The Fight Is Over

“Everything will be all right in the end. If it’s not all right, then it’s not the end.” – The Best Exotic Marigold Hotel (film)… A line that was quoted to me by uni dad during particularly crap times, but that I didn’t believe until today.

Yes, yes, yes. So many levels of YES! No more fighting. I’m overwhelmed by a hopeful relief to the point that words are currently failing me. I don’t know where to start. I’m too impatient to go back to the beginning and too stubborn to start at the end (so you’re going to have to read through the rubbish to get to the good part, sorry).

This morning I tried to print emails and type up notes to take to my disability advisor at university to discuss the whole ‘support? Yeah we aren’t going to do any of the things the disability services said’ situation that has been occurring for the last year, and has at times left me suicidal (ok, wow, I’m so over the moon that word doesn’t even bother me right now). Anyway. I became so terrified about the whole thing I ended up a bit of an emotional mess, and spent an hour listening to music before I could re-attemtpt my brief summary. I was terrified about having to fight the university again just to get some support. But I eventually managed to make bullet points anyway.

I went onto campus. Instantly every single part of me was at home. I ditched Winston the wheelchair and outraged my body by walking from the back of the building to the front of it. It occurred to me as I got in the lift that I’d nearly died in that building, which gave me the creeps, especially as it has a morgue in it and is the site of our anatomy practicals. I went to the deputy head of disability services, who I’d met with before, and we discussed everything. He was so supportive. He was also appalled, disappointed, and seemed quite horrified. He called the situation ridiculous so many times that the word started to sound funny. He said it sounded pretty horrendous to have had to go through, which made me feel less embarrassed about the impact it has had on me emotionally at times. He apologised. He shook his head pretty much throughout our entire discussion so much I wondered if it might work itself loose and fall off (yes I know this is anatomically impossible).

He said the staff hadn’t supported me in the way they were meant to at all. We talked about the wheelchair situation. He said they can’t kick me out for not doing assessments due to my health, and that if walking up the stairs in a building with no lift makes me so unwell, it is ridiculous that the practicals weren’t moved. He said allowances can be made for my coursework, so I don’t need to leave the uni if I can’t carry out the practical part of our coursework (which never goes right anyway, so we always look at model results). He suggested I spend another year in halls due to my inability to travel much or walk any sensible distance, and that even though it was past the deadline the disability services could sort it out. He’s going to recommend that all my lectures next year are in wheelchair accessible locations (in case I can’t ditch Winston). And the list went on and on and on (because there’s a lot of crap that I won’t mention on here because it makes me feel so angry and hopeless that I cry when I even attempt to summarise it). He said if ever I need any support at all I should just go to the disability services (he’s my disability advisor) even if it’s once a week just to rant. I found someone to talk to about my health, and it felt good, so I briefly summarised the bleakness I was up against.

I cannot explain how amazing it felt to finally have some support at university, someone willing to fight my corner. He’s determined to make sure next year is very different from the start, and said it was incredibly sad to hear that all I’d cared about was not missing deadlines or getting ill on campus, often to the detriment of my health (because I didn’t go to hospital when I needed to, and often ended up in a heap on the floor). He said he’d rather I just please called an ambulance onto campus. He’s going to change the document the university were given about my health and the accommodations they should make for it, and mention that I’ve been unsupported over the past year (I kept telling him I was scared of the university and didn’t want to upset anyone. He persuaded me to let him just briefly mention it). He asked why on earth I hadn’t been to see him about it all sooner. I said that I was extremely worried that I was making a fuss over nothing. He told me I was doing far from that, and that it was actually his job. I felt better. Actually, I felt happy. Happy. Actual happiness. (This isn’t even the good part yet)

I didn’t really have time to start freaking out about the hospital appointment right afterwards. I got to the hospital at 3:10, and didn’t leave until two hours later. Honestly, in that time… My life changed. (This is the slightly less awful good part)

The man that took away all my hope of a future just gave it all back to me. 

The man who left me to the grim reaper decided that he was now willing to try and save me from him, seeing as how I’m not dead (and he talked about a service dog so that was awesome too). I thought I was going to have to fight with him. I thought he was going to leave me to my fate again and watch me bounce in and out of intensive care until the grim reaper managed to pin me down. I thought the crushing hopelessness his appointments usually induce was going to overwhelm me all over again and I sat there with two of them looking at me, preparing myself for the emotional pain that… Never arrived.

My guard was up and I was terrified, shaking, wanting to throw up, trying to look anywhere but at him… For no reason. This time he talked about heart failure and varied kidney function and stuff that was nothing to do with him (although he really does want to look into the kidney stuff more, but getting blood from me is impossible, which is why I haven’t gone to have the “weekly blood tests” I’m meant to have at all since they told me I had to – I do not want a long line yet. He does however, think I should definitely go and get the bloods done, because he’s all concerned about my kidneys even though I have a separate consultant for that). And then he got around to the bit of me he has to think for, the health issue he is meant to be helping me with

“Well, the situation doesn’t seem to have changed much.” Here we go again,

This is very dangerous. Your body can’t keep doing this (he means the medical emergency that frequently puts me in intensive care and on an almost monthly basis almost takes my life), each time it does you’re at a greater and greater risk of… It’s incredibly dangerous.” Yes, I know, and it’s going to kill me and you don’t know how to stop it because you can’t be bothered to try and…

Have we ever considered (some surgery that had only been done on one person in this country last time it was mentioned to me and is still only offered in two hospitals under very extreme/ desperate circumstances because I don’t even know why)?” Excuse me? What did you just say? Did you just… Did you just say you want to try and beat the grim reaper? DID YOU JUST SAY YOU WANT TO FIGHT FOR MY LIFE WITH ME?  The stunned look on my face must have been misinterpreted as one of horror, because he put his arms up like I was about to shoot him and said,

“Ok, ok… Not necessarily that, but this isn’t a typical case at all… I think with you we’re going to need something… Drastic.” Like what? I think but am still too stunned to say.

“Ok, alright. We’ll talk about it next time I see you.” No, no, I’m relieved I’m not freaking out, let’s talk about it NOW! I just can’t believe you’ve changed your mind about seeing a point in trying to… Try. I suggest another, more common treatment that I’ve tried before, because I’m too stunned to be thinking properly or saying what I want to say, and the one he is suggesting involves an entire new team of doctors at another London specialist hospital where I had horrific experiences when I was younger.

“Like I said, I think we need something more drastic with you if we’re going to get anywhere at all with this.” He says softly, gently nudging me out of my denial. Preferably before it kills me right? Who even are you? Are you real? WHO ARE YOU AND WHAT HAVE YOU DONE WITH THE CONSULTANT WHO WAS PERFECTLY HAPPY TO LEAVE NATURE TO TAKE ITS COURSE??  I looked at my psychologist, who I’d asked to attend the appointment with me because the last one left me so hopeless that afterwards I was so much of an emotional mess I couldn’t even walk and even cried in front of the doctors. She smiled at me. I looked back at my consultant, sat in his chair, and then behind him to the kitchen window of the flat I used to live in (in my university halls, until a week ago).

Yes, everything else going wrong in my body is going wrong, and no, he can’t stop this or fix the issue or deal with anything else – but I’ll be back to the same chance of dying as everybody else who has this condition (well… only in regard to this condition, but this is the thing most likely to kill me and most IMPOSSIBLE to fix, so that’s awesome), and that’s all I want. In the meantime, I’m probably going to nearly die again, and I’m prepared for that. Maybe this time will be the time we don’t win, maybe this time will be the time that the grim reaper manages to get me to elope with him. Maybe this is too little too late. But beyond that almost inevitable event, I think there is hope… Hope where there once was a let down. And with hope, who cares what happens? Because there’s suddenly a point in holding on and a lot more to hold on with.

No more fighting to get support from the people who I rely on for it. No more fighting to stay alive alone. No more fighting to convince someone that my life is one worth fighting for. No more fighting for this consultant to try for me… No more fighting. No more wearing myself into the ground. Who cares if there is fresh concern about my kidneys?

Today was amazing, even if the points about my worsening health were far from it, because suddenly I have hope, suddenly this consultant is willing to try like I needed him to. And when I got back to my parents’ house my dog was there and the two new books I ordered online had arrived (one of which is another Remarque – Spark of Life).

So today my life changed. Genuinely. A single consultant made that much of a difference by doing what I wish he’s done months ago when he pretty much gave up (seriously, thanks to him, I very nearly didn’t make it to 20).

“Change is hard at first, messy in the middle, and glorious in the end.” – Robin Sharma 

I didn’t believe the end of this quote either, but as music flooded my ears on the way home, it was all I kept thinking. I also kept thinking that uni dad was right, and part of me wanted to tell both of my uni parents that there was hope now, that they’d got me through the hopelessness and they were both SO RIGHT. But I can’t talk to either of them so… Anyway. The relief is indescribable. Finally someone at uni, and the consultant who gave up on me, are on my side.

The fighting is over. 

This is all going to be ok.

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I’m Almost As Scared To Post This As I Was To Say It

Since I decided to try and consider myself a little more (or at all, actually) things have been a going a little differently. Today I decided to call my family members out when their treatment of me made me feel belittled or if I thought it was unjust… I haven’t really done this before, I haven’t really stood my ground (certainly not calmly and rationally without tears) and to be honest, I didn’t think I would get away with the whole “please stop treating me like a child”, “please don’t talk to me like that”, “would you speak to another adult like this? So why me?” thing… But, after a few arguments (which didn’t involve any shouting), they gave up with the smart remarks and ridiculous reasons and just sort of rolled their eyes and let me do what I needed to do – let it all out.

(Warning: you are probably going to hate me as much as I do by the end of this post).

I showed them how they made me feel by talking to them in the fashion that they sometimes talk to me (while laughing, because I found imitating my mum particularly hilarious). e.g. When my mum said her ear hurt, I playfully ranted at her about how all of her was broken and I couldn’t deal with it any more, and asked her if she could never just be ok for once. She was’t very impressed. I kind of needed her not to be for the message to get through, to make her think about the things she says to me sometimes in the heat of the moment, when she asks me how I am and I give her the honest answer she claims to want (which is usually I don’t feel great, but it’s ok). It was the only way I could think to make my point, to show her how it feels. I playfully criticised her for short periods a couple of times throughout the day, but rather than getting my point she seemed to just zone out and think that I was being particularly annoying (and suddenly talkative).

“Will you just stop it?” Whatever the reason, it had a negative effect almost instantly.

But I had a point to prove. After yesterday and the thoughts it threw up, I’d had enough – enough of being made to feel like a substandard human being in what is some of the time referred to as my own home. I wanted someone else here to understand the impact that constantly feeling like you’re letting someone down, of falling below par, can have on your mood. The difference was that made it clear that I did’t mean it. And on a couple of occasions I think I wasn’t the only one that saw the funny side of my attempts to impersonate people. One thing was certain – I was not letting it go until I’d made my point in concrete, allowed it to set, and built a house on the foundations.

I hadn’t really dared to be so persistent with a point before – my usual response to the outlet of their justified frustration (I understand that the things my health puts my family through are not fair on them at all, they have to watch it, and I think watching is worse than experiencing the pain that I quite often don’t remember first hand) is to hang from every word, replay things they said in frustration but didn’t actually mean, and drown in the lava of the self-hatred it all induces within me. But no matter what I do, it seems to end up wrong (entirely my fault, not theirs). I fall short of what they are quite right to expect of me. I feel like a failure when I screw up, because I try to think of myself from their viewpoint and I realise that I am a totally rubbish excuse for offspring, and not at all what my mother probably imagined I would be.

This morning I was stood in the kitchen preparing to dive into a pool of self loathing in response to a few comments, when I suddenly realised that trying harder while maintaining this outlook was not going to make any of us happy, and that maybe the way to break that cycle of feeling more and more like a complete sure up was to stop looking at myself through their eyes and teach myself to focus on the person in my mirror -me. From my own eyes. From my own viewpoint. From my own mind. And by default, when I am a good enough human being for myself to accept or tolerate, I will be a good enough person for them. And they might be happier, which is all every single part of me wants for my family – what they deserve. Until I can accept myself, it is unfair to ask anyone else to do the same, and the self hatred generated by my guilt will always warp reality into soul destroying situations until I learn to switch it off.

No more hurt, no more dismay, no more frustration – I want to make them smile. I want to stop being the cause of their pain and (completely justified to be honest) anger and frustration that my life sneaks into those of the people around it. So I tried to show that I have had enough of this endless downward spiral of crushed self esteem. I realised in that moment that I did;t have to stand for it any more. I wanted to be happy too, and I needed someone else to realise that I am making an effort to be something I haven’t have the confidence, or, I felt, deserved the privilege of being, for a long time – myself (admittedly I’m not even sure what or who this is any more, but I finally want to reinvent whatever that may be with the things that my health has yet to take from me).

And it felt empowering.

It felt so, so good.

And it’s so, so selfish. But sometimes (a lot of the time. Most of the time.) it feels that in this house I make sound waves, but my voice is not heard. They want to tell me how my health issues and everything make them feel, how difficult it can be to have me around, but build a defensive wall of decibels when I try to level the playing field and gently explain how I feel too, how sorry I am that they have reason to feel that way, that they ended up with me. I’m not sure what makes them argue before I can make my point – guilt? A refusal to accept that just because they don’t mean things in the way they come across, I can’t be hurt by them? A belief that Oh for goodness sake! I blow off like a fuse, I didn’t mean that! puts back all the tears that I cried?

I am an independent adult, and today, I finally felt like one in this house. So judge me if you want, hate me, shake your head, tut, roll your eyes. Nobody is taking that away – I’m no longer trying to look at myself through everyone else’s eyes, and it’s so hard and I often hate myself for it, but it’s making me feel more positive about who I am, and less of a waste of space. I finally feel like someone (just about) deserving of a place on this planet, and now that I’m focussing on trying to save myself a little bit instead of just wanting to save everyone who knows me by removing myself from their lives, I consider voluntarily surrendering my existence to the grim reaper a lot less. That feels nicer than I ever imagined it would.

The only way I can think to make them happy, is to try to be genuinely happy myself, to try viewing myself equal to the people I care about (and everyone else on the planet) instead of far below them. And the only way to do that is to stop caring about what their tiredness and frustration makes them say occasionally, stop blaming myself for EVERYTHING, and block out even the justified negativity, in order to persuade myself that I am someone worth tolerating, worth standing  by, worth being around. And then maybe I might believe that someone else will. Maybe my smile will return for good. And maybe then my family will be able to smile too. I felt utterly and shamefully selfish for doing this, until I somehow stumbled across this website about the line between putting yourself first and being selfish (which made me feel like less of a complete —insert rude word of your choice–)

“When you say yes to others, make sure you are not saying no to yourself.” – Paulo Coehlo

“I have come to believe that caring for myself is not self-indulgent. Caring for myself is an act of survival” – Audre Lorde

“That’s the problem with putting others first; you’ve taught them you come second” – unknown

I don’t intend to put myself first – I just want, even for a few seconds, to place myself alongside everyone else. To feel equal, worthy… It’s just difficult – so, so difficult to come anywhere close to this for more than a couple of minutes. I’m working on it. I hate myself for it, but I’m trying to push through that. Usually I just try to only depend on myself because of quotes more like the following:

“I don’t like

depending on people

because people

leave

all the time.

Because at the end of the day

all you have is

yourself

and that has to be

Enough”

A.M

But I’m trying to force that to change.

(Tomorrow’s post will talk about puppies, totally come back for that)