Oh no! Why is she writing a post about Brexit? Don’t we hear enough about that already?? Let’s be honest, have you? No, specifically this week … have you heard about Brexit?
Maybe you’ve stopped listening to or watching the news to preserve your own sanity. I understand that. However, this week I urge you to gird your loins and switch the news back on. Because this week something monumentous [sic] is occurring and it has nothing to do with the B word. The news is new this week. You really should listen.
Why then am I using a term originally coined for those of us who wish to stay within the European Union? Think about it. Yes, you’ve got it. I’m a Remainer.
Usually the word remain isn’t, and I’m afraid even with my English Literature A level, I’m going to have to resort to Google, a noun but a verb. A word to describe an action, state or occurrence, for example: was she going to eat the remaining biscuits? Would she remain sane? Questions you might rightly ask yourself if you know me. Obviously the recent usage is as an identifier of a specific view vis-à-vis leaving the EU. I would like to chuck my own interpretation in the mix, based on the soup that is this week’s news.
I’m a Remainer.
If you do still listen / watch it and many, like my husband Ade, feel that not watching the news is tantamount to cleaning off your head and then thrusting it unceremoniously up to its neck into the nearest sandpit. If you are still connected to current affairs you cannot fail to have noticed the Infected Blood Inquiry. It started hearing witness statements this week. You may have heard about it and thought, this again? I thought this had been resolved years ago!?
That, unless you are in any way related to a victim of this scandal, might be a fair assumption. However, it is incorrect. As assumptions often are. As a victim myself I can absolutely assure you that if resolution had been reached I for one would … now I’m mid way through this sentence I realise I have no way of finishing it. What the hell would I be doing if indeed the contaminated blood campaign for justice had been concluded, with actual justice? What, the hell? I’d love to say I’d be on a beach, travelling the world, have got my career back, my life back, be able to have a family and moved the feck on.
The truth is, would I? Will I? The point is, I don’t know because I’m not there yet. The likelihood is life would continue to be a struggle but maybe with less pressure and more support? Will I feel like I’ve been let out of this state of limbo I’ve been in for years? Will I feel well enough to grasp my life by the horn? Who knows?
People have asked mum and I, does the inquiry give you hope? They say, you must have hope now that the truth is coming out? We don’t dare. Seriously, hope is dangerous for ones’ sanity. We have been there and done that. In fact, hope was there in the very first stab of the contaminated needle. When the doctors we knew as friends told us this was this miracle we’d been waiting for. This was going to fix our bleeds but in an easier, less time consuming way. It wasn’t a plasma bag that needed defrosting before use and then dripping in over several hours. It was little bottles that could be kept in the fridge at home! And self administered! We were told of the advantages, the freedom, we hoped for a brighter future as bleeders; and our parents said, yes! This gives our child their life back! We had hope for the first time in our little blighted lives.
If you follow my writings you’ll know what came next. So you will understand if mum and I do not lightly get our hopes up.
Faith is another thing. Faith in the inquiry team, we have. I believe Sir Brian Langstaff when he vows to put the victims at the heart of the inquiry and states that they are frightened of no-one. However, we have faced the giant metal jaws of governments before. We have chucked our stones in the faces of the pharmaceutical behemoths. We have walked away from those experiences, some of us, bloodied, battered and with another piece of our determination chipped away. Faith does not victory make and believe me, our adversaries are not giving up yet. I urge you to watch Diana Johnson MP’s question yesterday in the House of Commons.
Theresa May not look like an Iron Lady but she does a very good job of ignoring the question. Who’s to say anything uncovered by the Inquiry won’t be similarly ignored? And yet again our stones bounce off the carcass of the humanity that our government pretends to possess.
I digress. The Remainers are those of us who, unsurprisingly, remain. I mean remain fighting, battling to get that long sought justice. But I also mean remain alive. This is my gut meaning. I am a Remainer.
I haven’t chosen this role. It is a symptom of my condition. As I said in a previous post, I should be dead. I am not but not through any divine intervention or sheer bloody mindedness. I am here because the little dice did not yet land on my number. And that, as in the game of roulette, is absolute chance. I was infected with Hepatitis C the same as many others. I am alive. Thousands are not. Did you listen to Diana Johnson’s question? If you did you will have heard her state that since the Inquiry was announced one person given poisoned blood has died every four days.
We are dropping like the fruit flies my dad used to experiment on. They, however, were merely etherised in order that dad could study them under the microscope, before being popped in boxes to come round in our front porch. To the delight of me and my brother and the disgust of my mother.
We in the bleeding disorder community are similar to those tiny flies. We were the subject of experimentation but no care was taken to keep us alive. In actual fact the experimentation occurred in some cases because we were deemed to be expendable. Even the fruit flies weren’t expendable. Not to my dad anyway.
The phrase dropping like flies is apt if frankly, disgusting in the sense of the value of our lives. But this is the thing, our lives have not been valued. Have not been deemed worth keeping. And who has the right to make that decision. No one, that’s who. Those that did must be held to account. Will they? Hmmm. We shall see.
I Remain. I shall watch. But I cannot hope. Not whilst I’m witnessing the horrific testimony of lives destroyed. Steve Nicholls said yesterday, in his moving statement, that he was the only one left of 5 of his mates from school, all of whom had haemophilia, all of whom had seen friends dying, not of haemophilia but of terrifying things they did not understand.
They made a pact that whoever remained would continue fighting for all their lives. That is what he is now doing. That is what we as a bleeding disorder community have been doing for decades. Our shoulders are bleeding with the weight of those we’ve lost but we can’t let them down. And one person, if Diana’s stats are correct, is losing their battle, their dice are landing and our commitment gets heavier, every four days.
I admit I would rather be a Remainer than dead but the pressure on us survivors is intense. When you sit at home alone watching friends and strangers bear witness to the horrors this injustice has had one their lives you can feel horribly isolated.
The way I see it however, as time goes inevitably on and as our numbers irrevocably and interminably dwindle, is we become stronger. Links and connections are made, similarities revealed and bonds renewed. As friendship bracelets are weaved in red, yellow and black, a web as strong as titanium is forming between our decreasing numbers.
We hold one another up: whether we are together in London this week or we are watching from afar, alone but connected through our YouTube comments. Together we interlock arms, some with knackered elbows, we brace ourselves and once again shoulder up responsibility for justice for those who contamination culled.
We are Remainers.