Firstly, an apology to K&V; I’ve had another run of cluster headaches since we met on Thursday, and have been awake most the night and asleep most the day, so haven’t accomplished what I promised yet. They’re such bastards of a thing; I hate their nickname of ‘suicide headaches’, but at 2 in the morning I completely understand it.
This cluster seems to be over (with fingers crossed and a fair wind behind), so I’ll work double duty over the next couple of days to tick all those boxes.
Last week I re-read the one article I have completed so far for this PhD, and found in it a lesson I had already forgotten. Chronic pain is paradoxical, unpredictable, and ever changing, and making sense of it one day might mean nothing the next.
I told Kerry I would stop moaning about the pain (his reply: the moaning is the PhD…) and though I was joking, I think I was also right. The moaning used to help (because I was sad and moaning helps us to not feel so alone when we’re sad) but it’s just a holding pattern now. I’m not sad, and there is no sense to make of a senseless thing, however much you angst on it. I mean, I could tell a story about pain and sense if I really wanted – one can tell any kind of story about any kind of thing if one is so inclined – but it wouldn’t be a story I believe. And if it’s not a story I believe, it’s no longer a useful story.
I don’t know what comes next. I just know I’m ready for useful.
I had a rather useful, if somewhat belated, revelation today as I sat down at my desk and faced some things I have been too anxious/fearful/worried/unconfident/insert-whatever-synonym-you-feel-is-appropriate-here to face.
I’ve been an idiot. Half the things I’d already done but forgotten I’d done (?). And the other half are actually pretty simple and I’ve spent much too much time way over-preparing for. Now I feel completely stupid and sheepish, which is a vast improvement on anxious and fearful etc…
Just wanted a note to remind myself when it happens again in the future. I won’t listen, but I will have been warned.
Also I’ve been very excited this week, because the Terra Pericolosa project is going really well and I can see how well it is going to work within the PhD as a whole. I’ve renamed it Terra Leones (place of lions) because it was code in medieval mapmaking for uncharted lands rather than the ‘pericolosa’ warning of dangerous lands; I think that’s more accurate, and also easier to say. Much easier. This may, or may not, have been my true reason for changing…
Now I just need to sort my goddamned painful arm out, which is unlikely to ever happen because nerve damage and joint instability, and do you know how often you use your shoulder joint in a day? Clue: it’s very much often.
My Tuesday evening was spent driving through city rush hour traffic to visit a neurologist, Dr. C with the kind blue eyes and the kind soft voice. I felt ridiculous in my red lipstick, and my smelly feet, and my fat tired body. After half an hour of finger-to-nose touching and one-leg standing type of neurological exercises, his official diagnosis was ‘definitely something under the general migraine-cluster headache umbrella’, to be treated with the same medication as the GP prescribed me many weeks ago.
I feel an odd kind of jealousy of people who have just one condition to focus on. I have a twisted longing to take all the many small and complicated health-related balls I try to juggle and swap them for just a single ball, even if it was a very large and very heavy ball. In my imagination, this is a relief. In my imagination I could put it down, declare it too burdensome for one person to carry, get help, get sympathy (the deserved, non-humiliating kind). I could have t-shirts made and charities started.
I don’t feel a lack of legitimacy, just an abundance of complication. I want something to blame, and I want that something to not be me. I want certainty. I want to know when I find a medication that stops the bomb in my head exploding at 3 in the morning, I won’t be woken the next morning with a painful shoulder that no longer fits right, that when there’s relief for the painful shoulder that no longer fits right, I want to know I won’t walk through the next day with another tear in another weak ligament, and when another tear in another ligament starts to heal, I want to know the extra bone in my hand won’t hurt as much today, and if the extra bone in my hand doesn’t hurt as much today, I want to know that I won’t feel exhausted because now more of my thyroid has stopped producing its hormone, and when that lack of hormone has been compensated for, I want to know I still won’t feel exhausted because the bugs in my lung have started growing again, and when the bugs in my lung have been killed off one more time, I want to know that I won’t spend a week itching my hive covered skin, and when the hive covered skin settles down once more, I want to know that the stress of a long string of sleepless nights won’t leave me vulnerable to another viral attack, and when I finally recover from another viral attack, I want to know my joints won’t begin aching from a flare of inflammation, and when something calms the flare of inflammation, I want to know that this is a day the brachial nerves won’t dance their pinching burning impish dance, and if this is a day (blessed miracle!) the brachial nerves don’t dance their pinching burning impish dance, I want to know the pollen (the perfume, the dust, the cat fur) won’t swell my face right up in a weeping throbbing ball, and if the pollen (the perfume, the dust, the cat fur) don’t swell my face right up in a weeping throbbing ball, I want to know that today an irrational wad of overwhelming anxiety doesn’t keep me afraid and silent, and if this is a day an irrational wad of overwhelming anxiety doesn’t keep me afraid and silent, I want to know the pills I take won’t numb my brain, turn my stomach, put me to sleep for days at a time, and if the pills I take don’t numb my brain, turn my stomach, put me to sleep for days at a time, I want to be sure the bomb in my head won’t explode at 3 in the morning…
Loud, clanging, complicated body. It never shuts the hell up, just shifts its mood between plaintive mewling to full screaming hissy fit. One illness would give me the ability to point at something and say ‘this is what and why and how’, but this messy, bitsy, ill-fitting group of sodding piss-all, they are just too messy and too bitsy to point at and make much sense.
What I think I want, even more than cure, or rest, or help, or bloody peace and goddamned quiet, is to just simply make a great deal lot more sense.
Imperfection has a certain tang.Honestly, most of the first year of my PhD has been spent in a spinning fog of confused brain fade for one reason or another. I never felt okay enough to fully admit how not okay I was. I didn’t want all the things I had worked so hard for taken away from me just because my goddamned nervous system had set itself on fire.
I still don’t. This can make being truthful difficult, even (sometimes especially) to myself. It feels like there is an imaginary line between acceptable and unacceptable pain and illness, acceptable and unacceptable time spans in which to suffer from pain and illness. I tried to present myself on the right side of that line, without ever stopping to consider that the line, the idea of the line, is itself completely fucked.
I’ve started wearing red lipstick. Bright vintage brick red. I rarely wear lipstick at all and when I do it’s in colours that are called things like ‘nude’ or ‘barely there’ (which always, incidentally, only literally means nude or barely there if you have white skin). It’s not a cover up, I’m not trying to ‘pass’ for healthy, putting my armour on, or any other similar kind of defensive act. I don’t even think it looks that great. It’s okay, but. Meh. A little showy for me.
And the showy is the precise reason I’ve started wearing it. Red is such a dominant colour, you can’t miss it (unless you’re colour blind, which my husband most certainly is and has yet to notice any kind of change). Someone who walks into a room with bright red lips is someone you notice, or more importantly, is someone that can’t hide. I need practice at not hiding. The louder my body has become, the more I’ve tried to mute it, which is, of course, just muting myself. I’ve found it hard to write, to talk, to even leave this small crappy bloody tiny house. I embarrass myself. Hiding has been the best way to keep my body, my shame, quiet.
It’s also been a complete and unmitigated bloody disaster.
Antoine de Saint-Exupery said that we are afraid to let go of our petty reality in order to grasp at a great shadow, and what I think he means is that we (and by we, I almost always mean I) are comfortable in our routines and the stock stories we pull out to explain who we are, and why things are, and what is possible. The great shadow is unknown, unfamiliar, and could equally hold a portal to hell as a stairway to heaven. The shadow feels like an enormous psychological risk.
It’s not though. Not really. There’s neither hell nor heaven there, just better context, a different perspective, more information. It’s taking a walk in other kinds of weather, it’s looking at the world, at our community, at our place in them, from other points of view. Maybe from there we might catch a glimpse of someone else’s imperfection too.
This picture has been sitting in a draft folder for weeks, I don’t know what to do with it. I have such big and broad and complicated feelings and ideas every time I look at it. I took it on the way to the last supervisory meeting, an overt signalling, a literal sign, of a common narrative; physical health is (largely) something within your own control. Sick? Eat cleaner, think better, climb a butt load more stairs. Try this, do that, have some goddamned self-respect. Don’t come complaining to us if you choose to sit on your lazy arse instead, and that lazy arse starts hurting.
The more I look, the more I read, the more I find such a deep and deeply uncompassionate moral judgement about ‘unhealthy’ bodies. I know that for me I cannot say one thing about my pain without an inevitable comment from someone, somewhere, about a way I can fix it (a medical medium, and the power of the brain to heal its own pain – whatever that means – being two I had today). As if I don’t care. As if I haven’t tried.
Outside this blog, my doctor’s visits, and the supervisory meetings, I very rarely ever talk about pain, partly for that reason, and never do I talk about all of it together. Keeping my pain experience compartmentalised into this syndrome, and that disease, is protective I think. I can’t be blamed for the neuritis – random act of cruel fate. The resulting nerve and muscle damage – same. I can’t be blamed for inflammatory arthritis either – dealt a bad hand, just the way things go. Advanced osteoarthritis at my age, the fault must be in my stars. A genetic flaw that produces weak ligaments, prone to tearing apart – that’s bad luck old girl, just plain bad luck. Cluster headaches? Uncommon and cruel. Sensitised nervous system? You’re so not alone there, baby.
But all of that together in one body (and it’s still not everything), that must be at least partly my fault, that must be at least some lack of duty of care, some kind of abandonment of personal responsibility. All that together in one body, it’s not where a stair climbing, pill rejecting, vigorous kind of active person would find themselves.
In short, I feel shame and ashamed of myself, fault or no.
I don’t know where I’m going with this yet. I just know it’s probably important I go there.
You asked me once, and I could give no answer,
How far dare we throw off the daily ruse,
Official treacheries of face and name,
Have out our true identity? I could hazard
An answer now, if you are asking still.
We are a small and lonely human race
Showing no sign of mastering solitude
Out on this stony planet that we farm.
The most that we can do for one another
Is let our blunders and our blind mischances
Argue a certain brusque abrupt compassion.
We might as well be truthful. I should say
They’re luckiest who know they’re not unique;
But only art or common interchange
Can teach that kindest truth. And even art
Can only hint at what disturbed a Melville
Or calmed a Mahler’s frenzy; you and I
Still look from separate windows every morning
Upon the same white daylight in the square.
And when we come into each other’s rooms
Once in awhile, encumbered and self-conscious,
We hover awkwardly about the threshold
And usually regret the visit later.
Perhaps the harshest fact is, only lovers–
And once in a while two with the grace of lovers–
Unlearn that clumsiness of rare intrusion
And let each other freely come and go.
Most of us shut too quickly into cupboards
The margin-scribbled books, the dried geranium,
The penny horoscope, letters never mailed.
The door may open, but the room is altered;
Not the same room we look from night and day.
It takes a late and slowly blooming wisdom
To learn that those we marked infallible
Are tragi-comic stumblers like ourselves.
The knowledge breeds reserve. We walk on tiptoe,
Demanding more than we know how to render.
Two-edged discovery hunts us finally down;
The human act will make us real again,
And then perhaps we come to know each other.
Let us return to imperfection’s school.
No longer wandering after Plato’s ghost,
Seeking the garden where all fruit is flawless,
We must at last renounce that ultimate blue
And take a walk in other kinds of weather.
The sourest apple makes its wry announcement
That imperfection has a certain tang.
Maybe we shouldn’t turn our pockets out
To the last crumb or lingering bit of fluff,
But all we can confess of what we are
Has in it the defeat of isolation–
If not our own, then someone’s, anyway.
-From Stepping Backward, Adrienne Rich
I meant to write a post rather than post a poem, but I have been awake since midnight, on and off, with a migraine, a cluster-headache, an I-don’t-know-what, and can’t remember my words. I have had those kinds of headaches for years, but only at night, and by day I forget they ever existed, except in the tiredness, except in the fog. Probably less a forgetting, than a dismissal: I do not want to add to what can seem to me to be a loud and incessant Chorus standing on the stage next to me reciting All the Things Wrong About You.
Yes, I did just describe myself as a Greek Tragedy.
I met with Kerry and Veronica yesterday. I arrived feeling physically and mentally shattered but I left feeling better about myself and my work. I left feeling supported and capable. I was, am, ever shall be, supremely grateful for it, because the damned confirmation report (I have still to complete) had felt like a millstone around my neck, dragging me and my PhD down with it. I’d lost momentum, I’d lost confidence, I’d lost my sense of the value of my work. They made me laugh, they commiserated with the pain-in -the-arseness of the report, they gave me a few quick and easy jobs to do before I go back to it, and they reaffirmed, in their questions and in their interest, that there is something worthwhile in what I am trying to achieve. When they asked me if the meeting had been helpful, I stumbled through my answer, and I felt they deserved a better one, so here it is: Yes. Supremely. It wasn’t just helpful, it was meaningful and it was kind.
Which brings us back to the poem. As the pain has improved, there has crept into my feelings about myself, about this autoethnography, a sense of shame, of self-reproach, of judgement, about what I think I should be capable of by now, how much better I should be. It’s complicated – isn’t everything? – but when I read Adrienne’s poem this morning, I could see something of what has been nudging at the edge of my consciousness for months, ideas I have felt but not been able to articulate. Important ideas on loneliness and expertise, on vulnerability and shame, how they relate to my experience of pain and of autoethnography both; ideas I will detangle futher on another day, when I have more time, when I have more brain.
(I know it will wear off but until that day I will be happy for the relief: I had no idea how much pain I had been in again. You just get used to it, but also more affected by it than you realise, and by you, I mean me.)
I haven’t, as mentioned, been sleeping well. Everything is slow and hard when you’re not sleeping. I had a check up with my rheumatologist this morning, who said the weakened shoulder muscles from the neuritis have caused shoulder impingement syndrome (not an ‘itis, but a syndrome, we’re moving up!) which is what has been keeping me awake half the night. I was expecting the whole anti-inflammatory/physiotherapist for 6 weeks spiel, but he went straight for the cortisone instead. He’s not trigger happy with the stuff, so I trust there was good reason to slam it with steroids. He put an anaesthetic in the injection too and for a while nothing much hurt there at all, it was SO GOOD. I felt like running up to complete strangers in the clinic cafeteria and yelling ‘hey guess what my shoulder feels better for the first time in FOREVER, isn’t that great?’ but I suspect that might have been one of those socially inappropriate actions people are always telling me about. Pity. It’s totally worth celebrating. It’s a little more sore now the anaesthetic has worn off, but still a million times more usable as an actual arm, hooray! The real proof will be in the sleeping pudding though, I suppose.
He said all the recent ligament and tendon tears in my ankles and knees are just my genetically weak collagen not coping with much movement at all, and, as such, gets put in the #nothingwecando #itsjustwhoyouarenow basket. Hmmmm. I’ll have to think on that one.
But first a nap. I have so much work to do (and feel so much better about doing it – pain is a real energy sucker, eh?) only my eyes are refusing to remain open. I *could* mark assignments with my eyes closed, but I’m not sure it’s the responsible choice. Or I could just give everyone an A. No-one can be unhappy with an A.