On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?” I could not have imagined what lay ahead – not only for me, but for the entire world.
Living through the coronavirus pandemic is both a global and deeply personal experience. The world is afraid. With many countries now in lockdown, humanity is collectively facing the loss of freedom: the loss of freedom to move; the loss of freedom to plan; the loss of freedom simply not to be afraid.
My individual story sits somewhere among billions of others. There are people who will remember these months as the very worst time of their lives, when they fell seriously ill or faced the loss of a loved one – perhaps even both. There are families forced apart when they need one another most; families forced together when that proximity is unsafe; and people with no one in the world, now entirely alone. There are frontline medical staff risking their lives to care for those who are ill. And other essential workers daily facing a world that feels threatening.
My story sits somewhere among billions of others. There are people who will remember these months as the very worst time of their lives
Among all the stories that have rightly been told, one group largely overlooked in the media are those with existing long-term illnesses. What is a pandemic like when being housebound and isolated is your norm; when freedom is something that was lost long ago? Do many years of experience make the current situation easier or harder to bear?
In my long years of illness, I have often wished for the world to stop turning; for time to stand still and for everyone to wait for me. I realise now that there was comfort in knowing that life continued beyond my four walls. The steady rhythm of normal activity provided a point of stability against which my own turmoil could rest.
I have been severely ill with ME since childhood and am almost completely housebound – a state which in fact represents considerable progress. On the face of it, my life has not changed much this past month. (You know something is seriously amiss when a national lockdown requires no fundamental alteration to your lifestyle.) With even ordinary viruses having the potential to cause a significant relapse in my condition, I have long been practising strict hygiene. I was well prepared for a pandemic, though the need to adopt even more stringent germ control has been a stressful and exhausting process.
But even within my restricted world there are painful losses. The treasured company of my family, in particular my small nieces. A short outing in my wheelchair. I waited a very long time to be well enough to share special moments with family and friends, or to see the outside world again. Last summer, I wrote of the complex emotions experienced on seeing the sea for the first time in many years. My hold on normal life is fragile at the best of times: it is tough to lose the small achievements that were so hard-won in the first place.
There is a brutal loneliness to being shut away from the world when, in contrast to the current situation, that world continues turning without you
Dealing with emotions is especially difficult when the limitations of illness prevent any realistic means of distraction. (I wrote more on this subject in my last post, When Coping Is Too Much.) Fear is particularly hard to bear when lying in darkness with only one’s imagination for company. Some of my worst anxiety came before the coronavirus had even reached this country, but was already rampant in my mind. I’m not in a position to be able to trust my body: I’ve no idea what the consequences of this virus would be for me.
Beyond fear, other emotions have been complex and painful. In witnessing society’s response to the pandemic, I’ve found myself reliving many difficult memories from my own almost life-long incarceration. It’s been hard to see the world waking up to the implications of isolation, when it has been my reality for so long. There is widespread disbelief at the idea of a world without holidays, weddings and family gatherings. How can one survive without work, without social contact, without the liberty to travel and enjoy the open air? How is it possible to cope without seeing a partner, or family and friends?
These are great deprivations indeed, and the sense of shock and grief will be enormous for anyone confronting them for the first time. It is right that that pain should be acknowledged. But on a personal level it is hard when I have lived these losses for 30 years, and will likely continue to do so for many more. There is a brutal loneliness to being shut away from the world when, in contrast to the current situation, that world continues turning without you. For me and many others in a similar situation, our pain has long been unseen and very often unacknowledged.
Society has changed markedly in recent weeks. It is wonderful to see a new awareness of the need to protect the vulnerable, with hundreds of thousands of volunteers coming forward to offer their help in the UK alone. But it’s hard not to compare this to the lack of support that has previously been available. Some years ago I sought help on behalf of a fellow severe ME sufferer, who urgently needed someone to do their shopping. I contacted several churches, charitable organisations and community groups in their area, but was unable to find anyone who could assist.
From being invisible before, there is a sense of still being invisible now
Such an experience is far from unusual. The housebound and chronically ill have generally been viewed with irritation at best and suspicion at worst. This is especially true of government agencies and medical services, who, pre-coronavirus, considered even a telephone consultation to be the most outlandish of requests. As a result, their assistance has often been inaccessible to those who need it most.
From being invisible before, there is a sense of still being invisible now. I have heard many people rightly despair at the limitations of being confined to the house because of the lockdown, but few who have considered what it might be like to face the same circumstances when seriously ill.
I can only dream of being restricted to the house with the health to occupy myself in any way I choose. The thought of being able to leave my bed when I wish, to have sunlight streaming in through the windows, to entertain myself with music and films and learning, creates an image not of oppression but of blissful freedom. Even the opportunity to be bored seems like a privilege. For my mother too, and other carers like her, the idea of this lockdown affording abundant leisure time is very far from reality. Now that we have cancelled external carers for my protection, her every hour is filled with managing my care needs, on top of running the house completely alone.
I know many people who, despite existing in the darkest of places, have found not only the will to continue, but also the ability to forge a life of meaning and hope
Some might ask why any of this matters now. At a time of international crisis, is this the moment to focus on anything other than the immediate problem? I believe it is important that we do. As the world gains a new sense of togetherness and a wish for a kinder society beyond the pandemic, it is time for the chronically ill (and those who care for them) to be seen with new eyes.
I am part of a community of people who have lived through extreme physical suffering, and endured unimaginable hardship and loss. I know many people who, despite existing in the darkest of places, have found not only the will to continue, but also the ability to forge a life of meaning and hope. The level of resilience and resourcefulness to be found here could offer much to the wider world in this time of crisis.
When status, money and health are stripped away, one is left with a few simple truths. There is nothing more important in this world than human contact, the ability to move freely, and the opportunity to live without suffering. When all is lost, what matters most are those who remain. Those who hold out a hand in the darkness and say, through action and word: “You are not alone.”
Such a presence is desperately needed now, but will continue to be needed long after the pandemic has passed. If any good can be said to come from such widespread suffering, I hope it will be a lasting appreciation of what each of us has to offer – and an understanding that our society is a better, stronger place when the most vulnerable are not forgotten.
Image: Alex Ivashenko on Unsplash
A Life Hidden 