’And if I only could
I’d make a deal with God
And I’d get Her to swap our places
I’d be running up that road
Be running up that hill
~ With no problems..’
I’m not sure what Kate Bush had in mind when she wrote that song, those lyrics, but they really speak to me. I feel I’ve been running up that hill forever now, getting nowhere. It isn’t getting any easier, and I really wish there was a way to swap places, to make that deal. I’ve been running up that road for so many years, but nothing has changed. Lots has happened, but nothing has changed.
Last night was the 21st anniversary of the very first time I tried to end my life. I was seventeen and I didn’t know how to make the abuse stop, didn’t dare communicate what was going on – what had been going on for as long as I could remember, because I didn’t know what would happen if I did. So, at the very end of my mother’s 50th birthday I swallowed a cocktail of random anti-depressants, mood stabilisers, sleeping tablets and painkillers. This was before the internet, before you could google your way to the perfect concoction to put an end to your misery, and as a consequence I survived.
I woke up to a whole new world. One where – in a flurry of activity – suddenly lots of people knew about the abuse. Social services got called in. I remember so well how the head of social services – who just happened to be a close friend of the family – told me that ‘No one is allowed to make you do anything that you don’t want to do. Ever.’ Except, of course, that I would have to talk to the police and I would have to go to court, whether or not I wanted to, because those were not things I had the choice to opt out of.. You see where I’m going with this? Something happened, but nothing changed.
I’ve been in therapy for years and years and years by now, and although I firmly believe that talking about what happened – in a safe environment with a therapist sensitive to my needs [as opposed to at a police station or in a court room] – is key to ultimately reducing the traumatic re-experiencing of abuse that I am faced with every time I have a flashback, it feels as if that day is very very far away. Hardly even a blip on a distant horizon.
I know that if I manage to find a way to keep running up that hill – because, trust me, therapy can be such an uphill run – my day to day life could be greatly improved, in terms of the amount of flashbacks I suffer, in terms of being able to make and keep plans, in terms of feeling more in charge of my life. And that would be great. It really would.
But then there is that other thing. The Not Having Children.
No amount of therapy can change that. I could do therapy every day for the next two thousand four hundred and sixty-eight years, and that fact would simply not change. People are forever telling me that ‘No, that wouldn’t change. But, you might change. You might feel differently about it.’
Only I know that I won’t.
This is a wound that cannot heal. There are constant reminders to keep that wound open and bleeding. Three people in my life are currently pregnant, due at various points next year – so I already know that 2015 will be another year of Everyone Else having children. Another year of tears burning my skin as they roll down my face. Of a pain so sharp it shreds my soul from the inside..
And the problem is that every year is going to be A Year Like That. Until it turns into endless years of Everyone Else Having Grandchildren. And I can’t face a life like that. I just can’t.
Even if I managed to somehow accept that I won’t have children, I just can’t accept a life without them.
I will try, as I have been trying. But, I know that one day, soon, I’ll run out of steam. And I’ll stop running.
It is sad.
But it is what it is.
Running Up That Hill [A Deal With God] Copyright © 1985 Kate Bush
I thought I’d make one final push to get an update out before the end of the year. I’m not in a great place, hence radio silence on most channels, but sometimes that’s when the best blog posts come out, so let’s hope for the best. Could be nothing, could be something.
It’s been a rough year. There are no two ways about it. At the beginning of the year I ended with my therapist of five years and started over with a new one. It’s a big transition, moving from A. to P., and a huge emotional undertaking. It’s a bit like being asked to switch out your parents. Sure, your parents might not always get you, might be unfair, might make mistakes, might be downright unsuitable to parent anyone, but at least you know them, right? You know their habits, their triggers, their blind spots and you know how they react to the things you say and do. And you also know how you react to the things they say and do. It’s that comfortable – if often less-than-ideal – Familiar versus the scarily unpredictable Unknown that I’ve written about so many times in the past.
That was pretty much what I was going through with A. at the beginning of the year, as we slowly neared and then reached The Ending. Things had been running along the heading-for-an-irreparable-relationship-breakdown route for some time – probably for far longer than I was ready to admit to you, or myself, at the time – but at least I knew what to expect, knew when odds were that my words would be met with silence, knew when there was potential for disappointment. I also knew what not to say and what not to do to keep the status quo, to keep us from falling off the edge. In addition, I was standing on the bedrock of our previous years together, all the times we had communicated really well, spoken a similar emotional language. I had a good sense of where we had one another, of how big or small the distance between us was at any given time, how close we could get, how much trust there was and where the boundaries of our relationship were; all those things that had made our work together so meaningful and fruitful for such a long time. So, it was with a lot of sadness that I had to accept that the time for us to part ways had come.
I had met P. only once before we actually started our joint therapeutic journey. Fifty shared minutes during an initial consultation to decide whether or not we could be A Match. I left that first meeting in December last year feeling that, yes, she could potentially be someone I could learn to trust, given enough time and space to Thoroughly Test what sort of stuff she was made of. But, apart from that gut feeling I didn’t know much about her [or attachment-based therapy] when I went for my first real session in February. I knew that there was something about the way she actively sought to make eye contact in that first meeting that both scared me beyond reason and made me feel that she genuinely wanted to get to know the real me. Actually, let me rephrase that: the way she actively sought to make eye contact with me scared me beyond reason, because she so clearly wanted to get to know the Real Me. Not just the Me she could glean or guess at from the polite introductory phrases or the bullet pointing of my fragmented, chequered and often painful past during this initial meeting, but the Real Me hiding behind all that – the Me that only comes out after the Thorough Testing has been done. The Me that even A., after nearly five years, was only just beginning to get to know.
I took the plunge, and it turned out that the water was far more calm and warm than I had expected. As K. put it only the other day: ‘When you finished with A. I didn’t think you’d ever be able to build a relationship with another therapist. I thought the trust had been shattered for good. I’m amazed at how quickly your relationship with P. has developed.’ I get exactly what K. meant, because it was what I, myself, was thinking at the time. How would I be able to trust? Why should I?
I suppose the answer to that lies in the way P. is, really. I wasn’t at all ready to trust, and P. was able to accept that completely, without any expectation that this would change. Was able to meet me where I was at. She was able to accept that I simply didn’t know if I really wanted to go on with therapy, or even with life. The exact thing that had ultimately caused the breakdown with A. The very thing A. had made clear she couldn’t accept; that I may not only feel that life wasn’t for me, but that I might actually act on it. P. made me, almost immediately – without the Thorough Testing – feel that this was a part of me she could accept. She in no way gave me license to act, but she simply accepted that this could be one of the paths our journey might take.
Then, of course, only a few months later this was put to the test. A splash of a toxic chemical on my tongue, the swallowing of some tricyclics – which I still to this day don’t remember taking – an ambulance ride from the women’s crisis centre to A&E and eleven hours in a coma.
Some might say this was part of my Thorough Testing. I’m not going to argue for or against. All I know is that we survived it: P. didn’t break, didn’t conclude that the reality of acting out was so different from the theory and phantasy of it that she could no longer work with me.
And our relationship grew a little stronger.
The aftermath of this overdose – along with a previous, more serious, intake of that same ototoxic chemical – was the loss of most of what remained of my already damaged hearing. Another big thing to deal with; the knowledge that my actions would have a lifelong effect – near deafness. But, also, in a backwards kind of way, the realisation that even when I mess up it is still within my power to do something about it; the decision to hop on the not-so-joyful steroid ride, the slight but miraculous recovery of some hearing, the sorting out of hearing aids [even though it at times makes me feel I’m ninety-something rather than thirty-something].
And all year long this journey has of course been fenced in and intercepted by flashbacks, by horrendous memories of a past that is never really in the past and by nightmares that don’t go away just because I wake up. Post but-never-quite-over traumatic stress disorder. The stuff that makes day to day life all but impossible to plan. The never knowing if a day will be a 40, 100 or near continuos flashback day. Making plans, cancelling plans, scheduling and rescheduling – because I simply can’t know in advance if any given day will be one where I can leave my house without putting myself at risk.
At the moment it seems worse than usual, more 100-a-day days than 40s. I went to visit my father for the first time in two and a half years at the end of November. That may have something to do with it. I don’t know. It might be related to the fact that both P. and K. have now gone on their respective Chrismukkah breaks, leaving Little S. feeling sad, scared and abandoned, and Adult Me struggling to cope in their absence. Or it might be chance. But, whatever the reason, it’s not so easy to deal with.
Anyway, I want to take the time to thank all of you who have faithfully stuck with me through the ups and downs of this year, in spite the updates being few and far between. It does make such a difference to me. It touches me deeply every single time one of you takes the time to post a comment or write me an email to share a bit of your Selfs with me. I know that is how most of my replies to your communications begin, but it is for a good reason: it’s the truth. I am very grateful for your support.
So, wherever you are in your lives, whatever is going on for you right now, good or bad, I do wish you all the very best.
So, I took the steroids for four days and I completely flipped out, disappointing a lot of people along the way. All for nothing. There was no chance that taking the medication for only a few days would do anything at all to reverse my self-inflicted hearing loss, considering even with the full course the odds of a measurable positive outcome was slim in the extreme. It was a complete failure.
Except when I went to the audiologist to have moulds made for my future hearing aids about two weeks after the steroid drama, a final hearing test was done and to everyone’s amazement it turned out that there had been some improvement. Not in both ears – there was no change at all in my left – but hearing in my right ear was almost exactly back to where it had been back in May! It’s impossible to say if this was down to the steroids or some sort of freak natural reversal, but the tests were clear. Yes, my hearing loss was still severe enough to warrant some serious hearing aids [none of those tiny, invisible, in-the-canal domes for me], but this regain of hearing in my right ear means that a cochlear implant may not become necessary.
I felt as if God was smiling at me!
[My far wiser friends have since reminded me that God is always smiling at me; I’m just not always all that receptive to it].
About a month later – three weeks ago today, actually – I went back to the audiology department to pick up my brand new hearing aids. The audiologist popped them into my ears, did a bit of fancy-schmanzy computer twiddling and, finally, switched them on. I took a deep breath, mentally recited the shehecheyanu and BANG! – just like that I had Spiderman-like hearing. The most emotional part was hearing the sound of my own voice again. I wasn’t born deaf, so I’ve obviously heard it in the past, but it’s been quite a long time since I’ve been able to hear it. For a long time I’ve only really been able to feel the vibrations of my voice when I speak rather than actually hear it, and it was a pretty overwhelming sensation to hear myself again. It was something of a shock to discover that it didn’t sound at all as I remembered it. It sounded tinny and harsh and extremely loud, reminding me of how it sounded when I as a child would hook my father’s microphones up to the stereo and speak into them. Every time the audiologist asked me a question I had a Cheshire grin on my face, because it was so completely rocking that I was able to actually hear him – even when he was turned away from me! – and every time I answered his questions I jumped at the loudness of my own voice. The audiologist did a bit more twiddling and tested my reaction to him opening and closing doors and windows etc, to see that it wouldn’t be painfully loud. As he put it: ‘It will be annoyingly loud, but it shouldn’t be painful’. There are so many sounds that my brain has not picked up for a very long time, and to the brain any new sound is automatically processed as ‘important – needs to be actively listened to’. I have been told that it will take possibly upwards of three months for my brain to retrain and figure out which sounds are important and which sounds are merely ignorable background noise, because it is in essence rebuilding the sound filtration system from scratch.
I won’t lie – having the hearing aids is both totally amazing and incredibly difficult. It’s super cool to be able to hear things, but it is also quite disorienting when people walking past my house sound as if they are in my room [not great for someone with PTSD who is already on permanent high alert], and it can be quite tiring when just brushing something off my clothes sounds like a major earthquake.
In the first two weeks I found it quite overwhelming and confusing to hear my own voice, because it was still sounding tinny and foreign to me – as if someone else was speaking my thoughts, and I really missed not feeling the vibrations anymore [I suppose by brain was too busy processing the sound of it, to also allow me to experience the physical sensation of it], but now – three weeks into wearing my hearing aids I’ve got used to what my voice sounds like – it no longer sounds distorted – and I can once again feel it in my throat and chest, which is reassuring.
A lot of sounds are still very loud: refrigerators, traffic, people coming and going, but I suppose that eventually those sounds will fade into the background. When I first stepped out of the hospital I felt as if the world was assaulting me with its sheer loudness, but, in the midst of sirens and buses and people talking on their mobiles I picked out a sound I hadn’t heard in a very long time: the sound of a bird chirping.
I suppose you have to listen out for the really good stuff, in the same way that you have to actively tune in to sense God’s smile..
And the other week, when visiting my sisters, I had ample opportunity to practice this; as annoying as the sound of my sisters’ kids rummaging through boxes of Lego and train tracks was, being able to hear their little voices when they excitedly called out for me made it totally worth it! It was ace!
The journey is of course far from over, I’ll have a re-tune of my hearing aids in a few weeks where the volume will be turned up even louder, but all in all, I am really glad that I finally made the decision to do something about my hearing.
There I was, having been told that there was a good chance that my hearing loss was due to my own actions. Not an easy thing to deal with. Part of me absolutely felt angry with myself, was blaming myself; I have a natural tendency to be very hard on myself – especially when the consequences of my actions turn out to be severely negative. But, there was also another part that just felt confused, because whilst the second most recent overdose was certainly a serious one, the most recent one was one where I didn’t ingest more than about half a teaspoon of the chemical, and I couldn’t quite understand how it could have had such a drastic effect on my hearing. But, clearly it had.
The ENT specialist had prescribed a high dose of Prednisolone which I was to take for a week in the hope that it may reverse some of the recent hearing loss. The name of the medication did ring a bell at the time, but not loudly enough for me to clock why, so I went down to the hospital pharmacy and picked the medicine up. It wasn’t until I got home that I remembered that this was a medication which a previous GP had refused to prescribe when my asthma was really bad, because she felt it was too much of a risk, putting me on it. There were two reasons for this: firstly, that people with a history of serious mental health issues are particularly prone to react badly to this medicine, and, secondly, that I have in the past had extreme adverse reactions to three other medications [one of which I was reacting to when I took the second most recent overdose], so the doctors are always very cautious about prescribing any non-essential new meds to me.
But, there I was with the medication in my hand, not knowing whether or not it would really be a good idea to take it. Yes, this medication could potentially save me from needing cochlear implants down the line, but, at the same time, if I did have a really bad reaction I could end up putting myself at considerable risk. The ENT specialist wasn’t someone who knew me well [or at all, really], so when he prescribed it, he did it on the same premises he would for anyone else; ‘Worth trying, no harm done if it doesn’t work’, whereas I knew that this medication could spell real trouble for me.
There was a part of me that was genuinely scared of a bad reaction; I knew perfectly well the horrible feeling of being out of control because of a medication. I had been through it three times.. Yet, there was another part that so badly wanted to be able to do something to reverse the damage I had apparently caused.
I spent a week going back and forth, unable to decide what to do, talking it through with lots of people, knowing full well that, ultimately, it was still my decision to make. I did speak to my GP [well, technically, the receptionist spoke to her on my behalf], and she said that it would be ‘perfectly fine’ for me to take the steroids, and – after all – I had had no adverse reactions to the steroid injections I was given when treated for anaphylaxis.
In the end I decided that I would give it a go, because I knew that if I didn’t I would always be wondering ‘What if..? What if..?’.
Still, to be on the safe side, I decided to start the course early Monday morning, so that if I did have a bad reaction I would be seeing P. later that day. [With two of the three medications I had previously reacted badly to, it had happened literally within a few hours of taking the first dose]. I also had a doctor’s appointment on Tuesday, and scheduled a ‘just-in-case’ appointment with K., my synagogue social worker who I have been seeing semi-regularly, for Wednesday afternoon.
Monday came round and I took the first dose, which – as this was a high dose treatment – was a good handful of pills, making me feel as if I was actually overdosing on tablets. By the time I was due to see P. – about six hours later – I already knew something wasn’t right. I could feel things firing in my brain, rapid electric sparks in my head, and it was as if I couldn’t keep track of my own thoughts. It was a truly bizarre experience. – Anyone who has ever been seen by the mental health crisis team knows that one of the questions you will be asked during the assessment is ‘Are you having racing thoughts?’. Being prone to deep depression and suicidal ideation rather than mania I have always answered ‘No’ to that question, not really knowing what ‘racing thoughts’ actually were. I’m telling you, by noon that Monday I knew exactly what they were – and it was freaking me out, big time!
So, I had a crazy rambling session with P. that day, very unlike any other session I have ever had. I also spoke to H., my care coordinator, that same afternoon and she sorted out a referral to the crisis resolution team for Wednesday, as it was clear I was not in a good way and would likely need the extra support, particularly over the weekend.
On Tuesday morning I went to see the doctor – an absolutely lovely F2 who I hadn’t met before. By then I had taken the second dose of Prednisolone – more out of a sort of manic compulsion than anything else – and consequently the reaction was getting worse. I had also used a surgical scalpel and cut myself very badly in two places; enough to warrant stitches. The doctor’s reaction was ‘Come off these meds immediately – this is a really serious and abnormal reaction!’.
I explained to her the reason why I was on the treatment in the first place and why I was finding it hard to ‘just stop taking the meds’, and this young doctor was absolutely brilliant. She sat back and listened to me carefully and then took the time to make five or six phone calls – while I was still in the room – to get hold of an ENT registrar to find out what the implications of stopping the treatment would be for my hearing, so that we’d be able to make an informed decision. The ENT registrar told her that as treatment had been delayed by several months already [Urgent NHS referral, remember?] it was unlikely that my hearing would improve, that the specialist who prescribed the steroids probably felt it was worth a shot – even if it was a shot in the dark – because sometimes people do respond, even with delayed treatment. But, the registrar concluded, in light of the extreme reaction I was having it certainly wasn’t worth staying on the meds, as the odds of success were so small.
I felt really reassured in that moment that I wouldn’t be missing out if I ended treatment prematurely, because the odds of any improvement were so small. It made complete sense to stop taking the meds.
But, then I got home, and I was still hyper and there was so much in me saying that firstly I was already dealing with the adverse effects of this medication [the GP had explained that it would more than likely be a few days, maybe even a week, before the chemicals in my body would stop messing with my brain].. and it was only a few more days to go.. and what’s to say that I couldn’t have an equally abnormal positive reaction to these meds..? After all, my body is clearly highly sensitive to small chemical changes..
So, the next morning I took the third dose, against medical advice. This time it wasn’t manic compulsion that made me do it, but that part of me that just needed to hold on to hope, that simply couldn’t give up, even though everyone around me felt this was a very bad decision, indeed.
I spent time in my session with P. that day, exploring why it was so terribly hard for me to stop taking the tablets, even though the rational part of me knew that the chance of a positive outcome was incredibly slim – and that was really helpful, even with the chaos raging in my head.
I also had a good chat with K. that afternoon. She was characteristically open, direct and honest with me both about her anger and her disappointment that I had carried on taking the medication in spite of what the doctor had told me, and in spite of the fact that I had felt completely reassured at that point that I wasn’t missing out. I told her that I would think very carefully about handing the meds in to P. the next day, but I was also clear that I wasn’t prepared to make any definite promises, because I simply didn’t feel that I could. So much of me felt out of control and I just couldn’t say that I’d be able to do that, come morning.
Oddly, the thing that made me realise just how out of control I really was wasn’t the fact that I had cut myself so badly, but the fact that I found myself at a McDonald’s having a Big Mac.. I’ve been a vegetarian for something like twenty years, and I keep sort-of-kosher, so for me to sit down and eat something like that goes against so much of what I believe in. It is something I simply wouldn’t ever do, if I were in control of my actions..
I did end up giving P. the tablets the following day, but not before having taken a fourth dose that morning, this time – again – in a very compulsive manner. There was no reasoning whatsoever, just acting: I simply couldn’t not take them. This made me realise that I really needed to view the tablets in the same way I did my scalpels and cords [all of which I had handed in to P. two days earlier, feeling too out of control to be safe with them]; while I was still having this strange reaction I just couldn’t manage the tablets responsibly.
It took a good while after that final dose before I felt completely back to my normal in-control self, and I carried on working with the crisis resolution team through the weekend and most of the following week, just to be safe.
I am really glad that I had as much support available to me as I did during this time, because it was incredibly frightening to be so out of control. The experience was very different to other times when I have felt out of control. Whilst what came out in the midst of this whole ordeal – feelings, thoughts etc – were things that were almost certainly already brewing inside, it was – at least the way I look at it – triggered by outside factors. And that’s quite a scary thing.
All the very best,
A lot has been going on in the last few weeks [or is it months?] since my last proper post. There have been some serious ups and downs, and I don’t quite know where to start.. So, I’ll just start with what’s on my mind right in this moment: my hearing. Or, rather, the lack thereof.
I’ve not really written about this before, because up until about a year ago, it’s not really been too much of an issue, or at least it has been an issue I have had the luxury of being able to ignore.
As my long standing friends will know I lost a big chunk of my hearing many many years ago, when I was about twenty. I was doing voluntary work at an orphanage in a village outside a village outside another village, in the Middle Of Nowhere, India. It was Diwali, the Hindu festival of light, and as a special treat for the children we had bought fireworks and penny crackers, which they were allowed to set off. All was going great, big bright smiles all around, lots of happy dancing and singing.
Until one of the kids threw a firecracker up in the air and it exploded right next to my left ear. My whole world went silent in an instant. It was one of the most terrifying experiences of my life, that sudden and complete absence of sound. I remember screaming, but not being able to hear the sound of my own voice.
Over the next hours and days some hearing in my right ear did come back, but the hearing in my left ear was almost entirely gone. I managed to see a doctor when I went into town a few days later. He very carefully examined my ear and hearing and confirmed the damage with a simple “This is not good” and a slow, sad shake of his head.
And that’s pretty much how it’s been until recently. I knew I could probably be helped by wearing a hearing aid, but I simply wasn’t ready for it, and since I was able to use the remaining hearing in my right ear well enough to compensate for the loss in the left, I just left it at that. Something was broken, but not enough to bother fixing it.. There has been a lot of “If you want me to hear you, you’ll need to walk on my right – if you’re only going to talk rubbish, stay on the left” going on over the years, but all in all, through a combination of lip reading, context deduction and plain ol’ guesswork, I’ve been able to fake hearing pretty darn well. It’s amazing how easy it is to just laugh when everyone else laughs at the end of a joke you haven’t even heard, or to cover up giving the wrong answer to a question..
However, a bit over a year ago I started noticing that I was no longer as able to compensate with my ‘good’ ear as I used to be, and – being fifteen odd years older – I decided that it was kind of silly to routinely pretend being able to hear when I couldn’t, and that I should really do something about it. So, I went to have a test.
The results were shocking; not only was the hearing in my left ear really poor, my right ear was also significantly worse than I had thought. I was advised that I was a prime candidate for double hearing aids, and that I should get my GP to sort out a referral [private hearing aids are horrendously expensive].
A number of months later I was finally given an appointment at an NHS hospital. Only by the time I had that second round of hearing tests there had been a distinct further drop in my hearing, particularly in my right ear, and as this wasn’t normal I needed to be seen by an ENT specialist. The audiologist told me that this kind of drop could quite possibly be down to an acoustic neuroma – a fancy way of saying that I might have a brain tumour affecting my hearing. Consequently, an Urgent Referral to an ENT specialist was made. For those of you who don’t know, an Urgent Referral in NHS/ENT terms means ‘probably around three months’. Thus, I spent three months trying to not give myself cancer by worrying about this possible tumour, while not being able to hear what people were saying, since hearing aids can’t be issued while you are still under investigation.
The three months passed and I very nervously went for my appointment, having absolutely no idea what to expect. It turns out that in those three months since my last appointment a second drop in hearing had occurred. More bad news. On some level I kind of knew this, but I had talked myself into believing that the drop was ‘just in my head’, that it was simply down to a higher awareness of my hearing loss, having now stopped pretending to be able to hear when I can’t – but – the audiogram clearly showed that this was a genuine drop, and not something I had imagined.
The ENT specialist sat me down and took an extremely detailed medical history, after which he concluded that it was exceedingly unlikely to be an acoustic neuroma, as only 13 people in 1,000,000 have them, and that my sudden sensorineural hearing loss [SSNHL] was far more likely to have been caused by my two most recent overdoses, as the drops follow that pattern precisely, and the chemical I had taken is well known to cause hearing loss in those who survive the overdose.
Needless to say, to me, this was quite a powerful emotional bombshell. I had been medically cleared after those overdoses and there had seemed to be no lasting damage.. But, clearly, this was not so, and I was now seeing the consequences of my actions in black and white.
The ENT person said that it was possible that the SSNHL might not be permanent, and that a short, high dose, course of steroids might jump start some hearing cells in my ear, partially reversing some of the loss. Ideally this kind of treatment is given within days of the hearing loss occurring, rather than months later, so it was in no way certain that the treatment would work, but he felt that it was definitely worth giving it a go, because whilst there wasn’t really anything to be done about the hearing loss caused by the initial blast trauma, there was still a slim chance that the more recent drop could be helped. I’d still need hearing aids, he told me, but I might be able to avoid cochlear implants further down the line.
I’m going to end this update here, simply because this is already a massively long post, but, I will write more about what happened with the steroid treatment and my hearing in the next few days.
I feel very aware that I haven’t really talked about the emotional impact of not being able to hear, or the fact that part of my hearing loss may have been caused by my own actions, and I hope that I will be able to touch more on that in the second part of this saga, because – of course – this is a big deal.
Until then, do be kind to your Selfs.
PS. I’ve yet to sort my PC out, so I do apologise if the formatting of this post is a bit rubbish; it was all typed on an iDevice, and that’s a lot fiddlier than one might imagine..
A little bit of art until I find the energy to sort my PC out so I can post a real update..
I often use art as a tool for expressing myself. Especially when it comes to things that can’t ever be fully expressed, because I don’t fully understand it myself. To me, colours, textures, light and shadows evoke their own feelings and I try to use that in my art.
The bottom one I used in therapy the other day. I had been talking about the court case against my brother and had a lot of feelings floating around inside of me, but lacked the words to adequately describe them to P. [or even to myself], so when I got home I made that painting and brought it with me to session the next day. Together we managed to find some words to go with it.
“Lily, oh Lily – I don’t feel safe
I feel that life has blown a great big hole through me.”
And she said,
“Child, you must protect yourself,
You can protect yourself;
I’ll show you how with fire..”
I have had my first two post-summer break therapy sessions now. And it has felt, well.. strange. Both on Monday and today I found myself uncharacteristically tongue-tied at the beginning of session. [I am often silent during the first few minutes of a session, but I don’t often feel that I can’t speak]. There were plenty of thoughts and feelings buzzing around, but I just didn’t seem able to catch hold of any of them to translate into words.
In the very first session I was initially completely overwhelmed by how powerful the relief of seeing P. was. I hadn’t expected to have quite such a strong emotional response. I could almost physically feel Little S. doing backflips in sheer joy at the sight of P. in her chair. Back where she belongs.
And, at the same time, there was a real urge to withdraw and protect myself from anything and anyone who wasn’t me. To go to my island, the one that is so tiny that it only has room for me. The one where I feel safe in the knowledge that no one else can get to me.
See, that’s the funny thing about Little S.; as happy as she was to see P., – and she was very happy – she is also naturally suspicious of others. Just because P. was back and everything seemed alright, it didn’t necessarily mean that Little S. would readily take that at face value. So, she went from being absolutely delighted to have P. back to ‘You disappeared on me, so I’m not quite ready to trust you yet’ in seconds flat. You see, Little S. is – as I explained to P. in today’s session – a lot like Little My of the Moomin Valley; there is only ever enough space for one feeling at a time and she can go from one to another in no time at all. One second ‘overjoyed that P. was back’, and then – boom – ‘suspicious that she might do another disappearing act’.
P. suggested that maybe Little S. is quite angry with her – or even really angry with her– for leaving her to fend for herself while she went on a nice long break. As soon as P. said that Little S. – sensing danger at being called on her negative feelings – had to go into hiding, and Adult Me was left to explain that Little S. wasn’t quite ready to deal with those feelings yet, [“Little S. has left the building”] even if P.’s guess was probably spot on and Adult Me would have liked to have been able to talk about it, together with Little S.
At the beginning of today’s session, while still in Unable To Speak-mode, I became aware that there was a song playing in my head. It seemed unlikely to be chance that that particular song had decided to play, so I shared a few somewhat random lines from it with P.: “Child, take what I say with a pinch of salt, and protect yourself with fire”. At the time I felt very aware that I was leaving out two lines about feeling unsafe and being afraid, but as I am writing this now, I am thinking that maybe that’s not the end of the world? I have another session tomorrow, and if I want to, I can mention making that choice – so we can look at the reasons for consciously leaving those oh-so-revealing lines out, or I can leave it as it is, because even though I missed out parts of the lyrics, we kind of managed to touch on the themes of not feeling safe anyway.
We also spoke about feeling unsure if this need to protect myself through withdrawing [from P.] is something I – or at least Little S. – genuinely needs to do in order to cope, or if it is something I now do per automatik, unquestioningly and without thinking, because it is what I have ‘always’ done.
I suppose that this is a constant battle for me; striking the right balance between being mindful of Little S.’s needs, and challenging her to take tiny steps forward.. It is also, admittedly, a struggle at times to manage Adult Me’s frustration with the amount of time Little S. needs to take any little steps at all. I often find myself having to repeat the mantra that ‘baby steps are also steps’ to Adult Me, because if she had her way, she could quite easily race ahead at a pace neither Little S. nor Adult Me is ready to cope with..
All the very best,
Lily from the album The Red Shoes. This video features in Bush's short film The Line, The cross and The Curve. Kate Bush © 1993
It is far too early on a Sunday morning for me, or indeed anyone, to be awake. But, I am. Anxiety is stretching my nerves to the point of breaking, and I have been unable to sleep for about forty hours. Insomnia isn’t out of the norm for me; it is part of my pattern. But the anxiety is. Or, at least, the level of anxiety. I can feel the extreme imbalance of the chemicals surging through my system, splashing around, crashing into each other and the rocky shores of my insides that have until now been unknown to me. The inner landscape of my body is soaked, drenched, in acidic anxiety, and I can’t think of how to rid myself of it, how to alkalise.
I know that I can and will get through this. I have survived it before, and I will again. It is just that the strength of emotions have taken me by surprise. Yes, I was nervous about this upcoming break in therapy for weeks before it started, but I thought that perhaps this time might be different, because, in contrast to many other breaks, I – we – P. and I, had spent so much time talking about it, preparing for it, putting in place things to make it more manageable. And I, foolishly it seems now, thought that that in itself might dull the sharpness of my feelings. But it doesn’t.
I miss P. terribly, and even though I have talked to my friends about it, and many of them have responded with empathy – more so than in the past, it seems – I am still left feeling that no one really understands the depth of my emotions. Or maybe it is a sense that others expect Adult Me – the intellectualising, reasoning, part of me – to handle this, to take charge and make it all OK, for all of the different parts inside of me. Truth be told, I think that even I expect her to.
But, what happens during a therapy break – a break from my pseudo parent – is that Little S. – not Adult Me – is the one who is reacting to this separation. Adult Me can watch, but can do nothing about that, because Adult Me wasn’t there when the fear of separation and abandonment, was born. Adult Me hadn’t yet been formed when Little S. – or even before then – tiny Baby S. were dealing with life in a world where there simply was no stability, where her parents gave her up and left her to fend for herself, completely void of tools with which to do so. Because of this, the reassurance Adult Me is continually trying to offer rings hollow to Baby S., in exactly the same way reassurance from anybody else does. Adult Me may be one of many parts that forms the whole of me, but she wasn’t there when it happened, and as far as the Littles are concerned, she doesn’t get it any more than my incredibly kind and well-meaning friends do. Not emotionally. And Little and Baby feel just as nakedly defenceless as they did back then.
Of course Adult Me has acquired lots of tools over the years to deal with situations like these. And during normal, daytime, hours, she makes the most of those tools and is often successful in temporarily alleviating much of the fear and anxiety. But when the rest of the world goes to sleep, and Adult Me is exhausted from a day of constantly trying to soothe those Little parts, when she needs a break to stock up on supplies, that’s when the primal scream of Baby S. sounds the loudest, deafening all intellectualisation and reasoning.
Baby S. was about six months old when she was adopted, when she came to live with her new parents in Sweden. No one knows, and Baby S. can’t remember, what happened in the six months before then. But the emotional echoes of the feelings born in those months still bounce between the walls of her outer shell, and when something like this – a separation, a perceived abandonment from a care giver – happens, those echoes amplify and drown out everything else. The echoes are always there, even in peacetime, noticeable in the fear of forming attachments with others and the difficulty in trusting, but when an actual separation happens something explodes in her, because just as Baby S. couldn’t know at the time that that abandonment would be temporary, she is now – still – blind to this fact. Baby S. only knows the here and now, isn’t able to look to the future, so when Adult Me, in sheer exhaustion, takes a break from reassuring Baby S., Baby S. thinks that this will last forever.
I wrote an email to P. a few weeks prior to her going on her summer break, about the whole How to cope with your therapist abandoning you for a minor eternity-issue, and as I am writing this now, it strikes me that that is exactly what I am dealing with: a minor eternity. It is minor in the eyes of the world, even in Adult Me’s eyes, but to Baby S. and Little S. – both of them too young to understand the concept of weeks or days or even minutes – it is an Eternity. And eternities have no foreseeable end.
As I wrote at the beginning, I will get through this separation, just as I have got through separations in the past. But in order to help Baby S. and Little S. I need to remind Adult Me to deal with them gently and patiently in the understanding that they have not yet got as far in the healing process as she has. They will get there eventually, but it will take more than the survival of a few therapy breaks for them to feel safe enough to integrate fully, to get to a place where The Whole can begin to work as a single entity, rather than as a multitude of frightened independent parts.
So, I say to myself, as much as I do to you:
be kind to your Selves.
Had my final pre-therapy break session yesterday, and it was hard. Or, maybe hard isn’t the right word? It was emotional. Not emotional as in floods-of-tears-streaming-down-my-face-fifty-minutes-straight, but it certainly stirred things up inside of me in a big way.
So, P. and I spent most of the session talking about all the different feelings this break is bringing up for me. How it makes me feel like the abandoned, forgotten baby I once was, the distant echoes from when I was tiny and was given up by my birthmother, and how – even though I have no conscious memory of it – that must have had a profound effect on me. I also retold the story that my mother [technically adoptive mother, but it’s not a term I ever use; she’s just my mother] has told me so many times: that about two or three weeks after I was adopted my mother was downstairs doing something with my brothers, and she completely forgot about me. Not as in ‘she forgot that I was upstairs in the baby swing’, but as in ‘she utterly and completely forgot that I even existed’. My mother tells this story as a bit of an amusing anecdote, but of course, there isn’t really anything very much fun about it at all: I had already been given up once and then only a few weeks later my new mother also forgot that she had a baby to care for..
We also talked about how I simultaneously fear it will be an incredibly difficult break and that it won’t be difficult at all. That it, paradoxically, is easier to deal with the idea of finding this break an immense struggle, than to cope with the idea that it mightn’t affect me much at all. Because, if it isn’t difficult, if it doesn’t affect me, what does that say about P.’s and my relationship? Of course, it could just mean that I have simply developed better ways of self-soothing than during previous therapy breaks, but, knowing myself, I am far more likely to jump with instant certainty to the conclusion that it must be because P.’s and my relationship isn’t really all that special after all etc etc etc.
Last week P. gave me a few suggestions of things we could do to make me feel less abandoned during this break, to allow me to hold on to her even when I’m not actually seeing her. One of her suggestions was to give me a recording of her voice for me to listen to, if she started feeling too distant in my mind. I rejected that idea right away, stating that it wouldn’t be all that useful, considering how poor my hearing is, all the while knowing that that wasn’t the reason at all, but rather that something about having a voice recording felt too close and too scary for me to cope with. Another suggestion, in a similar vein, was that perhaps it would be helpful if she were to give me a photograph of herself to look at. This led to me coming clean and admitting that I already have a picture of her, and that – yes – I do find it very helpful to look at it. P. said that this photo would be different, though, because this would be a photo she had given me, which I agreed it would be, but that I needed to think about it.
What I failed to explain to her at the time, and which later came back to haunt me in the form of a number of sleepless nights, was that I said nothing about why [how?] I had a picture of her. Eventually, it got to me so much that I had to write her an email to explain that it wasn’t quite as creepy-stalkerlike as it may seem: because of the prosopagnosia I have taken to doing a quick search engine/social media scan for a pic to add to any new contact I put in my address book, including the guy who comes to fix the boiler. Just for clarity: I don’t think there is anything inherently wrong in having your therapist’s photo; most clients have a very natural, healthy curiosity about their therapist, and googling someone is hardly the crime of the century – it was more the fact that I hadn’t said anything about it to P. that was bothering me, because it filled me with anxiety that she might think I was exhibiting creepy stalkerlike behaviour. Unfortunately, the very sweet email she wrote back to reassure me that this wasn’t the case, that she didn’t feel it was either creepy or stalkerlike, for some reason didn’t make it through to my inbox, and consequently my anxiety was quadrupled over the next two days. But, we managed to talk all of that through later.
In the end I did accept P.’s offer of giving me a photograph. The actual photo is one that my prosopagnostic brain has trouble deciphering as being of her – there is something about the fact that she isn’t smiling with her eyes – as she so often does in session – that makes it hard for me to understand that it is really her in the photo, but it still means a lot to me having it. I treasure it in the same way that I might treasure a handwritten note from her, precisely because it is from her. I also showed P. the picture I already had of her, and I think she understood why that is a picture I find much easier to connect emotionally with – because in that photo she seems very relaxed and is indeed ‘smiling with her eyes.’
The final idea of how to cope with this separation was one I came up with. I had been thinking about what exactly all of those fears inside of me really are, and what different ways we had worked out to deal with each one of them, and I realised that one of my biggest fears – the one about being forgotten and left behind – could also be dealt with, with a photo. This time, I suggested to P. that maybe I could send her a photo, of me, because even though Adult Me intellectually knows that I won’t disappear from P.’s memory the second I am out of sight, her having something of me with her would make Little S. feel a lot better. [For long term followers, this idea was a modified version of the rubber duck I gave A. in our very last session together.]
So, all in all, that last pre-break session was a good one. I felt quite overwhelmed by P. saying so many kind things to me, particularly when she said that her having my photo meant that she could take me with her on her leave.. But, as I also explained to her, it was good overwhelming, not bad..
Right at the very end of the session P. asked one last time if there was anything else she could do for me, to which I said: “Just make sure that you DO come back”.
To which she replied that she wanted the exact same thing from me.