Inkwell: Authors and Artists

    
Joining us today is Marcy Sheiner, author of "PERFECTLY NORMAL," her memoir
about raising a child born with a chronic medical condition known as
hydrocephalus, and her ongoing relationship with him as an adult with a
disability.

Marcy is editor of ten books of women's erotic fiction. She is author of
"SEX FOR THE CLUELESS: How to Have a More Erotic and Exciting Life."
"PERFECTLY NORMAL" is her only non-fiction book, though she has published
hundreds of features, essays and articles in newspapers and magazines. Her
short stories and poems have appeared in many literary journals and
anthologies. She has also written four complete novels.

Leading the conversation is Jonathan Kopp. Jonathan is a psychologist,
practicing in the San Francisco Bay area.  One of his specialties is
consulting to families on the rewards, complications and challenges involved
in the parent-child relationship. A Well member since 1993, he has been a
co-host of the Parenting Conference since 1995.  With his wife, he has
raised a son and daughter, now both 17 years old and about to strike out on
their own, bringing their parents into the post-graduate phase of what has
been a grand education.

Welcome, Marcy and Jonathan!
  

    


Thank you, Cynthia! I'm delighted to be able to
chat with Marcy about a book I found brave and honest
and provocative and difficult to put down.  I read
it in two big gulps.  I think  that this book 
will change the way its readers think about mother-
hood, family and disability.

_Perfectly Normal_ is very much about more than
hydrocephalus.  It is just as much about family
systems, feminism, life choices, and how society
deals with (or does not deal with) disability and
a mother's real experience.  Most immediately,
it is very personally about you and your family.

But since hydrocephalus is the subject with which
readers may be most unfamiliar, could you help us
get started by briefly explaining what it is?
  

    
Hydrocephalus is a disease of the central nervous system in which
spinal fluid, instead of circulating normally, becomes blocked. Fluid
builds up in the brain, exerting pressure and causing the head to grow.
Hydro = water; cephalus = of the brain; "water on the brain" is the
literal translation, but since that phrase has been used derogatorily,
I prefer not to use it.

In the late 1950s neurosurgeons began inserting a plastic tube, called
a shunt, into the side of the head, with  tubing that empties  into
the stomach. Since then this treatment has been refined to the point
where it is almost routine. Daryl, my son, was born in 1965, and was
actually one of the first babies to be successfully shunted; he is
among the first generation of people with hydrocephalus to reach
adulthood.

Depending on numerous factors and the success of the shunt, side
effects of hydrocephalus can range from absolutely nothing to blindness
and retardation, and a host of other problems in between. Daryl has
learning disabilities, emotional problems, and seizures. Almost
everyone with a shunt needs revisions from time to time; Daryl has had
only eight; some children have had as many as 50 or more shunt
revisions.
  

    


You were young when Daryl was born.  Can you say
a little about your feelings at the time - about
becoming a mother - and about learning your new baby 
had a disability?
  

    
I was just 19 when he was born. I'd gotten pregnant like most people
in history, "by accident," but once the father agreed to marry me, I
was totally excited about having a baby. I adored babies. I'd been
taking care of my little cousins for years. Ås I describe in the book,
nobody told me about Daryl's disability until the day after the birth,
so I had one day of thinking everything was "normal." 

When my gynecologist told me about hydrocephalus, I was devastated.
Well, first of all I was too confused to be truly devastated and know
what I felt-- but I do recall feeling like someone had just thrown me
up against a wall. I plummeted into  depression and self-pity. In the
hospital they gave me some mood elevators, I think--they should have
kept giving them to me after I went home, because that's when things
really got rough!

These days when a woman has a baby with a disability, both parents are
usually visited by a counselor or an expert in the field. Not only was
counselling unavailable, but nobody around me seemed to see any need
to be thoughtful about how they communicated with me. My gynecologist,
for instance, kept reassuring me I could have more kids.And so began
the added insult to injury that has continued to this day.
  

    
I need to add that once I'd absorbed the news of my baby's condition,
my overriding feeling was of guilt. I felt totally responsible for
having something go "wrong."  I was sure it was something  I had done
or failed to do during pregnancy. The guilt was all-consuming. It
totally undermined any confidence I may have had that I would be a good
mother.
  

    


So you had this intense mixture of
feelings, related to the news about Daryl's 
disability - depression, self-pity and guilt.
Do you remember how that affected your
ability to connect with Daryl in the beginning?
  

    
I don't think it got in the way; that is, I loved my baby fiercely.
But there were added elements to our relationship: one tends to resent
the source of guilt and other negative feelings, and I resented him as
fiercely as I loved him. This emerged as anger about having to perform
the normal tasks of motherhood, feeling overwhelmed and put upon
because I had to take care of him. I believe that most mothers feel
some of this, but for me these feelings were magnified. 

I also felt a certain amount of fear around my baby--fear of this
strange condition, this child with a big crooked head. (It was not that
huge or misshapen, but enough for someone to notice and wonder if
something was wrong). I was afraid I would do something that would hurt
him further. This manifested in feeling inadequate as a mother. Thus, 
I never experienced the joy that I now see parents feel with their
firstborns. I glimpsed a bit of that when I had my daughter two years
later--but motherhood was ruined for me, and I did not much enjoy her
either. 

Daryl was operated on when he was ten days old, and was in the
hospital for a week. I experienced that week as a relief from having to
take care of him.
  

    
It must have been tremendously difficult.  There was a little girl in our
neighborhood who must have been born about the same time as your son.  She
also had a shunt, which was partly successful.  Her mother had surrendered
her, and the older couple raising her were her foster parents; she didn't
live to adulthood, but she walked, with braces, and seemed to have a pretty
full life (she was enough younger than I was that I didn't know her well),
and her foster parents, to their joy, were able to complete an adoption
while she was still alive.

All of which is just to say that I could see from the outside how terrifying
it was.  To us kids in the neighborhood, Melinda was just a kid--albeit one
who walked with difficulty with leg braces--but her mother couldn't bring
herself to keep her; and our parents said quietly, when she was gone, that
she was going to die.  We all knew that one thing about Melinda: she was
going to die.  And I think, though she seemed basically to be a happy enough
kid, that this universally-accepted truth had filtered through to her.

There will never be a book about little Melinda, so I'm glad there's one
about your son.
  

    

I'm about 2/3 through the book, because unlike Jonathan, I find that
I'm constantly putting the book down.  We have a 4-year-old son who
has been autistic since age 2, and I think that gives us a lot of
common ground with you, Marcy.  So as I read, things resonate with me,
and it makes me stop and revisit or reevaluate things that have
happened to us in the last couple of years.

The most jaw-dropping thing I've read so far was when a doctor would
tell you, "Don't worry, you can have more kids."  What a message that
choice of words delivers -- incredible.

I think I can remember the first passage that really resonated with me:
You were talking about the censorship of negative feeling about
parenthood.  I think I even remember the page it was on - 33 or so
(I don't have the book with me to verify).  There seem to be such
strong unwritten rules about not expressing negativity about
parenthood.  I gather that that censorship of negativity
must have been harder to live with when you were 19, as there wasn't
Early Intervention, there weren't support groups, you couldn't just
hop on the internet and find a message board with other parents in the
same boat as you, etc.  So I'm guessing that censorship was a lot
stronger back then than it is today?
  

    
(You have more in common than Melinda's foster parents.  Melinda's brain
damage caused her fairly severe mobility problems, but mentally and
emotionally she was basically "normal"--whatever that means.  I'm guessing
the mental and emotional challenges are even tougher than the physical
ones--am I right?)
  

    


People say the most insensitive things, thinking
they're being kind and helpful - even to parents
of non-disabled babies.  But some of the things said
to you took my breath away, Marcy!

Can you remember what kinds of company and support
felt helpful, and what was well-meaning but hurtful -
or just meanspirited?
  

    

Joining in the conversation to add that most new mothers, even if their 
children are "normal", can feel overwhelmed with fear at the 
responsibility for a new and seemingly fragile life.  As an adult who is 
newly "disabled", I feel enormous empathy for your younger self, Marcy, 
and the burdens you had to bear in addition to your baby's physical 
problems; our society isn't kind to those of us who don't fit into a 
comfortable "norm".

I found your book difficult to read, yes, but I applaud your courage and 
honesty in writing it.
  

    
Martha: I wonder if Melinda had spina bifida? Children w/ SB have an
opening towards the base of the spine, which is what makes them unable
to walk unassisted, and also causes incontinence. I have never met or
heard of anyone with only hydrocephalus who can't walk. (I've met lots
of people Daryl's age now, through conferences). 

Daryl did not have so many physical challenges, so I don't know how to
compare that to the mental and emotional. He did most physical
things--held up his head, sat and walked--much later than "normal"
babies, and I was pretty freaked out about it. I had my second child,
Stacy, when he was two, and there was a period of time when I was
carrying a kid on each hip, because he didn't walk yet. 

One of the things I'd like people to understand is that this book is
really not about my son--it's about ME. It's about what it is like to
raise a child with a disability. 

Dave: Yes, things are totally different today when it comes to
expressing "negative" feelings about being a parent. The books, the
support groups, the magazines and articles--it's mind-blowing.  I
bought one of these books for a friend of mine when she was pregnant, 
in her 30s, and I told her we didn't have these kinds of books back in
the day. She said "Yeah, because it took you guys to write them."  My
favorite zine is hipmama--by, for and about young mothers. In fact,
they are publishing Chapter One of PN in their next issue.

The only support I had that was helpful came from one friend, Barbara,
who had a baby a year older than Daryl. Her mother was a pharmacist,
which in our neighborhood was practically as good as being a doctor,
and Barbara would consult with her about problems I had with Daryl.
Then she'd report back to me in a very matter-of-fact way. She never
imparted any sense that she felt Daryl was different or weird, or that
our problems were beyond the pale--but at the same time there was
acknowledgment that something WAS going on.

Well-meaning people would tell me how great I was, and say stuff like
"I don't know how you do it." My mother-in-law was one of those. I
hated hearing that;--as I say in the book, it made me feel like I was
some kind of alien for being able "to do it." 

This life experience shaped a lot of my feelings and philosophies
about people and friendship, in a negative way. Daryl's situation was
and is like a litmus test for me. People either denied anything was
wrong and  ignored the whole thing, or else said really insensitive
things. I don't think my own attitude helped, though: I wouldn't let
anyone into this area of my life for a long, long time.

Slippage here. Thanks for your post, paris. You know, I started this
book a long time ago, and I have always expected to be roundly
condemned for it. I expected to be called a whining baby of a mother,
selfish, and really evil for publishing it at all, for possibly
embarrasing my kids with the book. Nobody has reacted that way, which
is starting to make me feel that they didn't get my message! Can you
tell how much I hated being a mother??? And, yes, I know mothers of
children without disabilities can be really overwhelmed too. In fact, I
say somewhere here and have said over and over that I believe having a
child with a disability magnifies what ALL mothers experience. 
  

    

>> possibly embarrassing my kids with the book <<

Actually, now that you mention it, I was wondering what your kids
thought of the book.
  

    
I would have thought Melinda had spina bifida, but all the adults said
"water on the brain."  And it was explained to me that she had a shunt in
her head, without which the fluids would build up and she'd die.

It's not impossible she had both, I suppose....

(The word hydrocephelus was also used, but usually they said "water on the
brain.")
  

    

Marcy, there were times I, too, hated being a mother, and cursed myself 
for ever insisting that my then-husband and I have a child.  I never felt 
quite as incompetent, either before or after, as I did for the first two 
years of Zack's life.  And, like you, I thought I was the only mother on 
earth who felt like that.  My shame for those feelings was overwhelming.

The truth is, I expect, like everything else, there's a spectrum of 
feelings about motherhood, from women who really do hate their babies 
from the moment of birth all the way to women who sacrifice everything in 
order to be "good" mothers.

Maybe if the bandwidth of acceptable feelings towards parenting were 
widened just a little, things would be easier for those of us who didn't 
fit the mold of a "good mother" just right?
  

    
Most people who have spina bifida also have hydrocephalus, so it is
indeed more than possible that Melinda had both. 

I am glad to be asked how my kids feel about the book. This is
something most writers struggle with, it's a classic contributor to
writer's block, worrying about hurting people you love if you write the
truth about them ( fiction writers worry too that even if they
disguise people they will recognize themselves). I talk about this all
the time in beginning writers' classes that I teach. 

I decided that I would let Daryl read the book before publishing it,
and if there was anything he did not want me to put in, I wouldn't. So
he read it with me present, biting my nails, and we talked about some
things, and there was nothing he wanted me to cut out. He's very
emotionally savvy, so he understands that people can have feelings like
what I write about and still love the person. He also has understood,
for years now, how the culture fucked us both up. Don't get me
wrong--some stuff does upset him, for instance, finding out that my
grandfather wanted to put him in an institution. Again, we talked about
it: my grandfather, I've realized since he died quite awhile ago, was
a pretty horrible person who did some very evil things, and as much as
I dislike my ex-husband, I am glad he was around to stand up to the
patriarch of my family. So Daryl came to see, as I did too, that
wanting to institutionalize him says maore about my grandfather than
about him. He also knows, because of this, that I never for a minute
considered institutionalizing him.

I didn't give the manuscript to my daughter to read because I didn't
think there was anything to upset her, but then I got nervous and
wished I had--but she read it and she said there was nothing in the
book she didn't already know. She, as a matter of fact, is much more
upset that I do so much sex writing! And also, she's a therapist who
runs "Mommy and Me" groups, so she's somewhat enlightened about these
issues.

 I think that if mothers had more permission to talk about these
feelings we'd see less incidents like the mother beating her kid up in
the car, and Andrea Yates, and so on.
  

    


Marcy, have you given any thought to why
why our culture has such strong prohibitions 
against the expression of negative, or even ambivalent
feelings about motherhood?  Do you know of other
civilizations where such feelings are more accepted and
integrated?

 
  

    
At times I have thought that there's a conspiracy of silence bred into
us that serves the reproductive imperative; i.e., if everyone spoke
the truth, then women would know what motherhood is really like, and
might not have babies. In fact, two or three young women have told me
that the book made them think twice about having kids. 

( "What would happen if women told the truth about our lives? The
world would split open."--Muriel Spark)

Whether or not the above theory is correct I'm not sure. I don't know
what it's like to raise kids in other societies, except that some
cultures are more cooperative about it, with kids being raised more
communally.  I think that part of the way mothers are expected to
behave is connected to woman-hating in general.

Do you have any thoughts about this? I would love to hear some.
  

    
To me there's something frightening about how much parents of children
with disabilities are on their own. In addition to all the
responsibility of caring for the child, the parent has to become
therapist, investigator, legal researcher, patient care advocate, and
do it with a child on each hip, as you put it.  And it seems like the
institutions that are set up to *help* can just be additional burdens.
  

    

Parents of children with *dis*abilities aren't alone in those endeavors, as
I'm learning everyday.  Not that my situation is at all comparable to
Marcy's (it's not!!) but I think that parents of any child who isn't in the
mainstream is left to flounder somewhat by the one-size-fits-all of
parenting society.
  

    
That's probably true with regard to any kind of "difference." Just
being a minority. For instance, I have a friend who adopted two
children from Nicaragua, and now both have entered their teens and are
having a lot of problems because they've always felt marginalized
living in a mostly white community.

Regarding disability, I have seen things change; I've seen how much
more aware everyone is and how much more support and information
parents get these days. However, I've heard from more than one parent
that it's not all that glorious now either.

You are right, Betsy, that the people and institutions that are
supposed to help often make things worse. When Daryl went for job
assessment and training, for instance, the agency treated him as if
he'd never be able to do much more than tie pieces of string together.
Also, 8 months ago I was diagnosed with a chornic lung disease, so I'm
going thru very similar stuff AGAIN now, but for myself. The
institutions and agencies are the biggest problems I have. 
  

    


I'm so sorry to hearthat you're ill, Marcy.
I really *don't* know of societies where
there is more tolerance for ambivalence
and negative feelings in mothers.  I suppose
the evolutionary psychologists would make
some argument for this taboo being crucial
to the survival of the species.  But as you
point out, often it's the unacknowledged
nature of these feelings that creates the
danger (e.g., Susan Smith, etc.).

Are there any institutionalized or informal
support systems that *have* been useful 
in recent years - that parents should know about?
  

    


In thinking further about it,  maybe the
support for such feelings in other culture
comes less in the form of tolerating their
expression, and more by way of responding
to them via other members of the tribe/community
coming in to help the unhappy overwhelmed mother
care for her baby and/or for herself?
  

    
There's something about our society that puts parents in the position
of constantly dealing with bureaucracies, and with *strangers*, to get
help. Other societies have other problems, but I've often thought how
different it would have been to raise a kid in a house where there was
a grandmother and a couple of aunties and some older cousins, and
where I could go over to the neighbor's house and hang with *her*
aunties and cousins and such, and do our work together or whatever,
instead of having to bundle my kid into a car seat and go find some
45-minute playgroup when I needed company. Not to mention being able
to hand the kid over to someone for half an hour at a stretch, without
making an appointment.


I have a couple of friends going through this, two with more than one
child who needs extra help. Their stories aren't mine to tell, but I
just think the help isnt doing a good job of meeting them halfway.