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The 'Anticipatory Fear' of Life With (and Without) a Disability During COVID-19

In the approximately 297 years since the coronavirus lockdown started in March, I have seen a wide range of commentary on the effects of the pandemic, particularly the psychological effects of persistent uncertainty and survival stress. Society has changed drastically, is constantly changing, and we don’t know enough yet to know where the future leads. There are people working from home while juggling childcare, or not working, or risking their lives working jobs that have been deemed essential.

We, as individuals and as a country, have so many unanswerable questions. When will there be a vaccine? When will there be a treatment better than “stick them on a ventilator and pray if appropriate?” When will the economy reopen? When if ever will things get back to something approaching normal? When, when, when… and how do we keep our sanity until then? What will the toll be on our psyches, on our children, on the future?

Our brains aren’t really built for extended periods of upheaval and uncertainty. I’ve seen people mention “COVID brain” — the dip in higher-level thinking because the brain is focusing on staying alive, the brain fog that comes with prolonged stress, the shattered feeling of having too many worries — basically, the effect of a worldwide pandemic on everyone’s mental health.

And all I can think is “welcome to my life.” Because for me as a disabled person, this is nothing new.

The rare condition I have, fibrodysplasia ossificans progressiva (FOP), is untreatable and incurable and, as the name suggests, progressive. It’s a genetic condition where bone grows in and around muscles and tendons, gradually immobilizing joints. Sometimes it arrives “noisily” in a flare-up, weeks or months of localized swelling that is hot and red and painful and unignorable, eventually receding like the tide to leave behind whatever bone has grown. Sometimes it arrives silently, where bone creeps steadily forward with no other symptoms. The new bone often comes with a loss of mobility, either because the affected muscle can’t flex the way it used to, or because the new bone forms a fixed bridge between formerly-moving parts.

There is no warning and no way of predicting changes or preventing them. Patients with FOP might go to bed with full mobility and wake up with arms locked in place. One of my first major flare-ups, the beginning of a several-year journey to getting diagnosed as an early teenager, involved me curling up in an armchair to read and then, on standing up a few hours later, not being able to straighten my hip.

Over the last 30 years I have lost more and more mobility, until now when I’m just about entirely immobile. Only my fingers and jaw remain mobile, and my fingers only partly so. I live with constant underlying worry about when the next painful flare-up will happen, what changes it will bring, and if and when my jaw will lock up. If/when I lose any more finger joints, I will most likely lose the ability to knit and crochet. If/when I lose jaw mobility, I will lose the ability to eat normal food and have to change to a liquid diet.

I try not to think about it too much.

And then there’s the other sources of uncertainty. The level of my physical limitations means I am dependent on other people for everything from going to the bathroom to eating to changing clothes. When things are going well, when I have enough caregivers and they’re all showing up on time, it all goes more or less smoothly.

But my caregivers are human. They get sick or injured. They sometimes forget shifts, or we miscommunicate about expectations. Their phone dies and I can’t reach them. They have a family emergency of some sort. (In rare cases, they get arrested.) Sometimes I have to wait an agonizing hour or three between when I need to go to the bathroom and when someone is actually there to help me. Sometimes caregivers quit, giving anywhere from two weeks’ notice to a brusque “I won’t be showing up tonight.”

Even when things are going smoothly with my caregivers, I am constantly worrying that something will go wrong, and trying to anticipate problems before they arise. It’s like chess, except higher stakes.

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There is a thing many people have heard of called anticipatory grief: when someone we know is dying, we can pre-grieve, to some extent. By analogy, there must also be a thing called anticipatory fear, and that is what we are experiencing right now with the pandemic. Anticipatory fear about the future, built on a shaky foundation of uncertainty and lack of knowledge.

I have been living with constant anticipatory fear for years.

It’s not just about caregivers, either. There are a thousand worries I juggle in my head. I rely on a wheelchair for mobility — what happens if my wheelchair breaks down somewhere, or gets a flat tire? I rely on help getting up — what happens if there’s an emergency, like a fire or earthquake, while I’m in bed? I rely on equipment to be able to live comfortably — what happens if the power goes out for an extended period?

And the pandemic has added yet more worries. Because of FOP, my rib cage is fused, and FOP people are more susceptible in general to lung complications. I’m not more likely to get COVID-19, but if I get it it’s going to be bad. And yet I can’t completely socially distance, because I have multiple people coming in as caregivers. I have to rely on them to do their best to stay healthy, to stay as isolated as they can, to wear masks not just around me but anywhere they go. My COVID risk is not as low as I wish it could be — I don’t have that option.

It is not much comfort to me that the pandemic, and its associated stress, is affecting a lot of people. But it does give me an interesting new area of common ground with non-disabled people.

Being in a pandemic isn’t itself a disability — but it’s been interesting to see how many things that disabled people had been denied as accommodations, like attending meetings remotely or working from home, magically became possible when everyone had to do it. It’s been interesting to see the reactions people have had to being largely stuck at home, when some disabled people have been living that life for years, sometimes lonely and forgotten because society ignores what it doesn’t see easily.

It’s interesting to see how much “normal” life is becoming like disabled life.

Eventually there will be — I hope, everyone hopes — some way for things to return to normal. But hopefully, it will be a different normal. One that is kinder and more empathetic towards different needs, now that society has felt a tiny fraction of what disabled people go through.

And yeah, uncertainty really sucks. A lot.

But it’s survivable.

For more on the coronavirus, check out the following stories from our community: