January 21, 2011

"Beneath those stars is a universe of gliding monsters."


Pondering monsters
Originally uploaded by Citizen Rob

"...Heaven have mercy on us all - Presbyterians and Pagans alike - for we are all somehow dreadfully cracked about the head, and sadly need mending." -- Melville (Moby-Dick)

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(Note to parents of kids with polymicrogyria: While I'm not normally one who worries a great deal about so-called "triggers", and while I'm writing this in large part on your behalf, I nevertheless feel like I should give you a heads up that I'm going to be talking about stuff that you are all-too-aware of but might not particularly enjoy reading about.)

I know I recently pledged to focus on the positive, and this post might not seem to honor that. But I actually think it does, because I believe clarity and respect are positive attributes, and I need to speak about those topics today.

I received a comment on this blog recently, from someone who has left critical comments before, and that's fine. I've posted them in the past because I really don't believe that it serves anyone, least of all me, to sanitize the comments left here. I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason. (Long-time readers will no doubt remember the whole "Jane Book Club" episode, the one that culminated in someone calling my office phone to threaten my child, only to mispronounce her name.) I think my comments become boring if they're all "go Rob" or "me too". But this comment I ultimately decided not to publish, because I felt like it could be offensive or hurtful to other family members of persons suffering from polymicrogyria, aka "Schuyler's monster".

But the remark stayed with me, if only because it's not even remotely the first time I've been confronted by the idea it contained. If I thought it represented one crank's opinion, then I would let it go. But the fact is, it doesn't, not by a long shot. So I guess I've changed my mind about posting it.
"What will become of your life when Schuyler's monster becomes her identity? Maybe she will grow to resent that you call what makes her a unique individual a 'monster' as if were a bad thing."
Like I said, the idea of Schuyler's polymicrogyria as a kind of unique personality trait rather than a serious and potentially dangerous affliction is hardly a new one. And I'm sure that I've made it even easier to make that claim. I recently said the following, after all:
Schuyler's polymicrogyria isn't her greatest challenge, not any more. Her life doesn't seem to be in any real danger, with no apparent seizures yet, and her monster doesn't impede her everyday life with the ferocity that it does for so many other PMG kids. For that, I am grateful.
I further explained that Schuyler's difference, her uniqueness, is something that I'm still thrilled by, and I consider it my distinct honor to be the person who gets to help lead her through a world that might not understand her difference, but which is nevertheless a much better, more vibrant place because of it.

So let me make this as clear as I can. I love Schuyler wildly, and I find her to be fascinating. I think she is by far the most interesting person I've ever known, and she's only eleven. And while I acknowledge that a huge part of that comes from the fact that I am her father, I am also aware that my fascination with the strange and wonderful person she is stems in no small part to the fact that I get to see into her unique world more than most people, more than anyone with the exception of Julie.

I think I've made that pretty clear in the past, in what, like 90% of what I write?

Here's the other thing, however. If I could have a chance to experience life with a Schuyler who was born free of her polymicrogyria, if I could go back in time and spend the past eleven years with a neurotypical version of Schuyler, I would do it in a heartbeat.

Because here's the thing that a statement like "you call what makes her a unique individual a 'monster' as if were a bad thing" is sugarcoating:

Polymicrogyria is a bad thing.

Polymicrogyria, in its many forms, affects the lives of its victims in various ways, and all of them are bad things. The difficulties with swallowing that consign some PMG kids to a lifetime of liquified foods and bouts with choking and life-threatening pneumonia are bad things. The lack of speech that robs PMG patients of significant early communication and stunts their development both intellectually and socially for the rest of their lives, that is a bad thing. The accompanying cerebral palsy that many patients experience, the difficulty in walking, that is a bad thing. The cognitive issues that can range from a developmental delay to severe mental retardation, those issues are very bad things indeed, no matter how you spin them.

And the seizures, the ones that Schuyler is still in danger of developing, those terrifying episodes that strike some PMG patients at birth, those powerful electrical hurricanes swirling in those young, innocent brains that rob many very young polymicrogyria patients of their very lives before they reach their first birthdays, those are very very bad things. I follow polymicrogyria discussion boards, I see the notices that some young person has been killed by that thing that makes these kids such "unique individuals". I haven't experienced the pain that so many polymicrogyria families and those who battle other similar disorders like microcephaly and Angelman Syndrome have gone through, but I've witnessed the devastation that many of them endure.

And I never let myself forget, because it would be a crime of hubris to do so, that at any time, especially now as Schuyler's body and brain begin to undergo a whole new world of changes, our own world could be rocked, and that Schuyler's monster could grow some very big teeth.

So yeah. I feel comfortable calling it a monster, and while I celebrate Schuyler's individuality and always will, I also recognize that it has come with a price, one that she pays and will continue to pay all by herself. And I call it unfair, because it IS unfair, that she will not have the opportunity to choose her own individuality, her own path, without the unfeeling hand of that monster writing much of her narrative for her.

I understand how many people in the disability community choose to embrace disability rather than fight it. I get the Holland poem, and I understand that it means a lot to many people, even if I reject it. But I do reject it, as I reject the embrace of disability as just another thing that makes our kids and our loved ones who they are. It feels wrong to me, almost like a kind of fetishization of disease or disability.

I am not moved either way if you feel that way about your own afflicted family or your own disability. Everyone makes their own way as best as they can, and I respect that. But I find it offensive if you suggest that I should do the same, and that I should embrace the thing that, yes, breaks my child and which torments so many of her neuro-atypical brothers and sisters with such ferocity. It is a bad thing, as far as I am concerned, and I will call it a monster.

I started using the monster metaphor long before I wrote a memoir, but it wasn't until an interviewer asked me about it during the press attention that the book generated after its release that I gave it much thought. I realized that it was a metaphor that I embraced, not for literary purposes but for personal ones. I needed to imagine Schuyler's polymicrogyria as a monster, because I can't fight a little girl's broken brain. But I can fight a monster. I can imagine myself going into battle against one of those.

And I don't even envision that fight as something heroic, either. Maybe I did, in the beginning, but not now. I'm not Perseus, heroically outsmarting and killing archaic beasts. I'm not St. George slaying the dragon.

If anything, I am more like Captain Ahab, fighting obsessively against a monster that I can never defeat. Like Ahab, I am aware of the futility, but I am also unable to turn away.

Schuyler's affliction, the one that hurts and kills other children, the one that touches her more gently than some but still colors her life so completely, it is a monster. If someone comes here to try to make a case that it's not, and that it is simply one of the innocent, beautiful little parts of her personality that make her the purple snowflake that she is, they should do so knowing that I will disagree, and I will find their disrespect for this bad thing to be offensive.

Melville's description of the sea ("...this velvet paw but conceals a remorseless fang") works pretty well for Schuyler's manifestation of polymicrogyria. It's not cute. It makes Schuyler's life hard, and moreover it devastates and even takes away the lives of others. I'm with Ahab on this one. I'll never quit.

Thus, I give up the spear.

28 comments:

Carol S said...

Granted I haven't read everything you've ever written, even on this blog, but I believe that's the best thing I've read of yours thus far.

Sara said...

The part of the comment I am struggling with is this - "What will become of your life when Schuyler's monster becomes her identity?"

I live with diabetes like you. I would think that it would be difficult to find someone in the diabetes community who embraces diabetes as their identity. I am fairly confident we spend most of our advocacy time fighting against being defined by our disease.

I don't think Schuyler will EVER consider her monster as her identity. Part of it? Maybe But her whole identity? I hope not.

Rob Rummel-Hudson said...

Right now, she is claiming vampirism as her identity, except when she's a wombat, so yeah. I don't see that happening, either.

Sheuset said...

"...and then, as if his chest had been a mortar, he burst his hot heart’s shell upon it."

Linda said...

The part I don't understand is that this is now "what makes her a unique individual"? I've never even met Schuyler, and I could tell you about fifty things that make her a unique individual, and that's none of them. In fact, where I sympathize with you the most, and where I always feel your agony the most, is that there are parts of what really *does* make her a unique individual that are harder for you to share with her (or perhaps more accurately, for her to share with you) because of this barrier that tends to assert itself and, as you say, make her life harder.

I don't think she will ever think this is what makes her unique, and for that matter, from what I've been able to discern, SCHUYLER THINKS MONSTERS ARE COOL, it's just that you have to fight them because they're monsters and that's the job. I think for Schuyler, it's actually the perfect metaphor. Even if you're a fantastically talented monster-fighter, I can recognize that without making the monster a panda.

Geez.

Wembley Fraggle said...

Thank you for writing that. I never questioned why you call it her Monster because, like you, I can picture it that way. I see your beautiful, unique girl being followed by a big hairy, toothy monster, and I think if she were my child, it would help me to put a face to the monster (a big hairy, toothy face), so that I would have a visual to hate that isn't attached to my daughter. I could never look at my daughter and hate a bit of her even if it is broken, but something that follows her around (even just in my mind) and causes her pain & trials I can hate. (Does that make sense?)
I've often wondered why you chose "Monster" and now that you've explained it I think it fits rather well.
I'm sorry that you get such rude and unfeeling comments and I wish you all the best! (PS: Your daughter is beautiful!)

ShaggyDaddy said...

The Neurodiversity movement is very new, and like all new movements tends to over-compensate for a mainstream view of infinite inferiority, often to the point of absurdity. As a somewhat rabid, yet still intellectually reasonable member of the Autism community I can really understand the conflict of ideology here.
Autism crusaders easily band with Deaf culture advocates because they tend to both have the same message-- different, not worse. But, you know, that is really easy when you are talking about disabilities that come with no change in life expectancy, and comparitively small long-term cognative and even social implications.
That is where it gets complicated. Autism advocates, especially Neurodiversity oriented ones will see this wonderful girl who uses AAC, who cannot speak like everyone else, who has some social difficulties and they say "ah ha!" I know her struggle, and her father is wrong to call her brain broken. They are contending with 50 years of repressive mis-categorization of Autism; and they are inadvertantly taking it out on you. Perhaps they forgot to read your book, but most likely they are having trouble seeing past their own struggle. You are highly relatable in your writing and your struggle, and sometimes the culture overlap has some spillage. It is unavoidable, the confict, and I really appreciate you talking about it, because it is important to disability culture as a whole, to make these kinds of distinctions.

We know so much about each-other's struggles, yet there is still so much more to learn.

daisyjo21 said...

Love this. Thanks for writing it.

diviner said...

My wife and I have had to battle our own monster - she has temporal lobe epilepsy - which was fairly benign at first then started to chew larger and larger lumps out of our life. We never, EVER, accepted that it was part of her, just an adversary that had to be fought at every turn.

We were lucky, in that a knight in shining armour was able to battle her monster into quiescence (she had brain surgery which has almost totally suppressed the epileptic seizures) but we know a number of people who still have their own monsters to fight, and almost none of them accept the monster as defining who they are, and I have to say I feel sorry for the ones who DO accept it in that way. Keep fighting - Schuyler is, and always will be, very much other than her monster.

lemniskate said...

Speaking as the mom of a kid with autism, i could substitute that word for Polymicrogyria and say every word of what you're saying here. it's not a popular opinion - and I HATE that Holland poem - but it's how I feel. If I had the chance to meet and raise my amazing, awesome son without the barriers and problems that his autism has created, my god, there's not a thing on this planet that I wouldn't give up for it.

As always, Rob, I'm grateful that you're writing.

Julia O'C said...
This comment has been removed by the author.
Sarah said...

Thanks so much for writing this. I think ShaggyDaddy's point is a good one. There is a qualitative difference between disabilities like high-functioning autism and those like polymicrogyria.

The most important difference, I think, is where the suffering comes from. Many people in the neurodiversity movement (and I count myself among them; my son is autistic) would argue that a good part of the suffering of people with "milder" forms of autism is caused by the way our society treats people who are different, and our failure to make reasonable accommodations. The disability itself, in these cases, does not necessarily cause physical suffering, reduced life expectancy, severe impairments in mobility or ability to communicate, or intellectual disability.

Of course, we're all different. Many people with autism do experience physical suffering as a direct result of their disability [as opposed to the way society responds to it], but some do not.

I don't feel like I want to cure my son's autism, but it's very easy for me to say that when, so far, his autism amounts to some sensory processing issues and slightly atypical language development. I don't mean to trivialize it, but let's be honest — it's not on the same plane as polymicrogyria or a whole host of other disabilities, and to imply that they're the same is both intellectually dishonest and incredibly disrespectful.

I think it's the right of each person touched by disability to perceive it however they choose. As you pointed out, it's not the kind of ideological position that a debate is going to sway anyway — it's a gut response to our own set of experiences.

And it is truly absurd to try to impose that ideology on anyone else. I think people who attempt to do so are reacting to a lifetime of feeling underestimated and misunderstood, but at the same time they are failing to understand that not everybody's experience mirrors their own.

Rob Rummel-Hudson said...

Sarah and ShaggyDaddy, I'm really glad you posted comments, thank you so much for your perspectives. Sarah, I've been reading your blog tonight, and I have to say, I love your writing. I'll be watching your work with great interest.

Paula said...

Schuyler is who she is despite her monster. Same as all our kids who deal with crappy, serious things that aren't going away.

I've been meaning to say for a long time that I was glad when you started referring to Schuyler's PMG as the "monster" instead of Schuyler herself as being the "monster". I would never have commented about it while you did it because that was your choice and your way of dealing, and I understand why you could relate those lyrics to Schuyler and your relationship with her. It's a warm, catchy song, and you always did it in a loving, devoted way. Still, that monster wasn't Schuyler, and it wasn't the monster who was beloved! It's funny how our thinking evolves with time. I think it's a much more accurate analogy the way you're using it now. I can really relate to calling our kids' godawful conditions "monsters".

Rob Rummel-Hudson said...

Um, that was just a song title, and I used it because Schuyler loved that song. It's something we still reference together, I just don't reference the song here for legal reasons.

So you might have to take it up with Schuyler...

MFA Mama said...

Well said, Rob. I have always had issues with the term "Aspie" (used to refer to a person, usually a child, with Asperger's Syndrome) for similar reasons. My kid with Asperger's Syndrome is not an "Aspie." He's a kid. Who has Asperger's. Which makes his life harder than it needs to be and which I therefore do not find cute.

yellowfattybeans said...

also, schuyler is not her syndrome. she has an identity in addition to her medical problem. god, people are really dense sometimes.

JLH114 said...

I think you manage a tricky dynamic that could be difficult for many parents. You identify the disability with the provocative "Monster" label and fight it like the dickens, BUT you also simultaneously maintain a healthy positive attitude towards your child, celebrating and loving who she is. It would be so easy to let that frustration and fight to pervade your child's life so the child winds up feeling SHE is the monster. And life sucks!

I do wonder what Schuyler will say when she's older and thinks critically about how others (especially parents) perceive her and define her (or her disability). Well, that's one of the trials of parenting- try your hardest and still get told you screwed up!

krlr said...

My comment will not be nearly as good as Shaggy's (I'll admit I was tempted to write 'ditto') but I'll acknowledge this is something I've struggled with. The crowds on the message boards that wouldn't change a thing about their child and that DAMN Holland poem on one end of the spectrum and the simple facts that my girl (who has down syn) does have cognitive delays, did require open heart surgery, and will always be immediately recognizable as a member of her club on the other end. The lure of "different not better" is tempting. I desperately want her to be accepted and loved for who she is. And who she is is literally programed at the cellular level. Absent that extra chromosome she would be a different person - it's that simple. But absent that extra chromosome she would not have had two surgeries (w/the 3rd scheduled*), she would not be at higher risk for leukemia & early onset alzheimers, and we would not be talking IEPs tomorrow. Probably not. Something else could have gone wrong along the way too. But as Shaggy noted, this WILL affect her life expectancy.How do you love someone so unreservedly and yet object to their cellular makeup? I simply don't think there's an answer.

[*Lest I sound overly dramatic, the 2nd & 3rd surgeries are minor eye fixes, not life threatening stuff].

farmwifetwo said...

Then there's us who sit on either end of the autism spectrum that just detest those ND'ers.

The elder has never been told, and is now with a dx of mild NLD.

The younger... I wouldn't wish severe autism on anyone. Why anyone would claim it "wonderful or glorious" is beyond me. We slog through it daily and if someone handed me a magic pill for him tomorrow... he'd be taking it.

Rob Rummel-Hudson said...

(In response to a comment that no one will ever see, alas...)

Funny; I thought I was clear:

"I've mentioned before that I will reject a comment if it is threatening or disparages anyone besides myself, or if it is clearly part of a coordinated campaign to dump on me for whatever reason."

I'm not sure why you'd go to all the trouble to type out a comment that you know I'm not going to post, rather than sending me an email.

Oh, wait. Anonymity, that's right. Only someone with the courage of their convictions and a sense of self worth would actually send a message with their name attached. Sad little drive-bys are for comments, even the ones that will never be posted.

Got it. Thanks.

Nechama said...

As a mom of a child with spina bifida i would do anything in the world to get rid of it. yes, i want her to know no pain, no teasing and no more freakin drs. I dont get the people that say "i wouldnt change my daughter for anything." um i would. let her be healthy! whats wrong with that?

traveller13 said...

I personally disagree with your use of the term "monster" to describe something that your child cannot separate from herself. This goes against every instinct I have. I am an educator but not a parent.
I don't think most people (with the always exceptional minority of crazies) would argue this point with you out of spite or with the goal of proving you wrong but rather out of concern for your daughter and a hope that sharing one's own experience can make a difference in the life of another child and family going through a familiar struggle.
However, there is no point arguing about it as only time will tell how your daughter will feel about it. I do feel it is important to hear the experiences and opinions of adults who have grown up with disabilities or differences (whatever they may be). I think theirs is the most relevant voice in this debate.

Rob Rummel-Hudson said...

traveller13:

I thank you for your comment, and I respect your opinion. This topic comes up from time to time, and since I think it deserves to be revisited periodically, I'm going to address it in a separate blog post instead of here. I'll be posting that response shortly.

Mama Deb said...

Bravo for your honesty. I have found myself not wanting to blog much lately because I have similar thoughts as you about my son's autism. I find myself qualifying each slight movement to 'go there' with the 'oh, but make no mistake that I love my son dearly' ending. Sometimes I just want to be honest and say that it sucks and it's scary and I h-a-t-e it. Thank you for being confident enough to do that.

Marla said...

I can never eloquently express how much some of your posts mean to me (and sometimes that means I don't comment) but...this post was fantastic. Especially the part about that Holland story. But really all of it.

Teresa said...

I'm a new reader of yours, and this post made me a "follower."
It's simply one of the best I've read on the subject. It's still with me...days on.

Loves Pickles said...

Good for you, Rob. In my opinion, it's akin to someone claiming they love their cancer or that cancer is their identity. It's insulting to those who endure the condition, whatever it may be. But the number one point here is, this is your life, your family, and your choices. No one has the right to tell you how to live your life. It's also, I might add, YOUR BLOG. It's how you sort out how this affects you. Maybe you never share this blog with your daughter, or maybe she'll never give a damn what you've written on here.