I'm not the only one thinking about the ways in which the pandemic of Covid19 has brought almost all of us into terrain that is unfamiliar, but perhaps less unfamiliar to those who have faced rare diseases. By definition there should be little in common between the world's most prevalent disease and the world's least common diseases. But emotionally, attitudinally, and mindset-wise there are overlaps.
Are you suddenly unrooted from the life you expected to have and forced to face a new less predictable one? That's the rare disease experience.
Have you called into question even the most basic expectations of what a “normal” day or month is? That's the rare disease experience.
Are you now terrified that you or someone you love could die from a disease you'd never heard of a few months ago? A disease with no cure, few treatments and bleak hope? That's the rare disease experience.
Have you been forced to learn to be an amateur nurse? That's the rare disease experience.
This is not a snide gotcha of “yeah welcome to my world people.” I hope it's more along the lines of “we know some of what you're going through, since we've been through it already.” Maybe it can help.
It's not a situation of the one eyed man becoming king when all the world goes blind. Nor is it as hopeless as the blind leading the blind. It might be more like the experienced blind can help lead the newly blind. Rare disease families don't hold all the answers, but we have encountered a lot of these questions before.
Social isolation? Rare families are old hands at that. Some of us only in the emotional sense, but others like some Cystic Fibrosis patients have years of experience avoiding handshakes or observing six feet apart safe zones.
What have I learned that might help you right now? Most of it centers around expectations. This can sound bleak. If I tell you the key to happiness is to expect less happiness --yikes. And that's not quite my point. But if this situation lasts long enough we may begin to let go of some of our expectations and when that happens room is created for new joys. Maybe smaller joys that we weren't noticing or appreciating before this. Suppose in the “before” a really great day meant you got a promotion. Perhaps in the “new normal” a really great day is the one where you get to walk in the sunshine.
I don't want to seem dismissive. It's not as simple as as “Don't worry, be happy” (I have always hated that song and its sentiment.) More like don't worry, there can still be happiness in the face of tragedy. It's not as easy as adopting a gratitude attitude (although that is a huge help). Getting through this is hard. Living for the present moment when the future is in doubt is hard. You may find yourself going through the stages of grief and not knowing what you are grieving. If no one close to you has died what is it you are grieving? I suspect you are pre-grieving. Or you are grieving the expectations you had for the future.
I was supposed to be away on vacation. I was supposed to grow my business with a new account. Suppositions and expectations all seem to have gone by the wayside. Some may be temporary –we'll probably travel again. Some may not – some businesses might not survive.
It's unsettling at best and can be paralyzing at its worst. That's a key. Think about it, do what you can about it, and take the time you need to feel it but don't let it paralyze you. Do something. Do the very small something you can do and then do the next something. I can't cure my son's rare disease. I can wipe his mouth. I can change his diaper.
As my friend Ellen told me “We are all jugglers of hopes and burdens, the light and the heavy. And everything else is just the sideshow.”
In the film festival I co-founded for rare disease stories, Disorder: the Rare Disease Film Festival, we screened a deeply moving film that addresses taking the tiniest step forward you can manage. Academy Award winning director Cynthia Wade joined us to screen her film “Beyond Blue” about a woman battling a rare cancer. You can watch it here:
It's 10 minutes long. If you don't have 10 minutes skip to the 6 minute mark.
If you can't watch a video at all, I'll summarize: The woman feels the end is close, she can't fight anymore. Her friend pleads with her to fight for one more day. “I can't do this. I can't go another hour.” Then just 5 more minutes. “I can't fight for 5 more minutes” Okay then just do one more breath, “Okay, one breath at a time.”
As we are forced to live lives of existential import, we might find out how many other concerns need not have ever been so great. We've jokingly called them “first world problems” because we in the first world seldom have to worry about the existential: whether we will have the food or medicine to survive.
The wisest philosophies often tell us to stay in the now, and be present in the present moment. Feeling fragile or feeling that time is precious can force that mindset upon us, or grant us permission to embrace it.
Not to add to your worries but maybe the current temporary reality will turn out to be not so temporary. It might be easiest to think of our shelter at home times as a brief month or so and then we'll be back to normal. What if it's longer? Concerns of rare disease families's differ from the present pandemic concerns in a crucial way: we don't expect the situation to pass, to resolve itself (not happily). So as best we're able we take all the unwanted, uninvited medical twists and challenges that are thrown at us and look to find a way to have a good life in the face of them, in spite of them, and in between them.
And as this new unwelcome experience forces us to rethink so many things, let's be sure to re-think how much of that “old normal” we really want back when we get to our “new normal”.
A silver lining in all this may come from the insights we gain into how the way it always was, “way it has to be” might not in fact be the way it has to be. When we hear the possibility that only those who can afford treatment might survive Covid19, we are rightly disgusted and demand that everyone should be saved regardless of ability to pay. Fantastic, hold that line. And remember it in the new normal when people can't afford their diabetes meds. In this moment of crisis some governments and corporations are reducing penalties, fees or offering more goods and services for free. How much of that doesn't have to (or should not) snap back to the old defaults? When crucial care for all people is the primary overarching consideration aren't we actually making better policies?
I could list more examples of emergency relief measures that might make us wonder why they weren't our default norms before but I don't have to since this article does.
Try to ignore the inflammatory clickbait headline. I don't think America is a sham. I know many who feel government can't solve problems and they'll point to a disaster as proof of that. I think government works fairly well for the routine stuff. But when the unexpected crisis comes along any big system can get strained to nearly breaking. Individuals are like this too. Most of us are living in that strain right now. I believe government (and churches, charities or NGOs) are meant for those efforts that are bigger than the individual. When our shared interest is larger than our self interest, we band together. That's how we got government in the first place. We've drifted far from that founding intent at times, perhaps often forgetting it. But government is meant to be we the people pooling our efforts, sharing our burdens. Maybe it takes a crisis like this to put the lie to the myth of self reliance. Rugged individualism works okay for the rugged. But we should be better than survival of the fittest. Don't we want survival of the most instead?
Rare disease families know how a medical challenge can overwhelm your individual capabilities. When strained beyond their capacities individuals turn to institutions for support. We're now living a frightening experiment where we discover how many individuals our institutions can support at the same time. When the dust settles if that number is fewer than we'd hoped we should ask why? Is it a scarcity of resources? Why were they scarce? Did the marketplace not value them? Was the marketplace itself part of the problem?
Rare disease families are used to this too. Even though 1 in 10 people have a rare disease they were called Orphan Diseases, because they were orphaned by the marketplace. Drug companies couldn't put their scarce resources into so small a population if they hoped to turn a profit. You've probably heard a similar example recently of the company that was building low cost ventilators but abandoned the project since there wasn't enough profit in it.
We hear: use your bootstraps, fix your own problems, we don't need government. Self reliance is the way. Hmm. Unless the self you're relying on has some doctor level medical skills, some farmer level food producing skills and some teacher level education skills, we're all going to need to rely on people other than our own selves. And I'm far from the first to point out (you've probably seen memes on it) many of the new “essential” workers we're relying on for care and food and deliveries are the same people some of us thought didn't deserve a living wage for their work.
When we come through this on the other side, let's not be too quick to wish things back to the old normal. Let's remember how we wanted things to be when our lives depended on it. Let's reshape our new normal to be like that. So that everyone's life is precious and should be protected and supported. Let's remember when some voices said we should let the vulnerable die rather than harm the economy many more voices said that is not acceptable.
Let's build the new normal that is unwilling to dismiss problems if they “only affect the vulnerable”.
During this pandemic are you surprised to learn how compassionate you are for others' problems even if they are unlike any of your own? That's the rare disease experience.
Are finding yourself afraid, yet stronger than you knew? That's the rare disease experience.
Do you see a need to advocate for something better than the way things have always been?
That's the rare disease experience.