They're out there. We've all run into them. Once we tell
them about our child's diagnosis, there's no telling what's going
to come out of their mouths. They're...The Clueless!
Who are the Clueless?
Let's face it: when it comes to death, we're all clueless.
What sets the Clueless apart from the rest of normal society
is that in the face of your pain, they cannot empathize. They
minimize the loss or impending loss, they tell you your baby
isn't human (bad science, there) and it's better she die now
than later (I ask for proof on this one) and find many platitudes
which they will treat as painkillers ("God needed another
angel.") Many good-hearted people will say something dumb,
and anyone who is sensitive will feel as if she has said
something dumb, but you'll hear past the fumbling words to the
heart. The defining factor of the Clueless is that they have
no heart behind the words. In other words, if you think you're
Clueless, you probably aren't.
Doctors
Acquiring a medical degree doesn't make you correct. I'd like
to point out right at the start that I've lost a tremendous amount
of respect for doctors and nurses after seeing the way my grandmothers
were treated during their dying illnesses. At least one of those
doctors should have been arraigned on murder charges. While the
care I received during Emily's pregnancy was stellar, I believe
it was that I was seeing midwives and not doctors.
However, we're stuck with bodies that get sick from time to
time, and that means we need to deal with medical professionals.
Many doctors coerce their patients into a termination they don't
want and don't need. That might be easier for the doctors, and
it might also be that when faced with a situation like ours,
they feel they have to do something. I've heard of doctors
who lied to their patients or insulted them because they were
carrying to term. So be it. Find a different doctor. You can
search online for a doctor near you with One
More Soul, The
American Association Of Pro-Life Obstetricians and Gynecologists,
and Pro-Life Maternal-Fetal
Medicine.
It's not always possible. I know on my old health insurance
plan, our choice of OBs consisted of precisely one practice.
I changed health plans in order to escape that cattle car! If
you have an option, do everything in your power to find a supportive
professional to take you through the next few months. A doctor
or midwife you trust is very important during birth; I've experienced
both extremes. I don't say the doctor necessarily has to be caring,
but that would help too; I'd rather have a doctor I trusted who
didn't care than one who cared but who I thought might try to
"look out for my best interests" by manipulating me.
Looking at it from a doctor's perspective, it must be disheartening.
All those years of medical school and residency, study and hard
work, and your doctor can do nothing to solve your problem. It
must be a helpless feeling, and doctors are unused to feeling
helpless. Many doctors try to escape that feeling by writing
you an antidepressant prescription. All that education, and it's
all they can do. Accept the gesture for what it is. At least
in that situation, you know the doctor cares.
Your best protection against your own doctor is information.
Learn as much as possible about your child's problems and network
with other mothers and fathers whose children were affected.
Get a second opinion. Ask questions whenever you feel something
might not be right. But above all, don't stay with a doctor who
belittles you and your informed choices. After all, doesn't being
"pro-choice" mean that your doctor has to respect your
informed choice as much as a choice to terminate?
A word of caution...
A nurse has written me to say that she didn't know any better
when she started her nursing career. In some cases, cluelessness
and insensitivity may be due to inexperience and hospital policy.
The feeling will be the same as far as you're concerned. You're
the victim--your job shouldn't be to educate. But if you have
the strength to educate your doctor or nurses, more power to
you. Your insensitive health-care practitioner might be the next
hall-of-famer, if only he has the courage to really listen to
you, and the personal strength to change his attitude.
If you are a medical professional who wants to learn more
about support after infant loss, I highly recommend "A Caregiver's
Guide To Perinatal Loss" and Limbo & Wheeler's "When
A Baby Dies." Both have good and compassionate suggestions
of things to say, do, and avoid. In many cases, it's the gestures
that matter most to the patients (such as booking the six-week
postpartum checkup for a time when no pregnant women will be
in the waiting room.)
Strangers
This is the easiest bunch of Clueless people to deal with.
Most of them simply don't need to know your baby's diagnosis.
Some of them will need to be told, like the dental hygienist
who won't shut up about how much joy you'll have with your little
one. Those are easy ones to silence simply by shocking them ("I'm
sure that's true. Too bad she's going to die") or telling
them, "I'd like to change the subject, please" or even
"Please, stop talking. Now."
Mildly tougher are the Clueless strangers who aren't really
strangers because you have to see them on a regular basis. The
children's librarian, the greeters at church, the receptionist
in an office you visit frequently, that guy who always is mowing
his lawn when you go for a walk... These are people who don't
know you and are most apt to throw cliches your way. In most
cases it's probably better to just grin and take the dumb things
they say because they don't mean it anyhow.
Acquaintances
Sometimes these people will surprise you. They know you're
pregnant and will naturally ask all those pregnancy-questions.
They'll find out afterward when they see you without a baby.
But they don't know what to say. The response I find most memorable
was from one woman I'd figured I wouldn't tell at all. One day
she started raging about the unfairness of the world and started
telling me about a show she saw where a woman was having a wanted
baby and it had no brain! I said, "Oh, anencephaly.
That's what Emily has." This woman just gaped at me for
a very long moment. Then she asked a couple of polite questions,
like was I sure. (As if I'd have just guessed at something like
this.) At which point she went right back to prattling about
her own problems.
The trouble was, I needed to deal with her a few times a week.
I could see she really wanted to ask why I wasn't getting rid
of the baby--but something kept her from doing it. I guess because
I'd talked to her before about Emily and she knew how much I
loved her just from that.
Which brings me to the methods I came up with to stop the
Clueless from hitting me when I was down...
Mention Your Child's Name
This is the easiest way to do it. When talking about the baby,
if you know the gender, use it; if you have picked out a name,
use it. The woman who sniped at me, "When will it all be
over with?" couldn't keep up that nasty tone when I replied,
"Emily's due date is July 3rd." It's refreshing in
a way to reply calmly when they ask something particularly rude.
"Why aren't you terminating it?" "You mean why
aren't I terminating Emily?" It gets the point across.
Being Philosophical
This worked with other people. When I visited the maternity
unit ahead of time to ask some questions, the nurse at the desk
asked why I was waiting so long to deliver. I said in a very
even tone of voice that I probably had 60 more years to live;
Emily had four months. Four months wasn't a very long time, considering.
She softened up after that.
Lying
Not recommended, but I used this tactic once. A woman I knew
from a community organization (and saw a several times a year)
said, "And do you have to carry the baby to term?"
I said, "Yes," quite honestly, since to be true to
myself, I had to carry Emily to term. I just didn't mean it the
way she meant it. It ended the conversation, at least until next
time.
Being Silent
There's nothing more menacing than a clearly enraged person
who is saying nothing. It's a not-saying that gives the impression
of a person coldly burning with fury. If you can pull it off,
it works on the worst offenders. Make sure to keep your jaw clenched
and a level stare on the individual.
Friends
Your friendships are going to change over this. Some will
deepen and some will disintegrate. If it's strong friendship,
it stays strong. Then you know you can count on each other no
matter what. If you find a friendship dissolving, it's not necessarily
because of your friends; in part it will be that your understanding
and your world-view will change as a result of your child's life,
and the person who emerges might have different priorities.
I dropped only one friend because of Emily, and that was a
friendship destined for ruin anyhow. This person's longstanding
selfish behavior came to a head, and I couldn't condone it any
longer. Three months after Emily's death, another friend (whom
I had presumed to be a close friend) dropped me. That hurt a
lot, and it made me wonder who was next. It's double-jeopardy,
being punished twice for the same "crime." First reality
punishes you. Then some friends punish you again. I got through
that by counting how many friends had been so awesome to me in
the past six months. Logically, we're better off without friends
who are friends of convenience, seeking our company only when
we have shining smiley faces. Emotionally, it always hurts to
be written off by a friend. No tips here. I'm not sure what to
do myself.
The majority of my friends pulled low-level avoidance tactics
on me because they didn't know what to say. I had to seek them
out and show them I wasn't scary. Some talked with me about everything
but Emily. I found that they followed my cue for the most part,
though. If I showed them I could talk about Emily without breaking
into hysterical fits, they relaxed. If I used her name, they
used her name. If I indicated that I needed to talk, they'd listen.
(I have one friend who would be stunned to know how horrified
she looks every time I mention one of my "aberrant behaviors,"
like visiting the cemetery or remembering my daughter with love.
She never says anything about it, but her face telegraphs the
tension...or is it fear?)
If you find your friends are distant, they may be following
your lead. They may not want to "remind" you, as if
you could forget you were pregnant ("Oh! So that's why I'm
wearing these funny clothes!") They don't want you to suffer;
they don't want to see you suffering when they know there's nothing
they can do about it. So let them know what you want. When they
screw up, try to be charitable and keep a good sense of humor.
They don't know what to do any more than you do. This will only
get worse after the baby's death.
Family
Family can either be a blessing or a curse. They have the
same problems relating to you that friends have, with the downside
that you're stuck with them. You can't just cut off your selfish
old Aunt Magda who tells you that it's better your baby be dead,
though you'd like to. Family members also know you for a long
time in most cases, so they assume they know what you're going
through and what it is you need or want to hear. They'll share
a lot more willingly from their store of philosophical knowledge.
They want to protect you. You'll need to be more charitable than
with your friends, but do try to keep things steady with your
family.
Stupid Things People Say
People used to give me just the dumbest advice when
I had my first child. Like the guy on the airplane who suggested
that I clap my hand over my son's nose and mouth for about a
minute to forcibly pop his ears. Right. My grandmother had a
reply which has served me well, so I pass it along. Ready?
"That's certainly something to think about."
Not that you're going to do anything about it. Not
that the stupid statement had merit. As a reply, it's totally
neutral-sounding, so the Clueless Individual will walk away happy
to know she has solved every problem in your life. Other neutral
statements I came up with were "I'll remember that,"
"I wonder what my doctor would say about that," and
"I'll have to tell my husband about it." I think of
it as a kind way to tell them off.
Phones
I pass this tip along in case anyone might find it helpful:
"If someone is being Clueless over the phone, the way
to hang up on the person is to hang up *on yourself* while you're
speaking. If you hang up on yourself mid-sentence, then take
the phone off the hook, it'll seem like you got randomly disconnected,
and you can take a breather until you're calm before speaking
to the person. It's not a solution, just a mechanism for cooling-down."
In response to the above, Dana writes, It's a white lie,
but if there's someone whom you speak with frequently and frequently
would like to just hang up on, tell them that you got a beep,
your call waiting is messed up and you'll call them back if you
get disconnected. Then you can call them when you're ready
to deal with them again."
Dana is more technologically advanced than I am: I don't have
call-waiting. <g> This sounds as if it will buy you more
time than just the hang-up.
