Now You See Me. About DID

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This is reblogged from mental political parent.

Now You See Me

 

I was one of the “lucky” 200 or so people “selected” to attend see me…..now, billed as “Scotland’s Programme for Ending Mental Health Stigma and Discrimination” It was to be a “movement for change” an “agenda setting event” that was to take place over two days. In return for my attendance they offered free meals and overnight hotel accommodation; being a single parent of two children with zero support or respite in spite of suffering from a severe and enduring mental illness I’d have been mad to turn it down on that basis alone. Those of you who’ve known us for some time will know we don’t have a great track record with seeme or for that matter any of “the orgs”. It’s like rain on your wedding day, a black fly in your chardonnay that in all my time as a mental the only stigma and discrimination I’ve suffered, outwith the MH “profession” has come from the orgs. I’ve talked about it before here and grumbled about if for years on twitter. I was also persuaded to “give seeme a chance” they were re-founding, things were changing, this time it was going to be different.

I’m very keen on change, both personally and politically (with a small, very small “p” in this instance) I think I have a lot to offer to the wider mental health “movement” it’s a movement that hasn’t actually moved in years and from where I sit shows little sign of doing so but I wanted to be involved, I wanted to have my say, I wanted to be seen. I agreed to go.

The week of the conference was as ever a tumultuous one, as I sit here now I can’t tell you what that tumult looked like as I can’t remember. One can only assume it was the usual blur of depression, amnesia, suicidality, happiness, loneliness, self-injury, caffeinated drinks, insomnia, laughs with friends, trips to Tesco, wine comas, catching up with laundry, school-runs, getting up, going to bed, general madness and getting on with life and all it brings. All in all, a normal week with DID.

All week however I sat with the pervasive feeling/knowledge that though I wanted to be part of “a movement for change” and though I wanted to have my say and be seen, I didn’t think an event run by seeme was the best way for me to do it. I really wasn’t up for it at all.

I don’t doubt some personal/pathological reasons for not going crept in; it was a huge thing for me to do, to go “out there” again after some 5 years out of the loop, out of any loop. I had to consider whether it was safe for us to do, after all my twitter account is public, the venue of the conference was publicised so there were some risks to be managed. I briefly considered our “stability” and whether that in itself was a factor in my reluctance to go but rapidly disregarded it. If we wait until we’re stable to do anything then we’ll never do anything. Where stability fails, heavy dissociation kicks in. Though I’ve been impotent for almost 5 years in a “work” sense I haven’t lost any of my own, individual skill set. Many of those who share my life/mind/body have similar skills and more than anything we’ve learned recently that a mind like ours needs

Things

To

Do

I arrived at the conference having had to endure a drive with the car playing various tricks, a “low pressure warning” and a very noisy brake disc, it wasn’t the best journey I’ve ever had but I arrived on time. Things kicked-off at 9.30 ish with the usual conferency, welcome type talk but this talk had added extras. There was the usual warning that the fire alarm would be tested at 1pm, fine, it’s good to know we didn’t have to flee a possibly burning building, and there was probably some stuff about room check-in, lunch and things, fine. What was also broadcast to the conference hall was a telephone number by which attendees could access “trained staff available to offer advice and support”.

What?

An event to address stigma and discrimination in mental health had assembled a delegation of adults to discuss the topic but felt the need to offer this service?

That is stigma.

An assumption that by value of having a diagnosis, an adult can’t make it through a conference without “trained staff” or “advice and support” is insulting and inappropriate. My mental health is “wobbly” and, as is normal for “a day” I was often triggered, once particularly badly. Do you know what I did? I got up and calmly and quietly left the room, sat in the car until I felt ok, went back in and picked up where I left off. I was triggered again in the afternoon, (even though I’d specifically requested two of the facilitators not do something they were about to do) it was the kind of trigger that provokes a freeze response from me so I just sat there, frozen and quietly distressed for a bit, came back and carried on. Sure, dissociation, DID strives to stay hidden and no, I haven’t gained some sort of mastery over my condition but I am an adult and first and foremost I am responsible for me, for my safety, for my health. Had I been in need of support to make it through the conference I wouldn’t have attended.

Naturally, I tweeted my opinion about the offer of support on the #seeme14 tag it wasn’t my first tweet of the event, my first was alluding to something contained in my hallowed seeme canvas bag which was given to me at registration. I can only describe this as “a worksheet”, it looks like something you’d give to a child, or possibly something one might have in a WRAP (not the kind with houmous and veg) was it possible seeme were trying to get me to WRAP by stealth or was this just further evidence of the patronising, paternalistic tone this event appeared to have taken on? The worksheet was later explained to us I think we collectively ignored that bit.

worksheet front

 

Worksheet Page 2

 

We had a visit from “the minister” Michael Matheson MSP came along, said nothing of great note and was thanked profusely for deeming the event worthy of his attendance. I’ve not seen such cringe inducing gratitude for somebody doing their job for a long time. Was this not a re-launch of the mental health movement in Scotland? Should there not have been cross-party representation? Should there not have been time for questions of those elected to represent us? Did seeme think so lowly of themselves that they couldn’t insist on this or was the assumption that the attendees would be incapable of engaging with that level of debate?

One of the opening speakers for the conference was quite the package, the neat recovered package who had been mentally ill, had felt stigmatised but it was ok as she was better now, fully recovered and back to work. That great marker of validity in society and sadly even the mental health “community”- the ability to carry out paid work. Sure, I was pleased for her, the fewer people who have to drag themselves through life chronically mental the better as far as I’m concerned but everything she said was irrelevant to me and others like me. I was already beginning to feel I was in the wrong place.

Later in the morning we were introduced to Ketso; I was going to provide a link but everything about Ketso, including the introduction at this event is like a sales pitch for Ketso. I’m loath to promote it, I have some hope of having to attend meetings, events and conferences in the future and I’ll stab myself in the eyes if I ever have to see Ketso again. It’s a way to gently facilitate discussion, a way to ensure everybody at the table has a say, it involves writing things on leaves of different colours and sticking them to a felt mat to build a tree- or something. It’s like the shittest Fuzzy-Felts ever. I know some people like this kind of thing, I don’t. I don’t need gently facilitated discussion; I know how to have a useful discussion, round a table with other adults. Again I felt patronised. It didn’t help that the sections of the Ketso session were demarked by a facilitator ringing a bell. Pavlov’s facilitator was lucky she wasn’t eating that fucking bell after the first few rings. The first discussion group I was assigned to unanimously agreed that Ketso, being as it was so heavily prescriptive actually curtailed discussion. I shared our collective view on twitter, I was patronised in return, I was beginning to feel like I was on a different planet.

Lunch followed the morning session, as a whole the event was so “tight” and so heavily structured/constrained it allowed very little time for more natural mingling so any opportunity to speak to other attendees outwith the “classroom” was welcome.

The afternoon began with another Ketso session; I was assigned to a different group this time. The subject being “discussed” was “changing stigmatising and discriminatory behaviour” and so elicited ground-breaking responses such as “we should talk about mental health”“work-places should have mental health policies in place” and “children should learn about mental health” eventually I lost it. I lost it in a passionate yet articulate way, as I do. I wanted us, “us” being individuals, us being the wider mental health community both mental and professional to stop having the same conversations, to move the movement on. I’ve always been wiling to and always have spoken about mental health, openly. I’m not ashamed of being mental, there are many like me but as I’ve said before- nobody wants to listen to us. We’re noisy, we’re dirty, we say the wrong things, we don’t recover, we don’t take hot baths as therapy, we eat lunch and don’t label it “self-care”. We live with mental illness. There was a stunned silence from the rest of my assigned group, a facilitator stepped in to give me the “big ships move slowly speech” I tweeted my feelings and began to wish I was on a different planet.

I checked into my room after the afternoon session, I was cheered to see it was DID friendly and had 3 beds…….I had a little cry, I was tired, it had been a long day but more than anything I was just plain old upset at what I had seen and heard.

We picked ourselves up and went for dinner; we were allowed to choose who we sat with for the first time that day which felt like a privilege by that point. Dinner was good, proper conversation was good; an end to the frustrating pap of the day was the best. A theatre company were due to perform after dinner, having taken one look at the programme I knew that it was likely to be one giant trigger so I decided in advance to skip it. Feedback the next day from those who had stayed was that it was indeed one giant trigger so I made the right decision, which being as I’m an adult and pretty selves-aware is no surprise. We shunned the theatre company in favour of the bar where we sat with a much loved friend and lamented what we had seen and been part of during the day.

We had some interesting conversations in the evening, met a few people, had a few chats, and shared our views on seeme14. During the evening it was made clear to me that my negative views, expressed on twitter had not been too well received, was it possible I could say something positive? Yes, had there been anything positive to say then I’d have said it. It was soon clear to me there was no room for dissent at seeme14. The mental health movement in Scotland, now and in the future doesn’t want activists, it wants followers.

Day two of the conference began traditionally- with a hangover. It’s not day two of a conference without one and that’s why the first time I met Margaret Curran I was crying and shaking whilst trying to type up a speech. Even then I was good at multi-tasking and crap at hangovers, she assured me that some of her best work was done in a similar state. I’ve taken my eye off the party political ball a bit to save what’s left of my sanity but I’m guessing Margaret could do with a few more hangovers.

Day two also began with a pile of doubt. I’d been told-off for the things I was saying, I’d been asked to change or at least keep quiet (all off the record obviously) I couldn’t decide if I was doing everything right or something very wrong. For the first time ever, even though I’ve been [officially] mental since 2009 I felt “disabled”. I hesitated for hours (I woke, as is usual just after 4am) and eventually hinted at my conflict to friends who were overwhelmingly supportive and encouraging. These were people I knew, who knew me, these were people whose opinions I trusted and these people were saying “carry on as you are”. I also got messages of support from other attendees, not publicly of course but their point was the same: I should carry on as I was so eventually I did.

I dragged our hungover body down to breakfast and then into the conference hall. Fortunately my much loved friend is like a walking pharmacy so was able to furnish me with painkillers for my headache, the group we sat with after breakfast contained people we’d met the night before and they very kindly kept my water glass topped-up. There was a summary of the day before, it included an overview of the reaction on social media (which was sparse) it was overwhelmingly, 100% positive, even though I had been one of the most prolific tweeters there, I hadn’t been seen.  The hangover lingered, I did not. More Ketso sessions were scheduled for the morning, so we decided we’d had enough of being patronised and hearing the same things and left to lounge in the hotel lobby until the workshops began.

In the heat of the moment during the previous day, when I’d gone to sign up for a workshop only to find them all full, I offered to facilitate one. I was thinking on my feet but chose the topic “The Damage Done By The Recovery Movement” a subject about which I am passionate and knowledgeable but which I’d liked to have time to think about. I had no idea there were going to be “pop-up” workshops but I don’t think seeme did either. I’ve done this kind of thing before with ease and though it’s been some time I was confident enough I could do it again. I managed to find some coffee before the workshop, my head still hurt so I asked my pharmacy-friend for another painkiller, it had registered with me that the painkillers in question were Tramadol which I’d never taken before but my head still hurt and I had a workshop to run. To my surprise 11 people had signed up for my controversial workshop and at some point during the morning a director of one of “the orgs” had asked if he could attend too, in spite of my rampant hatred for everything he represented I was keen for him to come along. The workshop went well, there were a lot of excellent contributions from lots of different “angles” (mentals, voluntary orgs, NHS) a really good picture of the problem and what seeme could do in the future to address it, began to come together. The feedback from the workshop was good and people thanked me in person and on twitter for the opportunity to speak about that pernicious beast “recovery” and all it entailed.

stig

The workshop also provided the perfect working model of DID, as an individual ANP I suffer from emetophobia, nothing scares me like vomming, the threat of vomming, someone else vomming, anything that might make me vom, you get the picture. About half an hour into the workshop that Tramadol had well and truly kicked-in, I felt dreadful, I’m grateful that opiate induced vomming comes on suddenly and with very little warning. Dissociation allowed me to ignore the fact I was off my tits on Tramadol (never take drugs prescribed for anybody else, kids) and when the vomming started we were able to switch so that our two exits from the workshop to vom went largely unnoticed and someone less inclined to be histrionic about vomming could get the job done. We were able to leave, vom, return and pick up where we left off. There were doubtless a few “continuity errors” during the workshop but all in all it was a job well done and finally, after a day and a half I finally felt like I’d been seen.

It seemed all I had to do to counter my desperate sadness about the state of the recovery movement, the reaction of the orgs and the complete lack of understanding afforded to people like me was:

Do something myself

I’ve long though that going it “alone” with the [number I will never reveal] others who share my life/mind/body was the best option, seeme14 confirmed this for me. I hope that I can work with seeme and others now and in the future, but not in the way they tried to get me to work with them at this event. I am passionate about ending stigma and discrimination, I’m passionate about mental health, politics and people. I’m confident, articulate and knowledgeable, I glibly accept drugs from people I’ve only met in person three times, yes but I don’t want or need more of the same rhetoric on mental health, neither does Scotland now or in the future. I hate to use a slogan that thanks to one of the orgs has become utterly meaningless but perhaps I can give it back some meaning and say: It’s time to change.

DID Not

It’s two years ago exactly since we were diagnosed with DID, two years exactly sincethis post was published (though not written, such was our confidence that the most screamingly obvious case of DID in the world was finally going to be rubber-stamped). Just over two years from when we entered “the system” somebody finally had the experience and courage to say exactly what the psychiatric enigma sitting in front of him looked like.

The long and winding road to the correct diagnosis is well documented, many of you joined us on the way, many of you helped and many of you are still around. So therefore many of you will know that in those two years our miserable little life has improved immeasurably and we’re well on the road to recovery…..

Lol jk

A diagnosis of DID, whilst no doubt a useful tool in terms understanding yourself and in terms of seeking the correct treatment is a life sentence. The diagnosis itself tells you more about your past, present and future than any other psychiatric diagnosis.

It seems during our time away from the madosphere; away from this blog where through our storytelling, diagrams and pictures we try to explain a little of what DID is there’s been an explosion of information about what DID is not. To be fair there’s very little if any of this kind of “information” on WordPress blogs, for the most part it’s confined to tumblr. I’m not suggesting for one minute that WordPress users and bloggers are more knowledgeable than those who choose to participate in online discussion using a platform that’s best known for its content of emo quotes, pornography and troubled adolescents- merely stating a fact. It came to our attention that some tumblr content had leaked into the mainstream, [gutter] press recently and it was as horrific as we had imagined.

The world at large knows very little about DID, the mental health “profession” knows very little about DID but this isn’t because very little is known about DID. There are some fundamental truths to the pathology of DID, just as there are for other mental illnesses, DID is first and foremost a mental illness in spite of what information you see elsewhere may suggest.

DID is a disorder that results from childhood trauma, severe, repeated childhood trauma. There are different kinds of trauma and yes, trauma is subjective but it takes a lot of trauma to cause a child’s mind to fragment. We do ourselves a disservice in using the word ‘trauma’ as what we’re talking about is abuse, nobody ever had DID because they fell off their bike and scraped their knee. Severe childhood abuse, be it sexual, physical, psychological or all three is the only cause of DID. Repeated acts of severe abuse are the only cause of DID. Severe, repeated acts of abuse that begin in very early childhood are the only cause of DID.

Attachment is also central in the development of DID, an abused child who also lacks secure attachments with parents or caregivers is more likely to need dissociation as a defence when faced with the intolerable. During childhood, dissociation and fragmentation serve to protect the child, to ensure the child can continue to survivein what are horrific circumstances. This is where the wankiest of all the wanky platitudes comes from

 “DID is a creative survival mechanism”

Fuck off. No child should have to “survive” and I’m pretty sure that in the process of surviving no child ever thought “what can I create?” DID is a mental illness, a disorder and it’s time to stop dressing that up.

The foundations of DID are unpleasant, unhelpful and not conducive to a normal, healthy, happy life and they’re most certainly not fun. So why is there a section of the [online] DID community who make it look and sound like fun? There are pages and pages of “alter selfies”; individual profiles for parts, there are YouTube videos of all the “interesting” differences between parts. The recent press coverage showed a DID sufferer dressed up as all her individual parts- complete with wigs and accessories. There are people with DID who claim their parts have interesting, elaborate lives and careers which aren’t rooted in reality. This isn’t DID, at least it’s not the DID I have, we have and other people we know have. This kind of misinformation damages us all, it makes DID look like a lifestyle choice, a fun and functional alternate way of being, it’s not.

The DID I have is disabling. I’m not talking about the oh-so fascinating fact that individual parts can have different illnesses, in common with a lot of multiples we’re a walking, talking DSM as an individual person. It’s not fascinating though, it’s “just” DID, all those comorbities and all those symptoms we suffer every day come under the DID umbrella, which is the shittest umbrella ever by the way.

The DID I have is confusing. Not because I can’t decide which band is my favourite or what I want to wear but because I miss hours, days, weeks and years of my own life. I don’t know how I’m going to feel, how I’m going to react and how I’m going to be. Often the days, weeks, months and years when I’m not physically present in our own life are the easiest. That some of us have come back to husbands, babies, new jobs and new homes is something we’ve been forced to take in our stride.

There are differences between parts in DID systems but it’s rarely as shallow as different outfit choices or different hair, vegetarian or not, male or female, borderline alcoholic or tee-totaller. Preferences like this, for us are rooted in trauma. I always wear my hair down- because having it tied-up is triggering, I’m not saying I don’t like it up or I don’t look like me with it up, what I’m saying is that if I’m present in the body and our hair is up I’m liable to have a flashback. It’s good to know this as flashbacks are best avoided, I’m grateful that some can be as I’ve had countless flashbacks and am yet to have the same one twice.

Flashbacks are one of the many troubling symptoms of DID, they’re bits of trauma memories that are released when the emotional parts or EPs within a DID system are triggered. Contrary to what you may see elsewhere EPs, child-parts or “littles” (cringe) are not there to play with crayons, watch cartoons, collect soft-toys and generally be cute and endearing. EPs in a DID system are the parts who experienced the traumas and hold the trauma memories, those parts can tell you a disturbing amount about your past and when triggered, often do. EPs are created by the mind as the trauma is experienced, if you have a 3 year old part then you experienced trauma at that age, if you have infant parts then you experienced trauma as an infant, I love all our EPs because they’re parts of us, I love them because nobody really bothered to first time around but there’s nothing “cute” about EPs. The number of EPs I see paraded on the internet is disturbing, YouTube videos, tumblr posts and blog posts featuring EPs and more worryingly- naming them, leaves entire systems, entire people very vulnerable. This kind of publicity also makes us all look ridiculous, it does nothing to persuade those who choose not to believe in the diagnosis (Dissociative Identity Disorder, (DID) 300.14 DSM V; Multiple Personality Disorder F44.81 ICD10) that DID is a very real illness that people need help with.

It took us two years to get the correct diagnosis, just over two years to get the correct treatment and the biggest factors in that delay were:

Scepticism about the validity of DID as a diagnosis

and

You can’t tell by looking (and you can’t, even for somebody as “florid” as us, semantics again, “severe” is more apt. Sure we have nuances in how we dress, act and speak but most days we come off as “eccentric” at worst)

The kind of “information” I’ve talked about here does nothing to help with that, those who put it out there claim to be doing so in the name of “awareness raising” but I question just what they’re raising awareness about. None of them speak for us, (not in any of the accents they have without a history of living in the places those accents originate from) none of them will change the current view of DID from within the mental health “profession” or elsewhere, none of them know enough about DID as a disorder, as a severe and enduring mental illness to do anything of use for the survivor community.

I’ve been hiding; I’ve been doing your common or garden, much loved, hiding in bed™, a symptom familiar to mentals of all varieties [thanks to those of you who’ve joined me in bed through the magic of the internet this past while]. Hiding in bed™ is not all bad, indeed it got us through some of the worst times back in the dark[er] days pre-diagnosis and the hard-won “right help” when we didn’t quite know what was going on and the mental health “professionals” surrounding us pretended they didn’t either.

I should imagine hiding is something I’ve done a lot of, possibly not often enough or well enough as it’s clear I was often found, my childhood must’ve been like the worst game of hide and seek ever. I’m something of a hiding expert, I unwittingly hid my multiplicity for a long time, then I hid our multiplicity for a long time. Those with whom I share a life/mind/body would also attest to my propensity for hiding important paperwork, food and shoes amongst other things. I have no idea why I hide food or shoes; I never have any recollection of doing so (we live in a home full of surprises!) I hide paperwork because most of it’s terrifying, confusing and comes in brown envelopes but the food and shoes hiding are far less clear-cut.

I have good reasons for hiding, many of them, too many. The world is a triggering place, filled with triggering things and triggering people so a lot of the time I hide because I’m mental, somewhat easily triggered and would rather hide my less than normal reactions. On a good day I can go out, do what I need to do and avoid overt public displays of mentalism but the good days are few and far between and the bad days resonate to the extent they prevent the potentially good days even being considered as an option. Classic avoidance, leads to a rather boring and unfulfilling life but spares me the humiliation of crying in Tesco and nobody wants to cry in Tesco. I don’t even go to Tesco; I despise supermarkets I’d cry for sure if I went to Tesco, even if I wasn’t triggered. One of the upsides of sharing my life/mind/body with [number I will never reveal] others is that I need never go to Tesco.

I hide from my past, obviously I have dissociation to help me hide from the more troubling aspects of my past [and right now, in this sentence I’m grateful for that, I reserve the right to slate dissociation in any future sentences] because that’s the way DID works. It’s not “wilful hiding” (in spite of what one particular recently met, horrendous mental health “professional” may think) it’s that “wonderful creative survival mechanism” that’s both saved and blighted my life. Specifically I have to hide from people from my past, admittedly not all of them but a fair few of them. This is sensible, it’s safe and it prevents us from coming to further harm.

I took hiding to an extreme, I stopped speaking to people, even safe people, even people I loved and missed. This doesn’t come from a place of paranoia, of assuming everyone is out to get me, it came from a place I haven’t yet been able to identify or I have but it’s to do with shame or worthlessness or similar and I don’t want to go there. I’m not ashamed of having DID, I’m not ashamed of being a “trauma survivor” (though we’d argue that you can’t technically be a survivor until you’re dead), I’m not ashamed of being mental so in the absence of wanting to go there I can’t explain that any further.

Those of you paying attention will also noticed we collectively hid in that we stopped blogging, some of you even voted for us in the TWIM/Mental Nurse/Whatever The Fuck It’s Called Now annual awards. In what we suspect was clear breach of, or at least an overlooking of the rules, we were awarded “Most Sadly Missed” blog- for the second year in a row. Thanks for missing us- twice. We’ve discussed the decision to stop blogging here before and we’ve discussed it many, many times amongst ourselves. Ostensibly One Of The Best Blogs On The Internet is an anonymous blog but it has a history, a name and face attached to it. There are obvious risks in blogging again publicly, most of them we’re far better equipped to handle these days as knowledge of our hidden past has come to light but I/we have to consider the risk that comes from us “being here”. I don’t mean here, right here at this URL as contrary to popular belief we don’t actually live in the internet, I mean being here, being unafraid to be here.

People like us accept that life will involve a fair bit of hiding, of silence but life had become all about hiding and silence. Life has in fact become a word we tend to use surrounded by heavy, sarcastic quotation marks as most days we’re existing at best. Those of you who know us will know that we’re not naturally inclined to silence and indeed we have a lot to say. Life so far has given us lemons, putrid, malformed, disgusting lemons and to-date we been forced to make eye-drops. We want to make lemonade. Our life will always be on the wrong side of difficult, to be honest even our lemonade will be flat, not sweet enough and all claggy with putrid lemon debris but we have some opportunities to do some of the things we want to do, to have a chance at that thing people call “life”.  Blogging again is part of that.

We’re still hiding what we need to hide, for the right reasons but there’s both a comfort and safety in choosing to hide in plain sight.

Do you remember this post?

A Story About A Broken Leg I DIDn’t Have

That post was written just over a year ago our diagnoseversary has been and gone and none of you bastards sent cards, flowers, toys, colouring pencils, mugs, tea-bags, Zopiclone, paper plates, glitter, stationery, insecticide, custom-made jewellery, hand-knitted unicorns…….(to name but a few of the gifts we’ve received during our time in the Madosphere). How could you all forget….?

I’m sure none of you forgot; even in the absence of blog posts and a running commentary on Twitter I know that you’re all still there- the mentalists, the politicos, the journos, the professionals, the mummies (as in have children, not Egyptian and swathed in bandages), the funny “in-betweens” I can’t quite define and the ex-colleagues who read but are too afraid to draw attention to themselves by interacting. We missed you all, admittedly some more than others (borderlines you may start panicking now) we’ve missed our little window on the world.  Last night I opened that window again, I question my wisdom here and indeed this morning there have been a few internal arguments over it, some valid, some less so. I’m triggered by almost everything so reading, writing and interacting is difficult hence the bit about comments in the sidebar ———>

What happened? Where did we go? We clearly didn’t die as “the last blog post ever” stored in the drafts folder hasn’t been published (all Madosphere bloggers have the post-suicide blog post ready to go right?) did we stop being mental or political or a parent?

No.

I and [number I will never reveal] parts who share my life, mind and body are very much alive and furthermore we intend to stay that way. This doesn’t mean that the blog will be void of “this is shit, I wish I was dead” posts and indeed it doesn’t mean that life isn’t shit and we don’t often very occasionally wish we were dead it just means we are here, still mental, still political, still a parent and still the author of one of the best blogs on the internet. The decision to go silent (externally) was in part enforced by mentalism and in part a choice we made to increase our safety. There’s nothing safe about isolation.

That broken leg I talked about turned out to be two broken legs, two broken arms, several broken ribs and a very broken brain. As I or someone who looks a bit like me said in that post- “you know if you have a broken leg” and indeed it came as no surprise to learn of all the other breakages either, I was just glad we’d managed to hide them until it was safe for all those fractures to be revealed. Broken legs happen- people fall and legs sometimes break, broken legs are accidental, a nasty side effect of a bad fall if you will. Multiple fractures don’t happen by accident, all of the literature suggests there’s something purposeful about multiple fractures, experts agree that it takes a lot of time, effort and organisation to cause multiple fractures in a child. Those fractures will never heal, survivors like us will simply limp along forever popping painkillers and hoping for moments of peace and freedom from the pain. Multiples are notorious for their chronically low expectations and indeed we often have them met, nay exceeded (by lying MH ‘professionals’ for example…) but for now it’s enough just to be here. We’re more mental than ever but the upside of DID is that you still can’t tell by looking……if you discount my current attire of pyjamas and the unflattering jumper mk2.

It’s been a long time since the blog was updated, much has changed but much has stayed the same, upcoming posts will hopefully include-

The one about the Ombudsman not upholding the complaint against NHS Fife because DID isn’t included in the ICD 10 and therefore doesn’t exist though “Multiple Personality Disorder” does… [review pending]

The one about moving house and being so dissociative most of us didn’t notice.

The one about the annual ATOS form related breakdown.

It’s good to be back.

It’s often said here that one of the benefits of DID is that one has somewhere to hide; the rich internal world we have created has helped me conceal myself for some time. I popped out to blog about the new mental health strategy and then went back. I concealed myself in my own personal part of our internal world where I sat, resolutely alone and miserable. My thoughts were often circular; I would find myself stuck in a loop of grieving for everything that I had lost and all those things I once thought my future held that I no longer believe are there. There’s a tendency for others to “big me up”, to assure me that all those things are still there to remind me I haven’t lost any of my skills. I haven’t, it’s true but I am one part of [number I will never reveal] this isn’t just about me and my skills anymore.

I initially concealed myself and my misery as I couldn’t cope, I’m not a particularly emotional person, I’m not a psychopath just a bit buttoned-up, my buttons didn’t just pop open, they flew off. The more I learned about DID and our own system the worse I felt and as news reached me of recent developments I felt even worse. I didn’t feel worse as recent developments were a clear sign that my future was going to be nowhere near what I and others had imagined, I felt worse as everything I saw around me was about me.

Unlike many other adult parts of our system, I was that child and I remember being that child. I remember being on the pupil council in primary 6, I remember taking part in a mock election in primary 7- it was 1986 the kid who won had SNP connections and lots of stickers, me and my rational political insights didn’t stand a chance- even then the Scottish electorate confounded me. As I recall that child was hit by a car later that year and suffered a broken leg, I’m sure there’s a lesson there somewhere. I remember modern studies classes, I remember being “This house would rather be a teenager than a pensioner” in the Press and Journal schools debating competition (there’s a theme here in case you hadn’t noticed) and I remember sitting in a higher history exam in 1993 with absolutely no recollection or ever having studied history in my life. I failed that exam.

My skills have developed as I aged and I became adept at fighting for others, I embarked on righteous campaigns against whoever I had to in order to get the things people needed. These skills became invaluable when I launched the bloody, protracted battle against NHS Fife for the correct diagnosis care and treatment. I won that fight and I thought, until now that it was the most important fight of my life.

As my understanding of DID has grown and my knowledge of our system increased I faced the grim realisation that my skills were 37 years too late, there was no campaign I could embark upon now that would erase the trauma that got me, got us to where we are now. I concealed myself again.

As has been mentioned in previous posts due to recent events we suffered a complete communication breakdown. In the past I was able to do the necessary reorganising to re-establish communication and ensure smooth running but I couldn’t do it this time. Fortunately someone else could and they did. I was persuaded to come out of hiding and have an eyebrow wax, it was long overdue and the complaints about the eyebrow situation were coming in as thick and fast as the eyebrows themselves. I cried a lot that day- not least as I’d had my eyebrows ripped out and after such a long time it really hurt. I cried for myself and for the others who share my life/mind/body. I cried for that child, that child I was, that child we all were. I still can’t say the phrase the therapist wants to hear “they are all partsof me” but I can say

They are all parts with me

Having all those parts with me has enabled me to make it this far, it’s nowhere compared to where I thought I’d be but I am still here. I am still here in spite of what must have been an exceptionally traumatic past, having parts, having DID has helped me. I’m not proud of having DID but I’m not ashamed and I am bloody proud to have survived my past.

I have been assured throughout our journey that one day I will be able to realise some of my ambitions, albeit in a slightly modified way. I took comfort from this and clung to it. I have also been told by the  therapist that many people with DID can have fulfilling lives in some of the top professions, I clung to this too. As such I questioned my openness about my mental health, I questioned the honesty on the blog- both from myself and others who share my life/mind/body. I am burdened by the knowledge that DID can be difficult to understand, weird even scary. Those with DID who are successful professionally are able to do so as they conceal their multiplicity, I make no judgements about this, each to their own. But I’ve been concealed and concealed myself for too long.

I have never allowed anything to beat me, I have never been shy in speaking-up and I have never not challenged injustice where I saw it. I am the product of what happened to me, my tireless fight to right wrongs is so obviously driven by a childhood where I felt unheard and unrepresented- I was a child, I was that child. I couldn’t help myself then but I can help myselves now, I’m not hiding any more. I can’t go back in time and stop what happened to me, to us and I can’t stop it happening to any other child other than our own and I can continue to tell my part of part of the story.

Some of you reading this have met me, some of you have sat in meetings chaired by me, some of you have worked with me, some of you have printed my press-releases. I’m no scarier now than I was then (and for the record I prefer the word ‘formidable’ to scary) I am still here but as I said I am just one of [number I will never reveal]. I’m not going anywhere, not least as I suspect parts like me are impossible to integrate (though there are a couple with whom I’d make a nice ‘blend’) but I also have no desire to dominate, we may all be parts of the same thing but we are all different and we all have something to offer. Some of you who knew me before have happily chatted here and on twitter to someone who isn’t me for some time. I’m glad some of you stuck around and I’m sorry that part you are more familiar with now is no longer able to communicate but I see she has trained you well. She also moderated blog comments well and as yet we’ve yet to find a replacement so please bear with us.

So after all that powerful ‘fighting talk’  some of you may be in doubt as to whether the artists formerly known as Zoë Smith were somehow no longer mental, let me tell you about the rest of Tuesday 11th September 2012.

Communication is really good, the system is running smoothly. Today brought the challenge of taking the 15 year-old to the orthodontist. This is a challenge for many reasons and there are a vast number of triggers involved. Among my many jobs I am “The only ANP who can take the children to the dentist” (I’m thinking of putting that on my CV), so I did. The visit to the orthodontist was uneventful, my biggest problem was keeping a straight face as I sat, apparently normal and another part expressed a desire to scrutinise the orthodontist, we switched seamlessly and switched back again- we were on fire. When we were finished another part popped into Asda for new school shirts for the 7 year-old (to replace the ones ‘lost’ after a visit to his father) and I drove home. The 15 year-old has a sinus infection and had to see the doctor, it’s someone else’s job to take the children to the doctor- again we switched seamlessly and all necessary information was transferred between parts.

It’s Tuesday, AKA “Tesco day” in this house, the doctors surgery is opposite the local branch of Morrisons so in my infinite wisdom I decided after the 15 year-olds appointment to do the shopping there instead of making the 20 mile round trip to Tesco.

It’s not my job to do grocery shopping, I haven’t been in a supermarket for months and I had forgotten the first rule of multiplicity-

We don’t do change*

*if you discount the obvious.

There followed a confusing, chaotic trip to Morrisons with completely uncontrolled switching, communication was reduced to random shouts of “Shit! That woman knows [redacted] from playgroup, don’t make eye-contact” and “why is that turkey round? Turkey’s aren’t cylindrical”  and repeated cries of “THIS WOULDN’T HAVE HAPPENED IF WE’D GONE TO TESCO” The shopping trip is largely a blur for me, reduced to nothing more than 8 bags of shopping I’m too afraid to unpack as I don’t know what’s in them but I know enough to know that the contents will scream

MULTIPLE!

I also know that someone else will have to go to Tesco tomorrow to get all the things that we didn’t get today. I’m glad we have a sense of humour.

So after a hiatus filled with misery I’m back- I never really went away. I haven’t lost any of my skills but my skills are needed now for our continued survival. With DID every minute of every day brings a new fight and each of them is  important.

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