I
was at the grocery store recently in search of coconut flour to fuel my
short-lived commitment to the “paleo” lifestyle. I rounded the
corner of the baking aisle, and right by the mill-ground grains were two women
in their fifties. I could tell that they were having a weighty
conversation and that theirs had been a chance meeting, for each had her own
cart, and the carts faced each other, steel mesh bumper cars suspended
mid-ride. Recognizing one another, the women had probably blurted
out startled hello!s and meaningless lines of explanation—“I was
just looking for cinnamon.” And then the dark-haired woman had asked
the blond woman, “How are you?” or “How’s ______?” And the blond
woman had started talking. By the time I got there, the blond woman
was tearful, and both were fixed to the spot, blocking the wall of cake mix
with their bodies and their carts and one woman’s pain and the other woman’s
sympathy.
It’s not easy to find coconut flour,
particularly at Safeway. I had to stand there a few minutes, right
next to the women, as I scanned the names on the yellow-and-red bags: almond
flour, rice flour, masa, grits. I was aware that the women were aware that I
was too close to them. But what could they do? They were
having a private moment of confession and absolution in a public
place. And what could I do? I had the competing desires
not to intrude and to offer my sympathy and support to a woman I had never
met. I went with the more socially acceptable of the two options: I
blocked out what the women were saying, invited the labels of Bob’s Red Mill to
absorb my attention, and then walked away. If I did not hear their
words during the 60 seconds in which our lives intersected, I noted their
postures and tones of voice, and I saw their faces. The blond woman
was exasperated, tired, worried, sad; she was dealing—probably still is
dealing—with some heavy stuff. The other woman was an acquaintance,
surely not a friend, for a friend would not have had to rely upon an update in
Aisle 7 but would have known what was going
on. Scratch that: what if the woman with the burden had lost touch
with her friends because of whatever she’s been going through, and when she
happened upon one of them at the grocery store she was so relieved that she
just started talking, that she gave an honest response to a banal
question? Or maybe the question wasn’t banal at all but rather asked
in earnest by a friend who had remained concerned even while pushed to the
margins of the blond woman’s life: “How are you?” or “How
are you?”
On New Year’s Eve I met a fellow mom,
only I didn’t perceive that we were fellows. She is of the
stay-at-home variety; she has four children, and her husband works in international finance. I am a working mom with one child, an estranged husband, and
a live-in boyfriend. We chatted, and I noted that she was pretty and
that the gap in her children’s ages was odd—her daughter is in 8th grade,
and the younger three are 7, 6, and 3 years old. I assumed the
family was affluent, what with the financier husband and the mom not working and
the decision to have so many kids. I found her to be pleasant but
figured that we have little more in common than our Kindergarteners’ shared
teacher. I stood in judgment of her, as we all do at times like
these, to justify my life choices. And though I suppressed it at the time, I
was jealous of this woman, for I projected onto her the elements of my life that
I sometimes feel the absence of: a marriage that worked out, ample time to
spend with my child, a younger, prettier face, financial
stability. After chatting for a few minutes, I moved on to another
woman, this one a recent transplant from Portland who “processes” her own
chickens and chose her family’s new home on the basis of its ability to sustain
a suburban farm. I judged her, too.
A month later I found myself cutting
paper with the businessman’s wife. We had both volunteered to help our
kids’ teacher, and what this offer amounted to was a two-hour stint in the
elementary-school workroom. Here is what I learned: she has a name,
and it’s not Mom. Eight years ago, she was single and living by
herself in Tacoma. She was going to school to become a first-grade
teacher, a job she eventually held for one year before she gave birth to her
first child. When she imagines herself as she used to be, her
current life is unrecognizable to her: she wonders how she got here. Her
husband travels to Hong Kong for work. He is gone for three
weeks of every month. When she tells him
that things are hard, he asks her not to make him feel guilty. After
all, what can he do? But, I say to her, and she agrees, she has to
tell him things are hard. Her oldest child, the improbable 8th-grade
daughter, is actually her sister’s child. My fellow mom is raising
her for reasons she did not explain to me. Of the younger children,
the oldest, in first grade, has Asperger Syndrome and, my workroom partner
believes, some other systemic malady. She hasn’t yet found the right
doctor, the one who will engage seriously with the physical evidence she has
compiled from watching her son. A friend once told me, “No one knows
your child as well as you do.” When my daughter was a baby, that wisdom
empowered me to seek the medical attention that saved her life—literally, saved
her life on one day in April 2007. In the workroom at the elementary
school, I passed along the advice. And I listened to her.
Her son has rages. Upon
experiencing one, a healthcare professional once said to her, “Does
schizophrenia run in your family?” In the workroom, my friend the
fellow mom said to me, “I didn’t know if I should be insulted by that question
or not.” I replied, “You should be insulted. What a stupid thing to
say to a parent in a moment like that.” I told her that once, a
nutritionist, having measured my infant’s cranium with the same yellow tape we
have all wrapped around our ribs and waists and hips before ordering from a
catalog, offered the medical opinion that my infant might be hydrocephalic—have
water on the brain. This while my daughter and I were already
interned at Children’s Hospital due to her esophageal atresia. Look
up hydrocephalus, and while you’re at it look up esophageal
atresia. I was terrified. By a nutritionist with a
measuring tape. When my daughter’s surgeon visited later that
evening, I ran the “diagnosis” by him. He assured me that my
daughter had simply inherited her father’s big head, and then he must have laid
into the nutritionist, for the next day she came to our room to apologize and
to say that she had spoken out of turn. Damn straight, she
had. And so had the phlebotomist who fancied herself a psychiatrist
when she set off a rage in a 7-year-old with Asperger’s.
My fellow mom told me that when she’s
out with her children, strangers give her parenting advice. Old men
glare at her son as if to say, “This sharp look will get you in line, sonny” or
“If he were my boy he wouldn’t be behaving like
that.” She understands the impulse, but she resents it all the same, for
these people have no idea. They look at her and they see some
version of what I saw on New Year’s Eve, but worse: they find her to come up
lacking; they think they could do a better job than she’s doing. And
she knows this. She told me what she wants to say to them: “I know
that they say it takes a village to raise a child,” she begins, “but you’re not
in my fucking village.”
That day in the workroom I connected
with someone in a way that propriety prevented me from doing in Safeway.
The other mom did most of the talking—fully two hours’ worth—and I hope
that she got some relief and some companionship out of our time
together. She’s holding a lot together. And aren’t so
many women? I often overlook that fact and take too lightly my own
ability and instinct to share the load.
My little brother and your friend’s son have very similar situations – an Aspersers diagnosis punctuated with fits of rage –with the associated misdiagnoses and unsolicited advice. There were nights when my sister and I would hide in her room waiting for the screaming to stop and times when I helped my brother sneak away from school to calm his frustration before it could escalate past his control. I remember one psychologist who was borderline physically abusive, forcing my brother on “runs” to cure him by sheer exhaustion and I remember my parents wanting to get him into an alternative school but, by law, the situation had to escalate until police intervened and he was temporarily institutionalized before we could get clearance. And so the situation slowly escalated until we did get that clearance.
ReplyDeleteAs far as I know, there’s not an AA-like support system out there for parents of kids with healthcare and mental health issues (I imagine something with sponsors to call in moments of crisis and a sharing of grief and pain), but I think there should be. I know my mom felt like she couldn’t confide in her sisters or friends for fear of the reactions your friend describes – that she would simply be told to do better, to try harder, that she was a failure as a mother – and I know that when she started coaching for Special Olympics, she started to feel less overwhelmed and alone.
My brother graduated high school with a lot of good friends, completed two years of college, has an almost full-time job (he is also making a living online from his skill with video games), and he has not had a fit in, I believe, 8 years. I couldn’t say if he was “cured”, if he has learned safer ways to experience his frustration, or if his brain finally developed a way to moderate that behavior, but if you ever have workroom detail again and the topic comes up, you can tell your friend that the situation’s not hopeless and, more importantly perhaps, that she’s not alone.
(And I know that my comment, with all the OMG WE’RE EXACTLY THE SAME, is pretty much the opposite of your post, with its message of empathy for unknown and unknowable struggles, but I felt a such jolt of recognition at your words – describing so astutely something I speak of so rarely - that I thought perhaps I’d sneak it in under the broader theme of shared struggles)
I'm really glad you commented. Thank you for sharing your (and your brother's) story. I have recently met some other people with family members with disabilities and impairments, and a more tuned-in and capable group you will not find. But they, too, have stories of misdiagnoses, hurtful comments and "suggestions," well-intentioned but ultimately misguided treatments. I know that at the community level there are organizations that offer support/host support groups, but you make a good point that there's room for something on the national level. I *just* wrote and submitted an op-ed about the need to provide care for employees who care for others--something beyond Federal Family Leave, something that recognizes the difficulties of long-term care. Fingers crossed it finds its way to print.
DeleteYou seem like a great sister, by the way. You helped your brother sneak away from school? You are not to be underestimated.