Writing the Storm


I am meant to be editing my chapter. After almost 7 months of depression I’m thinking I might be about to make a turn for the better. But then I sit at my computer.

For the past three weeks I have sat at my computer. Twice weekly for a couple of hours I try to edit. I keep a progress report to remind myself what I’ve edited, that I’ve  edited. Before this emotional dip I was working steadily. I had gone through the chapter working out what themes and historians needed highlighting. But the lack of concentration, the tiredness, the inability to move, the anxiety tore through my thoughts, leaving my routine in paper trails.

Everytime I sit at my desk, if feels like I’m beginning again. It is habitual discontinuation. Today I opened the document, tried to read my notes and progress-report in preparation and then? Then nothing. I physically couldn’t look at the words I’d written, the words which back in December were passed with minor corrections, the words that revealed I had a ‘marvelous eye for the physical detail’, that were celebrated for showing another side to a well-trodden path, the words that got me this far. I can’t do it, as I type my heart thumps, my stomach flips. My hands shake, my feet wriggle, my breath rises and my eyes flit. I try to focus on yogic breathing, but for all the smell of a Neil’s Yard Relaxing Remedy, my adrenalin sterilises the sensation. I look around for words of encouragement that my partner and friends have given me:

‘Keep on going, keep on going, you are lovely and a great writer’

‘Keep going you fantabulous woman you!!!’

‘History: it’s just one fucking thing after another.’

These words I have no trouble reading, but to concentrate on more than love and informality remains tiring in the extreme. It demands that I shun the paradox within that says I can’t do this, that says my fear is laziness, that it’s been long enough, snap out of it! It is a paradox that exists both within me and in society.

At my meeting with my psychiatrist this week we talked about feeling better, how while the depression wanes my anxiety is palpable. I explained how tiring I was finding it to keep justifying to myself the importance of a recuperation period in the face of society’s silent disregard. There is an unspoken sense that depression is time-limited that once six months has passed, you could pull yourself together if you just tried. But I am a ramshackled garden, it’s not as simple as just mowing the lawn and a bit of pruning, it takes dedicated, knowledgeable, tender loving care.

My psychiatrist explained to me that one of the most common reasons people fail to recover from mental distress is because they have to operate within a society which has such a limited view of health and well-being. The balancing act of proving you are well enough to be a reliable, effective member of society and at the same time having to justify or prove the impact of a condition, especially a seemingly invisible one, limits the capacity to feel and be better. Forced to respond to other people’s perceptions, it undermines any trust you have in yourself. There is no room to be when you are constantly asked what not to be.

The irony is long-term conditions, such as diabetes and depression provide skills that as a society we would all benefit from. My diabetes, for example, means I can think on my feet in adverse situations, that I can multitask, that I work independently on a daily basis and as part of a team when I visit my clinic, that I practice fractions, percentages and long divisions daily, that I know the physical and mental impact of the food we eat, the exercise we undertake, the stress we suffer. All excellent academic and social qualities. My depressions have further shown the value of slow thought. My PhD has taken almost six years, I received funding for 4. In my case it would have been a lesser PhD without that additional time. It would have been half formed both in words and theory. Depression focused my arguments, brought them to life. It was my own isolation from academia that made me want to find the voice of the unheard, understand why certain school children were thought to be more ‘special’ than others. Without my own conditions I wouldn’t have had the same emotional resonance with the ‘special’ child that is at the heart of my thesis. A child whose story reveals a more complicated position than the traditional Foucauldian models of power put forward by social and educational historians thus far. It is a story about how children’s segregation was used, however misguidedly, as a way to integrate. To practice equality with inequality. It is a story that centres on the impact of perception.

But if only editing needed such literary flourish. If only I could focus on what I can write rather than what I can not.

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true colours


“I don’t want to! I won’t do it. I won’t. Why should I? I hate it. I hate it I hate it I hate!”

I have homework to do.

image

I am sitting in a hospital room. The purple walls, painted in a moment of early 21st Century  hedonism, are peeling.  The table that holds my plastic cup of water doesn’t balance properly, but it doesn’t matter the cup is empty. I am still thirsty and my eyes are damp. But a sash window is open and the breeze is soft. I am sitting in a hospital room alone, waiting for a prescription. After this meeting I will go and work, but I will first go straight to the chemist, where the medicine provided will then sit in my bag for three weeks. Unopened, unused, untested.

At the library I will read and annotate for 4 solid hours, thinking about how to use other people’s arguments to show off my own. I am told it is just doing what is demanded of academia, so I ignore my own opinions and focus. I will be exhausted tomorrow but I will take comfort in my health being a small sacrifice for progress. After all I know how I feel, so therefore I am in control, I can choose to relax can’t I? I will visit friends, go for a walk, see my family. But one week from now I will be sitting in this room again, with its purple paint and its Victorian window, recalling 7 days of panic attacks, exhaustion, and the discomfort in familiar comforts. How surprised I will be that depression can still surprise me. I will realise that it is not something I go through, but something that goes through me. In this little room I will be asked to think about goals. I will think about them as I go for a long walk. For the rest of that week I will take to my bed. It is not that I will not be able to get up, but that I won’t be able to stay up. Exhaustion will batter me into a rock and a hard place. Save for an appointment in the purple room, siblings and the man I love, I will feel trapped under the sheets. When I can untie myself I will pull myself out and into the parks. I will delight in the green under the tiresome, dark and painful waves of PMT and depression. I will be exhausted when I return.

Another week and I will sit in the waiting area of the hospital looking at diet posters on a UKIP coloured wall. It is shinier than the purple room but some how even more bleak than the New Labour peeling. Who decided purple was a hospital colour? As a child it was womb-coloured peach, as a teenager a sterile blue. Now the two have merged and belched out the colour of mourning and suffrage. It will depresses me in its confusion, so I will look away and return to my Carol Ann Duffy anthology. Like the other weeks I will be called in and receive an apology for the decaying room and for running late, despite beginning on time. The room will smell of another person’s distress, all  musty sweat and unwashed bedding. The window will be open wide. It will take 50 minutes for the smell to clear. In that time goals will be discussed, fears articulated and rebellions admitted. I will be set homework so simple it will really test me:

“What are the Pros and Cons for me of keeping a blood sugar diary? And how can those cons be overcome?”

I will start to write the list and feel outweighed by the con of having to be ‘organised’, ‘routine’ and seeing ‘my life as just numbers without context’.

I will scream to myself, just as I am doing waiting in this little purple room for the prescription, “I don’t want to! I won’t do it. I won’t. Why should I? I hate it. I hate it I hate it I hate!”

But both then and now I wonder if perhaps it is time to start thinking about opening, using and testing the medicine. Maybe the comfort resides in the unknown, after all that is where we also find hope.

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Digging Deep


Yesterday at 10am I was booked in for a two hour insulin-pump refresher session at Kings. I had woken at 8am to a level of 9.3, a 3am test had scared me into cutting my insulin rate by 20% for a couple of hours. ‘I shouldn’t be so scared,’ I told myself. At 8:40am I was still lying in bed, deliberating whether to go to the session. Depression is weighted weightlessness, mind and body, despite being one of the same, feel bereft of each other. You become furrowed out, as they aimlessly tread and re-tread over the same ground searching for one another. My thoughts echoed round the led-lined hollow of my stomach. The prospect of sitting in a room full of strangers, as my mind quietly logged comparisons to use against myself filled me with dread. By 8:51 I felt exhausted. I would not go. But something pushed me.

Over the weekend I had learnt what a lottery diabetes healthcare can be. I am lucky to have Type One rather than the pitiful care sometimes offered to those with Type Two, I am lucky to have found myself living down the road from Kings Hospital and their pioneering, internationally acclaimed diabetes team. I am lucky to be booked onto a refresher session, when some areas don’t even offer insulin pumps, DAFNE courses, or systematic access to diabetes specialists, hell some countries don’t even offer insulin. ‘I must make the most of it,’ I thought, ‘I must, if I can, show how much this, as yet untainted, part of the NHS means to me. I must get up.’

At 10am I was sitting with the dietitian. It was, it turned out, a one-to-one session. The handful of other booked patients had been unable to make it, not as lucky I guess. So between the two of us we searched for patterns among the thicket of highs and lows, considered carb ratios, insulin sensitivity, stress, cake and lentils, created different insulin regimes for different times, discussed cannula technique and thanks to Kings’ ever quick (3 minutes) and ever friendly hematologists faced my A1c demon down. 8.2. ‘Up since January,’ I said, ‘but down since November,’ said the dietitian. Still too high I told myself.

As is clear, I tell myself a lot of things. I know depression is creeping in when the spaces between thoughts become filled with an involuntary mantra: ‘I hate myself.’ I say it over and over again. My ego consciously tries to unpick this comfort blanket of melancholia that smothers me. At my strongest I try to direct the words to ‘my situation’ or when I don’t have the energy ‘my body,’ but then I get into a conversation with myself about how unhelpful all these words are. Maybe I should just try Om or maybe I should just let my inner voice scream, have a tiny silent tantrum. I do it all.

When I first admitted to myself in my mid-twenties that I experienced depression, I hoped it would be something that following counselling and finishing my PhD might possibly just never come back. That is the same part of me that says ‘I hate myself.’ It is perhaps the most hopeful and therefore most vulnerable part of me. The part of myself that said very quietly, ‘this might come back’ is where my strength lies, it is the part that knows the power of limits, it allows me to accept, to wait, to understand, to try.

Yesterday was one of those days where I knew I was meant to feel proud of myself. It had taken all my might to make it into that room and I was rewarded with a reminder that my struggles with diabetes aren’t struggles because I manage it ‘poorly’ or because I am weak or have no self-control, but because as a disease it is an unrelenting struggle. At 15 my body, through a random act of genetic chemistry, turned in on itself. To make it this far is an achievement. Living with diabetes, whatever my A1c, is an achievement. It is a testament to science, the NHS, my loved ones but most of all, dare I say, myself.

To live with a long term condition, involves a depth of knowledge that even when harnessed won’t necessarily tame the untameable. This applies as much to depression as it does to diabetes. I knew I was proud of myself, but I could barely feel it, trapped as it is beneath the embarrassment of forgetting questions mid-sentence, the anxiety of being overwhelmed by information and the thought that, if I could make it here I was stupid to feel anxious and exhausted. Never have I been so aware how molecular depression is. However much I will myself to be happy and push on, emotionally I know it is no good. I do not need to push. I need to dig.

Yesterday I told my boyfriend that ‘I thought depression was something I would grow out of, but instead I think I’m growing into it.’ To my surprise he said ‘that’s great! It’s a positive way of seeing it.’ I hadn’t meant it that way, how could it possibly be positive? ‘Depression is just a moment inside a moment,’ he said, ‘you are still you.’  So then, the more I dig, the better I grow.

apple tree

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Downward facing dog


I woke up with a good level
An aborted cannula site still hurt for no reason
But less so.
I opened the curtains
The plant we have bought is turning yellow despite watering
I placed it by the window.
I felt cold so I went back to bed
I read wanted emails
I got out of bed and went into our dirty kitchen.
I made breakfast
I got back into bed
I slept.
I read an email quietly urging me to do what I’d promised.
So I did.
I practiced some yoga
I felt distracted
I used the distraction to focus on different parts of the body
It worked
For a bit
I thought about how quick I am to be honest
Too honest
But not always
But I now tell people when this is happening.
I cried
I thought maybe I would be bold and give myself a month off.
I panicked
I moved again
I felt comfortable in my discomfort
I practiced for an hour.
I felt peace
I felt tired
I got back into bed.
I started writing.
An email made me giggle.
I don’t know what happens next.

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The drop.



And when they were up they were up

And when they were down they were down

And when they were only half-way up they were neither up nor down

 

I submitted my thesis at the end of September 2013. I wanted to write then about how the achievement affected my diabetes and how diabetes affected the achievement. The final week before handing in I had sugar-level swings of 30-2 in a day. I had moments where I wanted to tear my brain from my skull, prodding my head viciously, trying to relieve the pressure and anxiety that I was placing on myself. But I didn’t. I submitted. Throughout those weeks I imagined myself a top a mountain, slipping and gripping my way to the peak, the years of depression, shingles, diabetes, and 100,000 words of original research beneath me. All those experiences helped navigate me to the top.

3 days later I started a new job.

6 days later I turned 30.

I then took a holiday from my diabetes.

For two months I responded to my sugar levels as and when, but I made no adjustment to my diet. I ate potatoes and delicious fat. I was happy and happy about my choice. I knew it would come to an end and I was happy when it did. The inevitable exhaustion of swinging sugars kicked in. It was a relief when January came. I would spend the month focused on levels, working and thinking about, if not responding to, the amendments I needed to make to the thesis. I did this. I did it all.

Change came at the end of January.

My family was the same but life was different. The unknown had smuggled its way in. Hiding in the darkness of a loved one’s body, until suddenly it was there.  Pain blinding, it shone in the light of c-scans. Tiny dark spots, tiny black masses.

It feels so impossibly crass to talk about my own feelings; but to talk about his, to pry too far, to assume too much, could just be wrong. So, here I am. Doing what all little sisters do, making it almost all about me.

As a family we are the strongest we have ever been. All that life has thrown at us, and fuck knows it has thrown a lot, means we are prepared for the theories of illness, the patters of medicine, the predicted in the unpredictable. But I am so scared. I am scared to be the observer rather than the observed, to know nothing or maybe everything of this woefully common horror, to have all our life experiences appear so meaningless in the face of such random acts of chemistry.

In the first two weeks crisis allowed us the momentum to do what we could. But as a timetable hastily came into view, and a routine is carved from a knife’s edge, I am having to let myself fall apart once more.  This week I had to tell myself every day ‘it is ok’ to cry, every day that ‘it is ok’ that I find it exhausting to walk to the park, read an article, walk back again or just do nothing. It is ok, it is all ok. It has to be ok.  Because at its best illness is normalised. At its worse illness is normalised. It is all so horribly normal.

It is us who have to adjust. For those who won’t or can’t when it is needed, when it is weeks, months and years from now, when it is all forgotten I fall apart, I contort, contract, constrict. I will become new, for it all to be ok.

By trying to find a balance between accepting the exhaustion of this inevitable depression, challenging the grip of anxiety and all the while trying to get my A1c down from 8. Then I might be able to face what comes. Then I could climb this new mountain.

So if it is all I can do, I promise this: I will take care of myself. On the darkest days, I will turn the blinds, I will practice some yoga, I will keep the blinds open and I will drop what needs to be dropped.

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Here


I don’t know if this is what you do.

I don’t know if this is how you act.

Or how you think.

I don’t know.

My weary friend is back. The ghost that appears when I am submerged.

The shadow that stumbles over my words.

The silent voice.

I want so much to make things better I want so much to make you better I want so much for this not to be happening.

But it is.

But so are you.

I’m sorry for this mess, this drowning in the clearing.

The rain will stop.

The mud will dry.

But I’m scared I won’t find You,

that I have already lost,

myself

Again.

That I’ve gone as far as I can go and I have yet to even leave.

My metaphors are jumbles, my thoughts are rambles,

I am slipping

But so might you…

So I will try to be direct, I will try and bite my tongue

But I don’t know if that is what you want

I don’t know if that is what you need

I don’t know I don’t know I don’t know!

 

But this is just a way of coping

Losing myself in me.

 

I know my thoughts aren’t helpful, that Electricity and Cool Waves are the thing.

So only love can lead our way

 

All You Need, all I Feel, just A Whole.

Lot(s) of love.

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What’s in a word?


“What are words worth?”

I’ve hypoed all week. Or at least I think I have. It’s difficult to tell because it’s been at night. I’ve woken with odd levels, I’ve woken with headaches. I’ve woken and can’t wake up. Last night I woke every hour to do tests. No hypos. But I know, I know, I’ve hypoed on other nights.  I don’t need a machine to tell me that, I know because I have lived in this body for 30 years. I know that I couldn’t write all week, because after hypos words become obsolete. And I know that I’m now going to have to explain myself to the powers that be, that yet again, I am behind because of hypos.

“Words to tell you what to do” 

My last A1c was 8.1. Not good. I could do better yes? I could write down my levels in a neat book and send them off to a nurse every week. I could eat a carb free diet and exercise more and throughout ensure that I’m writing my levels down and then transferring them into an email and then emailing the nurse with my hypothesis and then waiting for her hypothesis and then trying out the suggestions, for a week, and then writing them down and then emailing her back and all the time getting on with everything else that makes up my life, including the diabetes, because that’s what a ‘good diabetic’ is isn’t it? They manage their diabetes with their life. They do what is asked of them.

“Words are working hard for you”

So maybe I’m not trying hard enough. I mean before I start work every day I weigh out my breakfast, I eat a low carb diet and I weigh out food portions and check packets. And of course when I’m off to the shops or if I’m working on my feet all day I check my level and I respond either with food, TBRs or correction doses, I deal with it there and then. If after a week or two I’m still having problems I look at my basal rates and have a fiddle. Ok I confess it’s a fiddle based not on a spread-sheet, just on the mere 1296000 extra seconds that I’ve spent inhabiting this body that should have been dead at fifteen.

I should be dead. But I’m not. I’m here. Humans are brilliant because they can see other people’s problems as their own. Society kept me alive. So now what? I live, because people like doctor Banting and his research let me. But a body kept alive by society is a moralised biology. As someone living with diabetes the importance of ‘good control’ and testing has been drummed into me. I must ‘manage’ my diabetes, and if I do enough tests and changes at the right speed I will be a ‘good diabetic.’ So why is my diabetes still so ‘bad’? Is it really because I don’t email a nurse once in a while?

Maybe I have a high a1c because I am an individual. Maybe it is because it is really hard to live with. Maybe its because my diabetes is affected by the minutia of life, from hot weather, to bread, to the pill, to stress, to walking down the street at a different time to yesterday. Everything affects my body, in fact it affects your body too. Just not in the same way, because, you’re not me. Even if you have diabetes, you’re not me. But supposedly we are the same, we are ‘diabetic.’ We are our condition. That’s diabetics for you, the leftovers of a problem that was solved by insulin. Or maybe, just maybe, we are not the problem to be solved, society’s problem with diabetes is the problem.

“Eat your words but don’t go hungry” 

I’m sure you know someone with diabetes who has perfect a1cs, who sees the word ‘diabetic’ as a badge of honor and never talks about it. But I am not that person. I talk about it because diabetes is still a problem, not for me but all of us. The invention of insulin may have solved the problem of how to stop dying quickly, but it did not solve the problematic question of how to live. How to live with diabetes when you’re at work, when you have a baby, when you’re home alone, when you’re travelling, when you’re in hospital, when you have sex, when you are living. Chemistry alone won’t resolve these problems, they are not born of chemistry but of us, of society. So we have to understand society and how an individual lives in that society to solve them. The route of that understanding can begin with words. It begins with understanding that words are powerful, that they can reinforce and undermine ideas. That labeling someone’s entire existence as ‘diabetic’ ignores the holistic reality of this hidden disability. People live with diabetes, they are not diabetes. By making the effort to say ‘people with diabetes’  you’re helping to highlight the problems that remain unsolved.

“Words have always nearly hung me”

And yes disability. It’s not a dirty word. For too long a medical model of disability has shaped our ideas of diabetes. In this model empowerment is framed as ‘control’, ‘management’,  as a problem you need to fix. But disability is not what disables us.

The fact my PhD has taken longer than planned because of hypos, for example, may mean that I am affected by a hidden disability, but it does not mean I am disabled by diabetes, because I will eventually get it done. I am, however, disabled by institutions that insist I constantly supply evidence (a letter from a medical person, who rarely sees me) that I am disabled enough. That I tried hard enough. That I’m not trying to con anyone. That is disabling. It takes my focus away from my work and places it on worry. It discourages me from taking my academic career any further, or indeed my career. Because do I really want to continue to face these questions every time I try to write?

By viewing my diabetes through a social model of disability I feel empowered. It says I am not the problem, that I will finish my PhD, as and when my body sees fit, and in the meantime society needs to deal with its problem with diabetes.

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