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."
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.

Wednesday, 27 March 2019

Economics discussing mental health

Following the suicide of Alan Kreuger, a conversation has gotten started in the Economics field about mental illness, mental health and how best to take care of the faculty community.

The entire article is worth your time and attention - this part stuck with me:
After hearing of Krueger’s suicide, Beggs used Twitter to implore people to talk more about mental illness. “We need to stop thinking that professional success shields people from depression and the like,” she wrote. And “we need to remember that economists are still people, with all of the messiness that that entails, even when they appear hyperrational regarding economic matters.”

Wednesday, 20 February 2019

Fine thanks, just tired

I wrote this a few days ago when it was bad. It's better now.
I am
zoned out in the cereal aisle stare mutter notice myself hope no one sees don't really care but shame

I am
here to buy bread plus peanut butter keep me alive the psychiatrist asked if I was eating not if I was cooking

I am
maybe I should eat an apple crunch nourish feel it yes but no no too many choices taste price food miles difficult can't

I am
OK for eggs I think

I am
holding it together not lying on the floor not crying not crying checkout not screaming not crying walk home not crying not crying not crying

I am
fine thanks just tired

I made him write it down

This is another guest post by Lyra Swann. Her first post is here.

I made him write it down: Emotionally Unstable Personality Disorder. 

Once it's written down, it's real. No-one can take it away from me. This diagnosis is validation; it affirms so many of my feelings and experiences. What I feel is real, it is happening, it's not "just me". I have a way of expressing some of the challenges I face. I've always been battling, but now I've glimpsed my foe.

Monday, 18 February 2019

Yet another go at therapy, episode 1

Should have found another therapist months ago but am trying somebody now.

Did a questionnaire about how things have been over the last two weeks.

Comes out as "Moderate to Severe Depression" and one more point would have been "Severe." 

Except the last week or so I haven't been quite as bad so I gave lower scores to some answers than I would have done a week ago.

Asked me what I want from therapy and I don't really know but managed to say that being able to control my obsessions would be nice.  Sometimes I want to get lost in them but other times I need to stay away.

Monday, 11 February 2019

Something Changed

“ - And I imagine it makes you politically angry as well -” says Serena (not her name, but it'll do).

“Yes!” I exclaim. We’re talking about the fact that I am shelling out eye-watering amounts of cash for a private consultation with a clinical psychologist, and am painfully aware that so many people who need this kind of help can’t afford it. It’s funny that Serena knows I’m politically angry about this, because we’ve just met. But then, talking to her is really fucking expensive, so it’s reassuring to know she’s perceptive.

This consultation could not be more different from the one with the NHS psychiatrist. Apart from anything else, it feels like Serena and I are bonding. It’s remarkable how comfortable I am here, 45 minutes into a chat about whether or not I might be autistic. NHS guy had squirmed a little when I suggested it as a possible cause of my recurring (and recurring, and recurring) depression, said “You see, the thing is, it’s a developmental disorder…” and when I couldn’t provide a completed questionnaire from either of my parents, declared there was nothing that could be done for me. (I was politically angry about that, too.)

Serena asks me about sensory issues. Sounds stress me out more than most people I know. A lot of people's voices are too loud for me, but I know it's weird to ask them to be quieter, so I don't. If I hear a sound with a rhythm or tune, I can’t help but tap it with my fingers (pinkie for higher notes, thumb for the lowest, and a complicated mapping for tunes with more than five notes so that - never mind). I startle so easily that people think it’s odd. I can not cope with warm rooms or the heating in cars or bright sunlight –

OK, so, social communication. I'm OK at this, I think. But I remember the day I learned about hyperbole. My mum explained it to me. I’m grateful to her that she always took the time to explain things to me. She told me about sarcasm, too. I can spot it most of the time (I think?), but I have not yet learned how to respond to it with the right combination of words and tone to tell the other person I’m in on the joke. I have ‘small-talk scripts’ which I can run without too much bother, but if you ask me a hard question it’s quite likely that I’ll have to shut my eyes to formulate the answer, or maybe stare at the wall above your head and answer in a monotone. I hope one day to learn how to say “I’m really sorry to hear that” without it sounding horribly phony. The fact that I can’t makes me sad.

“What about intimate relationships?” asks Serena.

“Ah, I knew that was coming!” I laugh. So does she. But seriously, we have to talk about that now. OK.

There was a time when I thought I had to be in a romantic relationship. (You can see why a girl growing up in the 90s would have formed that impression, right?) That did not work for me at all. Sex is fine, but there are plenty of other things I’d rather be doing. When someone has romantic feelings for me, it’s like being yelled at in a language I don’t understand. I find it confusing and exhausting. I quit conventional relationships about a decade ago and am now quite content with a kind of aromantic, grey-asexual, relationship anarchy kind of approach to life. (It involves a lot of difficult, honest discussions about boundaries and plenty of time for sudoku.) NHS psychiatrist referred to this as my "um, trouble with relationships." Potato, potato, I guess.

Serena nods a lot while we are talking. It is the nod of someone who is finding what she’s hearing very familiar. She asks me if there’s anything else about me that people might consider ‘weird’. This question was also not in the NHS consultation.

So I tell her a few things that come easily to mind. When I was a kid I loved car number plates. Still kind of do. A digital clock display is ‘good’ to me if the sum of the digits is divisible by the number of digits it has, and this has been the case since before I could use the word ‘divisible’.  When I take eggs out of the box, I like to make sure that the ones that are left are arranged in a symmetrical pattern. My housemates at uni said that watching me eat a meal was “like watching surgery”, so now I try to eat in a less weird way, but if I’m not concentrating I’ll still eat my food one component at a time.

All of this discussion takes place over an hour and a half, interspersed with observations about how the Fucking Patriarchy impedes women from getting the mental health help they need, discussion of the possibility that I might also have ADHD (it would explain my relationship with deadlines), the pros and cons of SNRIs, and what a shame it is that I got slapped with a personality disorder diagnosis by NHS guy when everything about my presentation screams ‘autism spectrum’ to someone who knows a bit about how it presents in women - especially ones who happen to be good at passing exams.

Serena says that I seem to be more concerned with finding out about myself and making peace with whatever I find than actually putting myself into a diagnostic category straight away, and she's right. But as the session wraps up it looks like I might be on my way to being diagnosed with an autism spectrum disorder. Like my sister, now I think of it.

I go back in a month.