Inkwell: Authors and Artists

    
Betsy, send your friendds to this conference--it's open to the public.

I'm thinking about poorer and more populated countries such as Mexico
and India; people with "deformities" are just a part of the landscape
in these places. I only know from films and from what people have told
me, tho. I have a feeling that differences of this kind are more
accepted as a part of life, partly bc they are more common due to less
medical care and more disease causing agents in the water and food.
Then there are the countries full of people whose limbs have been blown
off by land mines, or who have been otherwise injured in war. But not
ridiculing someone walking on crutches is not the same as supporting
the parents both emotionally and practically.

The evolutionary theory still holds up even if the silence creates
Susan Smiths, bc there's much less matricide than there would be less
childbirth if women were really presented with the full picture of what
motherhood is like on a daily basis. Even MY daughter, when she had
her first baby, complained to me that I had not told her how hard it
was. My jaw dropped open, bc it's my perception that I constantly
talked about it. No, she said, all you talked about was 'the culture,
the culture.' And I probably did, to cover up the personal part of my
feelings so as not to make her and my son feel personally responsible
for my distress. I guess that is another reason women don't talk about
this--so as not to damage the children.
  

    
   Your book, Marcy, caused me to review feelings that have been
stored in the attic for  46 years or so.  I was one of those, possibly
like Bob, who looked at my new baby and fell into his eyes.  It was the
deepest experience that I had had in my 22 years.  I was drunk with
love.  

   A few weeks later Diana said the doctor was wondering about the
size of the boy's head and about how quickly it was growing.  He would
consult with others, the doctor said, and they would compare notes, and
he'd get back to us in a few days or a week or some period of time.  I
don't know how long it was-- probably only a week.

   When he got back to us it was to say that they all agreed that the
whole boy was growing rapidly, and nothing was wrong.  In those days
hydrocephalus meant a steady decrease in functioning and a miserable
death.  There were no shunts.  Hydrocephalus was death.  In the days we
had waited, we had looked at our joyous child and could not imagine
any way we could endure his degeneration and death.

   Years later when I read about successful shunting of the fluid into
an infant's body cavity, where it would be dispersed without harm to
the child, there was a celebration in my heart.  I thought of the
children who would grow up to be perfectly normal (although I guessed
there would need to be more surgery as the child grew).   I put
hydrocephalus out of my mind.

   Reading the first chapters of _Perfectly Normal_  blew a hole in my
happy dream of another illness overcome.  The doctors thought so
little of what they could do for Daryl that they counted him as good as
dead, with their, "Don't worry, you can have another baby."  

   What did they think you were?  Stone?  What about the baby you had?

   You were angry about the failure of Daryl's original shunt, but
that may not have been clumsiness or malpractice.  The procedure was
new, and there were bound to be unforeseen realities, failures of
technique, etc..  What I think was unforgiveable was the lack of
follow-up.  You should not have been the one telling the physicians
about Daryl's continued symptoms, but they should have marked those
symptoms themselves, and should have explained to you what they meant. 
(Which was a new shunt instantly.)

   I was sad about your lack of trust in yourself, your suspicion that
Daryl's developmental short-circuit must have been your fault.  What a
hellacious worry!  It makes me wonder if your family blamed you for
bad weather and for the poorly sewn seams in your new store-bought
dress.  It seems from your telling that Angie was just the kind of
friend that you would want, but in the middle of your misery, there you
were giving the bathroom floor a meticulous toothbrush scrub,
preparing for Angie's visit..  You must have thought that instead of
renewing your friendship, Angie meant only to check out your
housekeeping to see if you had lost a step.

   My wish was to post comments about _Perfectly Normal_  four days
ago.  I wish I had,   I sense that I am out of step, but I'll be back.

   
  

    


On the contrary - what a thoughtful and
generous contribution, ccridge.  

As you describe, with every pregnancy
and birth, comes a very powerful fantasy,
that of a healthy child, a natural and 
powerful emotional connection, and a
lifetime of normal growth, development,
achievement and relationship.

When a child is born with disability, some
unusual challenge or difficulty, the child's
birth is accompanied by a death for the parents.
The death of the fantasy of a "normal" child 
and childhood.

Marcy, was letting go of this fantasy difficult?
Were people understanding in giving you time
to come to terms with this loss?
  

    
Huh? I  STILL haven't let go of the fantasy!! I STILL catch myself 
expecting Daryl to do things he cannot do. I still get angry at him for
things that he cannot help. It all stems from having my fantasy of a
wonderful fairy tale baby shattered. Ånd as far as people understanding
it--as I thought I had shown in the book, nobody understood a damn
thing about what I was going thru, certainly not a concept as recently
popularized as this one.

ccridge, your post is wonderful in many ways, and very supportive .
Yes,
I was angry at the doctors for the failure of the first shunt at the
time I wrote about it; now I know that they had no idea what they were
doing. But in fact, as you said, when it did not work, the first doctor
should have sent us immediately where he eventually did send us.
Ådvice to anyone with any complex medical problem: go to a doctor
associated w/ a teaching hospital in a big city. The big city is the
most important part. NYC if possible. (I'm a NY chauvinist.)

I really do think that every mother who gives birth to a child with a
"defect" or whatever, feels responsible and guilty. Granted, I was
raised by people who were pretty bad to me verbally and did not instil
any confidence in me, and I was only 19 so had not had time to grow
into my own image of myself--but I'm fairly sure this is universal.
Have you ever heard of this family, I cannot think of their name now,
but they have adopted something like 16 kids w/ disabilities; the
documentary about them is called "Who are the D-----s and how did they
get so many children?" Well, the mother , Mrs. D., says that the reason
she thinks they do so well w/ these kids is because she did not give
birth to them, and so she doesn't have any guilt. Implied in that is
the truism that guilt is crippling, and that parents of children with
disability screw up very easily and often bc they are plagued with this
guilt, which leads to resentment, which leads to acting-out on the
child, which leads to more guilt. A vicious circle. And again, probably
only different in degree from the experience of most mothers.
  

    

Very interesting, about that documentary and that family, Marcy.
I hadn't heard of them.  Yeah, guilt is such a powerful, er,
something.. powerful drug, almost?  It's almost comical, how guilt
expresses itself in our family; it's as if my wife and I are in
some sort of contest for who has more guilt.  Our son is autistic,
and autism has a strong hereditary influence, but we're not really
sure how much of a role our genes played.  So sometimes we find
ourselves competing for the title of "It was MY genes who caused
his autism."  It almost feels like a contest for who has more
street cred or something.

(I'm probably making our situation sound worse than it really is.
Our son has responded pretty well to therapy in the last couple of
years, so I can't say we're all THAT guilt-racked at this time.)


Another thing from the book that struck a familiar chord was the
subject of discipline, or lack thereof.  Something about a teacher
asking how you disciplined Daryl, and you seemed to describe being
a little baffled by the question almost.  I think we haven't given
our son enough discipline; do you think a lack of discipline sort of
comes with the territory?  I mean, there are times when he's doing
something questionable, and part of me thinks "I should discourage
that,"  but another part of me thinks, "Well, maybe it's just an
autistic thing and I don't understand."  Do you suppose that that
sort of fear/uncertainty/doubt factor has a general tendency to cause
parents of special-needs kids to be too soft on discipline?
  

    


Great question!  And more generally Marcy, did you go 
through an internal struggle about how protective and/or
induldgentto be with Daryl?  Did you come up with any way to judge that
that felt like it made sense?  Does Daryl have an opinion
on the matter, now that he's grown?
  

    
It's possible that I did not discipline Daryl because of his
disability, but I've always seen my laxity more as a product of who I
was at the time: an anti-authoritarian hippie. However, I have two
friends who have disabilities, and I notice that I don't have very high
expectations of them, and that I let them get away with stuff I do not
accept from non-disabled people.

The protective versus indulgent issue is real big for me. I have never
known how to behave or what was rational and reasonable (How DOES one
know? Anybody??)  As a result, while I've been neglectful of my son, I
have at the same time been a smothering mother. It's possible, believe
me, I am the living proof. I still am overprotective. Daryl fights me
at every turn. He gets mad at me whenever I exhibit motherly
protectiveness. Recently I said something to him, I don't recall what,
something like "be careful" when we were out in public, and he flipped
out, and pointed out to me that I would never say that to another adult
I was with. He is 37, remember.

I feel guilty , as a matter of fact, because I sometimes think my
overprotection prevented him from learning many things, for instance,
how to ride a bike. I half-heartedly tried to teach him how, but I was
just as happy when he couldn't seem to do it, and subtly encouraged him
to give it up.
  

    


So are you saying, in part, that the powerful
mix of feelings you had about being a mother, along
with the societal disapproval of negative maternal
feelings and reactions kind of threw off the instinctual
compass you had about how best to care for him?  Some-
where in the book, you mention that you feel your
suppressed negative feelings led to a series of "accidents,"
where Daryl got hurt, which you said resulted from your
carelessness; other times you said you found yourself 
playing too rough in tickle-fights with him.
  

    
Yes. Interesting, isn't it? I was terrified of him getting hurt by
riding a bike or anything like that on his own, yet I did things that
resulted in him getting hurt. I don't know what you mean by
"instinctual compass?" I never had one--do other parents? I described
in the book the first time I was faced with what to do, whether to
leave him alone with the other toddlers, or take him into the kitchen
with me and the other women. I left him w/ the children and he got
hurt. That was the first time. The last time a significant event of
this kind occurred was when he was about 17, by which time he'd had
fairly frequent seizures, tho they were pretty much under control with
meds. He got himself a job with a construction firm, and they actually
had him digging ditches in the hot sun by himself, far from anyone
else; if he had a seizure-- and I've always felt they could be
triggered by heat--no one would know or be able to help him. Of course
he had not told his boss about his condition. I agonized over this, and
then I called his boss, who promised to change his assignment.
Instead, he fired him. Daryl did not talk to me for 3 weeks. Come to
think of it, this guy could have been sued--but at the time, 1984 or
thereabouts,  I never thought of it. 

Writing this now I feel bad about the decision I made. At the time, I
felt it was the right thing. I tried first to get Daryl to tell the
boss himself. I was in a very difficult position, let's face it. Who
knows what was right? How do other parents deal with these things?

I read an article today about autism increasing hugely over the past
few years in California, and nobody can figure out why. 
  

    
Marcy, I have nothing much intelligent to add just now, but do want to
say that this is a good conversation. 

My stepmother was strongly censured when my brother was a kid, for
being too indulgent AND protective; in fact she is STILL criticized for
this post mortem - she's been dead for many years. My brother has
cerebral palsy and suffered intense seizures as a child. A lot of this
resonates with me because I saw how she dedicated her life to him, and
how awful many/most people were to her about that. And what an angry
woman she became. And how the doctors recommended institutionalising my
brother, telling all about what he would never be able to do. 

Motherhood/Parenthood = Scary, lonelier than it should be.  
  

    
Jen, you certainly did add something! My experience was as nothing
compared to your aunt's. I have a friend in NY, Christine, who has a
child, now in his 40s, who is mentally retarded with seizures. And I
mean a dozen or more seizures a day. SHE has devoted her life to him,
and had a similar experience to what you describe. She is very angry
too, and also half mad. I adore her. Her life is beyond difficult, and
few people help her, tho she lives in a supposedly close knit
community--nobody wants to deal with it, and they use her personality
as an excuse to stay away. Next to Christine, my experience was as
having a "normal" child compares to mine.
  

    


I do think that some people have what they see as
an instinctual compass when it comes to parenting
decisions - though "instinctual" may be misleading,
since probably some of it comes from their own 
experience being parented.  I know I feel like I do -
though that doesn't mean there aren't times of
intense uncertainty, especially with teenagers.

And I do imagine that having a child who is dramatically
disabled in one way or another (understanding that Daryl
is on the mild end of this circumstance) would make 
it very difficult to judge what risks to let him take.

The new stats on autism are, indeed, alarming.  We are
discussing them in the Parenting Conference here on the 
Well.

Marcy, have you been involved in the disabled rights movement -
or has Daryl?  What do you think of this movement?  If you have
been involved, what's your experience been?
  

    
Yes, I have been involved in the Disability Rights Movement--primarily
as a writer. For awhile I was writing a lot about disability politics,
culture and events, for local papers like the Bay Guardian, and for
online venues on disability. I really love disability culture--it's
very exciting and fresh, and also I feel very comfortable around the
people who are involved in it. 

About two years ago I helped put on a memorial reading for Mark
O'Brien, who was a poet/writer/activist and who, as a result of
childhood polio, had spent most of his life in an iron lung. An
enormous number of people came to that event, but as with most of these
things, hardly any were not disabled. the "temporarily able-bodied" as
they are called don't know what they're missing.

I have also served on the board of the Hydrocephalus Association,
written for their newsletter, and helped plan conferences. Daryl hand
goes to the biannual conferences where he's met lots of people. One has
become a good friend who he talks with and occasionlly visits--she
lives in Seattle. He also usually accompanies me to shows and such when
I'm writing about it.

I haven't been writing very much since I got sick, and since the
economy went south (much less freelance work available) and so I
haven't been hanging out in disability culture. That's me--I never
socialize unless I have a purpose!
  

    
Para 3, Line 2: I don't know where that "hand" came from--something I
changed got screwed up. Sorry.
  

    
   Of the things in the book that made me smile (and there were not a
hundred of them) was when Darlene found out that she would have her
skull cut, and she .asked for the phone and privacy to call Daryl.  As
she knew that her mother would not lie to her in your presence, she
knew that Daryl would not lie to her.

   I think that we adults forget how much we counted on the wisdom and
heart  of our peers when we were children..  I think, too,  that we
undervalue  the empathy.we had-- both for each other and for strangers.
 As adults we tend to think it is *cute*, as though the child is
pretending  to care, playing the role of being a little mommy or a
little daddy.  We do not like to think how soon it is that we count for
little with our children.

   [For the story of it, at least, I hope that Darlene and Daryl were
friends when they grew older.]
  

    
Oh, yes, they are still friends, tho they live 3000 miles apart. What
you said is very interesting--I had hoped that did not come off as
"cute," and felt it was important to put it in there. Actually, Daryl
told me that all he recalls is her asking if it hurts when they take
the stitches out. 

>>>>>We do not like to think how soon it is that we count for
>>>>little with our children.

I've gone thru this very intensely with regard to my daughter.Daryl
still needs me and possibly always will (how I wish he would marry some
wonderful woman!) but once Stacy fled the coop, I thought about how
important my mother is in my life--not very--and it was painful to
realize that that's about how important I'd be to Stacy. However, we
are much closer than my mother and I are or ever will be.
  

    
   Earlier today I went back to _Perfectly Normal_ and looked again at
your account of Daryl's 30th birthday:  Sure enough, Darlene was
there.  Once again I'd skipped a page or a paragraph and missed
something that was important.  It's a good thing that I don't have to
take examinations any more.

   You characterize your book as a memoir-- the story of you and the
tasks that you  had to do (and did) loving and raising your
hydrocephalic son.  In the beginning of your story, you say it took you
years and years to write the book-- that you would get stuck, put it
away, take it out, write more, then get stuck again, put it away, and
so on.   

   Someone more dedicated to her 'look good' than to the truth--
someone like the 20-year-old Marcy, maybe-- would revise the
first-written parts to reflect what she has learned in more than thirty
years.  You have not done that, and so the story is not a simple
report of a passage in your life, but is the tale, too, of your
spiritual growth.  It is more book than I expected.

   Keep on truckin', Marcy.  See you in the Well.
  

    
That sounds dismissive.  Sorry about that.  I mean that I doubt if I
have more to say.

But that's not true.  I have so-called "benign hydrocephaly,' if there
is such a thing, and I show a couple of scary symptoms.  I'll ask
about it when I see Dr. C. in the morning.
  

    
I've never heard of benign hydrocephaly. What is it? You do know the
Hydrocephalus Association is in SF and has a website etc? If you need
that info I will post it. Ålso, for the record, we do not say
"hydrocephalic," which defines the person by their disorder.

Thank you for being so generous in what you said about me and the
writing. I actually started the book when I was around 32, and the
first two chapters stayed very much the same as what you see now. And
thanks too for saying it's "more book than I expected," tho I'm not so
sure what that means--but it is reassuraing; since publication I've
been feeling it's too short and too sparse, there is so much more i
could have written, particularly about my daughter. I may revise it
someday. It is apparently my life's work.
  

    
I'm sorry to say I haven't yet read it, Marcy - cannot afford new
books right now. I wonder if the library has it. Will check tomorrow,
as I'm even more moved to read it sooner rather than later thanks to
Coleman's posts.  

ditto marcy's question, Coleman. 
  

    


Marcy has writing the book, and now seeing it
in print changed anything about the way you see
your life with Daryl?  I mean to ask, did you find
out much that was a revelation in the process of
putting it on paper?  Given what you have said,
I assume that the act of writing and publishing has
been one of self-acceptance?
  

    
Jen, sorry, but you won't find the book in the library, as I published
it electronically, POD (Print on demand). Maybe someone in this conf
who has it would loan it to you.

Jonathan, I  had a lot of revelations when I wrote different parts of
the book at the time that I wrote them. At this point, after 37 years,
there aren't that many revelations remaining to be had! But writing,
yes, is almost always somewhat therapeutic, which is probably why this
book has become my life's work, as I said only half jokingly. Once I
saw it in print, my strongest immediate reaction was regret that I did
not take even longer and make it much better; I felt like a failure in
some ways, in the way that some writers do. (I read that every time
Erica Jong finishes writing a book she says "There. I've done my best
and it's still not good enough.") 

I don't know if it has changed my relationship with my son, as that
relationship is constantly evolving and healing anyway. 

I am still waiting for someone to tell me what an awful mother I
was/am for the things I say in the book, that I am a whining wretched
creature. That is what I expected all the while I was writing it.
  

    

Marcy, I believe you showed enormous courage in voicing feelings and 
thoughts that most, if not all, mothers feel at some point during the 
child-rearing years.  I remember a friend telling me that her 
pediatrician warned her never to go into her daughter's room when the 
baby had been shrieking for some time without turning on the bedroom 
light and taking just a moment to look at her.  I think he believed that 
we react to babies (and kitten and puppies) with affection as a means of 
preventing us from harming them - and that looking at a screaming baby 
would, perhaps, offset the desire to do something drastic to stop the 
damned crying.

I remember one frigid night in February when Zack was a new-born, going 
out to the garage and throwing soda bottles at the walls for about 
fifteen minutes.  Zack had been colic, and had been crying non-stop for 
hours and hours, and I knew it wasn't safe for me to pick him up until I 
found a way to vent my anger.  It became clear to me that night that the 
line between an "abusive" or "bad" parent and a "good" parent was about 
as thin as any line could get.

I don't think anyone really knows what makes a "good" mother.  My mother, 
for instance, stayed home, cleaned the house, cooked wonderful dinners, 
and made my life absolutely miserable in the process.  On the outside, 
she looked like Donna Reed.  Inside the home, she was a lot more like 
Cruella DaVille.  I've often wondered what our lives might have been like 
had she worked outside the home, or found some more fulfilling outlet 
than fanatically cleaning the kitchen floor...

All this to say: you did what you could do at that point in your life. I 
never got the the sense that your love for your children or your concern 
about their well-being disappeared.  It felt as if you did what you did 
to survive, not to hurt them.  I don't think you ever stopped loving 
them...
  

    


Yes - you have said a number of times that
you are very surprised (perhaps even a bit
dismayed) that the real anger you expected
has not been leveled at you.  Perhaps this 
is because your readers have felt liberated
and understood by reading your confessions?
  

    

Absolutely.