how i used to feel
and how i still feel sometimes;
sad and frozen in concrete
how i used to feel
and how i still feel sometimes;
sad and frozen in concrete
OK, so I’ll admit it; I wrote that heading in the hope that I will find some words now that I start writing.. There are no guarantees at this stage, especially regarding the quality of said words..but, I’ll give it a whirl just the same.. [Bear with, bear with..]
So, I made it though The Break. It was a lot tougher than I thought it would be. In the past I have generally found that the beginning of a break is harder, because it is as if my body clock is telling me “today is a therapy day” and my whole being is expecting a solid fifty-minute-hour to release tension. The longer the break goes on, the less loudly my internal therapy clock ticks, because it is getting used to not having that thrice weekly outlet and is slowly finding alternative ways of managing in its absence. This time, however, was different – and I can’t really say why, because I don’t know why. If I were to venture a guess, I would say that it is to do with the fact that I am far more attached to P. than I ever was to A. [or even D.], and the longer we were apart, the more panicked I became that the connection P. and I have formed was beginning to disintegrate. I did find alternative ways of managing this time too, but it didn’t really alleviate the panic. In simple terms: I missed P. terribly – not just the service she provides, but I missed her, I missed us. And, again quite differently to past breaks, I allowed myself to admit that I was missing her. I made no attempts to try to convince myself that she’s not that important, or that it’s really just the structure of my week that I miss. And, as much as that made the break more difficult, I also know that this is real progress. This is me genuinely allowing someone in, allowing myself to become attached, taking a risk I usually wouldn’t take. So, definitely progress.
So, what did I do during my break? Well, in part I did what you could see in my previous post: tons of art. I also did some tie dying and some bleach printing and some shoe painting – all of which was very enjoyable and helped the hours and days pass in a positive way. Some samples below – feel free to scroll past, to read the rest of this post..
Still with me? Ok. Back to the tale of “How I Survived My Therapy Break”..
So, the arty-crafty stuff definitely helped a lot, but no matter how busy I tried to keep myself there was always going to be times when I really really really missed therapy – and P. I knew this was going to happen before the break, and – again unlike other times – it was something P. and I had talked about beforehand. In the year we have been working together, forging this relationship, therapy breaks have always been very tough. They just bring out so much Stuff [paradoxically, this is also one of the reasons why breaks are useful]. At times, even weekends have been torturous, so we’ve had to come up with things to help me feel close to P. even between single sessions.
One of the things we do is that P. will lend me her pen – the one she always has in her ridiculously big handbag. This idea with the pen was actually a suggestion from one of you readers a while back, in a comment after another post about therapy breaks. This – having P.’s pen – has really been great for me; I use her pen to write in my journal, and it makes me feel a little like we are having a session. [By now I know P. well enough to be able to predict what her response might be to the things I say/write]. So, for me, a pen is great. P. did once offer to lend me one of her scarves [we are both Scarf Wearing People – it’s a thing!], but at the time that felt way too much for me, far too overwhelming, and I declined her offer. A pen, on the other hand, was just right. Small and emotionally manageable.
Apart from the pen P. has also sent me photos of herself. This has been especially useful if we have had a particularly rough session and I’ve been worried that I’ve become too much for her – because that way I can look at the photo she’s just taken and I can see for myself that she is still OK, that, in spite of the things I have told her, she hasn’t broken down or disappeared. I have also sent her a picture of me, so she can carry me with her when she is on leave. P. often uses the phrase “I carry you in my heart” and, for me, her having a photo of me, is an extension of that.
Prior to both this break and the previous one, apart from P. lending me her pen, I lent her a bottle of nail varnish. I’m very into nail art [the only sort-of girly thing about me], so her wearing/having my nail polish makes me feel more connected to her. I don’t really think that P. would forget me without these physical reminders – after all she ‘carries me in her heart‘ – but the Little S. part of me finds this very reassuring, and since that is the part of me that generally struggles the most in P.’s absence [because she is the one who has experienced the most abandonment] it makes sense to pay extra attention to her needs. Especially when Adult Me finds it difficult to fully own those feelings herself..
Finally, the thing that probably helps me the most during breaks: writing letters. Real, physical, handwritten, old skool letters. I let any part of me [Little S., Adult Me, bob..] write P. whenever they want, and they can decorate the letters and envelopes in any way they want, so P. can see who it is from. I will then hand deliver the letters, because that means I get to go to the place where I see P., and it’s another step towards reassuring the different parts of me that even though P. is away, our therapy space still exists. So, that is something I would really recommend.
Wow! Looks like I found rather a lot of words in the end! Hope that’s OK.
Be kind to your Selves.
..here are some semi-random bits of art I’ve done recently.
Challenged myself to try out different styles of art to help me through a recent therapy break. [Hopefully I’ll write more about that break, soon.] I am always telling people [especially children] that anyone can draw – so whenever I decided to draw something I didn’t know if I could, I dedicated it to one of the kids in my life, because – really – how can I tell them that they can draw anything they want, if I hesitate to try new things myself?
So, good people, grab yourself a pencil or crayon or brush and do some art!
It’s good for the soul.
That’s all, folks!
It’s been a long time. It’s been too long, really. I suppose that I just needed a proper break from things. Or, rather, I needed to use what little energy I could muster to deal with the bare essentials, hence largely withdrawing from the world, both online and in my day-to-day interactions with family and friends.
It has been, and still is, a very rough ride. Since the beginning of the year I have had three rounds of crisis team intervention and one admission to Drayton Park, all with that burning hopeless feeling that ‘It’s pointless, it won’t make a difference’. Except, from an external point of view it has; I am still here now. I might not have been.
Therapy is the one thing that I feel is actually going well. But, as is so often the case when it comes to therapy, ‘going well’ involves a decent sized chunk of dizzying pain. The therapeutic process has never been heralded as a ‘free from unwanted side effects’ type of medication..
I continue to build my relationship with P., doing this quirky little two-steps-forward-one-step-back dance, putting my most deep seated fears and trust issues through their paces. Progress is slow, but at least we are moving. Those of you who have been in therapy will know exactly what I am talking about; one session and – almost out of nowhere – you find the courage of a lioness and take a giant leap forward, right across the abyss – the next two sessions; withdrawing and giving in to age-old fears of being let down, needing to test and re-test your therapist, to check that they really are for real, that those encouraging words won’t turn out to just be empty promises.
My need for emotional hand-holding and reassurance has known no limits in these last months and weeks, and consequently P. has had to work darn hard for the pennies.. She tells me that she knew what she was signing up for when she decided to take me on, I argue that she can’t possibly have known – because she didn’t know me – she then agrees that this is true, but reassures me that she has a very strong sense of what she can cope with, and that I really really really am not too much for her. And we take another tiny step forward.
As I have said many times before, I don’t think therapy is meant to be easy, I think it’s meant to be worth it.
Right now we are standing at the door of a two week therapy break, so – predictably – all of Little S.’s abandonment fears are awakened and hyper aroused. Adult Me works hard to try to explain that it will be OK, that we have been through – and have survived – many, many breaks before, and that we will get through this one, too, but Little S. clamps her hands firmly over her little ears, certain that this is the end of the safety and pseudo-mothering we have enjoyed from P.
What it boils down to is that my inner child, just like any other child, has no real understanding of time, and so a separation from P. is not a temporary state, but is permanent and absolute. And, again like most children, when the caregiver goes away, she assumes that this must be because of something she has done. This, in turn, makes Little S., go back and forth between putting unrealistic pressure on herself to be ‘all good’ [because, if she is very very good, maybe P. won’t leave her] and needing to self-punish [because she must have been bad, to make P. go away]. Adult Me works very hard to try to help regulate the extremes, but parenting your own inner child is not an easy task, especially when so many of Little S.’s thought patterns and beliefs still live on in Adult Me.
I still have three sessions left before the commencement of this two-week-bordering-on-eternity break, so there is time to talk this through with P., time to get another shot of reassurance injected, and hopefully that will alleviate at least some of Little S.’s [and Adult Me’s] anxiety.
Anyway, take good care of your Selves, and thank you all so much for sticking with me through this hiatus, of sorts.
’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..