There are times when we, as people, generally rise to the occasion, and others when we predictably mess things up.
I’m breaking all the rules and quoting a quote:
“We are more likely to rise to the occasion when it is clearly an occasion—a moment of crisis, a time-bound period of stress. […] When the crisis simply continues without resolution, when the illness grinds on and on and on—well, then a curtain tends to fall, because there isn’t an obvious way to integrate that kind of struggle into the realm of everyday life. It’s not clear what the healthy person is supposed to give to a friend or family member who isn’t dying, who doesn’t have some need that you can fill with a discrete act of generosity, but who just has the same problems—terrible but also, let’s be frank, a little boring—day after depressing day.”
The quote comes from Leah Libresco Sargeant newsletter, where she quotes Ross Douthat’s memoir, The Deep Places.
It’s a pretty common experience for friends and family to vanish after a diagnosis. Sure, lots of people show up at first, especially if things start with a hospitalization or some other type of thing that inspires people to visit and send flowers.
And then people drop off, one by one and then all at once. Until it’s just the person needing care and a solitary giver of care.
Somehow we, as a society, seem to lack a script for how to navigate changes in abilities.
Or, there is a script for how our lives are supposed to go. We want our elderly to be sweet little old ladies who bake cookies and sit quietly, our old men to flirt and watch sports on TV all day. Maybe there’s a place for someone in a wheelchair or mild cognitive impairment to play the role of a quirky sidekick.
If your family doesn’t fit into an acceptable narrative, you might find there isn’t space for you in people’s lives.
There’s such relief when people discover the term for anticipatory grief. Their experience is legitimized by the fact that it has a name. They realize that what they’re going through is something many others have grappled with.
First we mourn the narrative we were told would be ours.
We’re told: You study hard and get a good job. You work hard and are rewarded. You do the right things and you have a good life. Yet it didn’t work out that way.
Then we mourn the narrative of overcoming disability.
They’re supposed to get better. Or at least wiser. This is supposed to make us grateful for what we have. Why do we feel so shitty all the time?
We cajole the person we’re supporting. We pester them to follow doctor's orders just so, give every treatment an earnest try, to never give up. When things don’t go the way we want them to we find ourselves blaming them for their lack of effort. If only they’d tried harder in PT. If only they had quit smoking earlier. If only they’d give up drinking and would follow that diet. It’s like a certain part of us believes that if only we could control them, we could control the outcome.
The media loves the story where someone has an accident / is struck by illness / is taken down by tragedy and then, with the love of family and friends, overcomes it. They don’t just return to who they were before, they are made better by the experience. They come back stronger, they become more successful. They are unstoppable.
A cure is found. There is a miraculous recovery. They don’t let a disability hold them back.
What a nice fantasy. Wouldn’t it be nice if we got what we want? Wouldn’t it be nice if working hard was really enough?
I hear often that friends vanish because they fear tragedy is contagious. Like we can avoid suffering if we construct a life without the disabled, the elderly, and the ill.
I don’t understand where this idea comes from. Perhaps some children who hold their breaths when driving past a graveyard go on to be adults who concoct ways to pretend that death can’t touch them.
I imagine the reasons communities vanish are both simpler and infinitely more complex.
Community is not a static thing.
We switch groups of friends with each move from one school to the next. There are friends at our wedding who we never see again. People vanish with each change in our life or theirs. The birth of a new baby leads friends to stop calling. We talk to a coworker every day for years and never again once they switch jobs. Why would we think a spouse having a TBI would be any different from the way any other life change leads to the loss of friends?
It’s one thing for life to be temporarily different. It’s another for our lives to be changed forever. Illness and disability can change a lot of things.
A lot of relationships are situational. Friendships ebb and flow, dependent on all sorts of factors, including our capacity at each life stage. Sometimes we just don’t have it in us to care about someone’s trivial moments, because our own life is too much. Sometimes we’re just too busy. Sometimes they are, too.
Maybe it’s easier to imagine all of our relationships are eternal when you have a stable life — until caregiving disrupts it.
When friends come to see our life as a crisis without resolution, that friendship can’t go on.
Why do people give us unsolicited advice? Why do they keep pushing that miracle cure they saw on Instagram? Because they see our life as a crisis without resolution and they are trying to help us resolve it.
Why do people minimize what we do? Why do they tell us we’re saints and then change the topic? Because they see our life as a crisis without resolution and they are bored with it.
When someone is in a miserable job that they refuse to quit, dating an awful person, or otherwise creating problems and refusing to do anything to improve their situation, we run out of patience and empathy. We stop listening to them and then stop feeling close to them and stop taking their calls.
There are so many advice columns out there urging people to cut out the negativity from their lives, to surround themselves with people who are thriving. It’s easy to find yourself unfriended if you live a life that’s just about getting through the day, rather than striving for greatness.
What deep relationship is free of negativity, conflict, and complications?
The discomfort that comes with spending time with someone with significant disabilities is not confined to squeamishness or callousness.
Care work requires us to live with a constant dissonance of time and space: normate time and crip time.
Maintaining a meaningful relationship with someone living on crip time when you spend your days in normate time is challenging in ways that are difficult to quantify. It is not easy to schedule. It is not easy to plan an activity or choose a location. It is not easy to arrange for transportation. It requires not just more effort, but a different type of effort. It requires the embrace of something radical.
It is like learning a new language, but that language is your concept of time and space.
Leah Libresco Sargeant also recently raised the question of what it says that Social Security doesn’t recognize caregiving as work.
Heather Havrilesky reassured the young that care work is not all misery.
If you’re in the US and would like help choosing a Medicare plan, SHIP is here to help. It’s funded by the Administration for Community Living and run by AAAs. The Social Security Administration also provides an overview of how enrolling in Medicare works.
If you’re in the US and caring for someone with cancer, Triage Cancer just released a new guide on your rights [PDF] and one specifically for young adults [PDF].
If you’re in Canada or the US, the Sheridan Centre for Elder Research has partnered with Tyze Networks and is looking for unpaid and professional caregivers to participate in an online survey.
If you’re looking for a new website host, Siteground is offering three months of free hosting. That offer includes a manual migration of an existing site to their servers. If you’re interested, here’s the referral link. We’ve been using Siteground for the past few years. The offer is valid until November 25th.
The Caring Conference is coming up on November 12th. There’s no cost to attend this virtual event.