The Greatest Gift I Never Used

So, yesterday was Father’s Day, or Fathers’ Day, depending on where you place that apostrophe. Covering my bases here.

I’m lucky. I have a great relationship with my dad. We’ve always gotten on well, and we have similar temperaments. I understand him. Plus, he’s kept all the stuff I don’t have space for but don’t want to throw out for the past ten years now. I think that counts for a lot.

I spent much of yesterday sat in his back garden, digging through the shed which has been home to some of my childhood treasures for a decade now. I didn’t plan things that way – when I moved in with him, age 18, it was a temporary fix to the problem of trying to move my sister and I from two large bedrooms into one smaller one. My divided childhoods merged into one house which didn’t have space for them both, and although the plan was to sift and sort and compress, that kind of never happened. Boxes of books and trinkets and treasures were placed in a shed which they never came out of.

Other things took over. Health, and the spiral of trying to work out what was wrong with me, and then before I knew it, I had moved out, and was thrust into the world of motherhood. The two-part childhood, which I had never resolved into one piece, had to wait. Part of me was in that shed, or in the loft. Growing dusty and damp; coated in cobwebs.

And now I’m here. Here as an adult, somehow, looking back on boxes which I’ve held in my heart for years, but not in my hands. Things I never grew out of and let go, but were left behind nonetheless. I’ve always had an obsession with nostalgia, and the past. I’ve spent over half my life trying to make sense of who I am, and I’ve always fallen short of the answer. It came to me, yesterday, that part of the problem is how much of me doesn’t add up.

As I looked over my old things, I started to realise how disconnected they were. Two worlds which never met. I have memories which I can’t place, because there is a section of my life which doesn’t follow the linear narrative of the rest. I can draw a line in my mind, connecting all the things I did with my mum, but my life at my dad’s didn’t run parallel. Those weekends and holidays existed in a different world – one where I didn’t have to wear the mask I wore during the week. There was no school. No homework. No anxiety. It was my sanctuary – and it existed outside of the rest of my life. A little bubble which protected me, but never integrated. As I looked back at my treasures yesterday, I realised that while I can put ages and dates to most of the things I boxed up at 18, I can’t do that for the things which had been in that room at my Dad’s house all along.

They exist in a part of me which escapes time. Weekends and summers blur into one. A decade of my life which doesn’t quite fit with the rest. Ten years of a part of me remaining static, while the rest of me grew and changed and matured. Treasures and trinkets which have so many memories, yet no age.

And the reminder of when my lives started to merge again lies in an envelope. That brief, strange few months when my two lives crossed in the other direction. When I would drive, once a fortnight, to spend the weekend with my mum, and then return home. And it’s funny really, because I had forgotten those months even existed. Forgot that part of me had even been there, until a black envelope reminded me of the Christmas when I had been free, and mobile, and ready to embark on a life where I could merge those two lives into one in my own time.

The greatest gift I never used was for a day at Brand’s Hatch. Before I had a chance to go, my licence was gone. The seizures had stolen my mobility, and that future. And in a way, they stole my past, too. Because there it stayed, in boxes. Left tucked away, while life took me further and further from the girl who never let go of them.

Further, but only in time. Because the thing which struck me most of all, as I looked over my old treasures, was how much I am still that girl today. The chaotic mix of things I owned and treasured all match the loves and interests I still hold dear. Books, a telescope, a typewriter, jigsaw puzzles, cut-outs from computer game boxes. Memories of hours spent making miniature worlds. Piece by piece it slots in place. And it’s funny, really, that I spent so long trying to make sense of who I was, when I never really changed at all. I’ve spent the last twenty years in an identity crisis of one sort or another, and as I slowly surface, I think I’m finally ready to start letting go of some of those boxes.

I don’t need to keep them all, slowly rotting in a shed or in a loft. I’ve had them all along. I’ll keep my black envelope though. It’s too easy for me to forget those few months where both halves of me came together again, and allowed me to grow into my future. And who knows. Maybe one day I’ll go to Brand’s Hatch after all.

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Problems with being Socially Anxious

I don’t do people. I don’t have a massive problem with them or anything, although large crowds tend to set shivers down my back and have me watching over my shoulder every now and then as though someone is about to run up behind me and plant some sort of: “I look really stupid, please laugh at me” sign on my back. 
Pictured: My trusty shield, defending me from imaginary “kick me” notes for a good decade or so.
It was once an indispensable part of my wardrobe. 
But largely. I can manage. I can walk next to people without freaking out. I might even make small talk with other parents outside the school gates after I’ve “known” them for six months or so. Heck. After the Girl had separation anxiety and used to go, screaming, into pre-school every day, I perfected the: “Oh well, it’s just a phase,” line as I forced a smile onto my face while walking past all the other parents with their not-screaming children, hoping that they weren’t judging me, mocking me, or despising me for being responsible for such a noisy child. (And thankfully the Girl has gotten over her own anxiety and is quite happy in the mornings now.)
I will readily admit that as much as I try not to label myself, the terms “shy”, “social anxiety” and “people phobia” spring readily to my mind when I think of my personality, along with somewhat more stigmatising terms such as “recluse”, and “social pariah”.
For the most part, I live my somewhat solitary life more vicariously through the internet. Here, at last, I am free, cut loose from my anxieties because no one can see how my forehead contorts with nerves as I post on forums. No one knows that I sit for five, ten, fifteen minutes with my mouse hovering over “reply” – all they see is TottWriter, a name on a screen, sounding confident, opinionated, bold. Even if the name does post somewhat infrequently.
Parenting puts a bit of a dampener of that shield, however. There’s the school run, for starters, And while it’s less daunting in reality than lots of forum topics would make it out to be (I’ve yet to see the parents actually divide into tribal formations, taking out the weaker specimens for sport), it still involves a degree of social interaction which I flounder on at times. Left to my own devices I would walk alone, stand alone, collect my children and flee, feeling pangs of longing for the parents who natter and gossip with ease, but knowing it’s not for me.
Then, the Boy went and made friends, and suddenly we have a group of people to walk to and from school with each day. I’ve taken to calling bedtime “The Gauntlet” due to its somewhat challenging nature, but my true gauntlet runs twice a day, at starting times of 8:20am and 3:00pm. Here is when I am tested – when I smile and make small talk, all the while noticing every pause before someone replies to me, every time people don’t hear my remark and talk over me, every time I am three paces behind the main group instead of one or two. Every occasion where the other parents are meeting up outside of school and I am not, when a grudge or conversation is discussed in which I had no part. 
In short, every time I feel that little bit more invisible than the others, when I start to worry that my mask of confidence has slipped and people can see me for what I am – an outsider, desperately clinging to the pack for my children’s sake and out of loneliness.
I know I don’t belong there, in conversations about nights out, fashion, and men. I’m none of those things. I stay in, I have never been fashionable, and I am currently coming to a full realisation that I am far closer to asexual than allosexual. I don’t fit, and I never have. 
The problem with being socially anxious is that, even though I know that no one “fits” a group perfectly, instead of finding the common ground and building friendships. I falter at the first hurdle, and spend years berating myself for that failure, for “getting it wrong”, for standing wrong, dressing wrong, staying quiet when I should have talked, or babbling when I should have been quiet. It’s that I over-analyse every mistake I make and let it cloud my social interactions in the future, and although I no longer wear a rucksack and a mid-length coat to defend myself from other people, I still feel like I need to don armour every time I walk out of the house.

Married life, and other things.

To be honest, it’s pretty much identical to life before, except that now I have a stack of Thank You cards to write, and a lot of paperwork to fill out to change my surname. I guess that’s a slightly contentious issue to some people these days, and while I don’t personally feel it’s a choice I have to defend, I seem to have found myself explaining it a few times over the last few weeks. Several people have asked whether I would or not. At the end of the day, it boils down to the fact that I want the same surname as O and M for convenience. I personally think that most double-barrel names get clunky in the end; what if O or M wanted to double-barrel their name again – would they then have the awkward task of choosing a name to drop? I worry too much about that sort of thing, although I quite like the sound of other people’s longer surnames.

Anyway. So, for me, the double-barrel option was out. Asking W to change his name was something I didn’t even consider, mostly because it would sound ridiculous. Honestly, you’ll have to trust me on this one. So that left me with changing my surname, which suits me just fine – my new surname is nice, and flows just as well with my name. Plus, I get to keep “Hill” for writing purposes, which I always knew I wanted to anyway. Essentially, I get the best of both worlds.

Still. That’s not my sole, trivial point for the day. I still haven’t had an appointment for Dr. Neuropsychology, although I might not get one – I had a letter today saying I might simply be referred for CBT. (More on that another time.) I’m still having seizures fairly frequently, although thankfully not several times a day. The wedding was clearly a big source of stress, which is obviously  over, but I am still not in a position where anyone is going to want me working for them. If this is my baseline, and I know that working increases the number of seizures I have, that’s a non-starter. Three or four times a week at least is no good for people, especially just for a part-time employee.

I’ve also had a nice fat form from ATOS in the post, for me to fill out and prove I’m still ill. What joy. I must admit, when I first opened the letter and saw who it was from, my heart skipped a beat. ATOS do not have a good name among people who claim benefits relating to ill health and disability, predominantly because they appear to be skewed in the favour of slashing the number of awards, rather than assessing people fairly. I don’t really have the energy to explain the whole debate here, but I will point you in the direction of blog outlining some of the more serious concerns. It’s an interesting read, although the topic is certainly worth researching for yourself, because it affects one heck of a lot of vulnerable people across the country, and a long-term illness or disability could affect anyone you know, or even your future self.

I try not to get too emotive and biased about things any more, because I don’t think that kind of argument ever really resolves anything – it just descends into “sob stories” that people dismiss as individual cases or overly subjective. But I do and will continue to encourage people to look at these issues more closely than they otherwise might. Very rarely is the overview of a situation as accurate as the full picture, and very rarely, in my opinion at least, is the story presented on the news and in the papers anything other than an overview, often one which is slanted to give weight to a particular point of view.

Recovery

Well, I must say, I have been very impressed with my keyhole surgery experience. A few days on and the referred pain has left my shoulders, and the incisions themselves are healing nicely. Three of them probably don’t need the dressings I have on them (I expect I’ll take them off tomorrow), and the one on my belly button, which seems to be the biggest, isn’t far behind.

One of these days when I can be bothered, I’ll have to look the procedure up and work out which hole they removed my gall bladder from, because honestly, none of them look big enough to me.

The biggest problem at the moment is not being able to pick up O or M. They are both capable of climbing up onto my lap, though it’s a bit sore if they fidget too much, but I cannot lift them, and won’t be able to for at least another week, particularly O, who is getting heavy now! Of course, since W is around, I’m not quite as in the lurch as someone who didn’t have a carer around would be, but it’s still a real nuisance, because obviously you base your lifestyle on your limitations.

Still, it’s a small price to pay, and now that the soreness is subsiding, it’s remarkable how much better I feel. I don’t think I’d really appreciated how often I was getting pain from gall stones. And I’m still a little.. er, galled, if you’ll pardon me, that I managed to get two of them by the time I was twenty four. Still, at least it’s got it out of the way while I am young enough to recover quickly, eh?

The slight taint on it all is that it’s M’s first birthday tomorrow, and of course, we will now be celebrating that at home, rather than going out somewhere. But since it was only family who we were going to see anyway, it’s hardly a major inconvenience. Oh, and our trip to the zoo has been postponed. Well. I don’t think she’s really going to notice. O certainly didn’t have the foggiest what was going on when it was his first birthday, anyway.

Oh, and no seizures today, either. Hooray! Now to find some wood to touch superstitiously!

Well that was fun…

Home again now, and recovering from the operation I had on Saturday to remove my frankly rather inept gall bladder. I’m feeling pretty good, considering, but have been told I mustn’t lift O or M for about a fortnight, which will most likely prove problematic at some point.

This was the first time I’ve had abdominal surgery – I’ve had the one general anaesthetic before when they whipped two of my widsom teeth out – and I must say, I’m surprised by how well I seem to be doing. On Saturday I felt pretty woozy for about four or five hours after coming round, but since then I’ve mostly just been rather sore and a little sorry for myself. The strangest thing has been how I’ve been subconsciously comparing it to previous stays in hospital, and surprising myself when things that happened then haven’t happened this time.

The biggest example has been comparing this to childbirth. Honestly, I’ve been walking around hunched over a fair amount, because I have several holes in my abdomen, and that reminds me somewhat of hobbling around having just given birth. But there are no other similarities really, so I’ve caught myself being surprised on say, sitting down, to find that it doesn’t hurt. Or I’ve been taken aback slightly by just how much my shoulders ache (as obviously they didn’t after giving birth), and how weak this has made my arms. But, adding up the pluses and minuses, I think I’ve come out trumps. Sure, I’m down an organ, but I’m bouncing back well.

I did have a seizure on Saturday, while I was still groggy from the anaesthetic, but as I didn’t thrash around at all – the only reason I could tell it apart from general wooziness was the fact my eyelids were fluttering – no one else noticed at the time. I actually rang my buzzer and had to tell the nurse that I’d just had a seizure, I was okay, but it should probably go in her notes on me so as to keep them accurate. I seem to have struck gold with nurses the last week or so though, because a relative of hers had epilepsy, and she was quite relaxed about the whole thing. She just asked how long it had gone on for, and then what she should do if I had another one. I was also quite relieved when she accepted that I’ve been having them almost daily recently and that this shouldn’t delay my going home any further than the epilepsy already had – I automatically had to stay overnight for what would otherwise have been day surgery.

Anyway, I’m still a little weary, so I’ll wind down for now. I can’t say I slept fantastically last night or the night before, (who knew that surgery could do that to you, eh?) and tiring myself further is just inviting bad news. Hopefully in a week or so I’ll be back to normal. Or as normal as I ever am, at any rate.

Change of Pace

Okay, so I’m having my gall bladder removed next Saturday. I knew it was coming, but only actually got my appointment on…Tuesday, Wednesday? Maybe as early as Monday? Either way it was hardly the four weeks’ notice I was promised. Still, I’ve come to expect that sort of thing, and at least it gets it out of the way.

The fact that I have epilepsy, for once, doesn’t add a major complication to things. In fact, I actually had a seizure in the pre-assessment unit waiting room on Friday, and while it was a pain, because it meant I got bumped to the back of the queue and we ended up being there for about four hours (no exaggeration), the sister there was remarkably relaxed about it – she said her son had epilepsy – and just let me get on with it, saying that since we dealt with it all the time, if W said I was okay, she believed him, and to let her know if we needed anything.

The seizure itself wasn’t that bad, either, although it does seem to be a sign that my seizure frequency has increased somewhat dramatically. I’ve gone from a few per month to having them almost every day, which makes a massive difference. There’s a lot of ground between thinking “am I going to have a seizure this week I wonder” and “will today be the day I don’t have a seizure this week”. With the former, you can plan to do things, and if a seizure happen you work around it. Now, we’re working on the assumption that I will probably have a seizure almost every day, and W is constantly watching me, looking for erratic behaviour that could be a sign one is imminent. He almost always knows I’m going to have a seizure before I do, simply because I don’t pick up on the fact that I’m feeling weird until I’ve had the seizure and start feeling better again. It puts a lot of pressure on him, pressure which is only going to increase in a week when I will be hampered by needing to recover from keyhole abdominal surgery.

I keep telling myself that once it’s done it’s done, but it never quite seems to happen that way. There’s always another hurdle round the corner that I have to jump. Ack, and now I’m feeling sorry for myself. Things aren’t that bad, really. The good in my life definitely evens out the bad. It’s just that every now and then a cluster of bad comes along and it’s a little harder to focus on the good points. I’m also really not looking forward to the operation. They’ve said to expect an overnight stay, as I’ll quite probably have a seizure when I come round from the anaesthetic (I’m 99% sure this happened when I had my wisdom teeth out in January), so they’ll want to keep an eye on me. But this will be the first night I’ll have been away from M, and she’s been so clingy lately that I’m as worried about how she’ll be as I am about having a minor organ removed. It doesn’t help that  I have a tendency towards unnecessary paranoia, really.

Still. This time next week that part will be over. I should be home again (admittedly, I’ll be in a lot of pain, but still), and I can focus on getting better, and readying myself for whatever is coming next.

The cluster continues…

Let’s start on a positive note. Today, my son had a brand new experience, which he was quite pleased with, and happily told his grandparents about. He also painted a lovely picture at our local parent and toddler group, of a dinosaur.

Unfortunately, the new experience was sitting in an ambulance -which had been called for me, I hasten to add – and in all the chaos following that, I managed to forget to take the picture home with me (that’s not the end of the world, as I can pick it up another day, but still).

Today’s seizure was annoying because of where it happened and how it came on. I didn’t realise what was going on until it was too late and couldn’t tell anyone, and because of that, being in a public place, people were obligated to call an ambulance.

I was “out” for about seven minutes in all, plus or minus a minute or so because people didn’t realise what was happening at first and I’m going on their accounts. So, not good, but hardly the worst I’ve experienced either. By the time the paramedics arrived I was sitting up and consoling M, who was quite upset at being taken away from me for a while. (O, by the way, was more concerned with the fact that he was missing “song time” and that I wasn’t singing The Grand Old Duke of York with him. He regards my seizures much as I do – a bleeding nuisance.)

This afternoon I possibly had another, minor seizure – that or I was so worn out I fell asleep. Sometimes it’s hard for me to tell. I went up to bed for a lie down and came to a while later aware that time had passed without me, but I’m not sure what actually occurred. That sort of thing happens more often than you’d think. On the one hand, I was tired enough that “You fell asleep, idiot,” is the most likely explanation, but on the other hand, I’d been feeling rather aura-ish when I laid down, so who knows.

In other, better (I suppose), news, I got a phone call today to arrange my gall bladder removal. On the 9th July. So, you know, I got that 3/4 weeks noticed they promised me then. I have a pre-assessment appointment on Friday where I expect they will tell me what the removal of an organ will mean for me, and how many tiny scars I shall have afterwards. (Thank goodness it’s keyhole surgery!)

It’s caused a bit of a fluster, but I guess at least it will all be over sooner rather than later. Now I just need to make sure I’ll be able to get to the hospital and back. Fingers crossed, eh?

Cycles

I had a fairly massive seizure this morning. It, overall, lasted about an hour and fifteen minutes, including my initial recovery. But I was wiped for a long time afterwards.

I can remember most of it, including the point at which I was deliberately trying to blank it out; a sort of “La la la this isn’t happening” moment, when O was tugging at my shoulder telling me “Mummy get up”, or something like that – as I said, my memory of specifics is hazy. I know at one point I was convinced I was going to die. It may seem melodramatic, but I often get like this in seizures. My mind is all over the place, and to say I’m not thinking straight would be an understatement.

I wasn’t hugely bothered about the concept either. I don’t know what possessed me to be that convinced of it, but I had a moment where I thought “Oh well, I guess this is it then,” as casual as you like. I think at that point my breathing may have been a little erratic, so it could have been oxygen deprivation. Or the reverse. I do often end up taking great gasping breaths at points.

It was odd, really. Bad, too – of course it was, and I probably come across in textual form a lot calmer about the whole thing than I really was. But part of the issue I have is that my brain just disconnects. I lose my normal emotional responses, which was evident afterwards, when I burst into tears about three or four times, presumably as my brain got back on track. I felt utterly freezing afterwards, too. I think that the convulsions I had towards the end burned up a lot of energy. I couldn’t stand by myself either.

Sorry, this is a rather garbled entry, isn’t it. Still, it’s nothing like as garbled as it would have been had I written immediately after my recovery, so that’s something at least. And in my defence, I am dog tired right now.

I have the delights of a hospital appointment regarding gall stones tomorrow, too. W has asked his father to take me to the hospital, rather than me getting the bus, because of what happened today. On the one hand it’s nice not to have to get the bus, but on the other it is just another reminder of what happened. The chances are I won’t have another one that severe for months, or even a year.

Then again, I will openly admit that I get rather too blasé about my epilepsy. It’s easy to really. All I need are a few good days/a couple of good weeks, and I start to forget what a pain it is when I go downhill. (And how scary it is for everyone around me.) Still, it beats being on red alert all the time, which would be the other extreme. I find that gentle denial makes the good days more relaxed, though I know that W doesn’t really switch off. I know I would worry less if O and M understood better. I have a nasty suspicion that I knocked into O while having the fit because he kept coming too close to me. I don’t really want to ask. Most of the time I can handle descriptions of my seizures; I crave them in order to make sense of it all, and place events in order. But every now and then I have one where I just don’t want to know. Today was that day.