After a pretty deep conversation with my father last night about his condition and his outlook on this pandemic, and after being pointed in the direction of an article by 26 year old, Lucy Watts MBE recently on the BBC Online called: Coronavirus: ‘I know my life will not be saved in this pandemic’, I felt inspired to write this piece and explore this issue.
I have to point out from the off, that I have so much admiration for all NHS workers during this time, working tirelessly around the clock effectively risking their lives to help save the lives’ of strangers. However, we have heard in numerous cases that operations have been cancelled, vital treatments stopped including chemotherapy and my father’s fortnightly infusion amongst other things in order to help combat the influx of coronavirus patients whizzing through hospital doors. This all comes following ethical guidance released by the British Medical Association essentially advising doctors and nurses to prioritise care to those who are ‘most likely to recover’. Of course, those decisions for the majority of the staff will be agonising and hugely difficult to make but nevertheless, it is a choice they are required to make, and they will.
‘I accept it,’ my father said to me last night as we spoke about this very topic, almost accepting defeat if he were to get the virus. I am no medical expert, in fact I am far from, but I am the daughter of a good man, who has a life-limiting condition. Many of you regular readers or followers, will have seen the images of us together with Simba on Instagram, so this may be known to you already. His condition is called Glycogen Storage Disease Type II (known as Pompe disease), it is a rare autosomal recessive metabolic disorder which damages muscle and nerve cells throughout the body. Over time, the muscles essentially waste away and become unable to use. Over the years, his condition has worsened, although he has beaten the odds given by the doctors year after year and I am sure, continues to do so. Around 5 years ago, he began to use a wheelchair pretty much permanently after his legs were becoming too weak and his walking too unstable.
Much like Lucy however, he has one of the soundest and most powerful minds of anyone I have ever had the pleasure of meeting so far in my 24 years. I am not just saying this because he is my father, but because it is true. He’s had a long and successful career as Managing Director and then Chairman of the company he worked for, and was (and still is to some) a real asset to the company, despite his condition.
For me, it is tough and frustrating (for him I imagine even more so) walking beside him as we make our way through the town or to meet new people and they’ll automatically devalue him in comparison to me or them (being able bodied) and assume he is mentally incapable too as a result of his condition – to some he is even invisible. We often joke that we need some spikes on the edges of his wheelchair or something!
Locally, Dad is somewhat of a local-celebrity, everyone who has given their time to get to know him, knows him. He can chat for hours over a coffee in our local cafes or with a glass or two of wine in the summer months. Walking through the street, there are hellos and waves left right and centre, he knows far more people than I do. We can rarely sit down without someone coming over to say hello; a wonderful thing. They, like I, know how wonderful of a man he is and value him as a friend or acquaintance, and as a result – his life.
However, and we get to the crunch now, the strangers in the ICU or hospitals won’t, none of this would matter to them. Why would it? They don’t know him from Adam. The soundness of his mind, the incredible things he’s achieved, the things he is still yet to achieve and experience, accompanying us down the aisle for one, the grandchildren he is yet to meet and perhaps above all else, the wonderfully decent person he is won’t matter when compared to a number of those able-bodied patients.
And yet, as we discussed last night, a percentage of those ‘healthy’ patients, will have done some terrible things in their lives, perhaps they scrounge off of the council or tax-payers, they could be domestic abusers, they could be or have been criminals and yet, none of that matters when it comes down to the question of who lives and who is essentially allowed to die. What matters is, are they able-bodied or not? If so, everything will be done to save them and once saved, they are released, and sent home to perhaps commit further crimes and cause further suffering to others…. however my father, a far better human being would have been allowed to die. Yes, he’ll have been made comfortable, given some pain relief, a comforting nurse’s hand to hold in an failed attempt reassure him, but that will likely be the extent of it.
I guess in all honesty, the intention of this article really is unclear, it is something I felt passionately about exploring on the platform I have built because in part, I have an ability to influence others and share this reality with them, but also it is a rant, a brain-dump of my thoughts and feelings towards this; anger, pain, sadness, fear are just a few.
Dad is now on day 26 of self-isolation, with no end in sight. We are all being as careful as we can when it comes to providing him with care and support when he needs it, whilst trying to keep away any risk of infection, so much so that I won’t go into his flat during this pandemic, I’ve only visited him from outside. He is only visited by my Mum, Mandy his ‘carer’ and up until recently his nurse who provided him with his infusion every fort-night, this has now stopped for the forseeable future, the effects of stopping this on his body and his condition are unknown… another worry. However, a catch-22 situation, if the nurse was to come and administer the medication during this time, could they accidentally bring COVID-19 in and contrastingly, what affects will the absence of the medication have on his body? He cannot win it seems.
Mum laughs as she tells me how she won’t even utter a word to Dad when she goes to assist him during this time, until she has bleached door handles, bin lids, anti-bacd all the surfaces, cups, taps, you name it. Anything he might touch or even look at, is disinfected in a devoted effort to keep COVID-19 out.
Dad has expressed that he has made the decision NOT to go into hospital if God forbid, he contracts COVID-19, because he knows he won’t be coming out again. I also have a number of friends who have had vital treatments stopped from chemotherapy to intensive rehabilitation therapy…
It really is a case of survival of the fittest. Even when he suffers from a regular seasonal cold, his breathing is drastically effected and with the severe effects of COVID-19 affecting the lungs and breathing of its victims, he wouldn’t stand a chance without the highest level of care – which, would be prioritised for the able-bodied patients.
It is important to mention here, I think, that this is a personal choice for a number of reasons; he knows the outcome, he knows he’d be away from those who love him in a environment rife with fear, sadness and pain as well as the medical point that, he cannot have oxygen – if he does, he will essentially stop breathing. He has a disorder in addition to Pompe disease which can be likened to COPD. A high level of oxygen in his blood will be too much for his body to cope with as his body works on a high level of CO2, so giving him O2 drives the level of CO2 down in the blood and he looses the drive to breathe. With oxygen treatment being provided to COVID-19 patients, he wouldn’t survive this and therefor there would be little they could do if the virus affected his lungs, heart and wider cardiovascular system which in severe cases it does.
Like Dad, Lucy has had to come to terms with this, and has made this decision too. She says, ‘I have had to accept this over the last few days. It doesn’t sit comfortably with me. I rage and cry that my life is devalued on the basis of my disabilities and needs, rather than my life and the difference I have made to the world.’
As the 9th most influential disabled person in Britain, with an MBE for services to young people with disabilities, in 2019 she also became a fellow of the Royal Society of Arts for her commitment to disability rights. She goes on to explain, ‘I have more than proved my worthiness of being alive, but it counts for nothing in this pandemic. I’ve changed hearts and minds through work, passion, determination, skills and experience. But my life will not be deemed worth saving where cut-throat (metaphorically) decisions have to be made due to limited resources and the large numbers infected with Covid – we’re struggling now, and we’re not yet near the peak – I have to accept my life is not a priority and will not be saved.’
Something unimaginable to have to come to terms with as an individual and whilst I can only stifle a thought at how my Dad might be feeling, along with so many others, the effects this has on the families of those who are disabled is huge too. I, along with my sisters are having to come to terms with the very real possibility that, we could lose our Dad to COVID-19 because he is disabled and as a result, will not be saved. Unfathomable really, isn’t it?
And I’ll be honest, I don’t know how I feel. I am furious that this is real, this is the truth of it, I am full of anxiety and fear for my Dad himself, but also for the thought of losing him as a result of this. Like Lucy, and perhaps unlike my philosophical Dad, I do not accept it. I will not accept it. His life, as a ‘disabled’ person, along with the lives’ of Lucy and the thousands of other disabled individuals around the country are just as worthy of being saved than yours or mine.
This article/brain-dump is not fact as such, but a reasonable assumption based on the BMA’s guidelines and the reality of the current situation and statements given by Ministers, doctors and scientists. It is a real moral battle field and one I don’t think we will conquer, of course nurses and doctors would love to be able to save everyone (I don’t doubt that for a second) but in reality, that isn’t possible and so they are left with a choice; who lives and who dies? A hugely paralysing choice and one which I am sure will have long-lasting affects on many, but so too for me and my sisters will the stark realisation that, my father; the greatest man I know and one who has achieved so much good in this world, been a model citizen throughout his life, will essentially be allowed to die if he contracts COVID-19.
I’m not ready to say good-bye yet… none of us are. I am humbled to hear from him, how many people have been in touch to see how he is doing and make sure he is ok, that just shows you doesn’t it? He’s valued not only by us, his family but by so many others too. Thankfully, as I sit and write this he is in ‘good’ health and there are no signs he has contracted Coronavirus, but after discussing the reality of the situation together last night and after hearing his decision not to go into hospital should he get it (one I wholeheartedly understand), I felt compelled to compile this.
To my Dad, my best friend and my inspiration. You are so loved. You are so valued. You matter to us. X