“Jesus Christ on a bike…amazing to ‘see and hear’ all this when deaf and blind and do a blog at the same time…you just can’t make this sh** up”, someone said to me recently. And another response to my recent blog post?: “Wow. Covid is a miracle…has enabled a sick blind and deaf lady…the powers to see grey skies and hear alarms”. “God. It’s a miracle. Deaf and blind women can see and hear!” “It’s hilarious”… I was, according to a bunch of keyboard trolls and people-haters “illiterate, not ill”, after I shared my recent experience of Covid, of which I caught 5 months into an 8 month (and counting) hospital stay. Yet here I am again, writing another blog post, and yes, to no such surprise, I am still deafblind…
I was first told about the ‘open-door-closed-door’ analogy by my Biology teacher when I was considering whether or not Medicine was a good career choice for me. The idea was that if you only ever kept one door open and closed off all the others, then you’re also closing off all future opportunities and life-lessons too. Once a door is shut, you become set on one opinion or position but miss out on all the alternative options, choices, experiences, perspectives. More recently, I have seen the ‘closed door’ as a chance to learn about other people’s lives too, the story behind their physical selves, and the paths they have taken to end up where they are now. A lot of what we see of people is invisible and hidden away – there is so much we don’t know about someone yet it is still so easy to be judgmental of them. But the idea of opening ‘their door’ is so that we can remove any initial judgment of them and allow ourselves to look further into that person, if, of course, we are willing to do so. In many ways, it is this sense of mystery, curiosity, standing from the outside of humanity, that excites me so much about Medicine, and is one of the many reasons why I wanted to become a Doctor – I yearn to walk through the closed doors of my patients, to understand them and their lives more, so that I can help solve the hidden clues, the ‘tricky locks’, behind their illnesses better. But, in light of current happenings, the kind of closed doors I am talking about in this post are instead ones of rigidity, ignorance, invisibility and silent suffering – a lock over someone’s personal life, of which, from the outside, nobody knows anything about. I have suddenly come across a very particular group of people who refuse to even try the door. Their opinion of me, the story, the subject, has already been decided upon.
When I talk about this type of closed door, I am, of course, referring to the Covid19 pandemic. I am referring to those struggling in lockdown, to the people who are both shut in and shut out, by poor mental health, social isolation, unemployment, and so on. I am referring to the struggling lives of our healthcare staff, long after they have left the hospital, and returned to the eerie, living stillness of their homes. I am referring to the question of ‘what is really going on up on the hospital wards?’, not just on the ‘shop floor’ (Emergency Department), or simply what’s seen on our television screens…when the non-believers and conspiracists hear of closed clinics and cancelled operations, thinking our hospitals are empty, when they really, really are not. I am referring to the ill-judgment and doubt of those who do not believe in the virus, those who fail to follow the advice, and those who dissuade others around them that a vaccine is in fact not the answer. It is frustrating, and a test to us as healthcare staff, but there’s only so much we can figure out through the eye of one small keyhole.
In a time where each other’s lived experiences of this pandemic are by far the most reliable and rawest form of insight, way beyond the government’s confusing words or the bias of multiple media reports, I, like many others, poured my heart out in sharing my own Covid experience, (both as a patient and as a healthcare professional). It wasn’t so much my personal experience of Covid symptomatically that I wanted to share, but rather, the many harrowing observations of our hard-working, selfless NHS staff struggling under the unprecedented stresses, the shortages, and the physical and emotional turmoil. Unsurprisingly though, the hate began pouring in – just as it had done with my other colleagues who had spoken out, my story created a stir amongst the anti-vaxxer, anti-Covid world. In this time, I was accused of faking my illness, being called a “pile of horsesh**”, “a fearmongering liar”, “a crisis actor” and “photo propaganda prop”. Social media users mocked me, asking if I was “following the script” (as in, acting as though I did have Covid regardless), whilst others called my story “fictitious”, a load of “bullsh**”, and that I was in fact, not a real person, according to my “Fakebook account”. Another person jokingly asked if I “got best student award” for writing it down, “what a wan***!” they added.
I have chosen to spare the names of these silly people, purely to save themselves the embarrassment, but one social media user even went to the effort of trolling through 5 years of my Facebook account, screenshotting my personal life and sharing it on their own newsfeed, again, accusing me of being a liar and fraudster in everything that I am and in everything that I’ve done. To them, my disability; being deafblind, was also not true. Amusingly though, they proved themselves to be even more blind than I, when trying to convince others that I did a TED talk whilst suffering from Covid 2 months ago (hence it must all be fake). They failed to ‘see’ that I was 2 stone heavier in the video, before my chronic illness had taken hold, which was taken back in October 2019 when TEDxNHS did happen, and that the comments made from over 1 year ago *must’ve been submitted before my TED talk appearance, thanks to the magic of a time-machine (something these people would’ve also so naively believed in).
Meanwhile, anti-vaxxers blamed my congenital deafblindness on the fault of a previous flu vaccination (despite me being deafblind before birth!). They instructed me not to have any more vaccinations, and that I should live a life strictly avoiding hydrogenous fats and artificial sweeteners, as this was supposedly the cause of a genetic, GENETIC, inherited, disease of the muscles and connective tissue. As for the anti-Covids, I’m “making this virus sound like something it isn’t”, “portraying that random young people get severe Covid. That’s not true”. If only I could relay this same careless comment to all the grieving families and loved ones of those who have died from this supposed “common cold” so young, and to my own friend also, who I lost to Covid back in the first wave. He was, may I add, in his late 20’s with no underlying health issues. It is something that I still, behind private doors, find very difficult to comprehend to this day.
The sad truth, something that many of these people may not realise, is that really, we are all at risk of getting Covid, young or old, and unfortunately, nobody knows how bad you’ll suffer from the virus until you actually get it, quite possibly when it’s too late. In some similar context, it is like predicting the injuries a person might suffer when they walk out in front of a speeding car. Young or old aside, the level of injury would of course depend on so many other factors – what protective gear the pedestrian may’ve been wearing, the point at which the pedestrian walked out into the road, the make and model of the speeding car and which part of the vehicle hit the pedestrian. It could be that the older person survives the accident whilst the younger person doesn’t. But that doesn’t give us any reason to walk out onto busy roads, just to see what happens, does it? Likewise, take the ‘burning building’ scenario; it is impossible to know if the inhabitants of that burning building will survive, without knowing if the house has fire-doors, heatproof possessions, fire extinguishers, whether there’s even anyone still inside the property at all. But we won’t ever know unless we open the door to heat and smoke, and go inside to find out for ourselves. Truth is though, just like Covid, people are too scared to ‘go inside’ and find out. Many would rather remain oblivious, standing ‘out on the street’, and to walk on by.
In this scenario, they are the people who, whilst our NHS continuously chucks water over the flames, continue to walk around carrying the matchsticks, passing on the fire and spreading the destruction further. They are the ones who embellish the flames, and who are numb to the burns that others are unable to heal from. They are the ones who have never walked through the doors of a burning building to know what it truly feels like to be in the heat of such devastation.
Even though my Covid experience was traumatic, and the symptoms vile and debilitating, I was still one of the very lucky ones. And by lucky I mean ‘I survived’. A mother of 3, lying in the bed opposite me, who I overheard as being in her late 30’s, Facetimed her children one morning between intervals of streaming tears and gasping breaths. She told her children how much she loved them and to not ever be scared. I can recall this, might I add, because I wear hearing-aids which enable me to hear some things, despite being deaf without them (just in case any more non-believers troll me with the same old “Deaf??” question once more). Later that day, this lady was moved to another Covid area for closer observation, as her condition quickly deteriorated. She was wheeled out and the doors were closed back onto the bay. I will never know what ultimately happened to her, but I pray that she had a good outcome.
Patients like her, the ones whom I never find out about after they have moved on, are the ones that stay in my mind for a long time afterwards, and I know for certain that this is the case for so many of us healthcare staff. I am just a patient in this narrative; I cannot begin to imagine how overwhelming the thoughts, the flashbacks and the faces are to those who are thrown into the very centre of this devastating chaos, day in, day out – our hard-working, selfless, passionate, heroic NHS staff. One of the caterers, who gives out the food and drink on the Covid wards, has since become a good friend of mine, and continues to pop in to see me on the ward after his long shifts. He is another one of those passionate, selfless NHS heroes, and someone that I look across and up to, wondering how he is faring in all of this. A university graduate, who was furloughed from his new job in the first lockdown, having also to abort his post-university travels, he wanted to play his part in helping the NHS in these hard times, and he is honestly the brightest, bubbliest ray of sunshine I have met in a long while. On visiting me the other night, he described how he had been obliviously shouting out the breakfast options to two deceased patients that morning. They had died silently from Covid in the night and the nursing staff didn’t know. He quickly figured they wouldn’t be waking up to their final bowl of porridge after all. I looked at him in horror, feeling awfully sorry for what he had to witness, but he only chuckled, albeit nervously I found.
“It’s the norm up there now”, he said. Nobody came into the job to have to witness that every day. Nobody could’ve possibly imagined it all to be this way at the very first mentioning of ‘Covid’.
It’s these people though – my carers currently, but also my friends and my fellow colleagues, that I think about most. Thus, it wasn’t the comments on social media that were directed at me that hurt the most. If anything, I am not the slightest bit bothered by them, because I know deep down that their ignorance is a far greater form of deafness and blindness than my physical visual and hearing impairments will ever be. What hurt me the most, was the sheer insult and disrespect these trolls showed towards the ones who are saving and caring for us, our NHS workers. Following my last blog post, social media users heavily criticised the many wonderful and amazing nurses for letting out their emotions and crying with their patients on the really bad days, but also when they were seen to be boosting team morale, by dancing with colleagues on the good days. They were criticising these people for being human. And it got me thinking: these people, the haters and the trolls – they really have absolutely no clue, do they? These people have no clue because they are locked out, where they have no way of truly seeing what’s going on behind the closed doors of our hospitals, inside the minds of those who have to be there every day, and until they ‘see’ what’s going on inside, they will (understandably) never believe it either.
Of course, offering these non-believers and Covid conspiracists to come into our hospitals to take a proper look, to perhaps swap places with our overstretched staff for a day, would be doing no favours for any of us, given that we are, after all, in the middle of a pandemic. Hence, many of us who have been legitimate ‘insiders’ are trying to share our insights with the rest of the world via our own personal experiences and observations. Only, this is when things go wrong, all over again. I too, now ‘join the club’ in having my experiences undermined and downplayed…not because I am a patient or healthcare professional though, but all because I am deafblind…
“How the f*** can you have a deafblind medical student? Can’t they just stick to piano tuning?” one user wrote. “What 5 year old wrote this cr** – deaf but complaining about the noise…absolute joke” another person mocked. “So dumbed down their (they’re) comatose”, “she’s lucky she wasn’t labelled ‘dnr’ (Do Not Resuscitate) as well”. What these ignorant haters don’t realise is, that although unsuccessful in insulting me, they have meanwhile insulted, offended, disrespected, and completely misunderstood whole groups of society – healthcare workers, disabled people, those living with life-long chronic illnesses, and so on. To imply that disabled people should have a DNR, suggesting that they are not worth saving and that their lives are less worthy, for instance, is quite frankly, disgusting, and to be on the receiving end of this is sickening, yet in no way surprising either. Again, to those who have not walked through ‘my door’, or through the doors of others who may too have their invisible struggles, you will never know their realities if you choose never to understand them in the first place. Even those closest to us – our friends and our families, are guilty of this, often oblivious to the judgments, the misconceptions, the cruel interrogations that we as disabled people are faced with, on a daily basis.
Hence, it is only right that I ask you to next time think very carefully about what you say and do, even if aimed at one individual, before you go on to obliviously insult whole groups of society, (of which will most definitely include people of whom you yourself love or know).
In the real world though, nobody can ‘make’ someone walk in the shoes of someone else, or look through the eyes of another, or walk through the closed door of a life or a community you know nothing about. But this is what the pandemic, in many ways, has taught us so much about. Whilst it has indeed brought out the kindness, generosity and the very best of many people, opening some doors (quite literally) to neighbours and strangers in times of need, it has also let loose the lives and insecurities of so many who are still so ignorantly locked out behind this virus’ real inside truths. For those people, they will continue to walk on by, down streets of burning buildings, waving their anti-vaccine, anti-Covid flags, without the care to find the rest of us any water. Any one of us can walk down a street not knowing which houses are empty or full, who lives there or how these people live behind their own closed doors. And we will never know, until we walk into those peoples’ homes, and walk into those peoples’ lives.
So here’s the thing – the ‘life lesson’ of today’s blog and the opportunity of change I am offering you…whatever your opinions, whatever hate you are so desperate to spread, however many times you try to silence those who are just trying to highlight our reality right now – we will still come through your door if your home is ever on fire. We will still fight the flames whether or not you protest with matchsticks or fetch the aid of water for us or not. As a future Doctor myself, I will never stop wanting to learn about the inside lives of my patients so that I can understand them and their illnesses better, and with that I will also learn never to judge, unlike some, until I know. Like Covid though, whether you, I, or the other occupants of those burning buildings come out unscathed or not, is impossible to ever know until you step inside those closed doors that contain other peoples’ flames. For those of us who do care, despite in flames ourselves, sore from the burns this pandemic has scolded us with, our doors will always be open, our kindness always there. Now it’s down to those who hold the key to the lock, the non-believers and matchstick dancers; those are the ones that will determine how long we’ll have to fight this pandemic for. Yet, for all that I have received these past few days, for all that I have been scolded with lately, I won’t be holding my breath any time soon…in reality, I can only continue to hope…