“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.