradually building back the strength in your ‘willpower muscle.’
My nurse told me to “start by sitting on my doorstep, once a day for a week, and drinking a cup of tea.” (I had already worked on getting out of bed.) That was my one task for the day, and, I started to accomplish it. I was praised for it. One day, I walked over to Saffie Cat, (who was sitting by a bush five steps from my door,) stroked her, and walked back inside.
Then my nurse gave me a choice: either to walk once around my block of flats; or, walk to my car (to see if the battery was still working, having not driven for so long.) She said she would come over and do these things with me, but, my ‘willpower muscle’ was strengthening, and I wanted to do them by myself. (The car battery was totally dead.)
On Christmas Day, one nurse came to see me wearing her Christmas jumper, and we walked all around the neighbourhood without anxiety, far beyond the lamppost which had been my goal. Just as Boris Johnson told us we were allowed out for walks but had to stay in our local area – I had begun to research walks in the New Forest!
You have to break things right down, to be able to achieve the goal, like you do in teaching. My mental health nurse, Louise, is my teacher, that’s how I see it. And I’m eager to please her, but we need to be working at the same ‘level’ so that my progress is realistic. It turns out, that, she is a very good teacher, because I can accomplish things now that I could not have done last year. But you have to put the work in by yourself too, to strengthen your ‘willpower muscle.’
Let’s get out of bed, put on your slippers, then take off your slippers, and get back into bed. Rebuild your confidence from scratch. Better yet – let’s do it together – let’s introduce praise for it.
When you do make it outside, (do exercise, personal hygiene etc.) you realise “gosh, they’re right!” Fresh air on you face takes you out of your head. Exercise gives you goals and is one of the very best things you could do to help your mental health. (I’ll write about exercise in another blog.) But sometimes there is a process to getting there.
People don’t know when they might be hit by depression; they don’t know when their friend might be, or their parents, children, friends, colleagues. They don’t know how ‘likely’ it is, at some point. What’s scary is that people aren’t ready for it. They’re not ready for how transformative it can be: the changes in behaviour, daily functioning skills.
I’m thinking that this is my motivation to write. I’m a teacher, learning new skills in the realms of mental illness from my nurse, my own teacher. Teachers naturally want to teach others – they want to make hard things easier for others to do and understand – and, like in a class of children, everyone is working at a different pace.