Cynthia Dyer-Bennet (cdb) Thu 10 Oct 02 08:23
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!
Jonathan Kopp (jbk) Thu 10 Oct 02 08:47
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?
Marcy Sheiner (mmarquest) Thu 10 Oct 02 08:58
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.
Jonathan Kopp (jbk) Thu 10 Oct 02 11:47
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?
Marcy Sheiner (mmarquest) Thu 10 Oct 02 18:05
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.
Marcy Sheiner (mmarquest) Thu 10 Oct 02 18:16
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.
Jonathan Kopp (jbk) Thu 10 Oct 02 21:15
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?
Marcy Sheiner (mmarquest) Fri 11 Oct 02 08:45
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.
Martha Soukup (soukup) Fri 11 Oct 02 12:24
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.
Dave (drsmith) Fri 11 Oct 02 13:49
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?
Martha Soukup (soukup) Fri 11 Oct 02 15:22
(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?)
Jonathan Kopp (jbk) Fri 11 Oct 02 16:12
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?
Hoping to be a goddess, but settling for guru (paris) Fri 11 Oct 02 18:29
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.
Marcy Sheiner (mmarquest) Fri 11 Oct 02 18:46
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.
Dave (drsmith) Fri 11 Oct 02 21:04
>> possibly embarrassing my kids with the book << Actually, now that you mention it, I was wondering what your kids thought of the book.
Martha Soukup (soukup) Fri 11 Oct 02 21:15
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.")
Hoping to be a goddess, but settling for guru (paris) Fri 11 Oct 02 23:11
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?
Marcy Sheiner (mmarquest) Sat 12 Oct 02 08:12
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.
Jonathan Kopp (jbk) Sat 12 Oct 02 16:14
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?
Marcy Sheiner (mmarquest) Sat 12 Oct 02 19:43
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.
Betsy Schwartz (betsys) Sun 13 Oct 02 11:55
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.
unmolested by promised flowers (izzie) Sun 13 Oct 02 12:24
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.
Marcy Sheiner (mmarquest) Sun 13 Oct 02 21:15
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.
Jonathan Kopp (jbk) Sun 13 Oct 02 23:08
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?
Jonathan Kopp (jbk) Sun 13 Oct 02 23:14
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?
Betsy Schwartz (betsys) Mon 14 Oct 02 10:57
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.
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