The consultant in charge of the ward walks in to see me with one of his henchmen (another doctor). He says the ward sister will be joining us and pulls the curtain as if this will stop the noise. Dread fills me from my toes (I was so tempted to write distal phalanges but… Oh wait I just have) to my cranium. I brace myself for the impact of miscalculated words as he says my specialist nurse has raised concerns about my emotional wellbeing. I try
and fail to explain myself. I tell him about the repeated cycle and that people keep saying it is going to kill me and that in this moment I can’t stand the thought of going through it again, which is stupid and horrendously ungrateful, but a thing I don’t seem to be able to control. I tell him that the team here told me it was negative to think of a recurrence of this situation as an inevitability, that it is realistic. He understands that. He says this is an unusual circumstance that they probably don’t know how to tackle, and that isn’t my fault, even though I feel like it is, like I am doing something wrong.
“There is nothing I can do to fix this, but please, if there is anything at all we can do for you please tell me. If you need any help just ask. I’ll do anything I can.” I am immediately caught off guard, disarmed, relieved… All in one moment.
We start to talk, slowly, about how often I am in hospital. He totally understands why. Understands the inevitability. I very briefly mention the PTSD. I say again that doctors don’t understand and try to save my butt using conventional treatment methods that mean I just keep bouncing back into hospital.
“I… We understand. Obviously I cannot say we understand fully, I’ve only met you on this admission and this is not an ordinary situation, but we understand that this doesn’t happen because you let it happen, it happens because nobody can stop it. You’ve been through and awful lot. If we can make this easier for you in any way please just tell us how.” WHERE HAVE YOU BEEN ALL OF MY LIFE? I sit in a stunned silence. We talk about my reluctance to get help, my shame, but mostly the reactions of A&E staff and paramedics, who occasionally think I’m unconscious because I’ve taken drugs, or seem to think I had some control about how unwell I got and just don’t care about looking after myself.
“You’re right there is a stereotype around young people and unfortunately you’re still young enough to be caught up in it.” The sister says. The doctor sighs,
“Unfortunately there are usual circumstances which doctors become very used to seeing. They will initially jump to conclusions. This is very complex and rare. They do not understand this situation like we do.” We talk about getting my consultant to make a plan (which was ignored when he tried this before) and write a letter to explain the complexities of the issue which I can carry with me,
“Yes, that will be good, and then she may have the confidence to go to hospital sooner if she can just hand them a letter so they too understand what they are dealing with. Any doctor will know what is going on from what they see before them, they need to know why. They need to know how not to try and deal with it.” He talks about me in third person, thinking out loud. His henchman surprises me by speaking up in support of the idea. They agree it was a good one of me to suggest.
We talk everything through calmly, I am too defeated to freak out. I feel nothing. I am hollow. I am incapable of any emotion and yet I feel the tears brewing again. He leads the conversation, bringing up different areas which may be problematic and things he thinks need to happen. I quietly, robotically, monotonously respond. He calmly, gently, compassionately continues to talk after each pause. He doesn’t think I am stupid or pathetic, in fact they all seem to think my shameful defeated state is justified. They seem to think I’ve been through a lot of difficult stuff.
He asks me if I am happy with the care this hospital and these doctors are giving me, and how he can improve it, acknowledging the fact that he won’t take it personally and that there are shortfallings sometimes. He also asks where my main care for this health hiccup is based. I tell him London.
We talk about how this hospital and London don’t talk so both tell me different things and these guys seem annoyed if I do what the other says. He says that needs to stop, and he will get the two teams to talk to each other and start communicating, even though the consultant I saw this morning knows my London consultant and expects to bump into him at a conference tomorrow where he will discuss my case (if not, he will call him on Monday. Monday. Is so. Far. Away).
He says while I am in Kent I can’t just be let out of the hospital and left for London to deal with – he wants a district nurse from this health trust to see me once a week (usually associated with elderly patients he admits, but he feels it may be necessary); he says I need better community care from this hospital, more support. He says a district nurse will notice signs of deterioration when I might not, and I may be able to seek help quicker and it may give me more of a chance at evading the grim reaper. He says I need more regular appointments here while I’m not in London – weekly or two weekly. He says I should have a lot of support in managing this health hiccup, especially as it is so complex and deteriorates so rapidly and uncontrollably, taking other health hiccups on the downward spiral it plunges me into. He says he wants to try and reduce my number of hospital admissions.
He totally gets the PTSD. They all do. They are kind about it. They are sympathetic in a non-patronising way. There is a sadness in the eyes I look at, the same helplessness that lies within my own. He says while I am here (as in, an inpatient) I need help to deal with the consequences of that (PTSD).
I apologise again for being so pathetic. They all seem outraged at the idea that I feel that way. The consultant guy protests, the henchman shakes his head furiously, the ward sister says,
“This isn’t pathetic at all, you’ve been through so much.”
“You’re going through so much more than most would cope with.” Another voice says. At some point somebody says,
“You’ve been through enough.” That last word. Enough. I like that word choice. It means finality. It means it is time for it all to stop. It means someone else wants to put an end to this. It means change. Enough.
And then the sister mentions the IV access issue. The line issue. I tell them I don’t want to argue or fight for one, that I give up. The main doctor guy says he can’t do anything about it, but that he thinks I should discuss it all with my consultant here who can act upon it. I tell him I sort of did, although I’m confused as to who my consultant is. We talk through my access issues. The central lines they abandon putting in and try to put in another side or another area, the hours of stabbing while the drugs they need to infuse sit beside me mocking us all. He says he can see why somebody might not want to put a line in me, but that the positives and the negatives have to be assessed and discussed thoroughly. I say I didn’t feel that was possible, and that I now see no point, because I don’t. He says access is a huge issue.
I don’t want needles drilled into my bone. I tell him what the other consultant specialising in this health hiccup told me this morning, and that it isn’t as simple as he made out. I say I feel like nobody listens. They all understand. He says it must be incredibly frustrating. I say they won’t get many more lines into my femoral vein and definitely not my neck (they now always fail), he nods. I say I’m scared about what happens then, that I don’t want to die while looking at the medication that could save my life if they could get it into my vein. A fresh wave of hopelessness washes over me. My voice returns to a quiet monotone.
He is patient. He is kind. He kneels on the floor the whole time he is talking and I see him shift his weight and wince with the discomfort. He isn’t patronising or condescending. He doesn’t care because he’s paid to care, he cares because the situation I am in bothers him and he wants to fix it because he has managed to retain his humanity. Over and over again he tells me not to apologise. He understands. He actually understands how traumatic it is for me to be here and that when I leave and the flashbacks reduce in frequency, the freak out will stop and I will think more clearly.
He is calm. He gently asks questions about issues he thinks need to be addressed (but can personally do nothing about other than to give his colleagues a shove towards resolving them) and he listens to the answers. And then I am fighting back tears of gratitude. It is the most helpful conversation I’ve had since my old consultant for this particular health hiccup at another London hospital. I feel listened to. They care. They don’t make me feel stupid and they are deeply sorry that I’ve been made to feel so, and that I feel like I am a nuisance. I waited so long for this. He listened. They listened.
But it is too little too late.
I am gone. There is, at that moment, nothing left of me to save (and I hate myself for being so pathetic).
“Oh my dance is getting slower now,
Cause my years they’re getting older now,
And my eyes, they won’t cry.
My tears have all run dry…
Will you please believe
I’m not the person you see,
I left that body long ago.
I left it way back there.
Will you please believe,
Given all that you see,
I left that body long ago
But somehow nobody knows.” – Amy McDonald, Left That Body Long Ago