ME

COVID-19 and ME

When in California the COVID-19 virus first brought the economy to a halt and forced social distancing on us in March 2020, the playbook went something like this:

University of California: All libraries and non-essential offices are closed; all sporting events, public lectures and meetings are cancelled; and wherever possible all instruction for Spring and Summer Quarters in 2020 (and now, as we know, Fall, Winter, and Spring Quarters of 2020-2021 too) will be conducted on-line unless absolutely essential.
Governor of California: A state of emergency is hereby declared; all Californians must work from home whenever possible, and leave home only for essential food shopping and medical appointments, to pick up take-away food ordered in advance, or to take exercise in the open while maintaining social distancing.

Rest of California: Oh fuck.

Me: So no change there then.

Yeah, OK, that’s selfish, I know. For millions of people this pandemic has meant and continues to mean lost earnings, lost businesses, lost jobs, lost homes, and a new, hard world of federal aid, food pantries, and constant anxiety; at the very least, it has meant being cooped up inside for long hours, attempting to care for children and keeping them entertained while finding time to work on-line as well. I don’t have those worries. I have no kids and no work-for-pay, while I do have a husband in stable employment. Like him, I’m an academic by training, and I have continued to do my own research at home even after giving up all teaching. We have a very nice flat with a deck, and we can take walks in a pleasant neighbourhood close to home.

Sunset from our deck

What I do have is the experience of being cut off from the world, by my own illness. I do know what it is like to be confined to my home or even to one room for long periods. I know what it is like to have my career, family, social life, and hobbies taken away from me, leaving me feeling sidelined and deeply resentful, and always in danger of sliding into reclusive agoraphobia. Without my husband’s constant care and support—and I don’t mean to be melodramatic here—I have little doubt I would be dead by now. I would simply have given up.

I wrote a couple of poems about this experience. Don’t worry: I am not going to inflect them on anyone. They’re not very good, and not very good poetry is deeply embarrassing for everyone concerned. But they helped me see how I felt about the life I had been given. No consultation; just: here it is. It’s now yours.

And I also see that my experience isn’t of any use to the millions who are now living in isolation or have been damaged by long months of it. I had sixteen years wrestling with my ME to try to keep my career, and then fifteen more to adjust to a life without it, with no prospect of recovery, and obviously no way to get back all that I’ve lost. This is nothing like the sudden infliction of isolation from friends, co-workers, and family; of all the damage that children have suffered mentally and emotionally; of the terrible fear you might lose someone you love, or the unbearable pain of actually doing so. There are those, the sufferers from “long Covid” who may be in a situation more like my own. I hope that they, too, get to leave the Kingdom of the Sick, after a few months at most, and are able to take up their old lives once more—maybe with adjustments here and there.

The difference is simple: I can never leave. My own new life is built on the certainty that all the things I lost are gone forever. At first I was actually unhappy that the pandemic was coming to an end and that I would be left alone, washed up on the beach at the high-tide mark, another wreck on the shoreline while everyone else sailed off into the sunset. But now I see how foolish and wrong that is. I hope everyone who can will soon get back to normality, or the new normal anyway, and can come out of this more or less undiminshed, maybe even with a fresh and stronger appreciation of all the good things in life.

Goodbye to all that

Goodbye to being one of millions who, just like me, are confined to home by an illness; who can’t socialize freely; can’t go out to eat or to shop; can’t go to work. Soon the vaccine will release millions from their prison. And I will still be here; I have a life-sentence, with no time off for good behaviour.

That paragraph oozes self-pity, and I’m ashamed of it. But I need to put it out there to let people know what it is like to have ME. And because it has taken me 15 years to achieve even a modicum of acceptance of the life I’ve been dealt, I do understand why so many—even those who are surviving financially—are feeling desperate, frustrated, and isolated after nine months of restraints, and even why some have begun to rebel. Maybe they may know they’re behaving irresponsibly and selfishly; maybe they don’t care; more likely they’re doing what human beings do best, which is hiding the bit of them that knows stuff from the bit of them that goes out and does the opposite anyway. (Some clearly think the whole thing’s a hoax, and I do not pretend to understand them.)

So this may be hard to believe, but my life has changed for the better because of COVID-19. I must say straight off that no-one I know has died of it, with one exception—an old boyfriend I hadn’t seen for 40 years; which was a shock, but because of what had once been, not of what was at the time. Certainly no-one dear to me has even contracted it. So, against that background, I can list these improvements: my husband is working from home, meaning he is around a lot more, even if usually we are working in different rooms (we are both academics, so we are always happy to do our own research); I am able to join meetings, talks, and happy hours by Zoom, when previously I had been excluded from all of these because one had to be present in person; and contact with family and friends has increased because, generally speaking, they are at home more and have more time on their hands.

I love the new quiet around my home, too. There is far less of the dull, distant roar that marks rush-hour (which lasts for four hours hereabouts), and fewer gunning engines from the rats using residential streets as their own private mazes—although the local gilded youth, if that’s the word, with their Ferraris and Teslas and what have you, do race on a road a couple of miles away whenever they get the chance, and I can hear that display of arrogance and contempt for others loud and clear. But, taking our evening constitutional, we often don’t see a soul on foot, and not many in cars either, even on the main road that is the final stretch home. It’s blissful.

So I had to remind myself that this quiet, limited life is not what other people consider desirable, and that it was forced on them… if behaving rationally and sensibly in face of a killer disease can be considered coerced; at any rate, chosen as better than the alternative (cf. Sweden). I have to remind myself that millions of people have had not been able to make such a choice at all, because they had to work, COVID or no COVID, and that millions more have lost work and exhausted their savings and are relying on food parcels. Children and students have been deprived of an education and of the close social contact young people need and can only get in school or on campus. This is not a dream, but a nightmare, and people desperately want to wake up from it.

Sometime in 2021, they will wake up, and then we’ll see how much remains of the 2020 COVID world. Will people try to conserve energy and save the environment by working from home, avoiding in-person get-togethers and conferences as expensive time-wasters, or will they go back to enjoying the boondoggles and snoozing through dull committee meetings? Will they continue to order most goods on-line, or go back to standing in line? Will they wear jogging pants rather than jeans, let alone suits? Will they use whatever extra time they have more wisely, learning French or eliminating the junk from their homes, or will they just carry on scrolling through Facetime or bingeing on real-crime shows?

I think we know the answer to the one.

And there’s no doubt I shall go back to the same life as I had before COVID arrived. The difference is, I don’t have a choice. But I can accept that. So then I think of those “long COVID” sufferers who are only just beginning to face the fact that their lives may never be the same again. The uncertainty (how long is this going to last? what can I do about it, if anything?) is its own form of torture, on top of all the other physical and psychological problems, but there is not much to do but wait, learn, read, experiment, fail, learn some more, experiment, fail, try again… And so on. They must be prepared to be patient. They should remember that finally there’ll be money pumped into ME research now that experts can see, in real time, that the virus is devastating people’s bodies in unforeseen ways—that post-viral syndrome is real. They will need strength, courage, imagination and lots of support from others, so they should get in touch with whatever ME/CFS/CFIDS self-help groups there are in their city or country. It’s probably too late for me, but not for them, to leave the Kingdom of the Sick.