RUOK? Yes and no or, #notblogjune 1

So blogjune went and I didn’t finish. So it goes, poo-tee-weet and any of those many other phrases you fondly remember from Vonnegut all meant to tell us the same thing.

I mostly achieved the therapeutic outcomes I was hoping for from the process, and then family health setbacks drew my energy away from writing.

So, beset by difficulties I retreated, regrouped and here, a mere two months later, I am. For those of you still willing to follow the very occasional #notblogjune style of writing (a label I shall never reuse), welcome. To anyone annoyed by my not keeping to a schedule, I again quote Vonnegut, this time from “Slapstick, or, Lonesome No More.”:

Why don’t you take a flying fuck at a rolling doughnut? Why don’t you take a flying fuck at the moooooooooooon?

Literature is so very important in aiding our ability to communicate effectively.

Now, to the matter at hand. RUOK, or more specifically am I ok? Bright readers will notice I have given the answer above.

I’ll address the no first. I’m where I was in June, but for longer. I have as recently as Tuesday experienced a very scary night related to Fi’s health and this time its impacted on our relationship to the degree that we are rebuilding, although let me make clear: there will never be an impact that will end us.

Fi had what was very likely a TIA. A Transient Ischemic Attack, for those not in the know, is the stroke you have when you don’t have a stroke. Any and all of the typical symptoms can appear, with the only difference being that they go away and don’t stay forever. It’s like the lottery except with a much better chance of winning, and the prize is a stroke.

Typical symptoms include paralysis, loss of speech, loss of memory, facial droop. We experienced all of those on the night. For the record: Fi is fine. it wasn’t a stroke. None of it stayed with us. Give or take we’re back to where we were on the symptomatic front.

Another typical symptom of a stroke or TIA discussed in the literature but rarely mentioned by carers in public is personality change. That was also present. Over the night, my caring, supportive wife was replaced by someone with the same voice, similar thoughts but far less of a filter over the resentment that naturally occurs for a person who is otherwise mentally healthy but forced through circumstance to live a life of dependence.

Things reached a point that I will not – cannot – describe here. Suffice to say that it was bad. Things were said that did not hurt in that I am hard to hurt with words, but they did hurt because those words coming from one’s dearest love hurt even when you know she is not herself. Shortly after she collapsed, and afterwards only vaguely remembered what occured. This is the nature of a TIA. The symptoms recede and the personality change receded with them. Fi was mainly confused and regretful about the parts she could remember.

So this is the nature of our rebuilding. Over time, and gently, Fi and I will talk about what happened and how it happened. We’ll piece together our mutual healing, but we have to do it slowly. Neither of us can sustain a good sorting out – that creates the risk of a repeat of the same.

So no, I’m not ok. The yes isn’t token – I have as previously mentioned a knack for lining up needed resources ahead of time, and that hasn’t left me. Fi goes to STEPS meetings and mentioned our situation to a trusted health professional associated with the service. She’s provided some very useful pointers to supports aimed particularly at struggling carers, as well as a path for Fi to take to learn to mediate the worst effects of this kind of event. We’re 100% there for each other and will get there together.

I leave you with another Vonnegut quote, this time from “Breakfast of Champions”:

As for the story itself, it was entitled “The Dancing Fool.” Like so many Trout stories, it was about a tragic failure to communicate. Here was the plot: A flying saucer creature named Zog arrived on Earth to explain how wars could be prevented and how cancer could be cured. He brought the information from Margo, a planet where the natives conversed by means of farts and tap dancing. Zog landed at night in Connecticut. He had no sooner touched down than he saw a house on fire. He rushed into the house, farting and tap dancing, warning the people about the terrible danger they were in. The head of the house brained Zog with a golfclub.

So it goes. Poo-tee-weet. Shit happens.

Laughing with my best friend. #blogjune 13

“Do you like how I’ve sliced my hair?” she says.

She means style, or perhaps part. I grin, and respond, “I looks like a very spicy slice indeed.”

Fi and I are laughing. She tells me she knows that wasn’t the right word but she could find the one she meant.

I say, “I don’t mind whether it’s our life of wordplay or our life of language loss. I still know what you mean, and I don’t know which is funnier.”

“Why not both?,” she shrugs. Unlike the girl in the meme, one arm raises about thirty degrees less than the other. I point it out and find she hadn’t even realised. We laugh about that too.

why not both

The sticking plaster. Possible trigger warning: Mental health issues #blogjune 12

Perhaps three years ago I was talking to a work friend about matters mental. She has a degree in psychology so our musings cover the professional, academic and personal.

Touching on my approach, I mention that I’ve learnt the knack of arranging for the resources I’m going to need to be there at the time that I need them.

This is by no means a perfect process. A large part is accepting the resources that are there, and a further part of that is game analysis (in the economic theory sense) to maximise the outcomes from those resources.

The part that can best be considered forward planning comes about from a sense of savoir faire. While I am not in the business of recommending services outside of my professional scope, I am very much in the business of helping people navigate the information environment to find the best services and supports for themselves. Time and again in information literacy sessions I have helped people develop strategies that best support their abilities to increase their capacity in the digital age. The me that searches helped the me that had a desperately unwell wife find the right questions to ask leading to an increasing amount of actually useful services and supports flowing into our home.

Which leads us to here.

It’s not good. I’m struggling.

All my ability to grasp opportunity and foresee problems has worked just fine. My family has stayed together, alive and afloat and are working our way to a vastly stronger version of Maslow’s pyramid.

I’m still struggling.

I don’t fight it, I don’t make it worse for myself. I’m really, really good at keeping it together while struggling, and the key is usually not to struggle more than absolutely necessary.

The thing is that I’ve been struggling for a very long time.

Worse – I will be struggling for a time to come. There are improvements but we’re at the quick fix stage and are yet to find sustainable.

I like to write about the ends of roads. I like to write about the wry uptick. There isn’t one. There’s me carrying a lot, and bit by bit carrying a little less, all going well.

I’m actually afraid that it all might go away at once. There’s a phenomenon in crush injuries where the release of pressure allows a massive buildup of toxins to spread across the system. Death follows soon after.

I have been traumatised by all this. How could I not be? I have not denied my trauma, for all I haven’t made it universally public. I’ve stayed connected to my pain, as a wise person once told me to do, and in doing so have been able to stay connected to myself, my family and the world.

The issue is that I have not been able to process my trauma. I have been able to merely manage it.

I am the sticking plaster I hold in place.

There is one more resource I have arranged ahead of time. I married a woman who actually loves me.

At this point she is far enough along her journey of healing to give back the nurturing I have been giving her. Her capacity is small just yet but what she gives is worth so much.

One night just recently, we’d had a slightly stressful arrival home. Fi was in and out of consciousness and near the peak of her always-cyclical mobility issues. We were standing beside the car, her holding on to me and I very anxious that we couldn’t make it to the house without a fall onto concrete.

Barely able to stand, hardly able to talk she soothed me. She told me, we can do this. You’re ok. We’ve got this. And we did.

There’s your uptick. There’s your happy ending.

10 Feng Shui tips for the trashy #blogjune 11

  1. Put a tiny rake in your cat’s litter tray.
  2. Throw your washing in the North East corner of your bedroom.
  3. Point the foot of your sofa bed West until the washing mound starts to slump across it.
  4. Put some coins in your underwear drawer.
  5. Actually, take the coins out, they’ve got the $2 burger deal on today.
  6. Maybe something to do with mirrors? Are they a thing?
  7. Get a bucket of water and move it around the house until the vibe feels right.
  8. Mop up where the bucket splashed.
  9. Buy a money tree and just leave it in the back yard somewhere. You’ll get around to repotting it.*
  10. Get one of those plastic lucky cats.**

*Sure you will.

**Actual Feng Shui.

A room of transformation #blogjune 10

It’s deep in the dark days. Fi’s been out of rehab for some time and we’re trying to pretend to some kind of normality even as our lives are punctuated by regular hospital visits both planned and emergency.

I’m living in a constant sense of not drowning, because I’m not allowed that luxury, but treading water. I do what I can to keep the family going, and do very little to keep myself going beyond putting food in and making sleep happen.

In the middle of all this I realise the scope of our difficulty. It is becoming apparent that supports in our lives are fading rapidly. Rehab both in-hospital and community-based for stroke patients seems to be set up for people of an age to go straight from care into a rest home, not for relatively young people with a very young family. Fi’s disheartened because she can’t contribute; I’m disheartened because I get no let up. We spend a lot of the time angry at each other for being resentful of the others’ lot. If only I could stay home and rest. If only she could go out and talk to other people.

I try to find what supports there are that might help. I make contact with the representative of a service who makes promises of things happening when she’s gathered a few names, then nothing.

Suddenly, the service comes back. They have names. They have a need for a group. Things are coming together perfectly when I find they are proposing to run the group a floor above where I work. I can support my wife without having to take leave, for once. I negotiate a temporary variation in my hours to support a two hour meeting and a hasty lunch each Thursday and then wait to find out how things go.

The first meeting was the first time I was in a room with other people like me and knew it. Carers for people with Acquired Brain Injuries and their partners. There’s a course to work through but in between we are allowed – even encouraged – to disrupt and talk to the real talk. Some of us are in pairs. Some of us are not. Some of us are beacons of positivity, some of us are dogged and one or two are heartbroken.

I come to a realisation. I turn to the carer next to me, and quietly say – I wouldn’t do it, but I understand why some people leave.

It must be one of the hardest things in the world to be with someone who suffers a life changing tragedy and realise you just don’t love them enough to be there for them. I’m not talking about the foot-out-the-door types; I’m talking about people who genuinely thought this was it until they were forced to realise it wasn’t.

Of course, the people left have it unimaginably harder, but over time the people in that room – single in pairs – started thriving, surviving and taking joy where they could, as did we as we learned alongside them.

We owe ABIOS for vastly more than that, but those sessions gave us a community to belong to, friends to talk to who understood and, because we did do the coursework, a framework to explore a truer form of empowerment in disability.

An ordinary family crisis #blogjune 9

So after all that we are at the hospital today after all. Ro’s tummy ache has extended into temperatures floating towards danger territories. The point at which we try some liquid Panadol which managed the situation earlier in the afternoon only to have it come back at us in a hurry is the point at which we acknowledge we need help to manage the situation.

Fi wants to be the parent to stay if there’s a need for an overnight. This speaks to our philosophy in dealing with disability. Rather than have too hard baskets, we talk through strategies to find the possible rather than live against the barriers. Our mobility scooter solves most problems and we have a talk about how to handle fatigue. In the end we agree that the staff need to know about the possibility of absence seizures, their brief duration and their ultimately minor consequence. The main thing is for Fi not to be extensively treated for something she is already treated for and take the focus off Ro.

So here we are with a plan and a mother who isn’t anxious she’ll have to abandon her daughter because we’re living in a too hard basket. We have books, drawing pages and each other and it’s more than enough to survive an ordinary family crisis.

Interlude – #blogjune 8 makeup post

I heard this morning that one of my friends clicked through to here from my Facebook page and thought she was just discovering that Fi was back in long stay hospital. Firstly, a huge apology – it’s definitely not my intention in retelling these stories to cause anyone any distress. That friend herself has a load to carry. I’m often thinking about and praying for her.

So for today’s catch up post I’m taking a moderate step down from the authorial voice – I’m talking as me rather than about me as a character in a story that is in a sense true to what actually happened.

In reality, I did find a bloke peeing on my car after a gig, he did tell me he was unable to stop himself, I did in think in an angry and tired flash of hitting him with my keyboard which I ignored rather than carefully assessed and I did indeed patiently let him finish. I mean, where’s the profit in trying to manhandle a drunk person loosing a bloated bladder?

It’s a while ago but I believe I told him to finish and get away from my car as soon as he had. I certainly didn’t think of Gunga Din although “if you can keep your head while those around you are losing theirs” certainly applies.

So yes, craft and process and all that. The actual night left me feeling deflated and resentful, in the story I’m tough but wise and somehow connected with other great works of literature.

On to the state of play now that for one post I can speak as me. Yes, I know I have always had that option. Yes, I know I am belligerently answering questions from an imagined audience right now. I’m a little tired. I’m just here to share why I didn’t get to posting yesterday.

I had a busy day at work yesterday managing the service through a planned network outage. It wasn’t too bad in that nothing went wrong, but nothing went wrong because I spent the day managing little things before they turned into big things. The regular customers who like a chat were approached and chatted with first so I could let them know I needed to focus on the workflows. Breaks were chased up on where I would normally be fairly laissez-faire so long as the service is covered on a weekend shift. It was a successful exercise but I was enormously tired at the end.

The NDIS – which Fi has written somewhat about elsewhere – came to the rescue for an aspect of the evening. I was definitely feeling antisocial when I get home, and we had a parish event to attend, also covered by Fi. Fi gets a travel allowance, and along with running her own errands this allows us on occasion to take an Uber so I don’t have to play chauffeur every time we go out. This allowed me to enjoy a few beers without counting and they got burned off because most of my night was spent on the dance floor with one or both of the two ladies in my life, because yes – it turns out my wife who finds it difficult to walk more than a hundred meters can dance for a lot longer. The atmosphere was great, the friends were fun and all in all it was the kind of celebration our family has needed. I came home exhausted but very happy and with not the slightest interest in blogging.

Today Fi is tired and Ro has a stomach bug that might possibly be stomach flu. Right now they’re both sleeping so here I am.

Folks, the stories are often about times of stress. There’s stuff I need to unload, and while I’ve bitten off some big chunks there will be more.

In the meantime, please know that for the most part we suffer fairly ordinary family stresses and welcome fairly ordinary family joys. It’s been hard, but it’s slowly starting to get better. This might have been an end of month thing to say, but I’m saying it now. Things have been hard, but now they’re ok-ish most of the time and wonderful some of the time.

Today I’ll catch up on my writing. Tomorrow (still my weekend) I will catch up on my reading.

Certain rules of civility: blogjune #7

It had been a good night. I’d played my music well and spent time enjoying others’ sets and catching up with friends in the scene. Luck had been with me since early on – the gig was on K Road and I’d timed my arrival to get one of the more convenient spots after they became free and before they filled up.

My keyboard was a pretty ungainly affair, an older Casio synth that was closer to a moog than the modern model of a midi sampler that just happened to have some keys attached. It didn’t quite have valves but to support its full keyboard and a sufficient amount of digital-but-close-to-analogue processing power it carried quite a bit of weight. It was a beast but it did what I asked of it and I loved it dearly.

Satisfied, I carried it the few hundred metres along the road. I was happy but tired and more than ready for the hour drive to my country  town home. When I got to my car I was mystified to find a young man standing behind it. I wasn’t concerned about the contents of my old beater, but I didn’t initially know what he was doing there. Closer inspection revealed the reason.

Certain rules of civility may be suspended after midnight on a city street when one finds a person urinating on the back of one’s car. I’ll admit I suspended some of mine. I suggested he exit from the scene in a fairly direct manner. He apologised, but said he’d been desperate and was unable to stop at this point.

I considered my options. They seemed to boil down to hitting him with the keyboard or politely waiting. As the former wouldn’t remove the mess and certainly would have been bad for the keyboard, the young man and myself, I opted for the latter, thinking of Gunga Din.

Me time. #blogjune 6

Yesterday’s post was a big one. I’m worried that I made it too real, and I’m worried that I didn’t make it dark enough to reflect the real. It was enough to remind me of being in a place where even will and determination weren’t enough. I got through but I prayed nearly constantly.

Tonight I am drained. In previous years I would implement a meme, perhaps 20 questions starting with my favourite toast toppings. This time I have decided blogjune means write every day, but tonight I am allowing to be enough writing to honour the decision. Time to rest.

The journey of a bud – #blogjune 5

Fi’s time in rehab was difficult for us. I took the first week off work and mainly spent it rushing to achieve a multitude of changes so that we were at least somewhat safeguarded against the consequences of the massive change that had just landed on us. Banks and billers were negotiated with. Purchases necessary for wellbeing were made. Then I came back to work, and life became very simple.

Work. Pick up Rosie. Family time in rehab. Rosie to her grandmother’s for a meal. Personal time with Fi until I was kicked out. Sometimes she’d be exhausted and I’d sit while she rested. Sometimes we’d fight, her frustrated at my lack of communication, me frustrated at her not realising that communication wasn’t happening simply because there wasn’t time for it to happen in. That in our maybe hour of alone time, sometimes just sitting and holding hands was all we were capable of.

We always made our way through these moments. Every time. Some of the nurses were angry with me because we fought. In stroke rehab, they are used to people near the end of their life and see less of people (albeit middle aged ones) in a very much young marriage. We didn’t fit the model, but we needed to release the deep feelings the situation had forced upon us and reconnect. This was as vital to my wellbeing as it was to hers.

So work, sharing, conflict and reconnection then picking up our daughter and nurturing her so she had what could be received as continuity and safety within chaos and confoundment. During this time she was very able to talk to me about how she felt about her mother, but could only act out the anger she felt towards me for not doing my duty and simply making the problem go away. She and I also came through and reconnected.

Then loneliness, maybe a bit of chat with Fi and gaming until I was ready to sleep. I have the benefit of a friend who likes similar games and plays at similar times so while I was still heartbrokenly lonely I was not alone. I had company journeying through the virtual worlds, and that helped as much as anything else. Within this I kept regular hours and emphasised self care. Even then I knew I was in for a long haul. It was a difficult time but at least I was in my own corner during it.

There is a small garden near the Redcliffe Hospital’s Rehabilitation Unit, just outside the Palliative Care Unit. We made it a regular destination for family time. Over a series of nights I documented the blossoming of one of the roses. The shots are not always the best but a small tale is told here.

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Journey of a bud – day 1 #flowers #roses

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Journey of a bud – day 2 #roses #flowers

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Journey of a bud day 3 #flowers #roses

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The journey of a bud – day 4 #flowers #roses

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