What hasn’t changed with COVID19

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As if it’s a distant memory faded over time, I think back to when the COVID19 pandemic began and the hopes…yes, hopes…I had for society. As country after country went into lock down, I had a notion that maybe now society would finally understand what it’s like for families with a profoundly disabled loved one and a life which leaves them isolated and usually home-bound.

It’s been 5 months since lock down happened in March and not much has changed. Not for me and my family and, unfortunately, not for society in terms of the understanding I had hoped would be gained.

No, nothing much has changed.

Lock down has lifted, yet we still don’t get out but on the seldom occasion if we can find a remote place to go where we don’t have to contend with people coming too close and not wearing masks. Even without COVID19 in the equation, there’s still the restriction of no more than 3 hours a day for Brendan Bjorn to be in his wheelchair, how he feels, if his pressure sore areas are acting up, if the weather is fine and if my back feels up to the lifting.

Nope, nothing much has changed.

We’re still isolated. Groceries are delivered, as is anything else we need as a household. I’m the handyman, the accountant, the maid, the nurse, the teacher, the mother and father, the gardener, the cook, and everything else in between. I still go weeks without talking to anyone on the phone except business matters usually related to Brendan Bjorn. There are still weeks I never pass my front gate.

That desperation society felt by being in lock down has been forgotten.

Carers and families such as mine, again…still…also go forgotten.

The empathy I hoped would be gained by society never evolved. While there was a glimmer of recognition for carers at the beginning of lock down, it quickly dissipated as freedom’s shining light burned off the fog that is being restricted to one’s home for weeks on end. Society ran toward the light forgetting those still left in the fog: Carers and their disabled loved ones.

School is reopening and the media is abuzz with stories of normality and hope and smiling children and all of those warm, fuzzy feelings that existed before COVID19.

Yet, the virus hasn’t gone away, no matter how much we want to deny it’s looming existence. For some of us, we just can’t embrace those warm, fuzzy feelings of normality because we know too well that if we do, we’re likely gambling with the life we’ve been working so hard to save for so many years.

No, nothing much has changed.

My son, Brendan Bjorn, is in his medical bed next to me here in our sitting room as I write this latest blog piece. He’s out here because of what appears to be a long standing water leak resulting in black mould in his room which I only discovered a few days ago. Until I can afford to get it all repaired, this is our new normal. It’s ok, actually, as it’s a comfort to have him close while he’s going through a rough patch in his health lately.

My son, Declan, is another story. I’ve struggled with the decision on whether or not to embrace the rest of society’s normality of the return to school for him. He’s starting secondary school this year. A huge step. A right of passage. A journey to becoming a young man. Yet, I hesitate because of COVID19 and what it would mean if he was to bring it home to his older brother. Alas, I can’t embrace the normality. Not yet. Not until we, as a society, see what happens once schools are back in full for a few weeks.

If only the government had put into place a plan for remote learning for students such as Declan who have a Very High Risk family member in the home. But no, forgotten once again, families like ours, by a government and society that didn’t gain the empathy, nor the understanding of the fragility of life, which lock down could have, and should have, brought.

Nope, nothing much has changed.

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