Wednesday 25 July 2018

How I Identify with Brain on Fire

Film review by Aimee Wilson

“Have you ever been trapped? Lost in your own body? Lost in your own mind? Lost in time? So desperate to escape. To just… get out.” — Susannah Cahalan

Firstly, thank you to Marty and Fran for asking me to write this piece on the brand-new Netflix movie Brain on Fire starring the incredible Chloe Grace Mortez. Secondly, apologies in advance — I haven’t written many film reviews, so this may not turn out how you’d assume.

I first saw the film in the ‘spotlight on’ section of the Netflix homepage and after I recognised Chloe Grace Mortez from the Kickass films and on seeing that mental health comes into it, I was determined to watch it. So, when one of my best-friends came over and said she hadn’t seen it; we knew what we’d be doing for the next hour and a half!

I guess that besides typing up the Netflix description of the film, the best way to explain it is by telling you my answer to those who have asked me ‘what’s it about?’ I say that it’s based on a true story and is about a young girl who gets all these strange symptoms and they try to say it’s mental health. Mortez’s portrayal of the main character Susannah Cahalan is incredible; the way she shows the crippling symptoms that the real Susannah Cahalan experienced speaks massively of her talent. I think that a huge reason for my enjoyment of the film is that I can identify with some of the biggest aspects of the story.

Psychologically, feeling trapped was one of the first emotions I experienced when I was abused; It felt like I couldn’t ever distance myself from myself; like my mind was trapped in my body. I think it came from dissociating during the abuse. I experienced my abuse as though I were floating from the ceiling watching it happen to another girl. Although that might seem better than experiencing it like it was actually happening to myself, I also had the conflicting feeling that it was worse because it was as though I were just standing back and watching this terrible thing happen to a poor, innocent girl; and I wasn’t doing anything to stop it. The worst bit was that I felt like I could. I was convinced that I could stop it; even from my position of floating on the ceiling.

Another symptom that is portrayed in the movie which I identify with is — obviously — when Susannah begins hearing voices. When I first experienced auditory hallucinations, it was like I was stuck in my body; I had no escape and was forced to listen to these strangers who consumed every inch of my head. Just like in the movie, not everything the voices said affected me in the same way; sometimes it was just like white noise and I’d only be able to pick out them saying my name every so often, and sometimes… yes, like in the movie… sometimes they wished me dead. I think that sometimes it didn’t actually matter to me what they were even saying; more about the fact that they were there and able to say something. Like Susannah Kahalan, the Doctors didn’t know what was wrong with me after I began hearing voices and a million different diagnoses were thrown at me before they decided on Borderline Personality Disorder.

I think that identifying with a character is always a great sign of a talented Actress and an incredible film and that’s why I’d definitely recommend you watch Brain on Fire on Netflix.

About the Author

Aimee Wilson is a 27-year-old mental health blogger who has used her personal experiences to develop a popular online profile. Aimee was diagnosed with Borderline Personality Disorder in 2009, and after over 60 attempts on her life was admitted to a long-term, specialist psychiatric hospital almost 200 miles from home. It was during her two-and-a-half-year stay in hospital that Aimee began her blog: I’m NOT Disordered.

Originally it was meant as an outlet for pent-up frustrations from inpatient life, and a means to document her journey through the trauma therapy that eventually led her into recovery in 2014. The blog has developed into a platform for others to tell their stories and to give their own message to the world — whatever it may be.

Aimee’s blog has grown over the past three years, and now has over a quarter of a million readers. Its popularity has resulted in three newspaper (in print) appearances, two online newspapers, BBC1 national news, ITV local news, interviews on BBC Radio 5 Live and Metro Radio; as well as a TV appearance on MADE.

Aimee has had the opportunity to work with such organisations as North Tyneside and Wear NHS Foundation Trust, Northumbria Police, Time to Change, Cygnet Healthcare; and with individuals who range from friends, family and colleagues, to well-known people in the mental health industry.

You can follow Aimee’s blog and read more about her at www.imnotdisordered.co.uk.

 

Monday 16 July 2018

Bipolar and Saying No: Why I Can’t Always Do Fun Things with You

An open letter to a friend by Julie A. Fast

Dear Friend,

It really upsets me that I have to say no all of the time. I see that you are going to the coast and staying in a cabin while having a barbecue. That really sounds fun. A few of you went to New York last week for a vacation. That sounds amazing. Another friend often has a TV night with her friends and sleeps on the couch if she has too much wine. That sounds like fun!

Some of my friends work a seventy hour week and it sounds exciting.

Others go to sporting events and sit way up in the stands and tell me it was amazing!

I want you to know how much I appreciate it that you ask me to do these things and then explain why I can’t join you.

It’s the bipolar. I don’t ever use bipolar as an excuse for bad behavior. That is why we are such good friends. You trust me and I trust you. But I know that my inability to be as social as you might like can cause us some problems.

If there is a party, I might say no or I might have to leave early. I will never hang out all night for New Year’s Eve and that block party that everyone says is so much fun is just a lot of noise in my bipolar brain.

You are not the reason I say no. In fact, I want you to continue to ask me to do things. You might have noticed that I sometimes do say yes to the evening or day long plans!

But for now, I want you to know how much I appreciate it when we meet for breakfast. Tea or an early happy hour is really great. I love going to karaoke by the hour because we can get there early and leave early. We still get to sing!

I LOVE it that you have so many friends and that you invite me to your parties. I know it is frustrating when you hear me say I am lonely, as I am the one who often says no to your events.

I’m writing this so that we can keep our friendship strong. Here is how you can help me and here is why I appreciate your friendship SO much.

  1. Bipolar is a sleep disorder. If you think of it that way, it will help you see why I have to say no to anything that disrupts sleep. You know how you can do a hood to coast run, stay up all night manning a booth for your other runner friends, meet for pancakes the next morning and then sleep it off the next day? That is not possible for me. That situation could put me in the hospital. I know. It’s crazy, but sleep is that important.
  2. Bipolar is predictably unpredictable. I never know for sure when I will be triggered but I know my basic triggers. Crowds — so sporting events and concerts will always be hard on me. Meeting new people. I CRAVE new experiences, but my bipolar brain interprets them as stress. So anything new is a challenge.
  3. I’m easily tired out by life. Work and seeing you for coffee might be all that I can do in one day. I hate this. I really do! But I have not been in the hospital for years and my friendships are stable because I am so careful.

These are just a few of the reasons I have to say no to things you find enjoyable and easy. And here is how you can help me.

  1. Encourage me to try new things and let me know that I can leave if it gets too rough. I am NOT saying I should say no to everything. That is unreasonable. I want to say yes, but let me have an outlet. For example, if I make it 90 minutes at a party, that is a success! If I have to leave a concert early, I probably enjoyed the first part a lot!
  2. Remind me that I am in control of my life and taking care of my bipolar is what makes our friendship strong.
  3. Remind me to think of YOUR needs. I can’t say no to everything you like and expect you to only do what I like. I truly want to find middle ground. You are my guide with this. Be honest with me. I can learn!

Thank you for being such a great friend. It has been fifteen years and counting. You are the best!

Julie

 

About the Author

Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. Julie is a board member of The International Bipolar Foundation, a columnist and blogger for BP Magazine, and won the Mental Health America journalism award for the best mental health column in the US. Julie was the recipient of the Eli Lily Reintegration award for her work in bipolar disorder advocacy. She is a bipolar disorder expert for the Dr.Oz and Oprah created site ShareCare.

Julie is CEU certified and regularly trains health care professionals including psychiatric residents, social workers, therapists and general practitioners on bipolar disorder management skills. She was the original consultant for Claire Danes for the show Homeland and is on the mental health expert registry for People Magazine.

She works as a coach for parents and partners of people with bipolar disorder. Julie is currently writing a book for children called Hortensia and the Magical Brain: Poems for Kids with Bipolar, Anxiety, Psychosis and Depression. She struggles a lot due to bipolar disorder. Friendships keep her going.

You can find more about her work at www.JulieFast.com and www.BipolarHappens.com.

 

Thursday 12 July 2018

No Promises Asked For, Offered, or Needed. A Vacation Postcard to My Best Friend.

Monday July 9, 2018

Dear Fran

It is 7:10 p.m. here in the UK. 2:10 p.m. with you in Maine. This hour is our hour. Usually we would be on Skype, catching up on our news and our plans. Just hanging out together, as friends do the world over no matter where they live or how far apart in miles those places might be.

This isn’t a normal week, though, is it? I am on vacation here at Ambleside in the English Lake District. Travel – on either my part or yours – inevitably means some disruption to our routine. One Skype call per day instead of two, for example. Or shorter calls. Occasionally none. That used to hurt. These days not. Or not so much. We have learned to trust.

We are doing okay so far this week! We had video calls on Saturday and Sunday evenings, down by the jetty opposite the fish and chip shop. It is always fun to be on with you when I am “out and about,” able to not merely tell you what’s going on for me but show you.

The lake here at Ambleside (technically, where we are staying is called Waterhead, but it is part of the town of Ambleside). The roar of motorbikes leaving the car park next to where we were sitting yesterday. (Sadly, Skype doesn’t yet permit the sharing of smells: I would so have liked to share with you the tangy aroma of exhaust fumes as one biker revved her Harley in my face!) I showed you inside the Wateredge Inn, your first English pub. Maybe next time we will stay for a drink.

We touched a couple of times on chat earlier today to share our respective good mornings, and our weights. (At 185.2 lbs mine was close to the lowest it has been in many months which is especially rewarding given I’m on vacation when good practice is harder to maintain.)

No call today, though. Whilst I am enjoying the peace and tranquility of Borrans Park at the very northernmost point of Windermere (note I say tranquility, not silence: I can hear the lapping of waves at the shoreline, the call of birds in the air and on the water, voices from the pub, traffic, and a troupe of teenagers making their way in a very orderly fashion through the park) – whilst I am enjoying all this and taking photos and writing these words to share it with you later – you are out with friends having adventures of your own!

All being well – no promises asked for, offered, or needed – we will have our call tomorrow evening. And then you are off on a mini vacation of your own to Monhegan island! Four days. Three nights. No promises asked for, offered, or needed – but we will do our best to connect. To share words, the sounds of our voices, video, photos – the essence of who and where we are in the moment.

Because the moment is what we have to share. It is all any of us have. Seven plus years of moments have brought us to here as best friends. A heap more will carry us wherever we are set to go. Calls or not, Fran, I will be with you when you are away. As you are with me here today.

Hah! You just messaged me:

Milkshake AND ice cream. On boat.

– I figure you’re having fun! It’s not just that we are best friends, of course, is it? There is more to it than that. There is trust. And honesty. And vigilance. You messaged me earlier today:

Should I bring risperdal? I wonder if I am bordering on mania.

You mean today? Or for your trip? Definitely on the trip (it is on your packing list already). Worth bringing with you today if you are asking the question.

And so, at the mention of “milkshake AND ice cream,” I remind you to keep an eye out for that edge of mania. And that is how we are. We can switch seamlessly from whatever it might be that we are doing or talking about, into a deep and yet simple caring awareness that works both ways. (Not everyone gets that – that you are here as much for me as I am for you. In different ways, perhaps, but no less.) Thank you.

See you soon.

Marty

 

Wednesday 11 July 2018

How Writing a Memoir Has Helped Me Talk More about My Mental Illness

By Peter McDonnell

I’m going to dive right in and begin. I hope people with similar problems with psychosis and anxiety can relate. Since writing a memoir of my experiences with psychosis, anxiety and recovery I have found that I can talk much more easily about my mental health issues.

Before I began my memoir in 2015 I had no interest in sharing how I was feeling about my illness with my supportive team (my parents who are both qualified psychiatric nurses, my various psychiatrists, my care coordinators etc.), friends, family and work colleagues. Now, just try and shut me up!

I often have to remind myself in general conversations that though my mental health and recovery fascinates me, other people are usually not as interested in my experiences as I am (but sometimes they are!). I had my annual appointment with my psychiatrist two weeks ago. She asked how I was, and so I began.

I am doing really well. I’ve been a bit blocked up with constipation – I understand that my medication (Clozapine) can sometimes affect this. I’ve been eating lots of fruit and veg and I bought some prune juice earlier today, so I expect the prune juice to work and I should be fine by tomorrow.

My anxiety is still improving, it’s at such normal levels now that I’m not really thinking about it and I’m not sure it’s any higher than what normal people get from time to time.

But I am wary that I’ve been challenging myself less recently. My nieces and their parents lived in London until a few months ago before moving to Denver, and taking the train or driving up to see them fortnightly was a challenge that helped me keep my abilities to stay on top of anxiety I think, and I do wonder sometimes if not having this regular challenge might make me rest on my laurels a bit and get too comfortable. For the last few years I have found that remembering to keep well is sometimes very important and if I forget to, I feel a certain dip in my general mental health.

I keep well by doing a mix of little and big things. Sometimes it’s just a case of asking my brain in the morning what kind of positivity I want to feel that day, and for reasons unknown to me, it works and eight times out of ten at the end of the day, I find that I have felt exactly how I told my brain I wanted to feel!

Other times I have found it helpful to push myself a bit and do more challenging things, like spending the day looking after my nieces in London. They lived in Chiswick and I’m very close to them, they are two and four years old. I think looking after them taught me responsibility and some of how to be a mature adult, and after doing the parenting thing for a bit, whether for an afternoon, overnight or for a few days and nights I felt very in step with the world.

It’s at this point that the doctor senses that I am doing well. I sense her sensing it. I then decide that I have more to say.

My psychosis and ideas of reference are still there, but I am controlling them well. I used to feel like people in queues and waiting rooms could read my thoughts, but it’s happening less recently. When it was bad I’d be standing behind someone in a queue and my ‘Telepathic Tourette’s’ would start and if the person in front of me was very ugly, then I’d hear in my mind “fuck me aren’t you ugly” and because of my stupid and annoying telepathic abilities (that I don’t think I have anymore) I’d think they heard me.

Then in my mind I’d feel like I had to explain to them, telepathically, that I don’t really think they are ugly, even if they looked like a Hyena. I am a nice person who doesn’t insult the afflicted; I’m not a ten out of ten myself!

But then like Tourette’s syndrome all the other insulting thoughts come out and the people around me can hear them, like ‘you’re a prick with a stupid haircut’ or ‘you smell like a landfill site’. It’s annoying, but recently it hasn’t been a problem and thoughts are appearing in a softer way in my head in these situations, so that’s a good bit of progress.

My job is going well, I used to get anxiety at work a few years ago, but I don’t anymore. My mental health memoir and website is coming along, I recently had a friend with lots of Facebook friends share a link to it and I got 2000 visits in four days. I have been working with a website guru to improve my website which is going well too.

By this stage my Doctor begins indicating that she isn’t interested in a haphazardly scattered lecture and that she has other people to see. So I wind it down and she does the usual thing, checking that I am still taking my Clozapine without any problems and she says that we could do a full check on everything via blood test, a sort of annual check-up of glucose levels, lipids, Amylase, B12 and calcium etc. She says that I seem to be doing very well. She gives me a blood form to take to the phlebotomist and we say goodbye.

I throw her an accidental curve ball as I remember that I wanted to ask if she could recommend a popular online psychosis journal that I might write a paper for. She says “No, sorry – but good luck with your writing, Peter”.

So that’s how I tend to speak to my psychiatrist. I hope it shows that a person can be comfortable talking about whatever they like to them. When you are ready, open up.

I rarely opened up to people about my mental health before I started writing about it in my spare time. For me it wasn’t really stigma or the taboo factor that made it difficult to talk. It was that the words were hard to find. It’s not easy to talk about why a panic attack may have started, or the processes involved with bringing about a period of good mental health, and often it’s complicated to answer a simple question like ‘how are you’ when you are at the doctor’s office. One is supposed to elaborate when they are asked how they are by their psychiatrist. In regular daily exchanges ‘fine thanks’ is sufficient.

If you are like me and have or have had limited social conversations due to staying at home a lot, because of anxiety issues perhaps, then the power of descriptive speech can begin to fade. Lots of people get embarrassed when discussing their mental health too.

Before I wrote my memoir, talking about the finer points of my mental health often felt like a fruitless endeavour – an impossible task. I felt like I could talk if I wanted to, but that there was no way I’d find the words to be understood properly. For many years I had very little insight or understanding of my illness. It felt like there was no way my team could understand it any better by me talking about it, because I didn’t even understand it myself.

But these days I talk about it all the time and talking is helpful for mental health for hundreds of reasons. So helpful in fact that there is a phrase assigned to the action of talking about mental health – ‘talking therapies’. Talking can help you take charge of your well-being.

The thing that allows me to verbalise it all is my writing. I have been writing about my mental health and recovery for at least four years now, including a book, articles like this one, papers for online mental health journals, travel articles and my blog. Writing has instilled a sense of enthusiasm, so now I find that my mental health and mental health in general (especially how my own experiences with mental health compare with other peoples) is my favourite subject. I can also find the right words when I need them and I am keen to pick up knowledge and tips through conversation.

If you want to use talking to feel better about your mental health I would recommend writing a journal of your thoughts about your mental health at the end of each day. Then when someone asks you how you are, either a friend at work or your psychiatrist, you will remember your journal and feel like you have some thoughts to share. You will often feel more enthusiastic and the words will be ready to go on the tip of your tongue.

About the Author

To read more of Peter’s writing about his journey with mental illness and recovery visit his website petermcdonnellwriter.com which has extracts from his memoir, articles written for other websites, his blog, a guest post page and more.