Tuesday, 30 June 2020

Feelings

This is a guest post by Lyra Swann.


When all my feelings start to crowd in, my first tactic is distraction – anything that will take me away from my own head. Last night I learned how to solve a Rubik’s cube. Turn the left side towards you then the top to the right, left side towards you again why won’t these feelings go away? They’re a jumbled confusion getting louder and louder. As soon as I get one coloured square into place, another escapes. I can’t pick out which feelings are present; all I know is that they’re filling my head, squashing me, making it impossible to think. I put down the cube and head to bed.
In bed the emotions really cram into my brain. I can’t tell what I’m feeling – it’s like having a hundred different voices screaming at me. I’m so scared. I feel like I’m going mad. I feel like I’m relapsing back into the Bad Old Times. This episode came from nowhere, and that’s one of the most frightening things of all. This could happen again, anywhere, anytime, with no warning. I think I’m going mad.
Now comes the panic. I’m going mad, I must be. I’m going to destroy everything and everyone I love – just like last time. I’m toxic, dangerous, unfit for human company. My emotions are grenades which I carry with me and hand out to anyone nearby. I feel so alone and so out of control. I’m shaking uncontrollably, hyperventilating. I message a friend, and she responds with calmness and kindness. I take my pills and they knock me out. Sweet benzodiazepines.
The next morning, a lot of the thoughts that I couldn’t identify the previous night start to separate out and congeal. I’m making this up. It’s my fault that this happens, and I could get better if only I really wanted to. I secretly want to be ill, I want this pain. I’m a wimp for taking those pills and I should have toughed it out. I’m falling back into illness and it’s my fault.
There’s a part of me which doesn’t want me to get better. There’s a part which enjoys watching everything burn. It’s ready to sabotage my attempts to get better, to get help. It doesn’t want me to talk to my counsellor, or take my pills, or exercise, or build healthy relationships. It wants me to be as reckless and destructive and dangerous as possible.
I talk about these thoughts and impulses in the third person, but they’re part of me. Part of me wants me to be ill. So when I am ill, then this is just something I wanted all along. It is All My Fault. Blame and guilt are at the centre of this, along with helplessness and unworthiness.
Why is it that I can’t manage my emotions without getting completely overwhelmed and spiralling? Why can’t I stay healthy? Other people can manage it, so why not me?
There is actually a good answer to this question. I have Borderline Personality Disorder (BPD).
I feel scared and ashamed just typing that previous sentence. I’m not ready to accept that it’s real and that it’s a part of me. I’m scared to look at it, scared to see myself through that lens.
My BPD label feels to me now like the label of lesbian felt to me when I was fifteen. Back then, I was so ashamed to be gay. I couldn’t say it out loud; I could barely write it down. It made me into an outcast, an unlovable beast who didn’t deserve closeness or happiness. My gay shame told me that I was at fault for my feelings, and that the best thing for everyone else would be for me to hide away and to hope that I ‘grew out’ of it.
Reader, I did not grow out of being a lesbian. And intellectually at least, I know I’m not going to grow out of BPD. That thought terrifies me – knowing that this will always be here and that BPD is something I’m always going to have to manage. It’s a lot of work to manage BPD. A hell of a lot of work. And I’m still ashamed and guilty and lonely and frightened and a million other things besides.
Ironically, having BPD means I have a lot of feelings about having BPD.

Tuesday, 21 January 2020

Depression at the AMS blogs

https://blogs.ams.org/livingproof/2020/01/17/i-am-a-depressed-mathematician-by-matthew-pons/

The AMS Blog Living Proof is featuring posts by mathematicians who have struggled in their lives - many of whom have struggled with mental health.

Most recently, Matthew Pons posted about using mathematics to cope with his depression.
Go there and read!

Tuesday, 23 July 2019

AMS Notices

Jointly with Justin Curry and Julie Corrigan, I have published an article in the most recent AMS Notices about our mental health advocacy.

The Notices is the American Mathematical Society's members magazine, with a large readership within the mathematics community.

Monday, 22 July 2019

"The Post": Accidentally Tapping Into People's Pain

This is the story of our most viewed post, by a factor of more than 15 times.


Have a look at the stats for our top posts, all time.


I just changed that introductory sentence from "most successful" to "most viewed".  Our most successful post would the one that helped most, whether it be the author or readers of the post, or anybody. I don't know what post that is.  But  "most viewed" is unarguable. Also most commented on, again by many many times.

But that post feels very like a mixed blessing. Somehow it has sparked so many people to express their pain, and the pain seems so overwhelming.

The post title, "I don't necessarily want to kill myself", comes from this wonderful comic: "Depression Part Two" by the wonderful Allie Brosh.  The comic is a long one and expresses a lot about how I felt.  The phrase I used comes in this panel:


The post itself is not massively insightful. I do remember an early comment which criticised me for stealing the title from somebody else's work, which seemed odd and that comment disappeared quickly - either deleted by the author or my co-founder of the site deleting it as a rude comment.

That was it for the post.  So why is it - capital letters - The Post?

As time passed and we moderated further comments, we saw more and more painful and deeply pained comments of people it had struck a chord with.  You can if you wish go and find the comments yourself, but here are some excerpts. In fact to reduce triggers I'm only taking some indicative comments, not the worst things people said:
Even on a great day, given the choice I would opt out of living.
I feel as though my existence is worthless
I hate my existence, I hate the world I live in. 
Wishing I didn't exist is an everyday thing for me. 
I completely relate to it and this was almost word for word what I typed into google.
Those are just quotes from the first five comments, not selected highlights.  We have more than 100 comments and many of them are hundreds of words long.  The pain is just so immense, and these are people who don't want to kill themselves.  It's heart-rending to read the comments and there is so little or nothing we can do to help. At the same time of course it's humbling to have written something that touches so many people. And we are pleased to have been able to let people speak for themselves on our site. 

Being a sounding board like this is part of what we wanted for the site, but most people posting are not academics, or don't say they are.  Why?  What happened?

I think the clue is in the quoted text of the last comment: "what I typed into google".  I think that typing in that you didn't want to kill yourself had a good chance of landing at our page.  I think it used to be on the first page of results and it's still in the first few pages.  (The first hit is now and has for some time been for a counselling service for the suicidal, which is a good match, whether through an automatic process or manual intervention.) 

So somehow we hit on something that doesn't get a lot of attention (of course on the back of a great artist's work on the same topic.) 

But the human pain we accidentally uncovered, and seeing it in our comments as we moderate them, is ...  ...  .... sorry I don't even know how to finish that sentence.  But it's a remarkable thing and I think clearly shows why it's The Post.


Sunday, 28 April 2019

The Memorial Service

As a lecturer, there is no doubt that the best friend I ever made among undergraduate students was Madeleine (Madz) Conway or Patrick (Patch) Reynolds. Which one was the best? Choosing between her and him is easy because they are in fact the same person. She and he had many different names and gender identities even in the shortish time I knew them, so please don't get confused during the rest of the post.

I thought of her as a friend long before she died. I call her the best undergrad friend I ever made because I keep a certain distance between me and students: I think is necessary since I am somebody who is in a position to judge and assess them. I try to be friendly but not become friends at least until after they have finished their courses. But it was different with Patch.

She came to university to study Computer Science. I didn't know it at the time but it had been a massive struggle for her to get here, and indeed had included my colleagues showing sympathy towards her unconventional path through school (which had included hospitalisation).   I was first-year coordinator so naturally came across her. She was extraordinarily enthusiastic and interested and had bright yellow hair, and was not shy in coming forward to talk about things.  The first memory I have is of her asking if soya milk was available for coffee because she was vegan.  (A colleague started getting soya milk for her and other students).  

I would not have called her a friend at this point, but we did have a lot of friendly contact during her studies. In writing this I went back to check my emails from the period to remind myself of encounters.  And I was stunned how fast things moved.  She was incredibly open about her issues from the very start. I remember a conversation on the doorstep of our building, where she showed her incredible enthusiasm for the subject and learning.  But looking at my email I find that I reached out to her because she had mentioned in passing her mental health issues.  I mentioned this blog (then just a few months old) and that I had issues too, and in response she told me a lot about herself.  She mentioned her work for BEAT, an eating disorders charity. As somebody with many problems herself, it was typical of her that she worked hard to help others with similar problems.

Perusing emails show how often we engaged, whether it was because she needed to discuss aspects of the course or her work, but often just to discuss things that were on her mind. And many other meetings where she just popped by to say hello would not be recorded in my emails.  One sentence in one email caught my eye from this period: "For some reason I trust you as a decent person in CS (and there are a lot of them in this department)". Statements like that mean a lot.

But still, it was not in her period of study as a computer scientist that I would have called her a friend. We would have discussions about her issues with courses and her mental health.

Just a few weeks into her studies Madz told us she was transitioning from female to male, and using the name Patrick Reynolds or Patch for short. I had no idea what to do as coordinator, but fortunately our university policies seemed to be pretty good and straightforward.  Again he talked to me a lot about issues and appointments meaning missing classes, but as a very open person everybody knew what was going on and it seemed to be easily accepted.

This is kind of coming over as just a story about Patch, but it's also covered a young person with a lot going on in their head: serious mental health and eating disorder issues, and gender reassignment, but through all this being incredibly enthusiastic about her course and incredibly outgoing. In fact at some point she mentioned that she also had an autism spectrum diagnosis, but the stereotyped lack of social skills was in her case exactly reversed.

I must have suggested that she would be welcome to write a post for this blog. At some point Patch took up the offer and wrote a beautiful blog post for Depressed Academics, "On being the happiest person in the room", of which more below. 

One day around this time Patch appeared in my office and told me he was saying goodbye. I didn't know what it meant but it turned out that he was quitting Computer Science and not coming back. He took a leave of absence for the second semester and came back the following year as a Geologist.  Perhaps the most remarkable thing was that after stopping studying the subject, he helped out at open days to tell prospective students how awesome we were as a place to study, and remained as enthusiastic as ever.

It was after this that I started thinking of Patch as a friend unreservedly. There was little chance I would have to assess him and he continued to come by to chat when visiting his CS friends, as he often did. I remember him for example as an early and passionate Corbynista (supporter of Jeremy Corbyn for leader of the Labour Party). 

His second year in St Andrews he also changed his mind about study and again had a leave of absence, returning this time as Film Studies student, and as a woman this time.  She was still a friend and a visitor in her third calendar year at St Andrews. One memory stands out from that period.  I was still first-year coordinator and during the week before teaching started we had induction events with the new students. Remember, they'd been in St Andrews for less than a week. At one event I was talking to new students and mentioned that our degree has a lot of flexibility, with one of our students having changed from CS to film studies. Quick as a flash, one of the group said "Do you mean Patch?" which blew my mind since how did they know her and her history?   It turned out they were staying in the same hall, which is part explanation, the rest of the explanation being that she was Patch and had instantly got to know everyone in the hall. 

The other seminal memory is the tragic one. A few weeks later I got an email from a student asking for an extension because another student in their hall had died: Patch Reynolds.

This was heartbreaking. Amongst other tributes I wrote a small piece for this blog: "Rest in Peace, Dear Patch". There was an outpouring of many other tributes from friends and fellow students, and also people and groups she had helped such as BEAT.  

There was a family funeral near her home, which I didn't attend, but in the new year the University Chaplain helped to organise a memorial service for her, for everybody to remember her.  Somehow I got involved and ended up volunteering to speak, and it was agreed that it would be fitting to read out her wonderful Depressed Academics post from two years earlier. Here's what I read:

"Often I am told that I appear incredibly happy, positive and optimistic. By often, I genuinely mean at least once a week. When I tell people that I am actually a clinically-diagnosed depressive with aspergers, anxiety and an eating disorder, the response is usually befuddlement.  “But you don't act depressed / anxious / socially awkward / etc! Surely it can't be that bad?” they exclaim, “You act happier than I do and there is nothing wrong with me!” they continue, shocked that someone with mental illness can appear to be as happy as a small child who has just discovered how to blow a raspberry. According to many of the people I converse with, having a psychiatric disorder makes me unable to feel joy, express delight or giggle with glee. They wonder what exactly my secret is. Weed? Copious amounts of alcohol? Mountains of prozac? Nope. I'm just good at finding things to be happy about.
 
"Currently it's the fact that my Lush products arrived and they are making my flat smell absolutely delicious. It's the fact that the person who packed the products in the box wrote their name on the invoice with a love heart. It's a letter sent to me from a friend in the states. It's another friend promising to start a rock collection in my honour. It's my self stirring mug. It's the box of tissues I bought with a boat on the front. It's an email from my Geography tutor telling me not to worry that I couldn't get out of bed due to the flu because he also has it. It's my spotty duvet cover, my wind-up lego torch, my Thor figure, my replica of the ring of power, my mother sending me a picture of my dog, my hair defying gravity. It's the thought that someone has just read Harry Potter for the first time, that someone just laughed so hard they cried, that someone slipped on a banana skin and landed on their arse. The amusement of mishearing song lyrics, the fun of playing a videogame in a way that you don't normally do.  It's the little things, and finding humour in everything."  
https://blog.depressedacademics.org/2014/02/on-being-happiest-person-in-room.html
There are also parts I didn't read out, because she had died by suicide as a result of what her family called a "terminal mental-illness".  So it didn't seem appropriate to read her closing comments in that post:
"Preparing for the bad days on the good days is one of the best things you can do, and certainly one of the most useful things I have discovered in my 7 year long battle with mental illness. By planning for the worst and ensuring you have safe ways of improving your condition can save your life – it's definitely saved mine."  
I wish so much it could saved her life another time, and another, and another.  It wasn't to be. I've thought of her so often since then. For years I would constantly see somebody in town and think "Oh there's Patch" before remembering it couldn't be. When I mentioned this on facebook more than one of my friends said they had exactly the same thing.

Patch's friendship enriched my life. Her passing greatly saddened it, but did bring one good thing. As well as her friendship, our shared grief brought me into contact with some new friends who I still have, such as her uncle and the Film Studies lecturer who had got to know her in her period as a student there in the same way I had in Computer Science.

And one last thing I remember from the memorial. My colleague who had helped her get into St Andrews attended and had previously said he was worried that helping her get here had been the wrong thing to do, as it had ended badly. I was sure the worry was misplaced so I explicitly asked the family and they confirmed that St Andrews had been the "perfect place" for Patch. I am glad she came here to study and glad to have been her friend.






A different disorder than you

My therapist was telling me about some research which said that one can be more easily triggered if one experiences a non-positive environment for more than 35 hours a week.  In the context of research on schizophrenics.

In passing she said that it was interesting even though it was "a different disorder than you".

Not quite sure what my disorder is but getting some clues from my therapist. But it was reassuring to have me labelled as disorderly as a matter-of-fact statement of the obvious.