I know many of you are feeling the loss this long weekend, of church services and holidays, Easter and Passover meals with family and friends, and trips to the Easter Show. So are we. (I was particularly looking forward to seeing Kimi’s first entry in the Arts and Crafts exhibition, but their loss is our lounge room wall’s gain).
But as someone who feels particularly vulnerable to the threat of Covid-19, I want to say a huge thank you to everyone for giving up physical closeness and togetherness for the sake of protecting our community. I haven’t wanted to take precious time from busy – themselves vulnerable – health professionals to quiz them about the extent to which my MND-paralysed, ventilator-dependent body would be more likely to succumb to this Coronavirus than a typical 50-year-old’s, but I assume it is non-trivial. The reported Covid-19 death last month of Craig Ruston, a 45 year old dad, less than two years after his MND diagnosis, gives weight to these fears.
My family is made more vulnerable because I am dependent on a team of carers to do everything for me – from hoisting me out of bed to wiping my eyes (and arse), from feeding me lunch to suctioning my airway clear, from keeping my comms technology charged to repositioning sore joints at 3am. It’s impossible to be isolated with this team of nine carers who work shifts in our home, or to keep 2 metres away from the people who are washing my charmpits or tipping condensation from the tube that pushes air in and out of my lungs. The absence of paid sick leave that is a shitty fact of life for casual workers becomes a frankly dangerous disincentive to staying away and waiting to be tested if they develop symptoms. And it’s best not to contemplate what would happen if infection of a team member or their contact necessitated all of us quarantining.
Like others in the MND community I have a particular interest in the flattened curve. I want ICU beds to be available not only for the fraction of people contracting Covid-19 who need them, but for others needing hospital care to give them a shot at staying alive. I have been one of those people several times in my seven years with MND, some times with a little notice, such as when I had a supra pubic catheter inserted just before I lost the capacity to stand up from the loo, even with help; more often catapulted in by a respiratory crisis.
My most recent ICU ‘holiday’ started with losing 6 hours to near fatal carbon dioxide narcosis (which, I believe, Covid-19 can also cause), continued with a life-saving tracheotomy and laryngectomy, and finished with a long, slow period of recruiting and training carers (On deciding to keep living with MND: A triptych). That 9 1/2 months, along with my 87 months living with MND, have turned out to be good preparation for the current restrictions. Being physically unable to touch my face with potentially contaminated fingers isn’t the only benefit of being locked in during lockdown. I have learnt to appreciate the gift of life, to find pleasure in small things, to accept derailment of plans, to adapt, to live in the present, to be grateful for (immense) kindness, to connect with others online, to be patient, to cope with loss of control, to try to make the most of each day, to forgive myself when I fuck up, to welcome help, to laugh, to manage confinement – to Room 103; my immobile body, to trust, to view modest outings as a treat, to enjoy the life of the mind, to know how wonderful it is to be home. I know how much my beautiful family loves me, and I love them. My heart goes out to those dealing with recent MND diagnosis – a mortality rate of 100% – in this time of isolation. Please spare a thought for those trying to process this devastating news now, forgoing closeness and hugs when they are most needed, missing out on what might be their last opportunities to swim or work or go to the pub or attend family weddings or travel, making memories for their kids in the shadow of what will become our global collective memory, not able to meet face to face with other people with MND or MND association advisers, contemplating death at a time when funerals are limited to ten people.
And so as a potential beneficiary I say thank you to everyone responding responsibly to this novel Coronavirus. Thank you to our political leaders working together to make difficult decisions (and a gold star goes to Jacinda Adern). Thank you to healthcare workers for doing what you can to minimise mortality: I hope you can be safe. Thank you to health communicators and broadcasters like Julie Leask and Darren Saunders, Norman Swan and Tegan Taylor (Coronacast), Leigh Sales (7.30) and Hamish MacDonald (Q&A) and their teams for constructive information and interjections. Thanks to essential workers for providing care, teaching, producing food, making masks, delivering pizza, researching, selling toilet paper, troubleshooting technology, first responding, collecting garbage and more. Thank you to those who are finding themselves or their businesses reliant on welfare: I sincerely hope that our taxes are raised and our safety net widened and permanently strengthened. Thank you to comedians, musicians, writers and actors for spreading joy. Thank you to everyone who is being kind to those around them. And thank YOU, this Easter, for staying home.