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First adventures in binding

or forty years of being misgendered?

This may be a true thing, or it may not. Eventually the possibility had to come out into the light to be held up and prodded at. A secret kept so close and for so long and I just blurted it out to my psychiatrist at my last hospital appointment.

Did I need to say it at all? I think so. Years of therapy, years of anti-depressants have got me nowhere, certainly nowhere close to the happiness that is advertised as a ‘right’. My last/latest bout of depression seems to have just gone on and one, trying one tablet after another and getting nowhere fast. The way my local health authority is organised I had to refer myself to the ‘Healthy Minds’ service while waiting for chemical assistance from the local hospital psychiatric unit. I’m sure the staff at ‘Healthy Minds’ mean well but the practical constraints that they work under means that the most they can offer most people is 6 half hour sessions of CBT over the phone (over the phone!!) and if your score manages to fall below the threshold of likely self harm/suicide risk then they drop you as soon as they can.

In the run up to my gender revelation I had been so low that I considered suicide to be a rational option in my situation. The mystery man on the phone was telling me to keep busy, that depression thrived on inactivity … Oh, I’d never heard that before (sarcastic voice) … The telephone sessions weren’t even half an hour, the phone calls came from a noisy office where I could hear other staff gossiping and laughing in the background and the priority seemed to be completing the same list of question each time to assess your level of ‘risk’ (in the last two weeks how many times have you considered harming yourself? – not at all, several days, most days, every day) before going on to advice given by script.

Nothing was changing, nothing was going to change. It all just seemed like a box ticking exercise, the local authority showing that they were doing something. If I had an addiction they could put me on a program. If it was just low self-esteem they could offer 6 group sessions and the same for other single issue hang ups (all of these options assuming that I was also out of work and available any time). Only after you have gone through all the ‘beginner’ options with no progress is there a chance that something more tailored will be offered.

So. I was at the hospital thinking nothing was ever going to change, feeling like it didn’t matter what I said or did. I would just get better with time, or I wouldn’t.

It turned out that I saw the same psychiatrist as my previous appointment. This was new for me. They told me that they would be my psychiatrist until September 2017 (when, no doubt, the NHS would move them on). We talked. I don’t even remember thinking about it. I just made a comment that things were always worse for me in winter, that the turn of the year always reminded me of the feelings of wrongness that I’d had since being a child and how detached I was from this body of curves and fat. Suddenly it was easy to say it. To confess how every night I would go to sleep wishing I would wake up a boy, my daydreams had been full of make believe that a doctor would turn up and explain that a mistake had been made when I was born and that I wasn’t a girl. If I could wish hard enough, just wish hard enough and I would be changed. I confessed my extreme horror at puberty, not only because of the physical evidence of being female but because I clearly hadn’t wanted to be a boy hard enough for all my wishing to work.

They didn’t laugh at me. Can you believe that? They didn’t laugh. They took me seriously and asked me further questions. I was asked if I could wait to see the consultant. Of course I could. The consultant didn’t laugh at me. He also asked my questions and took me seriously. He explained the different options available to me (from therapy and staying as I am all the way up to full reassignment) … along with the warning about how long it will take to get seen at a Gender Identity Clinic.

I left feeling lighter and happier than I can remember. Giddy almost (if such a word could ever be used with me). Obviously I have a huge way to go but putting out there, starting to consider that my feelings may be real has provided more of a lift to my mood than any of the chemical supports I’ve tried over the decades. I know about all the bad things can come out of this if I take it all the way … or even any part of the way.

I don’t know how long all this will take or how I will end up. For now I have my first Underworks binders and the feeling of a permanent hug thanks to the extreme compression they give. And I have a secret weapon to help me through. My secret weapon is my husband who was neither angry or offended when I told him. My husband who only wants me to be happy and who I can only be thankful for.

 


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Isolation of depression

I sit and I sit.

People talk and I’m not sure it’s me they are talking to. Most of my conversations go on inside my head now, arguments with analogues of my husband and others.

Depression isolates completely. I cannot ask for help, I cannot ask for time or understanding because I never really feel that I’m worth any of it. So I sit and the voices I’ve created do their work on me. Even when I’m ‘well’ they are there. I assume that everyone has them, but that maybe they are better at ignoring them or their words are not so harsh.

Now I’m at the stage where I’ve dropped my therapist (one advantage of paying for it I guess) because she didn’t seem to be helping any more and the version of her in my head had joined the voices telling me how useless I am. My job doesn’t help … but at least those voices telling me I’m useless are real ones, and the only reason they are in my head is because I wear a headset at work.

Everything has to be muted, everything has to be avoided. One step distant to try and stop it hurting.

I had an operation last year to try and make some parts of my life better/easier to cope with. I don’t know if it has been successful or not. I’m under some pressure to ‘test’ the results but have been unable to do so. The cycle repeats, the loop closes and becoming unattractive, unwantable, becomes a self fulfilling prophecy. The voices are my company. Whatever you might think you are saying to me is filtered through them. How do I step aside? Step back and start again, do over and be something that you would want to be with.

The voices remind me how useless I am. How little value I have and how much better things would be if I just wasn’t any more.

Me and my voices went to see the doctor to try to get something that would work without the disastrous side effects of previous tablets (never really gave the last two versions time to work because of the side effects). In less than ten minutes. Said what I wanted and why. Left with new prescription and vague comment that I should go back in a couple of weeks so she could see how I was taking to them. She asked the question that she had to ask and the conversation kind of went like this:

Doctor: Have you considered harming yourself?
Me: Yes, nearly every day
Doctor: Will you do anything about it?
Me: Probably not, it’s just there.
Doctor: Why not?
Me: Getting up and carrying on is the habit.

No upside from the tablets yet (how she thought there was a chance of improving in 2 weeks I’ll never know). The blessed relief of sleep that they seemed to offer started to wear off after the first couple of days. Weight has started to go up. I know it’s listed as a side effect but I can hardly blame a piddly little tablet for putting all that chocolate in my hand. I know I can counter it … then get dragged into the whole ‘what is the point, no one will find me attractive anyway’.

Maybe that is how I will feel comfortable again? When my outside matches what my inside tells me I am.

I’m not writing, I’m not doing anything. The drama is all going on inside and saps my will to do anything. I don’t talk about it because the voices tell me I’m worthless, no one is interested, no one wants to know. If you step back I cannot follow you, cannot force you to talk to me about it.

Is the waiting for it to pass all I have left?

How do I recover this distance?

These things I should be saying to the person I live with. He steps back, he doesn’t know what to do. He might care but not know how to deal with me (after all, wasn’t that what the therapist was for? wasn’t that what a friend is for? surely that’s not something he should have to deal with?). Depression doesn’t make for a pretty sight.

The voices are there, the voices don’t mind what I look like. They are so kind to remind me that everything is my fault.

Depression makes us all our own special island. I’m not waving, I’m not drowning. I’m just here, waiting.

 


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Counting down the days

My contract is up in a month. I don’t know what I’m going to do. No, literally. I don’t know if I am going to be extended or shown the door.

Is this uncertainty the cause of my (current) malaise? I’m not sure. I mean I’ve clearly been unhappy for some time and I really do want this job to go well but my mood has been getting lower the longer this has gone on.

I caved in and asked my therapist if I could have an appointment. I have to applaud modern technology – I’m in the UK and she’s in Israel now but can still see her thanks to the wonders of Skype. So I sat and I waited for my appointment, patted the cat on the head and made a few notes. Here they are:

Maybe I’m actually just not suited to work? So what do I do?

  • carry on anyway? (Isn’t that what grown-ups do?)
  • keep changing jobs in the hope that I find a company that suits? (Believe me, I don’t think anywhere could be more me than this lot.)
  • change career altogether? (Yeah, like I’m good for anything else.)
  • give up and stop forcing myself to be something I’m not?

Am I just someone who will always tend toward depression / maybe I don’t have it in me to be ‘happy’?

  • why is that bad?
  • are the tablets really to help me cope or just to mask the symptoms so other people don’t see how I am inside?
  • why do people always seem to think that being with other people is something you need to do to be happy/feel better?
  • I might not be ecstatic on my own, but I’m certainly not un-happy.

What has brought things to a head now?

  • a gradual build up, reality setting in perhaps or maybe just an effect of the godawful windowless bunker I work in.
  • my inability to cope with too much uncertainty – what is going to be on the call/what is going to be the rule for the day/what am I doing?
  • a long run of co-incidental and random blues coinciding and piling in on top of the usual underlying fatigue and feelings of uselessness?
  • biology. The crappiest reason of all. I said it as a joke to my doctor but, oddly, I do kind of keep coming back to that as an option.

After my Skype session I think about what we said. I reflect on my silences and where things may be going. The conversation included the usual well trodden paths – I am a failure, I am not worthy, yada yada bloody yada.

My body is failing me. Signs of fertility that I never wanted, and that always disgusted me, are on the wane. Am I just jealous of those young people with everything ahead of them? Is it their youth, their potential … their … attractiveness?

I work in an office where young men enjoy the opportunities that our environment has to offer (well, when we get out of the bunker). Even when I was here as a student I wasn’t someone that anyone looked at. I never have been. I never will be. I’m not saying I have a face to curdle milk but I’m not someone anyone would notice. A shadow, part of the furniture … just a voice on the phone.

And now I’m fading away even from that. No one notices that I’m here, or there, or gone.

 

 


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Doing it to myself

I guess that’s what most things come down to. I do it to myself.

I write and delete, write and delete … block up completely as soon as I think of other people reading my [insert derogatory term of choice here] output.

I think therefore I stop.

I have a new job. Hoorah! It is fun and an adventure, it is in the best place I could think of being … and … then … I start thinking. It’s the same as any other job because people are the same all over. Just because they are more like me than anywhere else there are still the same elements. I’m the same. Loyal too quick, want to do well, want to be worth something, want to feel like I’m worth paying …

My condition is back (never went away really, I’d just reduced activity to the level where I thought I was coping with it). I wanted to hide it, I wanted to be accepted. I wanted so hard to just be good at something. I tried not to be me but three months in and I’m too tired to smile and I’m trapped in my head and I know I’m just making it worse.

Do you remember how you tell if you’ve got ‘flu or a cold? I heard it was that with a cold you could bend down and get that £5 on the floor. If you had ‘flu, however, you would just leave it. The new job is a contract and I get paid when I go in. To my mind I’ve left quite a lot of money on the floor and, frankly, I just don’t have the energy to do anything about it. Well, other than beat myself up over it.

Amazing. No matter how tired I get there is always enough energy left for my own scorn. A constant well of derision, a babbling brook of self loathing. You could hide the Loch Ness monster in the depths of my self loathing. All the therapy. All the talking … and then the brain fog hits and I forget the words that are clever and are my job and once I’ve fallen through the planks in the rickety pier of my self esteem there is only the deep and the cold. Always waiting.

I have tried the pep talks to myself. Even with my basic interest in maths I know how useful a job can be, and this one would be very handy to stay at. Allowing for putting money aside for holidays, a new boiler, the over-the-top and completely unnecessary side-by-side black fridge freezer (to match other appliances in same range) etc etc this is half my mortgage paid off in 4 years.

Money is no motivator.

My sister in law asked me how I thought it was going and the words came out before I knew they were there. Comparing 4 months in the house, barely speaking, barely seeing people to 3 months of interaction, laughs and ‘being worthwhile’ I found I preferred it just being me and the cat most of the time. The cat might not pay me, but equally I don’t have to cope with public transport (let’s just not go there) or the bone deep pain as I walk or the random phone calls that this job entails, or …

… or the fact that I am with people and I like them and I don’t want to let them down, or be weak, or be flaky. Some of them seem to like me. Maybe it would be easier if they didn’t.

The more people I know the more people there are to let down. I do it to myself.

UoM old

Alan Turing Building, University of Manchester

Maybe I should try to hold on to the idea of what there is outside the windowless room in which I sit. Outside is the University. Outside there are things other than me.

I can go and look at the Shabtis in the museum. Maybe to remind myself that I don’t have to be one, maybe to show myself there is dignity in accepting I am one. Maybe one day I’ll stop doing it to myself.


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When is sick not ‘sick’?

I think it’s a bad sign that even I am uncertain when I’m ill.

The thing is, ‘ill’ is my default setting so when am I ill enough to be off work? Yesterday was just one of those days.

I’ve gradually been getting slower and slower, moving around has got harder and this most unusual English weather has reduced the quality of my overnight sleep from ‘getting by’ to ‘farcical’. So, yesterday, I got up out of habit then realised nodding off again in the shower was probably not a good sign. Then came the tricky thing of trying to decide whether or not I was ill enough to ring in sick.

  • Pain in joints – check. Full set? – double check
  • Not really wanting to be too far away from toilet – check
  • Difficulty supporting body weight – check
  • Brain not working – uhuh, you betcha

And then, on top of this, is the extra little frisson of stress absolutely guaranteed to wipe me out when I have to make the phone call. I hate it. I hate admitting not just that I’m ill, but that I’m weak enough to give in to it. I hate the reaction at the other end of the phone, the “just you take it easy and look after yourself” when I don’t have it in me to believe it. I know it is meant well and I know that the voice knows I’m not putting it on. It’s just this … thing … with me

Back to where I started. When is sick not sick, when is it sick enough and when am I ever ‘better’?

My hands hurt today (typing this has not been fun), my feet hurt (hello plantar fasciitis my old friend), hips and elbows ditto. But I’m only mildly nauseous, and lying down for most of yesterday has to have done me good. Hasn’t it? Clearly I’m now well enough for work …

 

 

*Edit* 29th July – a number of revisions were suggested today. Unusual to get feedback, so I’ve been giving this a bit more thought. (Apologies if I get this wrong, some of this is literally occurring to me as I type and my shrink is on holiday.)

All the little conversations I have with myself – ‘am I worse today?’ ‘how much real sleep benefit am I getting?’ ‘can I keep running on so little?’ and my classic of ‘is this sick enough to be off sick – have precursors in my first marriage and first really screamingly obvious self esteem problems when I had no idea how bad was bad enough.

All the times I should have been confident in my own ability to decide whether or not I’m too ill for work, or have been able to tell myself to take a break; all the times there is a voice telling me to take care they can’t hear the shouting voice telling me I’m worthless.

When a sensible person would have said enough is enough I let myself be shouted at, when I should have gone I told myself I’d made a promise (“it’s not like he hit you”), when I was pushed into the cupboard (“it’s not like he hit you”), when I was so scared I could not say no (“its not like he hit you”), dropped on my head, the slip down the stairs, when he raped me (“it’s not like he hit …”).

I’ve no idea where I was in that time of fear. Just a couple of years and so many people have it much worse off than me. Even afterwards I was ashamed of my shame, no esteem for my pain.

Clearly there must have been a problem before the days when I thought it was normal to be told that I was stupid, that I would never get a good job (i.e. like him, in IT), that I was just a waste of space as a fucking arts student. And the shouting. The nonsense rants that went on and on because he thought it funny that I was so confused and small and scared and silent. And so I waited. I waited for it to be bad enough to somehow justify getting rid of him because I didn’t think I had the right.

Why did I have to wait for it to get to rape?  And then why did I pay him off just to be rid of him instead of doing anything that would actually validate me? I paid him to go away, and never mentioned it because I didn’t think I was worth the bother. I downplayed it, it was just a thing that happened that didn’t mean anything …

I got through the day in the office on Friday, I dragged myself back there again today feeling sick and tired and so very, very, old. Today was bad. Today the mantra was ‘two more days then holiday, two more days then a rest. Tomorrow the mantra will be counting down the hours while I try and make sense of what is in front of me.

When is sick not sick? When I’m the idiot trying to work it out.

 


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Sudden Cliff Collapse

I’ve been wondering how to phrase this post. In my head I have been writing it for days but have not been able to settle down to a keyboard and everything is still a bit jumbled. I should also point out that I am now having difficulty settling to anything.

Saturday 18th August we popped round to see my Dad. I hadn’t seen him for a couple of weeks thanks to a) a snotty cold and b) camping in Wales.

As he had been having chemo I had banned myself from his house as I didn’t want him to risk catching anything from me. Rather than see him I would call every day just to say ‘Hi’ and see how he was doing. That was a bit trickier in Wales as my mobile signal didn’t seem to reach the crinkly edges of the country but I found a payphone and could vaguely remember how to use it so we could still stay in touch.

Anyway 18th August and he was in good spirits and seemed relatively well (you know, considering the cancers).

19th August and he had great fun watching Man City win the first home game of the season courtesy of my brother.

28th August – dead.

Yes, dead.

What was that? About three months from diagnosis to mortuary. The chemo was doing it’s intended job of shrinking the lung tumour according to the review appointment on 22nd August. Unfortunately he had also picked up an infection and we were sent home with anti-biotics to get him on his feet again before starting another round of chemo. Three days later and he is rushed into hospital in a lot of pain. He is stabilised and we are told it was tarchycardia as a side effect of pneumonia. They will sort his heart rate, sort the pneumonia and he will be ok again.

Only, of course, he wasn’t.

The day after the fun with the ambulance, my brother got back from holiday and was able to see Dad for a short while before visiting hours finished. In the early hours of the following morning (27th, a Bank Holiday) my Mum got the call and we knew it was just a matter of time.

We sat. We waited. We took turns holding his hand. We watched his chest as he struggled for breath. Eventually my brother sent me home – he would do the night shift, I was to return in the morning so he could have a rest. There was no question of my Mum leaving.

That my phone rang before it was still fully light outside was enough to tell me what happened.

Two days later and most of everything official had been done. Under stress I can be a good organiser. I’ve been supportive for friends and family as I’ve rung round and given them the news and asked them to pass on where possible/appropriate. I’ve sat with my Mum and told her there was nothing she could have done. I’ve thanked everyone for their kind thoughts.

I have a hole in my chest where the cliff has collapsed but it could be worse. It was a shock that it was so quick. It was a relief that it was so quick.

I think he waited until he knew we were all there. He just wasn’t interested in going through the pain again and for putting us through the misery of watching him fade away to nothing. Wherever you are and however you die there is really no such thing as dying with dignity. In the end the nurses made sure he wasn’t in pain and he just stopped breathing.

I guess that was the best way to go. That is what I have to redraw my map of the world. I know I will still be sad in the future, I know that family events and anniversaries will be awful things but I have the benefit of knowing my Dad was still my Dad when his time came.


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Cartography of Cancer

It has taken a while to think about this, how to say what needs to be said.

In the manner of current NHS guidelines for clear and open communication to patients my parents have been receiving copies of all letters sent from specialists back to my Dad’s GP.

Right upper zone mass-stage T2b, N2, M0 if NSCLC
COPD

Very informative.

Scared what any of that might mean my Mum asked if I could ‘translate’ it back into something approaching English for her before she told my Dad about the letter. (I know, I know, it’s his cancer not hers but that doesn’t stop her trying to take control of everything).

I did what most people would do nowadays – I Googled it. I thought I was getting quite good at working out TNM classifications, the calm and clinical discussions of the latitude and longitude of illness. I could even show her the figures for 5 year suvival rates. They were not good but at least it gave hopes that he would be able to see another football season through.

PET scan results came through next. They showed the folly of trying to play the odds game. The lung tumour may have been stage 2 (still operable) but his spleen showed up hot. At stage 4 they have said there is no point in trying to take the lung, my Dad wouldn’t survive the operation.

Three to six months they said. Three to fekking six months for a man who, even a month ago, didn’t know – or didn’t say – he was ill.

He had his first session of chemotherapy on Monday, his second will be tomorrow.

This isn’t a cure, this is just an attempt to slow things down. I’m not certain how much can be done. Now that he is in the care of the real specialists at The Christie they are being kind to him but they are being honest. The jargon has stopped and they are speaking to him in English.

He is too weak for the more aggressive forms of chemo. He will have three sessions and on the fourth week they will take a view on whether or not there has been any response to the treatment. If there has been no benefit then they will not put him through any more medical poisoning and all that will be left will be palliative care.

If he responds to the treatment, and the side effects are bearable, then they will continue for up to eight more weeks. At best, if all goes well, they think they might be able to buy him another three to six months.

As a family we are coping in different ways, none of them seem to be particularly good but I guess that that is quite normal. My parents have been here before. Specifically they have even been at The Christie before as my sister died of cancer in the mid sixties. This time around they have been sent away with leaflets packed full of advice and phone numbers and how to get support for all aspects of the illness and the grief that is to come.

I think that first time round they got nothing and have struggled with the effects of the grief ever since. In the sixties it may have all been stiff upper lip and keep calm and carry on left over from the war. That was the environment I was born into and I’ve never really been comfortable with emotions. The stats and the charts and the TNM I can get my head around. The thought of my Dad just not being there and, more importantly, the thought that he may suffer in the process, is something that I have no answer to.

My job has always been to fix things. I can’t fix this.