My friend Tom posted some practical advice on living in isolation, which I’ll paste to the bottom of this blog. Some of the adjustments everyone is having to make – being trapped at home for months on end – are hardly new to the likes of Tom and me. That said, covid isolation isn’t the same as a myeloma diagnosis. For most people it isn’t going to be terminal, it won’t be painful, and it won’t involve endless chemo and all that bollocks. But, it is certainly traumatic. Here’s a couple of thoughts from me, on accommodating trauma.
Firstly, recognise that in large part the adjustment is a form of mourning. Mourning for the world we all imagined which turns out not to be the world we actually inhabit. A month ago we all had plans for 2020. A 2020 where you can go to the pub, and I can go to Mexico. We envisaged time with friends which we will be deprived. We envisaged events and accomplishments that won’t happen. We thought the world was just a nicer, more benign, place than it turns out it is. When I got my myeloma diagnosis, Marisa and I had been planning to move back to New Zealand’s Motueka Valley, buy some land and build a house. We had photos of the area on our kitchen wall. I had a long list of “thoughts for our place” stored on my phone. For a while I found it extremely difficult to accept that that plan, that fantasy, would never happen. I had to mourn for it, and let it go. In the end, I waited until Marisa was away one day, and then took the photos down, replacing them with pictures of us having fun. I still have the list on my phone – I’ve never been able to bear the thought of actually deleting it. But it is buried somewhere I never look at it.
For better, or worse, this future is the only one that exists. Anything else we imagined was fiction. Biology – evolution in the form of genetic mutation – brought us here. No-one caused it. It has no “meaning”. It just is. It’s not even unique: people have lived through plagues and pandemics before. In 1918. In the 14th century. In the new world, when European explorers introduced smallpox and syphilis. And there have been many other times of hardship, war, disaster. It’s not special. We’re not special. So, we never thought our generation to have to live through and deal with something like this. Big deal. We were wrong. A large part of the anguish is simply that it isn’t as nice as we wanted it to be.
It will take some time to let go. We might have to let go of 2020; of our social habits; of our established balance of freedoms and social responsibility; of our past economy. It’s profoundly unsettling to suddenly be without a clear picture of the future. But it helps to realise that a lot of the pain we feel isn’t because the life we’re leading is actually that bad, but because of the gap between actual life and previously-imagined life. Lots of good things may even emerge from this experience: family relationships; a more equitable economy; a more sustainable lifestyle. Who knows. Those things don’t make the trauma OK. Covid isn’t “happening for a reason” any more than my myeloma is. But instead of being distressed by the gap between reality and fantasy, one can be happier recognising the positive aspects of the world as it actually is. To do that, first, you have to let go. It isn’t easy. It took me years. But tomorrow, the only world we have will still be this one. Either we make the best of it, or we waste our lives. Covid is random bad shit, let’s not pretend otherwise. But you can still grow through it. Bad shit can be good compost.
And secondly, recognise that it is hard being scared. Scared for loved ones, scared for ourselves. But the good news is that fear fades, if you give it and yourself time. I’m not scared any more. If I was scared, I’d have long ago lost my mind. If my time were to come in this pandemic… so be it. That doesn’t mean I’m taking any risks. I’ll take all the precautions I can to stay alive. I didn’t go through all that toxic chemo just to let myself go now because I can’t be bothered to practice good hygiene and keep some distance. Go easy on yourself. It’s OK to be fearful. It’s OK to have a meltdown. I’ve had plenty of those, over the last few years. Don’t beat yourself up about it. Be kind to yourself. At the risk of sounding hippie, love yourself more and judge yourself less. Focus on the joy of today, however compromised today is. Over time, the fear fades.
It’s easy for me to say this. I’ve had years to accommodate my personal trauma. It takes time. It isn’t easy. It hurts. But it is possible to transcend.
Stay safe. Love to you all.
And here’s some practical advice from Tom:
Some advice on self isolation
7-years ago I had a stem cell transplant. This meant that in the aftermath I was kept in an isolation room at UCLH for two months, and then when deemed strong enough sent home for a further 7 months where I was not allowed to leave the house and had to operate the kinds of hygiene techniques we all need to do now. I thought it might be useful if I shared what I learnt about staying safe and sane during that period. All the below are connected and overlap.
1. Firstly (and this is difficult) you need to adjust to and accept your new reality. Don’t fight it, live in the moment on a day by day basis.
2. Keep clean, continue to regularly wash hands even at home. Have a stringent hygiene routine. Have a shower every morning, keep good oral health as there is a weird connection between mouth infections and your immune system.
3. Go to work at home. Have a daily routine that you follow. It doesn’t literally have to be ‘work’, but keep a daily schedule of things that you do at the same time every day. I realise this might be difficult for some if there is no quiet space at home, but routine is really important.
4. Change your Jim jams in the morning. This sound silly but when you are staying at home it’s tempting to slob around in the same clothes you slept in. Don’t it’s unhygienic and bad for your self esteem.
5. Keep fit. If you are fortunate enough to have a house with a corridor use that to walk up and down or use your stairs. You can also get small pedal exercise machines off amazon for around 20 quid that sit under a chair. Stretch etc. Build this into your daily routine.
6. In family situations be mindful that everyone is going a bit nuts. Learn to forgive quickly and don’t nurse grudges.
7. Keep connections to friends and family. Share your feelings and experiences, let people know how you are you.
8. Eat as healthy a diet as you possibly can. Take supplements extra vitamin b and d.
9. Have a go bag ready if you need to go to hospital, a weeks worth of clean clothes, book or kindle, a travel kit of toothpaste, soap (yes really), deodorant a phone charger.
10. If you have a hobby it helps, if you haven’t this might be the time to develop one…