Can it only be a matter of weeks since all our lives were so dramatically upended?
Today, everything is either “before coronavirus” or “since coronavirus”. I watch TV shows and worry about the actors and their lack of social distancing. I think back with amazement at meeting a friend for lunch in mid-March and how utterly normal it was.
I remember fuming at having to drive round and round until I found a parking space. Those same streets are deserted now, the restaurant is shut until further notice and I am unable to meet my friend.
We are beginning to accept that although some restrictions will be lifted in time, nothing will ever be the same again. Like so many people, I terror-scroll, if only to get a grasp on the situation as the enormity of it still blows my mind. To keep a handle on this, I also try to believe that something positive can come from this, in amongst unimaginable suffering and fear.
Focusing on the positives
From a disabled or chronically ill person’s perspective, I hold out hope that fundamental change is underway which may, somewhat paradoxically, alter our lives for the better when this is over. This is my wish-list of the things that I hope we don’t forget:
Allowing the world to come to us
In the last couple of days, I have been on a live safari in Africa, watched Jane Eyre at the National Theatre and met up with eight other people who live with MS for a good chat. All from the comfort of my own home. Newspapers, websites and emails are flooding in with lists of ideas and opportunities to experience life without leaving the house.
Since my MS diagnosis, I often felt I watched the world pass by my window as relapses and treatment kept me housebound. Now it feels as though the world – so much of what had been out of bounds before –is coming to me. Long may it continue.
Every day there is a new leaflet on my doormat from a newly-formed neighborhood group, offering shopping, support and friendly phone calls. I have been lucky to have friends offer this kind of community spirit before coronavirus, but the thought of strangers caring enough to do the same has been enough to make me cry at the sheer humanity of it. Let’s not forget these initiatives when life resumes once more. There have always been people needing extra support and that will never change.
Empathy and awareness
Since coronavirus, a lot of people have asked me how I coped at home for extended periods of time, and I am more than happy to dispense tips and advice. How strange that the chronic illness community should be in the position to be the experts now that we are all in the same boat.
I would love to think that this will encourage a deeper level of understanding and awareness of the fact that after diagnosis, for many disabled people, our lives changed overnight. Mine did, and I am still recovering from the shock of it, eight years later.
How many disabled or chronically ill people have been told over the years that remote learning or working from home was, “just not possible”? I was told it would take years, the infrastructure was simply not in place and yet… it happened within a few weeks. It is possible and it must continue, no argument, as there is none.
Telemedicine and digital healthcare services have long been a cherished goal for many disabled charities, yet this was often seen as expensive and burdensome. Lack of infrastructure again, but no longer. Similarly, my cat had her very own virtual veterinary appointment last week, for a recurring problem. Using video chat, she was quickly diagnosed with the same ailment, payment was taken over the phone and medicines were dispatched the same day. This may of course not be possible in every circumstance, but the relief was immense, for both me and her. She is fully recovered and back to her usual self. This approach has to be taken forward, surely?
A slower pace of life
There has been a lot of discussion from people who would normally be leading hectic lives, suddenly having the opportunity to stop, take a deep breath and realize how much they appreciate even the smallest things in their daily lives.
This was one of the first things I noticed when I was diagnosed with MS. Life was suddenly beautiful in so many small ways: the birds singing in the morning, the joy of making a simple meal from fresh ingredients, the bliss of lighting a candle and snuggling on the sofa – all things a lot of people usually take for granted. It almost feels like a gradual awakening from consumerist madness and encroaching tragedy. As humans, we are wired to feel invincible but like chronic illness and disability, being forced to stay at home will conspire to reduce us to what we deep down have always known:
None of us are infallible.
Choosing our words carefully
Finally, and for me a very personal plea, is to stop using the words “battle” and “fight” when it comes to illness. When I was first diagnosed, I was assured that if I fought hard enough, I could win the MS fight. The UK Foreign Secretary declared that the Prime Minister, Boris Johnson, would survive Corona as, “he’s a fighter”. Wrong.
Any illness will always be the one in control, not the person who has it. In my opinion, battle terminology has no place in illness and disability and there is no fight to lose when you are assailed by a far stronger entity.
NPS-ALL-NP-00120 April 2020