“What could really save Hillary Toucey’s life is a personal-care attendant to help with her 7-year-old son, Eli.” That’s the lead to a recent Newsweek article on “The Coming Special Needs Crisis” by Michelle Cottle.
Toucey, a single mother of three living in Louisiana, is more than Eli’s primary caregiver, she’s virtually his only one. To understand why some help might make the difference between life and death for Toucey, we must begin with a list of Eli’s medical problems: “cerebral palsy, celiac disease, epilepsy, asthma, and what his mom calls ‘pretty severe’ autism.”
Then there’s Eli’s brother, Jonah, who has been “diagnosed with Asperger’s . . . cries easily and doesn’t have many friends.” Their sister, Charlotte, is “’a perfectly healthy, wonderful, brilliant’ 9-year-old who her mom fears will fall through the cracks.”
Finally, there is Hillary Toucey herself: Her husband left “two weeks before their 10th anniversary and four days after Toucey had surgery for a thyroid tumor.” She is struggling to put herself through nursing school so that she can support her family, while taking care of two children with special needs, one of whom can only be left with, at most, a few people.
Here’s one more thing you need to know about folks like Hillary Toucey: “One 2009 study found that the mothers of older autistic children had levels of the stress-related hormone cortisol similar to those found in combat soldiers and sufferers of post-traumatic stress disorder.”
That’s easy for me to believe. As you may know, my son is autistic, and while, thanks be to God, he is nowhere near as disabled as Eli Toucey, I can relate to Hillary Toucey’s comment. “I have no life.” And although I am reluctant to compare myself to a combat veteran, I know all too well what “caregiver burnout” feels like.
Ultimately, what is threatening Toucey’s well-being and possibly even her life isn’t Eli’s disabilities or the lack of a “life” outside of her role as a mother and caregiver. It’s the stress, the physical manifestation of which is increased levels of hormone hydrocortisone, a.k.a. cortisol.
When National Geographic refers to stress as a “killer,” they are referring to the effects that elevated levels of cortisol can have on the human body: hypertension, hyperglycemia, impaired immune response, slower healing, and impaired cognition.
But stories like Toucey’s also point to another, perhaps more important, aspect of stress: its social dimension.
I first need to explain what I mean by “stress.” I’m not referring to the anxiety that our ancestors experienced on a regular basis over matters such as food, clothing, shelter, etc. While, to our everlasting shame and possible damnation, there are still many people in the world for whom these are ongoing concerns, most of us in the West do not experience this kind of stress.
The stress we do experience and which can, if not addressed, harm and even kill us, is the stress that grows out of our status as, to use Alasdair MacIntyre’s wonderful phrase, dependent rational animals. (A review of MacIntyre’s book can be found here.)
“Man is,” as Aristotle famously said, “by nature a political animal” (ὁ ἄνθρωπος φύσει πολιτικὸν ζῷον). Our sociability and gregariousness is inseparable from what means to be a human being. This is an instance in which the good news and bad news are the same.
It’s good news because we are capable of wonderful things when we treat each other with kindness, compassion, and justice. We comfort each other when times are bad and we work together to make times good. Human life, at its best, is characterized, in MacIntyre’s telling, by a “network of relationships of giving and receiving” in which what we are called “to give may be quite disproportionate to what [we] have received and . . . those to whom [we are] called upon to give may well be those from whom [we] shall receive nothing.”
The bad news is that we often fail to live up to this standard, by both omission and commission. Since the giving and receiving is an inescapable part of being human – even if it is often honored in the breach rather than the observance – we live, consciously or not, in expectation that others will be there to catch us when we fall.
That’s why one of the hallmarks of despair is the cry “I’m alone.” I wouldn’t presume to speak for Hillary Toucey, but from my own experience, the feeling of being in “this” by yourself is nearly as debilitating as the effort “this” requires.
Stated differently, the kind of stress I have in mind is the result of what we do to – or fail to do for – each other.
Two examples from the aforementioned National Geographic program illustrate this point. My favorite involves a long-term study of baboons by Robert Sapolsky of Stanford. The baboons lived in a part of Kenya where food was abundant and predators were scarce. This left them plenty of time to do what baboons apparently enjoy the most: making each other miserable.
This misery followed a well-defined hierarchical pattern: those at the top of the social hierarchy tormented those below them, who in turn tormented those below them, etc. Sapolsky carefully tranquilized (so as not to add to their stress) baboons all along the hierarchy and measured their cortisol levels.
You probably guessed what he found: Those at the bottom of the social hierarchy had very high levels of cortisol while those at the top were positively chilllin’. In other words, levels of the stress hormone correlated very closely to status in the hierarchy.
In case you wondering what baboons can tell us about human stress, a study of British government workers, the Whitehall Studies, found similar results.
The controlled “cohort studies found a strong association between grade levels of civil servant employment and mortality rates from a range of causes. Men in the lowest grade (messengers, doorkeepers, etc.) had a mortality rate three times higher than that of men in the highest grade (administrators).”
While there is disagreement about why lower status is associated with higher stress levels and the attendant risks – some argue that the “lower one is on the chain of command, the less control one has over his or her life,” while others suggest that a “lack of predictability,” defined as “high stability of work and lack of unexpected change,” is the culprit – there is no denying the link between status and stress.
But Jesus called them to Him and said, “You know that the rulers of the Gentiles lord it over them, and their great ones exercise authority over them. It shall not be so among you.
It’s difficult to imagine an aspect of the contemporary human condition that the Gospel addresses more thoroughly than the kind of stress being discussed here. I’m not referring to the platitudinal use of verses such as “seek first the kingdom of God . . .” or talk about lilies, Solomon, birds, etc. First of all, most of us don’t live as if they were true and, second, they reduce the Son of God to a kind of wandering Palestinian Cynic spouting self-help aphorisms.
I’m talking about what Jesus had to say about the Kingdom of God. I’m talking about what N. T. Wright and other have called an “inaugurated kingdom” where status, while it has not been abolished (quite the contrary -- Jesus is Lord, after all), is not the occasion, much less the authorization, to make those “beneath” you miserable, but, instead, carries the obligation of self-abnegating service of others.
I’m talking about a kingdom in which the kind of giving and receiving MacIntyre wrote about is standard operating procedure. In other words, I’m talking about something rather different than what often passes for Christianity today.
To be fair, judging from the New Testament, it wasn’t standard operating procedure in the early church, either. But every once in a while we get glimpses of it throughout history: tantalizing and poignant reminders of what could be.
Where does this leave the Hillary Touceys of the world? I don’t know. As someone who is himself contemplating moving to another state when my son “ages out” of the system, I’m not optimistic that they will ever get the help they need to survive, much less thrive. We live in mean times when people are increasingly on their own, despite needing each other more than ever.
We live in times when, despite the egalitarian sloganeering and feel-good claptrap we encounter in the media, people will go to extraordinary and increasingly desperate measures to ensure a place for themselves and their kids at the top of the social hierarchy. And do I need to remind you that we live in an age of double standards?
Thy Kingdom come. Thy will be done in earth, as it is in heaven.
Roberto Rivera is senior writer for BreakPoint.
Articles on the BreakPoint website are the responsibility of the authors and do not necessarily represent the opinions of BreakPoint. Outside links are for informational purposes and do not necessarily imply endorsement of their content.