On disability and illness in a time of pandemic

Life finds a way. So said Michael Crichton (often) in Jurassic Park. True: and yet humans, like the misguided individual who thought raising dinosaurs from extinction was a good–and lucrative–idea, like to mess around with life. This morning I was frustrated almost to tears by the human propensity to play God, especially when disability is concerned. We want to avoid illness and disability–not just for ourselves, but for our families–whatever it costs.

Health, illness and disability. What do we expect for our lives and the lives of our children? Health. We expect health and well-being. We expect the usual range of abilities and capacities: to see, to grow, to hear, to learn, to walk and run, to feel, to think and read and write. These are all good things, and there is nothing wrong with hoping for them, even expecting them. The trouble comes when we begin to believe that we are entitled to well-being and certain forms of achievement–and so are our children (whether we have them yet or not). And we decide which limitations we will accept and which we won’t. Of course we all want to be healthy, and we want our children to be healthy, and insofar as it is up to us, we ought to do what health requires. At the moment that involves some extra caution–more frequent and thorough hand washing, avoiding public places when possible, and wearing a mask and keeping our distance when it’s not possible to stay home. (Soon, perhaps, it will also involve a vaccine–which is good and yet a symptom of the very thing that worries me so much these days.) In more ordinary circumstances we know we ought to eat healthy food, get fresh air and exercise, limit our alcohol consumption, and give up smoking. And I suppose most of us try, a good bit of the time, to do those things.

Even with the ordinary and extraordinary measures that we can take, we may still fall ill. If we manage to avoid COVID-19 (looking all the more possible if this vaccine is as good as it seems to be), we can catch cold, end up with pneumonia, break a leg, go down with norovirus, or develop cancer. Much of what comes our way in the realm of health, illness, and disability is beyond our control.

I hate that, I admit it. I am a bit of a control freak, and like a lot more order than life with four messy kids and a non-neat-freak spouse affords me. I hate it that, despite reasonable eating and exercise habits, my “fat” jeans have become my “thin” jeans and the “thin” jeans of yesteryear have long gone to some lucky person who came across them in a charity shop and could fit into them. I can’t even control the ordinary, daily-life things that I think I should.

Maybe you are better at housekeeping and staying slim than I. But the point is that there are only a very limited number of things in life that are ours to decide, and these mostly fall into the category of responses to what life throws at us. We are not masters of our destiny, we are scrapbookers, arranging the materials we’ve been given into a pattern that makes sense to us. We cannot make one hair of our heads white or black (as Jesus observed)–at least not by sheer force of will. We cannot change our height or bone structure (oh, how I wish I could make myself 5’8″ and fine-boned!), we cannot cast away our spectacles and think our way to perfect vision.

So when I heard on the radio this morning about the careful and agonised consideration that went into a fictional couple’s decision to terminate a pregnancy based on a Down syndrome risk, I thought, ‘oh, poppycock’ (or maybe something less appropriate). It’s not that, because I have a child with Down syndrome, I think nobody should terminate on that basis. I never wanted to have a child with Down syndrome–I was sure I couldn’t handle it. My strategy was to have kids before age 30 and so reduce my risk. When that plan failed, I never thought that termination was the alternative. When I was expecting my first child, at 32, it was out of my hands. And, like Nicola Enoch, who criticised the termination storyline, I’m glad that I failed to avoid having a child with Down syndrome. It’s not easy. But my daughter’s life is absolutely worth living, and it is worth everything that it has cost me to be her mum.

If there is anything that I have learned in my fifty-one years on this planet, it is that I do know with certainty what is best for me. ‘Even the wise cannot see all ends,’ as Gandalf said, and I believe I am not to be counted among the wise. Life unfolds in mysterious ways, and  however sensitively a decision to terminate a pregnancy is portrayed, it is still a decision that ends life. I don’t mean that it terminates the life of an embryo, though it does that. I mean that it interrupts life’s unfolding; such a decision is like leaving life’s crooked path and striking out into the undergrowth to right or left. ‘There are no safe paths’, as Gandalf also said, but it does not follow that we ought therefore to head out into the pathless forest. (If you know anything about Gandalf’s advice, you’ll know he insists that leaving the path is more dangerous still!)

It is simply not the case that we can leave one path that looks like it ends in disaster and make our own way to that happy ending we have dreamed for ourselves. No, as another wise character once said, ‘one often meets his destiny on the road he takes to avoid it’ (Master Ugwe, this time). We cannot straighten life’s crooked way, and we cannot avoid every catastrophe that awaits us. Sometimes life really, really sucks. It is never, ever fair. Usually when it feels fair to us, that’s only because the balance is tipped in our favour, not because the scales are perfectly balanced.

I wish I could tell you there was a guaranteed happy ending. Nope. There’s no guarantee of that. All I can recommend is trying to find peace in the middle bit. Recycle. Love your family. Eat your vegetables. Do what you can. And don’t worry about the danger of the path. It’s probably better to stay on it. You never know when there might be giant spiders or murderous trees in the forest.

Strange times

I keep writing that: ‘Strange times we are living in’, I say. What I mean, I think, is ‘deeply unsettling times’. On the one hand, I rejoice at the recovery of the planet. I hope some crude oil remains in the ground, since we don’t need nearly as much of it at the moment. I am glad to read the news about clear air in India. And I am having a love-hate relationship with home-schooling. Since my 13-year-old hates school to the point of anxiety and borderline depression, I am happy that he doesn’t have to go. But trying to get the kids to do schoolwork is difficult, and trying to plan educational activities for them—things that they might enjoy doing that also count as learning—is even more difficult. There’s a reason I teach at a university and not at a primary or secondary school.

And it’s stressful. Teaching on zoom is weird. Maybe I will get better at it, but so far, I have found it completely devastating. It will take a while for me to get over the feeling that I am inarticulate and stupid. Perhaps I have always been inarticulate and stupid, and zoom teaching is only bringing the real me to the surface. That’s my worry, of course: I am the person who heard about impostor syndrome and thought, ‘Well, yeah, I understand that that’s a thing. But everyone really does know more than I do. Maybe even the students…’ I am the one person who really is an impostor, apparently. Shifting teaching platforms and expecting to lose my job (a half-time contract renewed every year) pushes all my ‘I am not worthy’ buttons.

And yet, I am not on the front-line. God help those doctors and nurses and all the people who keep the hospitals and doctors’ offices running during these ‘strange’ times. I cannot begin to imagine life as someone facing COVID-19 at work on a daily basis. I couldn’t come home: the risk to my daughter is too great. My husband and I are fortunate— working from home was already a reality for us a lot of the time, and working through the crisis is like trying to write a conference paper for early September during the summer holidays. Difficult, but not impossible, however impossible it feels mid-August. The stress of caring for the sick and the dying and of the possibility of infection, illness and death is beyond anything I am likely to experience, however long this craziness lasts. Thank God the people who are keeping the medical establishment running are keeping on.

Except they’re not, are they? I didn’t read the article about the ER doctor in New York who committed suicide. Why would I? It would be voyeurism. Eternal rest grant unto her, O Lord, and let perpetual light shine upon her, I say. She needs my prayers more than my curiosity about the circumstances of her death. How? I wondered when I first saw the headline, how did she commit suicide? A doctor would know the best way. I didn’t read on, because to do so would have been wrong. Not for everyone, but wrong for me. I’m so sorry for her, because I have a sense of what the approach to suicide is like, and it is awful beyond words. I’m sorry for her family, who will have lost a loved one to COVID-19 in a twisted and bewildering way.

Let’s face it: nobody is ok. Parents are not ok. Health care professionals are not ok. People who are out of work because of the crisis are not ok. Teenagers are not ok. My 16-year-old is really not ok. He should be preparing for exams he’s likely to have to take (though they’ve been cancelled) in September, but he can’t focus. He should be reading ahead for his new course of study (A-levels) that will begin in September. ‘It’s school without friends,’ he says. School was made bearable for him by having his friends around. My younger teenage son is not ok, either. He hates school, and got through at secondary by staying under the radar, doing the minimum required and not getting into trouble. At home, the threat of coming under uncomfortable school scrutiny disappears, and there’s no motivation to do anything academic. I discover, to my deep dismay, that the child who loved learning his whole life has forgotten what it is to enjoy learning. He can’t translate his curiosity into a desire to learn. I am sad for him, so sad. Families are not ok—not the kids, not the parents.

But it isn’t all bad, as hard as it is to live in the mess and the chaos and insubordination. The boys have moved from the bickering and fighting that characterises the first few days of any family vacation into the hanging out and doing things together that comes after that initial period of friction. Walks with the kids are more frequent; reading together is becoming more frequent; and watching Star Trek (TNG) with the girls each evening is a treat. And having compline streamed online from the monastery that is my soul’s home away from home is beyond a treat. It’s a lifeline, and being able to share it with the family in the living room is sublime, despite the kids’ grumbling and the livestream lagging.

These are strange times, to be sure. And we are definitely not ok. But I suppose if there is one thing that being a person dogged by a dark depression-cloud has taught me, it is that being not-ok is not the whole story. It’s not the whole reality right now, and it is not a permanent state of affairs. It sucks for now. So I am letting the kids have afternoon screen time, and opening the wine early.

When we don’t have compline with the nuns, this is one of my favourites. Pray it with me if you are so inclined.

Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous, and all for your love’s sake.