Lizzie Deeble’s blog describes how her son Sebastian, who lives with Duchenne muscular dystrophy, has reacted to coming out of shielding.
Saturday 1 August marked the “pause” of shielding for many families across the country. Families who had been isolated since March, who have watched from the sidelines as the rest of the country gradually edges back to some sort of normality.
We are one of those families and Saturday brought with it an unexpectedly wide range of emotion.
Relief that it is officially (for now) relaxed a little, pride that we have survived relatively intact, fear of going out of our safe bubble, of taking the risks that we used to take without thinking along with the ones we have been shielding from. I thought, right at the start, that I would race out of shielding, desperate for human contact and whatever sense of normalcy I could find. But life is rarely that simple.
As always, the person who best illustrates all of this with his response is Sebastian himself. We began to go on little bike rides with Sebastian on his adapted trike and Toby on his balance bike a few weeks ago.
I was taken aback when Sebastian came to a complete halt and yelled “Mummy, there’s a PERSON. They might have the germs” at an unsuspecting neighbour who was sweeping her driveway. His anxiety was obvious, born not just from a fear of “the germs” but from an unfamiliarity with coming across another person aside from his immediate family. A few months ago, he probably wouldn’t have even noticed that anyone else was there, or we would have all waved and smiled. It would have been so natural and instinctive. Now, although I try not to verbalise it quite as loudly, I also flinch when I see another human and question how to deal with the prospect of proximity. The thought of entering a supermarket or sitting down to enjoy a meal in a restaurant still feels completely alien.
As we venture out, begin to be part of the world outside our home again, it is navigating these seemingly simple interactions which feel so daunting. I am reminded of being in Central London as a non-Londoner, attempting to work out the complex tube map which looks like a series of meaningless lines, clumsily fumbling to find the right means to get through the gates. Now it feels as though everyone around me knows exactly what they’re doing, moving quickly and confidently with assurance and familiarity in contrast to my bewildered state. My confidence in a “new normal” is low, as is my fluency in interacting in it.
We are slowly heading out of lockdown a long time after most people took those first tentative steps. Many have tried and tested and found their comfort zone, the place they are happy with in terms of the balance of risk. We are only beginning this process, while everyone around is us way ahead. We are slowly feeling our way after so long in our tiny bubble.
But our risk is heavier and therefore our balance is weighted differently.
Our family NEEDS to come out into the world again. We need our bubble to get bigger. As safe and secure as it has felt, our world has become too small, too limited. But in order to do this, we need everyone else to be aware of us. I realise how self involved that sounds, but we need to know that we can be safe.
While shielding has been going on, everyone else has had the reassurance to that those most vulnerable have not been part of life outside of their own houses. We have not needed to be considered because whatever risks everyone else has been taking have not included us. The impact on the behaviour of the general public has been minimal. But now we need to be a part of moving forwards, our needs have to be incorporated, our risks included.
So be aware that those vulnerable people who have been out of our communities since March are trying to re-enter them. Please wear your mask. Please keep your distance. Please remember those who are most vulnerable to COVID-19 are part of world too and that they are taking steps to come back.
We all have a responsibility to help each other navigate this, to keep each other safe, to respect the different weights of the risks we carry.