Coming out cured

During periods of high writing, I find it interesting to look at my blog stats. Each blogjune I get to see which of my posts are read – what worked and what didn’t. I also get to see what people go back for a closer look at.

Go back they do. Featured on the list of posts of interest to people in 2015 is one from blogjune 2011, “Coming Out Mental.”

The two thousands were awful for me. At the start of the decade I was working half time, studying full time, and living an impossibly busy life. Problems from my upbringing were imploding for me, I was in a relationship with a good person who wasn’t right for me (although I was a long way off realising that) and then my grandfather – my personal hero – died. I coped for a while longer, wrestling pneumonia before my physical and mental health finally failed.

I spent a couple of months unable to function and then a decade rebuilding my understanding of myself. In 2011 I was still managing some symptoms mainly around anxiety but was in a vastly healthier place. I knew of a large number of other people in our industry who suffered and were silent, so I used my profile within the New Zealand library community to promote self-acceptance as a path of greater mental wellbeing.

2012 was time for a radical step. The damage from my past had been healed but I had grown to see anxiety as a reflex I could no longer let dominate my life. I’d been introduced to mindfulness and toyed with it as a stopgap solution. I decided to commit to it. With that in mind, I developed a practice of working towards constant mindfulness. Not just sitting in a quiet room. Not just going for a solitary walk. Every moment of every day, I worked to be in a state of connectedness with myself and the world around me. I did so in meetings, driving through traffic, when feeling under the weather.

It wasn’t easy. A vast part of the first four months were agony. I felt constantly raw, but I made myself stay present with that feeling. Then, four months in, I felt relaxed for five minutes. It was bliss. I was unused to it, and my body tensed up again but I knew I could get back there. I now don’t know what it feels like to carry the level of tension I used to as a matter of course.

“Cured” is a big word. There is still, and always will be, parts of myself that need working on. One might ask, how can I know I’m ok? How can I confidently say I won’t meet something that will put me back in the box? I’ve two answers to that.

Firstly, the last two years of my life have been easily among the most stressful. Using the Holmes and Rae stress scale, which ranks cumulative effects of stressors, I suffered 492 points of stress in the 2012-13 financial year, 388 in 2014-2015 and 338 in 2014-2015. A score of 300+ is at risk of illness. If I was going to fall over, I would have, but I haven’t. I’m not loving the hard parts, but I’m loving life.

So yes, if you’re suffering from mental illness, please read my archive. I haven’t talked about it exclusively as it’s only one part of the person I am and have been, but there’s plenty there. Feel free to reach out to me. In fact, find every source of good help and support you can. Just remember, your journey is always to greater wellness. My way worked for me, yours may be different, but there are always things you can do to make things better for you.

Let it go – mutually supportive partnerships: #blogjune 13

My other half dropped a pretty significant post yesterday.

I dropped a similarly significant post at the culmination of #blogjune 2011. In the years following, I invested considerable time and effort into my wellbeing. Lessons learnt in my own journey have allowed me to feel comfortable supporting Fi as she’s learnt how to better manage her anxiety during her pregnancy.

From my point of view, she’s performed admirably. She’s handled continual discomfort and pain of increasing intensity excellently. Whereas this would normally be a barrier to good mental self-care, she’s taken it as a challenge to be surmounted. Suffice to say, I’ve felt very proud of her diligence in applying lessons in managing anxiety.

Over the last week or so we’d been experiencing the benefits of two new medications – one to manage heartburn/reflux and one to manage high blood pressure. Fi’s symptoms on both fronts rapidly improved. A scary night’s stay in the hospital was followed by a relatively clean bill of health and a management plan. We had been a little worried about possible side-effects from the blood pressure medication, less so about Maxolon, the anti-nausea drug.

On Friday night I came home to a partner who was upset. That’s not unusual in late pregnancy. We usually find some together time helps. What was unusual was the night was a revolving door of worries one thing literally followed another – and then topics already talked through came up. It was clear to me Fi was in a bad way. She felt it was a result of her medication, which I agreed was likely, but we didn’t feel it was worse than the symptoms she had been experiencing.

The next day, Fi had her regular appointment to chat about her anxiety. The repeating panic attacks showed up again, to the degree where I was needed to transport her to the hospital for an investigation of the possibility of an immediate delivery on the basis that an early birth to a mother who could cope was better than an on-time one to a mother who was deeply unwell.

It turns out, disorientation and drowsiness are two very different things. Fi’s heartburn medication warned of the former, not the latter. A heightened need for sleep is a Godsend to a woman in late pregnancy. Having your head mucked with? Not so much. We were advised to immediately cease the heartburn medication, and given an alternate regime to follow.

Things are fine. Things are wonderful. While I stayed home today to monitor Fi’s wellbeing in the event a change in medication had an even more adverse effect, she has in fact blossomed. Thirty-six hours from the last dose and she’s herself again.

Me? I’m a wreck. I feel that I should have picked it and known how to help. So I’m here to call bull on myself. I couldn’t have known, but what I do know is that when the situation was made clear by appropriate medical staff, I offered Fi the best support I knew how to give. I was an advocate for her during her examination, and asked questions I’m sure the medical staff weren’t bothered with.

I remember a conversation we had in the middle of things. It had become clear that an immediate delivery wasn’t going to take place. This put Fi into extreme panic. I was able to reach out to her and tell her that whatever distress she found herself experiencing, I’d been there too, and I wasn’t afraid.

Today we have supported each other very nicely. I’ve had my own high-anxiety day – a post-emergency crash, if you like.,Fi’s been wonderful to me.

I’m not perfect. I couldn’t tell the difference between just-a-bad-day and we-need-to-act-and fast. But we got through it together. Tomorrow is, as they say, another day.

Helping 101: Find the person, don’t talk to the symptom

In my last post, I offered what I felt was constructive criticism to a wonderful event I had attended the previous week, Nethui. My thoughts generated some discussion, which was a good thing. I participated in the discussion  on twitter during the day, and went out for a wonderful evening reliving the conference with colleagues in the library community.

That night I checked my email, twitter, facebook, the usual. My usual pattern is to be social for a bit, then play videogames as a way to wind down for sleep. In between those two acts, I decided to quickly check for comments. I don’t post often, so the thought there might be something to respond to was exciting.

Shortly thereafter I had to talk myself out of posting a somewhat scathing comment and found myself instead writing an email to the President of InternetNZ. The email itself was respectful, but I had also appended my comment to illustrate the impact the situation had had on me.

I was worried about the possible damage done to my reputation and possible employment consequences, given I was not attending the event to represent the mental health community.

Who’s to blame?

Not the commenter. I’m saying that right up front. I know we have a finger-pointing culture in New Zealand, but I’m not a part of it. The commenter made a well-considered response. They missed the point, sure, and I’ll describe how they did below, but it wasn’t because they intentionally disrespected me, or other people with my disability.

Not me, either. My initial reaction could have certainly been damaging to myself, and possibly to others. I didn’t have full control over myself, however I was able to address matters so my reactions didn’t harm others, and over the next 24 hours continued to manage the situation to a positive outcome for all parties. In the perspective of my life’s history, this is a positive result of a lot of work. While I don’t wish to have crises of any sort  and they feature less and less frequently in my life, I’m glad to know how quickly my faculties return. I used to spend months out of step with reality after upsets. A couple of hours is frankly a wonderful sign.

What set me off?

Three things, really.

The first is personal to me. The commenter gave considered and kind advice as to how I can seek help and support in a conference setting. What they weren’t to know is that I have attended, presented workshops, delivered keynote addresses and all-round networked at a number of conferences over the course of my career, and that I had been negotiating my personal disability while doing so quite successfully. I have been exploring advocacy issues around disability and access for a number of years (starting perhaps with my contribution to this excellent book) and felt proud that I had given my own feedback in clear terms that were recognised as worthwhile by trusted others working in access. Realising that someone had seen my well-reasoned thoughts and interpreted them as a plea for help left me feeling humiliated.

The second was organisational. The commenter was Lance Wiggs. A little research let me know that he was one of the councillors of InternetNZ. As my post was commenting on an InternetNZ event, it needed to be clarified whether he was responding as some internet guy (in which case his error was a little upsetting but minor, understandable and forgivable) or on behalf of the organisation (in which case some research really should have been done first). Yes, I really do care about things like this. Good organisational practise is one strong plank on which progress can be built. I’d just joined the organisation and I was frustrated that I felt a duty to give feedback to the council over something that should have been standard operating procedure.

The third factor was the preconditions.

What were the preconditions?

Everything. My abuse history. Organisational change. Dealing that afternoon with a truck driver arriving with a 300kg piece of equipment and no means of getting it off his truck, let alone to its destination inside my workplace and one floor up. The fact that the post itself was based on a careful analysis of my upset over comments made at the conference. The fact that upset happened not because I mind every word people say, but because I find it harder to let go what is said when I am also dealing with the extreme stress of being in such a densely-packed, stimulating environment for three days on end. Having a life where the most clearly written roadmap says “take your pills and keep your head down”.

What could have done differently?

It would have been easiest for Lance not to have bothered. He didn’t create the preconditions. He didn’t need some guy going off at him. This is the sad thing about mental health. When things go wrong, trying to help can cause a seemingly inexplicable reaction.

I suspect Lance would bother anyway. We’ve had a bit of offline talk, and it’s clear to me he really wished to offer support, and took quality time to consider how.

There are no clear answers here, as I’m still exploring ways to think about it. I’m used to pretending I don’t have my disability (or rather that is somehow is present but simultaneously doesn’t affect me) because I get sick of finding out the people who stop talking to me, or start talking to me like I’m dangerous, a child, or an idiot as a result. I find Philip Patston‘s article provides some useful thoughts.

As with other disabilities, the help I require is different from the help required by another person, even one with the same label. There’s no universal design for sufferers of PTSD. There’s no act of inclusivity a person suffering from depression can’t find a way to isolate themselves from.

What do I want? I want my thoughts to be heard first and foremost, and for people to be blind to my illness in the same way as they wouldn’t stare at someone’s wheelchair. It doesn’t mean we can’t be honest about it, but it does mean if you wish to talk about it you should find out where I’m at first. Perhaps the best thing to do is listen if I feel like talking, and let me ask if I feel I need advice of any sort. If you think I have triggered and are concerned, wait for me to collect myself and ask me what happened. If I feel comfortable around you I’ll let you know it’s ok, or what went on. If I’m not, it’s most likely not about you unless you’re a particularly terrible person – some of my best friends are simply awful.

What about InternetNZ/Nethui?

I guess one thing I’d ask is to be a bit more active in shouldertapping relevant members of the mental health community. I’d particularly like to see patient advocates (who are often former patients themselves) involved – practitioners often take the lead in talking about the experience of mental health in this country, which is a little like battery farmers talking about the experiences of chickens.

Sympathetic and helpful battery farmers, of course.

I’m sitting right here – discussion of mental illness at Nethui

Nethui launched with a bit of brouhaha around a couple of jokes from the MC, lawyer and standup comedian James Elliott. A couple of his opening jokes – designed to loosen things up – were of questionable taste; one naïvely implying that the vast amount pornography on the internet was “pictures of naked women”(1) and the other faux-mistaking Vikram Kumar for a Bollywood film maker of the same name.

I responded to the brouhaha, suggesting that the MC was a distraction and not to let upset over his faux pas get in the way of the real business. I had to clarify that I wasn’t saying “let’s support gendered and racial speech”, and I now feel a need to explain what I was really getting at.

The real discourse happens after the MC stops joking. The real discourse is made by the session conveners, and the participants, particularly those who are viewed as experts.

Here are some snippets of phrases I heard variously from people conducting sessions, and personages of importance contributing:

“People who are mentally ill…”

“People who are mentally ill are…”

“You’ve got to be mentally ill to…”

When someone spoke to demean women, there was an uproar.

When someone made light of race, there was an uproar.

If someone had been foolish enough to make generalisations about the capabilities, limitations, features and characteristics of blind people, wheelchair-using people, deaf people, any kind of differently-abled person, of non-normative sexual and gender selves – there would have been an uproar.

The term “mental illness” came up a number of times in the context of the “trolling” discussion, for example. It seems that anytime someone is behaving antisocially, they must have a mental illness. Now, I’m not here to justify antisocial behaviour – there are some interesting works which explore the social constructions we put around “antisocial”, and the differing constructions we create when we wish to make use of antisocial behaviour for societal ends.

I didn’t make an uproar. Other people I know for a fact manage mental illness as part of their lives didn’t make an uproar. In my case, the “forever angry and unwell” Sean discussed matters with the “healed and well” Sean, and we agreed my (to reunite my two halves, as I must do every day to function(2)) planned outcomes from attending Nethui might be disrupted if I started laying into people who so casually prodded my deepest pain. Why? Because every time I expend emotional energy, I have to factor in the risk that I am misperceiving matters, and that my efforts to address a problem I see will make things worse. That it’s not going to change things anyway.

I want to make an uproar now. I’ve spent the last few days increasingly triggered, and I suspect there’s more to come if I maintain silence.

I’m here to say – you’re tarring a lot of good people with the same brush. That’s right – I’m not blasting anyone. My anger, as always, is my own. I’m going to speak, and hope some people listen. I’ll stick with the troll example.

Some people with mental illness troll.

Some people with mental illness experience frustration, bewilderment and an inability to understand the rules that govern interpersonal connection.

Some people with mental illness express frustration through attention-seeking antisocial behaviours at some times.

Some people with mental illness act to seek attention in online communities. In some ways, longlasting online communities are function as economies of attention, and sometimes some people with mental illness use the wrong strategies. What does that say about the other trolls – who don’t wrestle constantly with demons, who are simply choosing to seek amusement? Much easier to blame the loonies.(3)

We are not some people. We are your family, colleagues, and friends. We grit our teeth while people construct a world in which all of the otherness is laid at our doorsteps. How are we to reach out to you when you dismiss us in a way isn’t allowed for any other group in society? Can’t we come inside the PC circle, at long last? Can’t you see I’ve got a headful of bad wiring, and I’m still a good, caring and compassionate person? I know some sane, or at least stable, people who are real pricks.

Most of us mentals(3) don’t bother speaking up, because it’s too hard.

Most of us feel like we’ve failed before we open our mouths, or put hands to keyboards.

Most of us are trying to connect, however badly. Some are doing so pretty well, thank you.

I’m sitting right here. I’m next to you, wishing to work with you. Don’t say we need to stop talking about access and start talking about inclusion when you’re still leaving me out.

(1) Pornography would be vastly less problematic in some ways were this so.

(2) As Paul Simon said: “From what I can see of the people like me/We get better/But we never get well”.

(3) I will take these words back, and I’ll use it any time you want. Don’t you dare.

State of the Nation Address

OK, so here it is.

Sometimes I am near the world, some times I… wander off a ways. #blogjune pretty much pushed the limit as far as my need for intimate communication goes at the age of then 40 and counting.

That’s, the age. As for the stage; I’m easy with it – a good course of group therapy (DBT, do it if you’re a bit stuffed up eh) and an increasing engagement with meditation may have helped.

That’s not to say I’ve thrived; but I haven’t suffered every single minute, nor have I felt an excessive amount of genuine concern – I say excessive, because being bipolar gives two sets of circumstances to manage against, and two different lenses through wish to interpret.

Better yet – therapy helps us to move from the poles and create a middle. Sometimes it feels less exciting than a good dose of hypomania – more’s the pity. Weaning one’s self of “excitement” is a hard sell, but I’ve learnt to do at least a few things for the pure wonderment, and a few for their pure necessity. Both are good for the soul, and better than all the pizazz in the world.

Not that I’m not still a song and dance man – so to those of you who are sometimes commenters – please nag me to do some rehearsal for my upcoming gig. Then the ball will be in my court. It might be a little bit exciting.