#he kept giving me bullshit mental health advice he saw on facebook

[fumrell]

Mental health in such a bad spot that not even fursona art can help

[pasdhospitalite]

Context to the video ‘Not Coping (Conversation over Lunch with Mum) Video 1/1 on me, her, and MND’

In the video (please read the description on Vimeo and then this before watching AND before reading this - trigger warnings are on the video link page) my mum is surprised because she doesn’t think I’m a panicky person. I explain to her the trauma and panic I kept secret when I knew she was terminally ill. I knew this for sure about 5 years ago exactly (November 2013) although the official diagnosis came two years after that (late 2015). The context of this video discussion is that my dad died suddenly on 22nd October 2013 and my mum went for what she thought was a relatively routine nerve conduction study to get to the bottom of why she had a weak grip and muscle wasting in her right hand (we thought nothing of it) a week or two after my dad’s funeral.  As soon as that study was done and I saw the reaction of the consultant and his refusal to tell us what was wrong with her I knew something was wrong. I pressed him and he said “she has generalised muscle weakness that she’s not noticed. I will write to your GP and I cannot diagnose her”. I categorically do not recommend self-diagnosis or diagnosing others. But I went home and started researching. I did not yet recognise that my obsession with diagnosing her and processing her terminal illness before the official diagnosis was a symptom of my ill health at the time.  But I went home and started researching. I still had institutional log in access to academic journals because I’d taken an immediate, and what I thought was an indefinite leave of absence from my PhD at Royal Holloway upon the death of my dad from a sudden heart attack. I concluded that she had Motor Neurone Disease and, based on her age and accounting for large data sets in studies into MND and mortality that she had 2-3 years to live at best (only 10% of sufferers live a decade or longer with the disease and they tend to have been diagnosed at a younger age) and that she had the worst disease imaginable. I was not and still am not a doctor and so this diagnosis and its obsessions was a mistake. But it has been born out in reality. She has now been living with MND for 5 years. Don’t diagnose yourself or others around you. Wait and see until you’re given an official diagnosis. You can deal with whatever it is and carrying a burden of thinking that you or a loved one has got something awful wrong with them before you actually know for sure is quite literally (I choose that word carefully) unbearable. 

Putting that advice aside (I hadn’t taught myself it back in late 2013) my mindset at that time was that my dad had just died suddenly (I was grieving) and that I’d ‘found out’ that my Mum had an awful, awful disease and only had a few, increasingly unwell years left to live. The progression of the disease results in progressive and near total paralysis and respiratory failure with no effect on cognitive functions (usually). I resigned myself to quitting my PhD, or radically reformulating after her death, moved home from Oslo, and threw myself into being a chef at a Michelin starred restaurant in East Yorkshire. I knew I needed to work and to do things with my hands and to be part of a team. And I knew that the trauma I was experiencing would only get worse (or thought I knew) and I couldn’t even face the idea of reading a book or writing or researching or thinking about banal corporate art in airports, or returning to a different country away from my mum during the process of her dying. And I knew that she was dying 18 months before she got the official diagnosis.  In the video I discuss how I COULD NOT HANDLE (the only time I’ll ever capitalise for effect, I promise) all of this knowledge and grief and the anticipation of trauma pressing on me. We discuss coming to terms with terminal illness (there’s a lot of happiness still to be had) and not bottling things up. I’m currently detoxing from benzodiazepines and I explain how I started using drugs like that in the video too. The video is mainly audio and out of focus. 2 years ago I started trying to make a��‘proper’ film about my mum, bought a v expensive DSLR and audio recording kit and was totally paralysed by the responsibility I felt to make the right kind of film. All that thinking was total bullshit internalised on the basis of what I thought was expected of me. Fuck that. This is important too for context of starting, just starting, to make work about me and my mum and MND: On New Year’s Eve of 2018 (nearly 3 weeks ago) I started to draft a Facebook post thanking the people really close to me for giving me joy this year. I realised I could not do this without explaining why I’ve needed so much support over the last 5 years. So before I knew it I’d written 2000 words and the fireworks were going off on the TV and the essay had turned into the detailing of my dad’s death and my mum’s diagnosis so that the people I was thanking could understand why their support and inspiration has been so important to me, and especially how the joy and pain I have experienced in the last 18 months has been so important to me as healing. I’d also gone off on tangents, written really angry paragraphs about a perceived lack of support from Royal Holloway in the two years after my dad died (they terminated my PhD on a technicality) and still not gotten to thanking anyone.  That essay of trauma and thanks would probably reach 10,000 words and nobody would read it. I’d put it on social media and tag all the people and then they’d feel obliged to read it and that might be a burden. Plus, I’ve decided that having conversations like this with my mum is a better way of exploring issues of anxiety, depression, substance abuse, terminal illness, bereavement, family addiction, panic, perhaps undiagnosed PTSD on my part, and love, and joy, and pleasure. (We’re doing really well, by the way) I am only able to do this because I have got much better mental health now because I sought help after a panic attack in Spain (discussed in the video). But I am also fully aware that I am also only able to do so because of the amazing support I have received over the past 5 years from family and friends. I believe in situating one’s knowledge and that means acknowledging what makes it possible for me to be able to speak, to film, to function, to not collapse. It is especially over the past 18 months that I have met fearless artists who speak from the heart and seem to be brave without limits. I realised that I could be brave too and just say whatever I wanted to say about my life however I wanted to and that I couldn’t care less if anyone thought I was stupid or my speaking had no value or that I wasn’t worthy of being heard.  But I do care if this kind of story telling is useful for other people dealing with similar issues. I don’t want to cause harm. If you think I’m causing harm I want to listen to you. Please contact me.  So, here is all that thanks without that bothersome tagging that can seem as much selfabsorption as genuine and radical gratitude. I’m thanking these people either because they have always been there for me and are unequivocal friends who I can rely on and put my life in their hands if I need to, or because they’re amazing role models and have given me hope and fire and zest and inspiration. I’d become a person who hid for a few years. I’m not hiding any more.  It’s no coincidence that the majority of people I’m thanking are woman. I hope I can give as much as I can take. Thanks to, in no order of importance, Tom Williams, Rosalind Williams, Claire Stansfield, Jon Stansfield, Phil Johnstone, Cogs Stansfield (no relation, I think...) Dan Morris Lea, Natalie Morris Lea, Kathryn Thomason Stripling, Richard Thomason-Stripling, David Parkinson, Rachel Houmphan, Max Houghton, Lewis Bush, Jane Thomason, Grace Oni Smith, Jasmine Johnson, Vivienne Griffin, Lisa of @BlueBagLife (sorry I don’t know your surname!), and Rachel Pimm. I’ve hyperlinked to your work to point anyone who might have gotten this far to how AMAZING it is!!! If I believe people should insist on welcoming an unexpected guest three times then I should give thanks three times too. Thank you, thank you, thank you. There’s joy in the video. If you’ve got this far I hope it’s useful. 

[pisati]

my friend in jail wrote back to my last letter a few days ago, and I just got it today. we’ve been reminiscing a little bit over the passage of time, him more solemnly. he’s mentioned it a few times but I still can’t wrap my head around it: we really have been writing back and forth for about two years now. I do remember reaching out, and I guess it really was summer two years ago that I saw his mom’s post on his facebook page, pleading for his friends to write to him while he was in court-ordered rehab. 

the summer I transferred schools, I ended up getting really sick. I was alone, didn’t have any friends around, my anxiety was off-the-charts, and on top of that I didn’t know what was wrong with me. around the time I was supposed to get my CT scan done, when I was in so much pain I kept calling off at my part-time job til I quit, I was afraid I’d die in my sleep. I couldn’t eat or even drink, really, and I was dropping weight like nothing. at my lowest I weighed about what I did when I was 14. I could only sleep 3 hours at a time. I’d stay up til morning and wake up after a few hours to my heart pounding. one morning, must’ve been around 4 or 5am, I got a random facebook message from this guy I knew of in high school but had never talked to. he was part of the “cool” crowd, sort of. I knew of him as one of the class clowns who partied on weekends with the other kids fitting that descriptor; everyone knew who he was, but he wasn’t one of the populars, if that makes sense. he’d been in detention or in-school suspension for something or other since middle school; not really a troublemaker, but definitely not a model student either. I don’t think we had any classes together, since he mostly took the academic-levels and I took the advanced/AP courses. or maybe we had stats & discrete together in 12th grade? I don’t remember. I think he friended me my first year of college, back when everyone from high school added everyone else from high school just because we had mutual friends. I was maybe a little surprised, hence why I remember when he added me, but we never talked. but that one summer he’d seen one of my statuses about being sick, and messaged me to say he hoped I was feeling okay and that I’d get better soon, also he thought I was pretty (lol), and he confessed he had to get pretty drunk to work up the nerve to message me. that got a laugh. 

I don’t remember how often we talked back then, but it was often enough. he’d check in on me, only ever polite. he told me about the girl he was dating (or had just broken up with?), I’m sure I told him about my whole ex-boy situation. I tried to gently advise him away from making the poor decisions he was making as far as this girl, he comforted me telling me that I was a catch and any guy that couldn’t see that wasn’t worth my effort anyway. we kept talking sporadically through 2015; I remember messaging him (I’m pretty sure it was him?) while sitting on the couch one winter in T’s then-girlfriend’s apartment; they’d invited me and A over for some reason or another, and I don’t even remember what movie we were watching because I didn’t watch a second of it. I’d been staring ahead at the bookshelf until I got a message, then I was engrossed in complaining about the whole situation, ha. he was ever the patient listener, and very courteous about offering advice, lowkey bashing these guys in my life too, ha, but being aware that he didn’t know the situation all that well. a lot of his advice was well-founded, though, and I definitely put a lot of value in what he said, though I can’t remember much of it now.

I don’t remember us losing contact, really, all I remember was that I heard about his best friend’s heroin OD, and then later saw his mom’s posts that she’d tagged him in. once we started writing back and forth I learned how hard he took his friend’s death. I don’t remember how he ended up with his grandparents in kentucky, but he was there and ended up stuck there because of his felony charge. he learned a lot about his own issues in rehab, became much more self-aware and reflective and he knows he’s grown into a better person despite everything. it makes me glad that time is at least passing quickly enough that he may be able to be with family soon. I think he may be released into a substance abuse program next month, and he’s really looking forward to that. I feel like I’ve had to remind him to keep his head down until he gets out, but jail politics are unfamiliar territory for me. he’s told me some pretty wild stories, most recently about someone who ratted about a tin of dip that was in a common area and tried to pin it on my friend (and of course it wasn’t his; he’s not stupid), some guy in his pod who keeps starting shit... he doesn’t want to have to fight this guy, he tells me, but if he starts anything with him he’s not going to sit there and take it. but I know he’s got his goals at the forefront of his mind and he’s hopefully not going to jeopardize them for some petty bullshit.

it’s just amazing to me, though, how long it’s been. but he’s right; all of it did happen. it really has been that long. at least he remembers it.

It’s crazy that my time down in Paducah was 2 years ago already... I want to ask where 2018 went and then I remember that I spent half of it locked up. 2 years of you keeping me company through thoughtful writing and thinking about that feels, I don’t know, deep? I mean you took time to write me in sickness, school, personal ups and downs, etc. Even when people I’ve known for 18 years can’t write me or ask how I am, or when family forgets about me and can’t take a minute to ask about me or write me. Yet you take time out of your free time to check on me by writing, when family can’t send me a birthday card but you’re able to hand-make me one. I appreciate you being such an amazing human being and friend to me.

that’s all I could hope for, really. just keeping some kind of hope alive in him, even if it’s just me. sometimes that’s all you need to get through hard times; just one person to care enough. I could feel the desperation in his mom’s posts, saying how nobody was writing to him and he was lonely and going through losing a best friend and now rehab for alcoholism instead of jail (but then eventually jail because he missed one meeting and had someone sign his name for him, and someone ratted on him). and like... he was there for me when I needed it, what kind of person would I be to ignore him when he needed it most? I couldn’t imagine being in his situation and feeling like nobody cared. being hundreds of miles from home, knowing your best friend is gone, only having limited contact with even family, and then on top of that being stuck in jail with a bunch of other smelly guys (he often complains about the smell of a bunch of guys living together in small quarters), most of which are drug addicts, alcoholics, repeat-offenders, many of them he’s described to me as ‘not terribly bright’ (in kind terms, of course)...   it was hard enough for me having to move home from PA once I finally found a group of friends I was actually comfortable with, who seemed to genuinely like me and appreciate my company, and feeling like I’ve been slowly losing all my friends since I left, feeling like nobody even wants to spend time with me because when I ask I’m just met with silence... I know how bad that feels, but to be at your absolute lowest, in his situation, and feeling like nobody even cares to write to you? check in on you? see how you are? nothing at all? I knew he had enough of being made to feel worthless by too many people in his life. if I could make even a little difference by being there for him, I couldn’t not do it. sometimes it has felt like a chore to write back, but only because I feel like I need to write enough for it to be worth reading. I want to come up with thoughtful replies, and for that I have to be in the right mental space. sometimes it’s taken me a week or so to write back, but he doesn’t mind. he appreciates the effort I put in anyway, and understands I only have so much energy; in this last letter he reminded me to pace myself and not to push too hard if my walks and yoga are too much for me. I appreciate his being so understanding too; too many people hear I can't get through 2-3 mile walks without crashing and insist I must be faking it, or I’m just really out of shape. there’s always some reason that’s my fault.

he’s started calling my letters Hannah Weekly, haha. I tend to write little updates about my life to give him a glimpse into something else beyond jail. he doesn’t seem to mind, though; he doesn’t have much to update me on anyway, besides the little things they find on road crew sometimes, or when the officer supervising them on road crew treats them to fast food every so often. or this new lunatic in his pod. he earns 63 cents a day, he says. and a jar of peanut butter is $9. either 7 or 9; something outrageous. his poor family has to pour money into this jail just to keep him semi-comfortable. 15-minute phone calls cost money too; I forget how much. but he still tries to call me about once a week or so now.

he didn’t have much to say about my health, but I understand he’s not well-versed in any of it. I mostly just write about those things to vent, get my thoughts organized in my own head. but he reminded me that, on top of my health not being good, I really have been worn out. 

You’ve had a stressful year and even before your father passing you were stressed out from work, and before that it was from school. You’ve mentally and emotionally been through a lot in the last few years. Changing schools, having to leave friends behind, shit with your ex/friend from PA, etc. It all adds up and takes a toll, you know? 

I feel like that should be more obvious to me. it sounds like something I’d say to someone else. but I’ve probably been brushing it off. taking it as it comes, one thing after another. what’s another mental, emotional hit? isn’t this just life? but maybe I really did need to see it worded like that. I’m sure it’s occurred to me that it all adds up. but maybe I thought I’d just moved past it. that I’d healed between hits, even though I knew I hadn’t. the damage was still done. the toll had been taken. a rock is still a rock even when it’s been chipped at, but those chips do add up over time, and before you know it, the rock is shaped entirely differently. I definitely feel different. but is that not still life? we’re all shaped by time and everything that fills it, good and bad.

I’ve always been a supporter of the idea that everyone handles different amounts of trauma differently, and people change in how they handle trauma too. a nightmare that I could brush off like nothing today sent me into an hours-long panic attack just 5 years ago. but all this time, over everything I’ve been through, I’ve still never truly felt like my pain was justified. I’ve tried to convince myself I’m just being stupid, overemotional; that it’s really not as big of a deal as it feels like to me. boys hurting me (we never even dated; he told me repeatedly it meant nothing), losing my pets (’they’re just rats...’), feeling completely alone (people all have their own lives; so what if nobody ever responds to your posts about wanting a concert buddy), feeling like I’m worthless and useless and generally inadequate (just get over it; you’re overreacting; other people have it worse so you shouldn’t be feeling so bad because you have no real reason). no matter how unfounded... things still hurt. they can still pile up. stress and emotional pain and self-loathing and fear... it really does add up. it really does.