What if we viewed lived experience as an asset? As an asset of professional, economic,…
These are our realities, and we are the casualties – COVID-19
This blog is part writing therapy, part rant, part activism, part distress, part processing, part making peace. It flicks seamlessly between all of the above, so you never know quite what ‘part’ you’re in when you read it, heck sometimes I don’t even know what is motivating me to write it. It’s raw, it’s honest, it’s unedited. It’s ugly, it’s sad, it’s upsetting. Its full of anger and hurt and fear and frustration, desperation and depression, it’s trying to make peace, it’s wanting to fight back. It’s so many different things, and it’s true, every last word. I’ve written this over a few days and found it quite difficult, although somewhat cathartic (but not much). I can never accept the situation, but I’m learning to understand it. I apologise if this upsets people, but this is a true voice from the frontline — not the medical frontline, but the frontline of the battlefield in a war I know I’m inevitably going to lose if war breaks out (aka, if I get the coronavirus). Read on if you want an honest experience of the coronavirus pandemic from a person with exceptionally severe and complex health needs and being “she who shall not be saved”. It’s one woman’s journey through her emotions. This is real, it’s raw, and it’s right to share. People need to hear and understand the casualties of the reality of the current situation. Also, please don’t make snap judgements without reading the whole piece — this is not an attack on the decision-makers and the tough, heartbreaking decisions they have to make. It’s a by-product of these unusually difficult circumstances. Bear with it to the end — it all makes sense by the end.
This COVID-19/Coronavirus pandemic is spreading rapidly, the UK is now on lockdown for 3 weeks. I will be isolating for a minimum of 12 weeks, possibly may have to be longer. I cannot manage without any outside support, as I have 24 hour care needs, and am usually cared for by intensive care nurses 16 hours per day and trained carers overnight and doubling up alongside the nurse in the day, but my nurses could be recalled to the NHS at any time. My mum can manage the nursing role, but she can’t do my care 24/7 as she can only sleep in 1-1.5 hour increments, and has to be up at 7am for first IVs, and not to bed until at least 11pm after IVs finish and the carer arrives. So even if we ‘do away’ with the nurses during the day, my night carers are definitely still needed – but there are less carers than nurses, so less risk of infection. We are practising strict PPE wearing and infection control measures. I need to protect myself, but I also need to protect my primary carer (as in, not from my care package), whom I cannot manage without – and that’s my mum. She’s also one of my PAs and does most of the double-up care alongside the nurses, and she is my backup – I need her to be well to help me, if she goes down I’ll be seriously screwed. So mum and I both need to be kept away from any risks of getting the virus insofar as is possible. However, my reason for keeping away from the virus, goes much much deeper.
I know full well in this COVID-19 pandemic that my life is not one that will be saved. I will be considered too frail, unlikely to survive, unlikely to be able to be weaned off ventilation again on the other side, as I have respiratory muscle weakness (fortunately not currently needing ventilation), and unlikely to be returned to a meaningful quality of life – IF I survived COVID at all in the first place. On the clinical frailty scale, I’m a 7 or even 8. They don’t save people at that level, when forced to choose between them and a person with less needs and a higher survival rate.
I have had to accept this fact over the last few days. It doesn’t sit comfortably with me, I rage and cry that my life is devalued to the basis of my disabilities and needs rather than my life, outcomes and the difference I have made to the world – if you want to look at “worthiness” I think I have more than proved it, through all the work I’ve done, the difference I’ve made, the lives I’ve changed, the policies and guidance I’ve helped create, the behind the scenes work I do all the time in NHS and palliative care and personalised care and disability and charity work and so on, influencing the Director-General of the World Health Organisation to ensure palliative care is firmly on the agenda and that has been achieved, and having a personal friendship with him now. It’s changing hearts and minds and leading to improvements in health and care, it’s so many different contributions I’ve made to society through my work, my passion, my determination, and my skills and experience, it’s the amount of people who could easily stand and explain who I am and what work I do and how I’ve impacted upon their lives – not just disabled people, but professionals, the public, policy makers, MPs and ministers, directors and trustees, senior management teams, charities, and individuals working right across the NHS, health and social care sector and the world of disability, health needs and life-shortening illness. I’m the 9th most influential disabled person in Britain (2019) and have an MBE for my services to young people with disabilities, an Honorary Masters Degree for my commitment to public services, and in 2019 was invited to become a fellow of the Royal Society of Arts for my commitment to ensuring the fulfilment of the rights of disabled people. I have more than proved my worthiness of being alive on this planet, but it counts for nothing in this pandemic where my life will be deemed not worth saving, and where cut-throat (metaphorically) decisions are having to be made due to the limited resources and this overwhelming voracity and the large numbers becoming infected with COVID – we’re struggling now, and we’re not yet even near the peak.
I have had to make the difficult step to say that if I get COVID-19, I will not be going to hospital. Why would I go to hospital if it’s not going to try and save me? And at the same time leave me vulnerable, exposed, without the medications and TPN and IVs and specialist ITU nursing I have at home, to be in discomfort with staff who cannot provide the level of care I need and be isolated from my mum and sister and my beloved Assistance Dog Molly? I’d only contemplate hospital in the first place if I was getting desperate and needing intensive care beyond what we can give at home, with one of few things we can’t do at home being ventilation – but they won’t ventilate me anyway. Also, after all, my advance care plan (as it has in all versions I’ve had since I became palliative at the age of 16 – I am 10 years past my expiry date, as I call it) states that I want to be cared for and die at home. Equally, I could have the virus and get through it with the care I receive at home. But if intensive care beyond the scope of my homecare isn’t going to be provided, there’s no point in me going to hospital. Whilst the decision not to go to hospital in the first place is mine, the decision about treatment for COVID in my case isn’t within my control. So the “decision” I have made is about priorities, but the decision about care and treatment is not within my gift in the first place. I have to accept my life will not be saved. At home I have TPN, IV fluids, strong painkillers (Fentanyl and IV Paracetamol), antiemetics (intravenous and buccal), a mild antipsychotic drug to help me sleep and help restlessness, nebuliser, cough-assist (manual – bag valve mask style device called a lung volume recruitment device that helps me fully ventilate my lungs and cough better) – I even have IV antibiotics in stock at home, though they’re completely useless as this is a virus – and could easily source anticipatory or end of life drugs, as we have the facilities to manage any other items – syringe drivers, IVs, injections, nebulised medications, and could easily take on oxygen if that is even in sufficient supply to allow end of life patients to have it – or equally to ride out the virus, which I may be able to do. Not only do I have ITU nurses caring for me at home 16 hours per day, the fantastic hospice, a good GP, community nurses who we can call upon, and the advice of a world renowned team of medics and other professionals who can advise and support planning, but I also have my mum; my “I never want to be a nurse” mum, who can do many tasks a nurse can do – TPN, she can mix and prepare and administer most IV infusions and boluses, taking bloods from a central line, dressings, wound care, injections, syringe drivers, place subcutaneous lines, she can catheterise my Ileostomy when it blocks to relieve a bowel obstruction, she can catheterise my redundant bladder to drain the copious amounts of pus that drains from my it (it’s redundant due to an Ileal Conduit/Urostomy – they didn’t perform a cystectomy due to issues of me surviving the op), she can administer nebulised drugs, she can change stoma bags, she can cauterise granulation tissue around my PEG, she can remove stitches, and she knows her way round an oxygen bottle, and much much more. At home I have my own bed, my home comforts, Molly dog, mum, my sister, staff who know me well, I can control my environment, I can have treatments on time and PRN administered quickly unlike in hospital (the latter statement I make is no one’s fault – it’s just a reality for me in hospital) and I can watch TV, go on my laptop, and at end of life, have peace and quiet, have the people I know and love around me, Molly on the bed with me, and we can make my ending as peaceful and pain-free as possible.
The issue of “worth saving” does conjure up some feelings of resentment in me, that after all I’ve done, contributed, the difference I’ve made, lives I’ve transformed, policies I’ve changed, etc. that my life is inherently not worth saving, due to the severe level and complexity of my needs and my highly reduced and questionable ability to survive acute events such as this virus, but much as it makes me livid and distraught, I am a level-headed person who knows that this is about saving those who have the highest chance of being saved. My body is so much on its last legs — like I said, I’m not far off 10 years beyond my expiry date — and I have so much going on – neuromuscular/mitochondrial syndrome without a name that is either ultra-rare or unique and chances are I’ll never find out what it is, and even a diagnosis won’t change treatment, and then multiple organ failure, TPN and IVs dependency, venting PEG tube on 24/7 drainage, Ileostomy, Urostomy, restrictive lung disease and respiratory muscle weakness, autonomic neuropathy, a bowel that is always in and out of obstruction, chronic pancreatitis that keeps flaring up and down, a (redundant post Urostomy in 2014) bladder that is full of pus from years of infections in the bladder wall that no antibiotic will treat, numerous incurable infections resident in my body (and not just colonisation, but active infection), an immune system that doesn’t fight infection well and in whom I can be septic and have normal white blood cell counts, somehow managing to survive sepsis 14 times (not including hundreds more infections caught before sepsis), and this newer possibly autoimmune issue which is causing skin breakdown, mucosal ulcers all over the place, eye dryness and irritation, joint pain and swelling and seizing up/loss of movement in some joints, sleepiness / severe fatigue / loss of productivity, and causing me to be feverish 38.4-39.5 at least 80% of the time, and all that comes with a fever (chills, rigors, all over body pain/muscle aches/joint pain, headaches, nausea, sweats, sleepiness/fatigue, etc.) and more. Then there’s all the other things I’ve not even had a chance to mention, but that’s enough. Do I have a high enough chance of surviving the virus, for my life to be saved – potentially at the expense of someone else’s? It’s a funny head space to be in, feeling like I want to live at all costs, but knowing extensive efforts to prolong my life – if anyone would do it in the first place – could have an offset cost of someone else’s survival. Hence why my life won’t be saved – I need too much support, and intervention, and my body is weak, and my general prognosis is not great, and the probability of me surviving compared to most of the population isn’t exactly great odds.
I’ve gone through the stages of grief (formulated by the late, great Dr Elizabeth Kubler-Ross): these are denial, anger, bargaining, depression – but the “end” of this cycle (DABDA) for me right now does not end in “acceptance”. I do not accept this. I do not accept that my life is less worthy in the eyes of who should be saved. I don’t accept that I deserve attempts to save and sustain my life to be taken away in favour of someone with less needs. I don’t accept that I’m not considered to have sufficient chance of survival to initiate extensive and intensive measures to support and potentially save my life. The end of that cycle in this case does not end in acceptance. Understanding? Yes. To an extent I understand. Professionals need to treat people with the best chance of survival. I don’t have the greatest prospects. So I shall say for now that ‘end stage’ of that grief cycle right now is not acceptance, I cannot accept I’m not worth saving, but I understand why it has to be this way. I understand it’s not personally levied against me because people deliberately want me to die. It’s not someone in an ivory tower saying “get rid of her”. It’s a pandemic in which we have so few resources compared to the insurmountable, unsustainable demand, that my health means that if there’s me and someone else without health needs vying for the same ventilator, that the person with the greatest chance of survival will get the ventilator.
I just want to live. I have so much to do, so many plans, so many ideas. I’ve got a life to live, a difference to make, people to educate and enlighten, policies to help build and change, services to help improve, people to support and mentor, and precious time with my family to be had. I’m nearing 10 years beyond my original prognosis. I shouldn’t still be here. I’ve survived sepsis 14 times – is that not a great track record? Should I put “14 straight A stars in sepsis” on my file? Sorry, just my bad humour. But it does show that, despite how weak and fragile my body is, I’ve got a 100% success rate in surviving life-threatening events, not just sepsis, dozens and dozens of times I’ve survived when told to expect me not to, but I’m weak, frailer than I’ve ever been, as debilitated as I’ve ever been; if it’s a choice between prolonging my life for months, maybe a few years, possibly even more, but with all my health needs, complications, and whatever the virus itself had done to me – maybe I’d be dependent on ventilation afterwards, as the virus attacked my already weak lungs and body? To save me knowing all of the above and the small chance of my survival, vs someone who could survive with a high chance of doing so from the outset, and who has a chance of survival and of going back to a “normal” life post coronavirus? This isn’t about personal worth, as it may sound at times in this blog. This is indiscriminate. This is about who has the greatest chance of survival. My life matters, my life is worthy, my life is valuable, my life is appreciated. But we’re in a crisis of innumerable proportions, and people on the front line have to make heartbreaking decisions. Decisions that will haunt them for life. Decisions that will go against everything they believe about being a doctor or nurse. Decisions that aren’t fair in any way, but still have to be made.
I say thank you to the NHS, for all everyone is doing. I may make it out the other side of this pandemic; but I may not. One thing I can say, however, is that the NHS kept me alive against the odds for years. It gave me the ability to live a amazing life and to achieve great things and make a difference in the would.
My life matters now, and it matters after this. I’ve created a legacy to be proud of.
One of my favourite quotes is
“We all die. The goal is not to live forever. It’s to create something that will.”
Please, please, please, if you read this blog, create an advance care plan.
Create an advance decision for what treatment you would or would not want.
Appoint a Lasting Power of Attorney, especially for Health and Welfare but if possible for finances too.
Create an advance statement, recording your preferences and important information about you, what matters to you, what you like and dislike, and so on.
Have the conversation with your family, please, but make sure ALL of you do the above. Next of kin cannot legally make decisions. Only an LPA can. If your next of kin disagreed with doctors, the doctors decision would be followed unless documented evidence and the appointing of a Power of Attorney and/or the person had an Advance Decision staring their wishes. Take matters into your own hands to ensure YOUR wishes are followed. Now is the best time. Don’t leave it until it’s too late.
Go to https://mydecisions.org.uk
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Dear Lucy firstly well done you! you are very brave indeed. Whilst you might think it is a rant it is, as you say cathartic. You have expressed so brilliantly your self worth, so be completely assured you are worth it. You do count irrespective of how you might perceive it. You are one incredible, gorgeous young woman who has contributed so much for someone so young. Take heart, your legacy has been created and you must be very, very proud in what you have achieved. But at the end of the day you are loved, you are special and you are you! With my huge admiration , love and recognition. Peter xx
Lucy this is such a well written blog. I’m just awestruck by your writing quite apart from your eloquence in describing your feelings in the current situation. Thano you for writing this. We need these honest personal histories and testaments. Who knows what will happen Lucy to any of us. But my God you are one hell of a kick ass woman. You Do make a difference you have made a difference and will continue to do so. Very very best wishes for the future to you and Mum and Molly. Xxxx
Your life is not less worthy. I think we have to absolutely reject this choice that some are less worthy – because of disability, age, viability etc etc and some more worthy. I demand – we should all demand – that in the fifth richest country in the world everyone who can be saved by adequate medical intervention should be saved. Where is the anger that we are being asked to accept this false choice? And by the way well done Lucy for all your amazing contribution and advocacy and for writing this. But also those who have made no contribution of that order also don’t deserve to be left to die. I think the message has to be we absolutely do not accept value judgments – and particularly this government’s value judgments – on the worth of anybody’s life. Fund the damn service, provide the ventilators, provide the care, fund the protective equipment for the medical staff.
Hi Lucy, I don’t think it’s anything to do with valuing or devaluing people’s lives. The NHS cannot cope with the number of critically ill people and there are extremely limited resources for patients and NHS staff alike. It sounds as if the guidelines are set up so that priority is given to those likely to make a full recovery. I actually think this makes sense. The alternative would be to give the resources to someone who is unlikely to survive in any case and then let someone who has a high chance of recovery die instead. That scenario could end up with two deaths: one inevitable death and one death that could have been avoided. I’m not saying the situation is fair. Its disgraceful that we are in this situation due to Tory cuts and then Brexit. However, I really think it’s a pragmatic rather than discriminatory stance. I say that as someone with grandparents and siblings in the high risk/vulnerable group who are also likely to be low down the list of priority. I wish you all the best in isolation and hope that you avoid contracting this awful virus so you can continue your important work.
To the wonderful intelligent beautiful lady Lucy. I have to say I wasn’t aware of your endeavours your commitment to helping and changing society. This Covid-19 has a hell of a lot to answer for – but I’m thankful that I’ve met you, if only through your web site! This virus that we find ourself facing is terrifying, relentless, unforgiving and for those who have serious health conditions it’s tenfold. I know if you were my daughter I would be beside myself with worry for you. I hope and pray the careers who care for you stay with you throughout this pandemic. The world needs people like you, passionate, knowledgeable, courageous, someone who wants to make a difference and does! So Lucy Watts you stay strong continue to plan your future. Love N hugs to you xxx
Dear Lucy ,
Just read you article. Stay proud and strong for being an amazing advocate .That’s so important , who knows what will happen to any of us, so hold on to all the good that you are doing .
Best wishes Georgie x
Hi Lucy, I read the abridged version of your blog on the BBC news, and was struck by the aspects about stages of grief. Thank you for what you have shared so eloquently. I’ve studied a lifelong learning method for some four years, called Emotional Logic, that is based on some of the work of Kübler-Ross amongst others. What I have seen in practice in working with a range of students with this approach is that grieving within a situation is very multi-factored, and that considering Acceptance or Bargaining for each named loss within a situation (many of which may be hidden on first inspection) is more fruitful than an all-or-nothing approach. In this way, the useful purpose of Depression (“Have I reached my limits?”) can help to inform us, for each small named loss, whether energy is best spent trying to recover that loss (through Bargaining, albeit this may feel risky with no guarantee of success in recovering that loss) or to seek Acceptance in letting go of a very specific aspect of the bigger situation and freeing up energy to explore other aspects of life (although some sadness may naturally remain). I haven’t found Acceptance to be the end of the story at all. This is in no way meant to trivialise anything you’ve written and your real sense of the truth of your specific circumstances. I just wondered if it might be of some interest or use to you as you continue to reflect in the days ahead – offered here in good faith. Also, I noticed a recent article (23-Mar) in which David Kessler (a close collaborator of Kübler-Ross) has been given permission by Kübler-Ross’s family to add a sixth stage to grief: Meaning (see https://hbr.org/2020/03/that-discomfort-youre-feeling-is-grief?fbclid=IwAR0aaecve0VxfdibBpeBr7WP6Ym1uKMBCB8NckihWv50B4VNer88Tr2CVmE) – I’ve not read up in detail at all yet, but thought it might be of interest (?). Anyway, just felt inspired to find your blog and write this note – hope its of some use. I also hope and pray you stay safe, and continue to add valuable insights into many conversations for some time to come … with very best wishes, Rich x
You repeatedly state you have life limiting multiple and complex medical issues that require the services of highly trained medical personnel for 16 hours every day, plus medical equipment and specialist medicines to keep you alive. You sit on multiple committees whose remit and agendas are promotion of patient care, quality of life and the disabled, including, above all, the fair distribution of limited NHS Resources. You even write that should you require aggressive intervention, namely artificial breathing by use of ventilator, doctors, because of your medical and physical disabilities, would find it extremely difficult to wean you off once on and the likelihood you not survive or recover from such a procedure is great. Yet you say that you have as much right to have that happen because your perception of your self worth is greater than that of ,say , a young Mother, a newly qualified doctor, nurse, paramedic, engineer electrician etc who may even be the sole breadwinner in the family. This Government has washed its hands figuratively and literal!y along with any responsibility of providing sufficient resources and healthcare for all in this crisis. Putting the onerous task on the shoulders of an already beaten down NHS is just another example. Having to” play God” as one Trauma Consultant put it, is something they will have to live with, but they will do it, with dignity and compassion. If that means only those with a high survival rating get treated then so be it. I can live with and I certainly wouldn’t be moaning about it. FYI I’m in the group that wouldn’t be treated. Just to put this into context, a close friend, healthy, fit mid 40’s was taking to hospital by Ambulance, tested positive for Covid19, was strugg!in g to breathe had excess high temp. He cou!don’t stand unaided. He was sent home! NOT ill enough for admission. He died on his own 24hrs later, Police had to break in as no one allowed anywhere near. So your rant about not being put on ventilator because of your medical issues seems rather pointless.
It’s not pointless to want measures to be taken to save my life – it’s all anyone wants to know that their survival would be considered worth fighting for. I live a life of purpose and a life that contributes to society, so why isn’t it equally as worth saving as the people you list? It’s not about be being above anyone else, but I don’t think I should be beneath anyone else either. It isn’t about people being more or less worthy, but the fact is my life would be considered not worth expending resources on, and that is difficult to process – this blog is me processing my thoughts. This blog is my personal journey going through how I feel – it doesn’t make it fact, or correct, it just was my way of processing how I feel about things and the situation at hand, and conversations my doctors have had with me. It is in no way an attack on the NHS, I do say in the blog that I am very grateful to the NHS for keeping me alive for so long, and supporting me as it has, I wouldn’t be where I am today without the NHS and have been able to live an amazing life thanks to it. I support the NHS down to the back and beyond and do say in the blog about this and also the fact that this is not about discriminating against me as a person, but is a product of the circumstance where we have to save people with the best chance of survival. That said, in any other non-COVID time I would be intubated and ventilated, as I have been previously. I don’t say that I definitely wouldn’t be able to be weaned off a ventilator either, but that compared to a healthy person who has no underlying condition, I do have less chance, and could be seen as not being ‘for ventilation’ purely because I have less (not no) chance of coming off ventilation – but I have come off a ventilator numerous times already when I have suffered other acute events. I do say that I know that someone fighting to save my life, could potentially cost another, and that I find hard to swallow, that wanting my own life saved could cost another. However, I still would hope that my life would be seen as ‘worth’ (for want of a better word) saving. This is not about saying I should be top of the list to save, at the expense of all others, but that I struggle to think that measures taken to support the lives of others may not be performed in my case. I appreciate your comment and respect your opinion on this, but equally the blog has not always been interpreted in the right way. I don’t criticise the decisions, I don’t say I am more worthy, but just that I am not less worthy of saving purely due to my underlying condition, and this is me dealing with the situation at hand of knowing that my life may not be considered to be saved by intensive care. I have nursing at home to meet my needs but the one thing we cannot do is ventilation, which would be one of very few reasons why I’d even go to hospital in the first place. Anyway. I can’t change your perception of me based on a blog, but I hope you can understand my viewpoint and that this blog is literally me going through the motions, processing my thoughts, and doing my best to accept things – and that I understand the situation at hand and the terrible decisions that are having and will have to be made.
Hey Lucy, you ser not going to die! You have been through so much and you will get over this too.Yes you can.
If you loose hope,you will loose your life.Please be positive.
I pray a lot.I am going to pray for you.
Lucy, I have come to your blog via the BB article I have just read, and I wanted to pass on my very best wishes to you and I do hope you will come through this dreadful time unscathed.
Love and best wishes
Martin
Followed the link from the BBC article. I wanted to say something but words are difficult and everything from a stranger seems trite. Thank you for everything you’ve done and what you’ve shared here. Even this blogpost makes a difference. Be safe.
An amazing and incredibly moving blog. Huge big hurrah to you. I’m also on the vulnerable list but way way way down the scale compared to you but thoughts have crossed my mind & you’re right – must deal with it & treatment & what want to happen etc. I also decided I don’t want to be on a ventilator etc. Good luck. Hopefully this post is just academic but I also appreciate this thing is here to stay so we’ll be confronting versions of it every winter period etc. Stay well, keep strong & never ever underestimate the power of the mind. Big big shout out to your Mum & Sister as well. Look after yourselves
Dear Lucy
This life is not all that there is. There is an incredible life after this life, awaiting all those who turn to the Lord Jesus Christ who has already, through his great love for you, done everything needed for you to be saved when he suffered horrendously, was nailed to a cross, died and then rose from the dead, paying the price for everybody’s sins instead of us. Just go to him as you are and invite him into your heart to be your Lord and Saviour and then ask him to forgive you of your sins. He stands at the door of your heart willing you to believe in him. If you do this he will save you and give you eternal life. God Bless you with his truth.
Thank you for this blog. I am in awe of your thought process and I am ANGRY that this pandemic is here. Am saddened but I am sitting here and just, absolutely speechless at you clarity, your courage and you have given me so much by this blog post. Just awesome. If I were half the person that you are, I would be so proud.
Thank you.
Thank you . This is awesome, and my heartfelt thought go to you. We’ll get you through, and ensuring that we don’t spread this shitty disease is at the heart of it. Stay at home!
I am very very moved by your story. I have my fingers crossed for you and a tear on my eye.
This has broken my heart.
Please stay with us.
I had never heard of you before reading this blog post.
What you have written is truly inspiring. You are so honest about your feelings and don’t shy away from expressing despite the risk that some people may condemn you for them.
You could have just written a blog about how you are happy for others to have their treatment prioritised over you. A blog like that would probably hit the headlines and go viral.
But instead, you take a social risk and write a wonderfully considered piece about how you actually feel and show such insight. Neither is it onesided.
Lucy, you are so amazing
Xxx
Lucy, you have all my admiration from here in Germany. I suffered from septic shock and pneumonia once, and it was awful, and I nearly didn’t make it. 14 times, wow. I am hoping for your sake, and many others, that it never becomes so bad, You are a tough lady. I hope to be reading your thoughts for a long time to come.
Lucy, I can’t imagine how stressful it must be to be you at the moment, but please don’t think that people don’t value you. The whole country has given up its freedom, and many are forfeiting their own health and livelihoods, to protect people like you and avoid the situation you fear where there is a severe shortage of ventilators. If this fails it won’t be for lack of trying. By all means rail against Coronavirus and the condition that means that, even if there were an infinite supply of ventilators, it may not do you any good: these things are totally unfair and tragic. But to feel that a society and a government that is already putting the needs of you, and others like you with weakened lungs, before those of anyone else does not value you for who you are is tragic also.
Thank you for speaking out and helping others to come to terms with this crisis. I have known from my own relatives experience that making plans for the end of life is an important and often overlooked part of it.
There is nothing more we can do to stop this disease – even the scientific advice that prompted the current lockdown is clear that we can only slow it down, not stop it – but there are as many surprising survivals as there are surprising deaths, for example my family friend who has cancer but has recovered from Corona.
So best of luck, and keep fighting!
Lucy, thank you so much for your gift of this blog ! Through putting your thoughts and feelings into words you have helped me and I’m sure many others to get our heads around this predicament. You are making such a difference ! Keep safe ! Val
I feel some of the same deep-seated panic and frustrated anger that I read in this blog entry, Lucy. I would encourage you to resist letting society off the hook for creating the conditions in which the value of one life has to be measured against another in the manner you describe. A greater global effort to monitor and address pandemics, a greater local prioritization of health care workers and supplies, a political philosophy that views individuals in terms of care, rather than economy – heck, in the UK’s case, a prime minister who didn’t worsen the situation with a eugenicist notion of developing ‘herd immunity’ – any of these could create new conditions in which your life wouldn’t suddenly be precariously on the brink of becoming ‘too much of a burden.’ All to say, I’m grateful to hear you scream out loud and urge you to trust your instinct that this is downright unacceptable.
Dear Lucy
I have just read your blog. All I can say is thank you. I have Pulmonary hypertension CHD and Kyphosis I am weak but like you have come through many bad times when the odds were stacked. Never in my life have I felt so angry and out of control, I know how this pandemic works and it’s the survival of the fittest and it is so unfair why should our lives be any less worthy than others. It scares me so much, I am scared my health is deteriorating due to the postponement of my treatments and long term this will have a severe effect on my health. I am frightened of being left to get on with it. I do not have a LPA or ACP but as of today I am going to proceed with one. I have not done it as I think its facing reality but I want to make my own decisions and what is best for myself and loved ones. Lucy you have inspired me and thank you. X