Quality

August 6, 2007 | 40 comments
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Warning: To write this post, I’ve had to get personal. I apologize in advance for that, but some points I make require grounding in my observations about personal experiences, many of which are highly charged. The stories and observations I report here in no way represent everything I think about these matters. More importantly, they don’t represent everything I will think; I’m not through turning over these events and ideas to see what else is there. If you’ve come to this post already feeling overwhelmed or bothered about something, you might want to skip reading this, because it might make matters worse for you. After you read this post, it will self-destruct in sixty seconds. (I wish, but then again, some records must stand.) Did I mention this post runs long? Okay then, here we go.

In 1992 I gave birth to a daughter, Mattea. An in utero infection of a predatory organism called cytomegalovirus (CMV) destroyed nearly half her brain, including most of her brain stem. Describing what her life’s been like is impossible for a blog post. Furthermore, I’ve never undertaken the epic journey toward consciousness that she has, though I accompanied her every step of her way. Some things she felt and did I’ll never know how she managed.

Every day for the first nine months of her life she experienced numerous petit mal seizures. Daily seizures stopped at nine months but occasional ones thereafter caused her to wink out on us, like house lights when lightning disrupts the household’s electrical system. If circumstances such as long trips to and waits in doctors’ offices became too much for her, she retreated to somewhere beyond my reach. Her uninhibited startle reflex provoked episodes of severe vertigo and panic attacks. She’d scream for hours, sometimes days, flinging out her arms and gasping in fear, chest heaving, as if she was falling. Other sensory uncertainties, like on-and-off again cortical blindness and a possible sensory dysfunction in her mouth, combined to keep her constantly off balance. When she was about two and a half, she lost her swallow reflex. You can find the story of how we overcame this problem here. Watching Mattea unfold over the years has been like listening to a stammerer tell a story, but I understand now that throughout everything, she waged a mighty campaign for awareness, a struggle whose perils and triumphs she took on as a matter of course. All this in her beautiful, microcephalic head and small, palsy-shaken body.

Like other families living with extended mortal crises, ours suffered intense financial, physical, and emotional trauma. I won’t give an accounting of it all; this is enough, I hope, to give readers reason to consider that I might know whereof I speak.

Once Mattea’s challenges came to light, medical professionals waved the “quality of life” banner before us, not just in reference to Mattea’s prospects but also to our prospects as a viable family. Enough physicians warned us about the failure rate for families caring for children as involved as Mattea that I could tell they had an idea about us, about people like us, parents who raise children that present some challenges.

Like “death with dignity” and other catchphrases, “quality of life” is a slogan. Slogans appear to mean something; they also appear to feel something, since their component words prick emotion. Some slogans achieve enough success in how they assemble emotionally charged words that they suggest or arouse passion for causes they espouse. Or interest in or desire for what they wish to sell: “Be all that you can be.” “It’s the real thing.” And how about those tripartite mottos: “Ein Volk! Ein Reich! Ein Fuhrer!”

Slogans play an important role in branding. Branding marks a product or idea (sometimes a person) with ownership or sets it off for purposes of stigmatizing. You brand something—say, a product or idea or even a planned community—to identify it as the work of a particular manufacturer or developer. Brands are also physical marks burned into the flesh of cattle. Or criminals. In the case of animals, brands signify ownership. In the case of criminals, brands warn of the crook’s proclivities and double as marks of society’s condemnation. Not all branding carries a visible mark; societal branding occurs when one group stigmatizes another group, singling it out for special treatment, such as shaming or discrimination. Shunning usually accompanies this kind of branding; sometimes, death does. So in some cases, branding says, “This is ours.” But in the case of stigmatizing, branding announces, “This is not ours” or “You are not one of us.”

When doctors applied “quality of life” rhetoric not only to Mattea and her prospects but to the rest of our family as well, I read the rubber-stamp writing on the wall: Quality of life: Poor. All the “needing a host of interventions” talk rendered that judgment hard to misinterpret. Now we belonged to the medical community—and, we didn’t belong, because we presented scores of problems it didn’t know how to solve. However, brand established, we were channeled down hallways for anesthesia, a CT scan, anesthesia, a BAER test, x-rays, anesthesia, a spinal tap, anesthesia, etc.

Even before Mattea came along, I’d encountered quality-of-life-speak. I was born with a physical anomaly, a port-wine birthmark that covers most of the left side of my face. A small birthmark is commonly called a—talk about a loaded word—“stigma”; truly impressive birthmarks like the one I sport are called port wine stains. “Stain”—another word that slides easily between a clinical descriptor and a handful of depreciative connotations. Some PWSs indicate syndromes requiring medical intervention; mine appeared to be more of a “self-esteem” concern.

Prospects remained high for my being able to walk, talk, go to public school, hold down a job, pay taxes, vote, and in every other way be a productive member of society. All the same, my life and debate about its quality opened in tandem. When I was two, a doctor talked my parents into allowing him to freeze my face and try sanding off the PWS. I’m not sure what he thought he was going to accomplish. All he had to do was open my mouth and look at the inside of my upper lip and cheek to see the birthmark went clear through. But apparently, my quality of life was at risk; people had to try to do something—anything.

Nearly every doctor I saw for concerns unrelated to birthmarks, including routine checkups, asked me The Question: “Does that thing inhibit your social life?” For years The Question baffled then bored me, till one unfortunate doctor asked it on a day I felt feisty. I said, “Mm, not really. I suppose it acts as a kind of social sieve. People it would be a waste of my time to know drop right through, saving me some trouble.” He lurched back in his seat then said, “That’s not fair!”

Outside of a few side-trips into personal experiments, I’ve worn my PWS in the open, a decision that has brought a certain amount of adventure to my life. As I’ve walked here or there, strangers have stopped me to say, “I know how you can get rid of that thing.” A woman I’d never met pulled her car alongside me as I walked down Provo’s University Avenue. “Get in,” she said tensely. I did. She drove into a parking lot and, weeping, told me her story, how she had a birthmark like mine; how she covered it with makeup; how she cried herself to sleep every night; how she looked forward to receiving laser treatments, which are something of an ordeal but for her did not compare to the misery she felt every day of her life. I could see her sorrow but I’m still not sure what that was all about. Another stranger stopped me as I strolled through a park with my children. “I have a friend like you,” he said. “He won’t leave his house because he’s afraid of what others will do.” A dermatologist I consulted about a rash on my arms ignored my arms completely. Without so much as a “May I?” he went straight for the PWS, tipping my head this way and that. “Too bad we don’t have a program going right now or we could get that taken care of for free,” he said. A professor told me once, “I don’t know what to do when I get a student like you in my class.” As my thoughts fumbled to understand what he meant by “a student like you,” he added, “I tend to condescend to them.”

This is a Whitman’s Sampler of my adventures. I don’t tell these stories to persecute but to demonstrate the quickness with which we (myself included) rush to judgment about other peoples’ (and sometimes our own) quality of life. Plenty of people assumed that I suffered, that I was miserable and that I must be … well, the polite word for it is “unintelligent.” Miserable? Self-esteem is a non-issue; I don’t believe in it, so nobody need worry on that account. Unintelligent? Well, maybe, but not in the way some supposed.

When I think about it, I realize I’ve worn my PWS out at different times for different reasons, ranging from a shy expression of confidence in others to a my-face-in-your-face defiance. As I settled into adulthood, my feelings about it changed; I wore it in response to something I couldn’t name. Over the last decade I’ve figured out what that something is: I want to keep open another narrative pathway for and about people with PWSs, and I wanted to keep my own story open. Because what the world needs, I think, is more storylines to choose from and adapt to their own circumstances, not less. After Mattea’s birth, the PWS took on a more general role as my colorful, hard to miss argument against leaps to judgment about other peoples’ quality of life, though you’d have to hang around me a while to see how that works.

Over the course of Mattea’s frequent doctor and specialist consultations, the professional rhetoric changed from “She’s blind, deaf, quadriplegic” and the compelling “She’ll never …” mantra to “Wow, we don’t know what you’re doing, but keep doing it.”

What did I do? I don’t know for certain, and much of the credit goes to Mattea for holding up her end of the risk-choice continuum. But being a Mormon and trained to believe in the virtue of human agency, I supposed that down to the cellular level of her being Mattea retained some twinkling of agency, though perhaps because of the severity of her brain injury her decision to live or die hung in the balance. During my adventures in the birthmark zone, I’d gotten plenty of ideas about intelligence. That it wasn’t as bound by physiology as I had been taught. That human agency is intelligence’s most active ingredient. That intelligence’s depth and development, or lack thereof, is proportional to a person’s ability to create and/or perceive choices and then select the best one, all the while looking forward to the next tier of choice-making.

So when Mattea’s head circumference curve flattened, the doctor’s assertion that “There’s a direct correspondence between head size and intelligence” and his “severely developmentally delayed” speeches didn’t throw me. I did the best I could to create possibilities for Mattea, prospects from which she could choose, though my only hope she would get past her fear and discomfort as well as lack of important brain structure to make conscious choices lay in completely uncharted landscapes of faith and imagination. I put suggestions to her for long periods of time, longer than most people probably have patience for, because that’s what you have to do with these kids: Put the matter to them again and again, and wait, sometimes for years.

Extended physical rhetoric, bearing no guarantees of successful contact, was necessary. Physical therapy helped dramatically until our gifted therapist retired and we were subjected to a less inspired bunch that made things worse. To assure she got adequate rest (a key to controlling her seizures), I lay completely still beside her everyday during her two-hour afternoon naps lest any sudden movement on my part provoke her startle reflex and ignite panic. I felt glad when Teah outgrew her naps; I wasn’t sure she would, but she did; then my confinement lightened. Despite our doctor’s belief that she either was or was likely to go deaf, her best sense has always been her hearing. I sang to her, though I don’t sing well. When you’re trapped by a cave-in, like Mattea was, aesthetic excellence abides in the quality of the singer’s desire to reach you. I read to her as well; I’m a better reader than a singer. I kept her with me every day, all day. At night, I slept with her tucked under one arm. We want you, I put to her. Do you want us? Here I am. See? Come out if you can.

Slowly—and, if we are to believe the doctors, against all odds—Mattea emerged, blinking, into the light, accomplishing far more than her doctors thought possible. This isn’t a fairytale, though. I’m painfully aware Mattea hasn’t achieved fullness of potential. Part of the reason she hasn’t is that years of sleep deprivation and stress can drain your personal reservoirs so you aren’t as sharp as you were, no doubt about that. Insurance companies and professional communities we relied upon to fill in where we fell short ran out of motivation and ideas long before we did. Some progress we made has slowed; some ground we gained was lost. In other ways, she continues to improve. She remains a high needs child who requires a controlled environment to feel secure and live with some level of comfort. But she got out, she has a life, and we’re grateful for that. Furthermore, my family is still together and functioning, living at the implied 5% survival rate frontier of the settled 95% failure rate. I survived. My husband—he could use a little R&R on a Caribbean island, but he stepped up and solved many of Mattea’s difficulties, like the severe reflux problem she suffered with for years. He took Mattea to most of her doctor’s appointments because we discovered early on that doctors listened to what he said more closely than they did to what I said. Both of us think constantly about how to present Mattea with better options.

Children diagnosed with important challenges, either before or after birth, present great opportunities for science—and on the more intimate level, the children’s family members—to explore the boundaries of what’s possible and enter the creative whirlwinds that can carry them up and over. But apparently, society at large hasn’t developed enough consciousness itself yet to be able to look at someone like Mattea, say, “Wow, cool, let’s see what she can tell us,” and take her case to heart. If it did, she and children like her would take up position at the vanguard of the quality of life discussion, not be relegated to its rhetorical hospices. Breaking through the degree of developmental delay that handicaps medicine and modern society will take some doing. We could try singing to them. Or reading and writing relevant stories to encourage them. The point is to keep narrative pathways open and brightly lit so that people can see what’s possible. Then let nature, ever emergent and laden with desire, take its course.

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40 Responses to Quality

  1. Russell Arben Fox on August 6, 2007 at 2:09 pm

    Beautiful, powerful, harrowing, enlightening, awesome. Thanks for sharing a part of your life with us here, Patricia.

  2. Jacob on August 6, 2007 at 2:23 pm

    That was beautiful. And powerful. And disturbing. And hopeful. Thank you.

  3. Ray on August 6, 2007 at 2:25 pm

    Thank you. What else is there to say, at least initially?

  4. Mark IV on August 6, 2007 at 2:25 pm

    … human agency is intelligence’s most active ingredient. That intelligence’s depth and development, or lack thereof, is proportional to a person’s ability to create and/or perceive choices and then select the best one, all the while looking forward to the next tier of choice-making.

    I think that statement is absolutely profound. Thank you for allowing us to have this glimpse into your life.

  5. Adam Greenwood on August 6, 2007 at 2:37 pm

    stories and observations I report here in no way represent everything I think about these matters. More importantly, they don’t represent everything I will think; I’m not through turning over these events and ideas to see what else is there.

    Wise. As for the rest, you’ve said a lot, so I’ll just nibble at the peripheries a little. Your observation about your husband taking your girl to her appointments strikes a chord. The lovely one is a go-getter, so most of the time she’d do the appointments. But when we felt we weren’t being taken seriously, I’d go. The doctors felt I was more objective and more clinical, I think. And I think they were right, though being objective and clinical takes a lot of effort when its your own kid, too much energy sometimes. The lovely one never broke down in a doctor’s office, but I did.

  6. Kathryn Lynard Soper on August 6, 2007 at 3:12 pm

    Like the others, I’m floundering for words.

    Breaking through the degree of developmental delay that handicaps medicine and modern society will take some doing.

    Patricia, I’ve never heard it better put. I will be quoting you.

    You and your daughter are blessed to have each other. And all of us our blessed by virtue of reading your post. Thank you for enduring the vulnerability that comes from sharing such an intimate view of your experience.

  7. Wacky Hermit on August 6, 2007 at 3:39 pm

    Thank you for sharing this. I knew a girl (now a woman) who had severe spina bifida and was confined to a wheelchair. She could talk in a whispery voice if she raised her hand (of which she had little use other than to use it as a paddle) to cover her stoma. One year she came with us to Young Women’s Camp. Pushing the wheelchair over the sand was tough, but she sat there with us around the campfire to sing songs. Her voice was the most beautiful voice there, not because of how it sounded but because I knew how much effort it took for her song to be there. She grew into a beautiful woman who inspired all who knew her, earning a college degree and holding down a job when her parents had been told she would likely not live much past the age of 20. I had the privilege of accompanying her to the temple one time and assisting her in dressing. It was an honor I will never forget. It was like being permitted to accompany an angel. She taught us all to love by her example.

    I was raised in a perfectly normal family, with nothing more serious than type 2 diabetes running in the family. I did my share of grumbling, but I could still appreciate this girl’s voice and the great things she did. Why is it that I could be raised to appreciate the disabled, but “society” somehow can’t manage this?

    I have two sons with Asperger’s Syndrome and I watch how they struggle to do everyday things like handle changes in schedule. They need just a very little accommodation from others, mostly just understanding that I’m not going to be able to get them calm and fully under control when they’re in a strange situation, but if I tell people they have AS, all of a sudden people act like they’re on their deathbed and everything they do is permissible, when they really do need limits set. I’ve often pondered why we seem to need these diagnoses nowadays for things that 20 years ago would have been considered within the “normal” range, and I think that at least part of it is “society’s” total lack of tolerance of anything they don’t see on Oprah.

    Why is that? Are we so isolated that only Oprah can tell us what the world is like? Do we all live in small metal boxes with the TV our only window on the world?

  8. Joseph Walch on August 6, 2007 at 4:10 pm

    The world (which is often too concerned with its own mortality and tiny imperfections) desperately needs to know and understand stories like yours. What meaningful possibilities you open up to us who are so caught up in what precious little capacities we have; to see, to hear, to taste, and to feel pleasure or pain.

    You prove with your life that we are much more than receptacles for these sensory trivialities. We are actually intelligent beings who happen to be travelers in the frontier of a foreign and temporal world. Thank you for reminding me of this.

  9. Eric Russell on August 6, 2007 at 4:18 pm

    Thanks, Patricia.

  10. Emily M. on August 6, 2007 at 5:11 pm

    Wow. Thank you.

  11. William Morris on August 6, 2007 at 5:14 pm

    Yes, thanks, Patricia. Thanks for being one who is able to tell. To write. To witness.

  12. Ugly Mahana on August 6, 2007 at 6:33 pm

    Oh my. That was beautiful in the sense of joy that transcends pain. Best to you.

  13. Lorrie on August 6, 2007 at 7:00 pm

    I wish I had said this sooner. Growing up, I always thought your birthmark was one of the most beautiful things on the planet. It was distinctive, a sign of strength, and my favorite color. I was envious!

  14. Sarah on August 6, 2007 at 7:43 pm

    Thank you from me, too. I’m another facial PWS’er — I’ve found that there are a lot of older “calico” adults out there with major issues, that nearly always come from the way people treated them in public. Women ten to twenty years older than me seem far more likely than women my own age to say things like “not even my husband has seen me without makeup on.” And I have to admit, even in a supposedly more enlightened time (I escaped the “let’s tattoo them with flesh-colored ink!” fad by a margin of about ten years) that I’ve been known to use people’s reactions to my birthmark as a kind of social sieve. Any relationship that starts with “Gah, what happened to your face?!” probably isn’t going anyplace good.

    I think part of the problem that people have with severe disabilities and any kind of disfigurement is that we’re a very solutions-based people. Coping with, let alone finding joy despite of, one’s challenges just aren’t virtues that are celebrated in the general culture. On the one hand, that’s good — people whose PWS has led to serious complications have a lot more options for treatment today than they did thirty years ago, and we don’t accept 50% infant mortality rates anymore. On the other hand, once you’ve found yourself in the position of being perceived as beyond help, people become extremely uncomfortable with your continued presence. And people don’t like to be reminded of their own infirmities: I’ve seen people touch their faces as soon as they meet me for the first time, and many avoid eye contact. And I just have a birthmark! You can’t touch your powers of speech quite so easily as you can touch your cheek.

    (I hate the term “quality of life,” as it’s always used by people in circumstances in which they cannot possibly make any definitive statements on the matter, and usually in ways that strengthen arguments they already wanted to make, but on uglier and plainer grounds. It’s the kind of thing that makes me almost side with Deaf community extremists who call children getting Cochlear implants “cultural genocide.” Except, well, not.)

  15. Lupita on August 6, 2007 at 8:56 pm

    “We want you, I put to her. Do you want us? Here I am. See? Come out if you can.”

    Incredible. I don’t mean to sound presumptuous, but you should publish this. It is important that more people experience this essay than just your humble T&S readers.

  16. Marjorie Conder on August 6, 2007 at 9:16 pm

    In the time it has taken me to read this post I have thought thoughts that have never before tripped across my brain. This was a huge “ah-ha”. I think I will never see all sorts of issues the same again. Charity Never Faileth. Thank you!

  17. JEF on August 6, 2007 at 10:30 pm

    PGK, I hope you know how much many of us admire and love you because, out of your experience, you write things we need to hear. Thanks.

  18. Tatiana on August 6, 2007 at 10:46 pm

    Amazing, Patricia.

    “Then let nature, ever emergent and laden with desire, take its course.”

    You do need to publish this. Submit it to the New Yorker, Smithsonian, Scientific American, and all the doctor journals like New England Journal of Medicine. This needs to be widely read.

  19. greenfrog on August 6, 2007 at 11:16 pm

    This is the truest thing I’ve ever read at T&S: I wanted to keep my own story open. Because what the world needs, I think, is more storylines to choose from and adapt to their own circumstances, not less.

  20. Vicki on August 6, 2007 at 11:18 pm

    This is amazing. And beautiful. I also think lots and lots of people should read it.

    “I put suggestions to her for long periods of time, longer than most people probably have patience for, because that’s what you have to do with these kids: Put the matter to them again and again, and wait, sometimes for years.”

    I’m interested in hearing more about this.

  21. greenfrog on August 6, 2007 at 11:50 pm

    (also great: “physical rhetoric”)

  22. Bookslinger on August 7, 2007 at 12:04 am

    I’m reminded of Nathaniel Hawthorne’s short story “The Birthmark”.

    I’m also reminded of a beautiful sister missionary at the MTC in the spring of 1984. I didn’t get a close look at her, it was always from across the room or down the hall. Her facial features were far different and outside of the female human “norm”, to a degree that doctors might have called her face “deformed.” But I was struck by her beauty. It wasn’t until years later that I saw someone similar, one of the “beautiful alien” type characters on Star Trek TNG, with sophisticated make-up processes.

    I have a close friend who is totally blind. It isn’t that you “ignore” the difference or the so-called handicap, though you sometimes do. It’s like it’s there and it isn’t at the same time. Such a difference is just seen through a different lens. It takes a lot of familiarity to get to that point.

    I’m now reminded of a post (on FMH?) written by someone who wants to keep her C-section scar in the resurrection.

  23. William Morris on August 7, 2007 at 11:16 am

    Bookslinger:

    Thanks for the reminder of that story. I haven’t read it since my early college days.

  24. Guy C on August 7, 2007 at 1:00 pm

    Beautiful and poignant story touching on something so personal that it is immediately appealing. I agree with many posters, this should be widely published. Maybe a little mini-biography?

  25. Rosalynde Welch on August 7, 2007 at 1:02 pm

    PG, I imagine that you’ve felt a duty or some sort of urgency or compulsion to write about Teah; I’ve felt something, maybe an obligation or maybe a desire, to write about the extremities of my own life. Recently I’ve become a lot less confident that I can overcome massive, blinding bias in my efforts to know myself and my relationships, and so I’ve also become a lot less confident about what, exactly, personal writing is good for. This piece is wonderfully done, and it’s clear to me (and many others, obviously) that it’s good for something. I wonder if I can solicit your view: what is a piece like this good for?

    I think you were getting at something like the answer to that question when you wrote “Because what the world needs, I think, is more storylines to choose from and adapt to their own circumstances, not less.” What do you mean by this? Do you mean that we need (and that personal narratives can supply) what the critical theorists would call “subject positions”—more human types, more commonly recognized ways of living a fully human life? Or do you mean that we should abolish types in favor of particularity, that each person should think of his or her life as an original narrative?

  26. dangermom on August 7, 2007 at 1:26 pm

    Thank you for your lovely and moving piece. Wonderful.

  27. P. G. (Patricia) Karamesines on August 7, 2007 at 1:46 pm

    Thanks, everyone, for taking the time to read this post. I’m glad so many found reasons to think it worth the while.

    Originally, I planned to take this thing in a different direction without stepping so squarely into the middle. The discussion Kathryn Soper opened with her post “A Little Knowledge” provoked other thoughts (thank you, Kathryn, for that post–I didn’t have time to comment–I guess this post IS my comment).

    Adam: As this posts suggests, I have something of a speckled past with doctors, so when Teah’s situation came to light, I was more than primed for trouble. It was a great gift when Mark took over that angle of our efforts. I admire your doing that when necessary in the efforts you and your wife made in your daughter’s behalf.

    Kathryn, my husband suggested that “society is developmentally delayed” line, so if you use it, I guess you’ll kind of be quoting him ;). At any rate, quote away.

    Wachy Hermit said, “Why is it that I could be raised to appreciate the disabled, but ‘society’ somehow can’t manage this?”

    Well, you’re part of society, and you manage it, so maybe society can. Heh, society has managed to deal with ME for decades. That nobody decided I had the “evil eye” and buried me alive to protect the tribe from ill luck or abandoned me somewhere because the omens said I’d kill my mother and marry my father is something I’m deeply grateful for, because I’ve had a GREAT life. Nobody has anything I would take in trade for it. There’s nothing I’d do over again … except, if I’d been educated about CMV (I was told about a lot of other things and diseases to avoid), I might have been able to prevent that awful virus’s attack upon my daughter. I’ve learned wonderful things from her, but I don’t think it follows that I could only have learned them if my daughter suffered the loss of half her brain. If I could go back and change what happened to her, I would–not for my sake, though I certainly feel some joy over the prospect, but for hers. But here’s the thing: Even if there had been a vaccination for CMV that would have prevented her suffering in utero and after birth, I understand that wouldn’t have secured her health and safety; anything can happen at anytime.

    “Are we so isolated that only Oprah can tell us what the world is like? Do we all live in small metal boxes with the TV our only window on the world?”

    I’ll just bet some TV producers and TV ad executives wish that one was true! But your point about TV channelling our attention is taken. Guess those of us with compelling, truly dashing and mind-bending tales will have to compete harder.

    BTW, I think I’m seeing characters with Asperger’s becoming more and more popular on TV. Have you noticed that?

  28. P. G. (Patricia) Karamesines on August 7, 2007 at 1:52 pm

    Lorrie said, “I wish I had said this sooner. Growing up, I always thought your birthmark was one of the most beautiful things on this planet. It was distinctive, a sign of strength, and my favorite color. I was envious!”

    Hahaha! Well, you can’t have it! It’s mine! Moooommm! Lorrie wants my birthmark! Waaah!

    Thanks, Sis. And happy birthday to you today–right? Dah dah da-da dum dum, hm hm hm-hm hm hm. La la la-la … yeah. Have a good day.

  29. P. G. (Patricia) Karamesines on August 7, 2007 at 3:06 pm

    Sarah, yeah! Birthmark power! Ungh!

    I get what you’re saying about the urge to “fix” people leading to higher quality of treatment for those who really do need help. That’s a very good point. I’d like to add this to it: Better motives for helping people might just lead to better ways to provide that help.

    “Any relationship that starts with ‘Gah, what happened to your face?!’ probably isn’t going anyplace good.

    This made me laugh because it’s sooo familiar, I tend to allow people a wide margin for first impressions, because anybody whose eyes rise to my face to judge my “quality of life” will meet with that very distracting map of the world on my skin. Here’s my golden rule: Cut slack unto others as you hope slack would be cut unto you.

    “I hate the term ‘quality of life,’ as it’s always used by people in circumstances in which they cannot possibly make any definitive statements on the matter, and usually in ways that strengthen arguments they already wanted to make, but on uglier and plainer grounds. It’s the kind of thing that makes me almost side with Deaf community extremists who call children getting Cochlear implants ‘cultural genocide.’ Except, well, not.”

    “Quality of life,” as it’s popularly applied, is a phrase totally in need of debunking. But let’s not throw the baby out with the murky, awful bathwater. I can imagine fitting “Quality of life” with a new ideological engine, one meant to really move us along, and it would really take off.

    Thanks, Sarah, for commenting. Keep in touch if you’d like. You can contact me through A Motley Vision: http://www.motleyvision.org/

  30. Sheri Lynn on August 7, 2007 at 4:22 pm

    Hi. I’ve lurked here for a long, long time, and off and on, but I’m glad I read this. A neurologist told us to institutionalize and forget my high-functioning autistic son. I don\’t think I can take the credit for how well he has done since then, but nothing the man said is at all true. Anyway, Sister Karamesines, please do have this beautiful gem published, and bless you and your family. :)

    :waves at annegb, glad you’re still around:

    (Hey, I’m NOT a first-time commenter!)

  31. P. G. (Patricia) Karamesines on August 7, 2007 at 4:50 pm

    Gosh, I spent another long night last night and want to get things right:

    Thanks, Lupita, Tatiana, Guy C. and others for encouraging me to publish this. I probably will in some form or another.

    JEF: You ALWAYS gave me the chance! Thanks forever for that.

    greenfrog: I hope to see you over at Field Notes #4 when I put it up.

    Vicki: I’d like to talk to you about the long-term process of helping Mattea learn how to make choices, but it would be too long of an explanation for here. If you’d like to chat, e-mail through http://www.motleyvision.org/

    Bookslinger and Wm: the Nathaniel Hawthorne reference is an interesting one. Me, I tend to think of “The Sneetches,” by Dr. Suess.

    Rosalynde, interesting questions. If you’ll permit me some time to catch up on sleep, we’ll explore when I come back.

  32. Rosalynde Welch on August 7, 2007 at 11:26 pm

    PG, that sounds great, if/when you’re up to it. (Please feel no obligation.) I’ll be offline for a few days, but I’ll make a point of checking the thread.

  33. Stephen M (Ethesis) on August 8, 2007 at 12:02 am

    I knew a girl when I was in law school with a PWS on her face. She couldn’t understand that I and other guys in the ward thought she was beautiful. But she was.

    Anyway, memories aside, this was a moving essay. Thanks for sharing it.

  34. carole mcdonnell on August 8, 2007 at 12:20 pm

    I understand so much of what you\’re saying. Doctors are gifted at taking hope away… Bravery, persevereance and choosing not to listen to them has helped us with our son.

  35. P. G. (Patricia) Karamesines on August 9, 2007 at 10:35 am

    Thanks, all! I’m sorry I haven’t been able to keep up with comments in timely fashion. But I’ve enjoyed the discussion.

    Stephen M (Ethesis), wish I’d been in your ward! But really, the PWS hasn’t been much of a concern for me since my mid to late 20s. I only bring it up because of the insights it gave me into how easily we jump to conclusions about what’s popularly called “quality of life,” which, if anybody can remember, is what this post is actually about.

    carole mcdonnell–Sounds like you’ve been through the wringer. Of course, not all doctors are gifted at taking hope away, as you put it. Sometimes I wonder what the medical profession would be like if it tempered its relationships with pharmaceutical and insurance companies. And of course, like someone else suggested on another thread–one of Kathryn’s, I think–doctors are just people. I wish they were better than people, but, well.

  36. P. G. (Patricia) Karamesines on August 9, 2007 at 10:45 am

    Scheduled power outage in our area coming up in a few minutes. I’ll be back to wrap up this thread when power has been restored.

  37. Ray on August 9, 2007 at 11:55 am

    FWIW, I have never liked the phrase “quality of life” – simply because of the obvious implications that lives (and, hence, the people living those lives) can be ranked on a quality scale and treated differently based on that ranking. It always has seemed like the height of elitist arrogance, since the scale always is determined by someone looking down on those whose “quality of life” they perceive to be lower than their own – and since “quality” generally is defined in very secular terms.

    For example, the VAST majority of my fellow students in college came from economically privileged situations, and there were very few who came from families with 8 children, like I did. The same is true of nearly all of the high school students I taught after I graduated. I can’t tell how many times I heard variations on, “How could anyone have more kids, if that means they can’t pay for their college expenses?” I even had one student I taught (sadly a Mormon student) say in our economics class that people should not have children if they make under $25,000/year. She knew that I, her teacher, had 4 children at the time, but she had no idea that I made less than $25,000/year at the time. She simply couldn’t imagine a “quality of life” that would be worth living “in poverty” – even with a liberal definition of poverty.

    I know this doesn’t deal with medical quality of life issues, but I think it highlights the root issue – namely, how do we discuss important issues of enhancing the quality of life for those with specific challenges without devaluing them and the life they have in the process? I’m not sure it can be done without discarding the term and finding a new way to discuss it.

  38. P. G. (Patricia) Karamesines on August 9, 2007 at 7:01 pm

    Ray, #37 said, “I know this doesn’t deal with medical quality of life issues, but I think it highlights the root issue – namely, how do we discuss important issues of enhancing the quality of life for those with specific challenges without devaluing them and the life they have in the process? I’m not sure it can be done without discarding the term and finding a new way to discuss it.”

    This reminds me of something: One day it occurred to me that when one person stereotypes another, it means that the person doing the stereotyping has likewise stereotyped him or herself. This is because the problem in thinking that gives rise to stereotyping cuts both ways. It’s not the stereotyping itself that gives rise to unfair, oversimplified belief about another; its the tendency to reach for the easy idea. Anyone reaching for the easy idea in his or her thinking about others is likely to reach for the easy idea when thinking about him- or herself.

    So when the medical community or just plain folk speak of my daughter and thousands of others like her in terms of abandonment language–”can’t dos” and “will nevers”–they are also speaking about what they believe they can’t and will never do, displaying their resignation about the human condition in general. This may actually be the root issue. “Can’t do,” “Will never,” “Retarded”–this is unproductive, uncreative, unprogressive talk. It seals off, sometimes quite unintentionally, prospects for my daughter.

    But at the same time it seals off prospects for the person who uses such language, because when we talk about what somebody else can’t do, we’re actually talking about what we can’t do. Language plays an important role in opening up these narrative pathways that others have sealed off. Language and relation, that is.

    Besides, serendipity being what it is, those dedicated individuals who study problems to try to open up prospects for the extreme cases will make discoveries that will serve us all. That’s just how it works. In Mattea’s journey toward emergence, she revealed fascinating things about human consciousness. She did to me, anyway.

  39. P. G. (Patricia) Karamesines on August 9, 2007 at 7:06 pm

    # 38: “This may actually be the root issue.” This, and fear of feeling, I mean.

  40. P. G. (Patricia) Karamesines on August 9, 2007 at 10:32 pm

    Okay, Rosalynde said, in #25, “I imagine you’ve felt a duty or some sort of urgency or compulsion to write about Teah…”

    I think there’s a difference between feeling an urgency or duty etc. to write about something and feeling compelled to find the words to render what has happened into a coherent, narrative whole–i.e., to make a story of one’s life or of an incident in one’s life. The urge to “make sense” of something is powerful. I don’t feel compelled to write about Teah–in fact, I’ve been reluctant to “put her out there.” But I do feel compelled to find the language to make something of my experience with her, to come to some understanding about it.

    “Recently I’ve become a lot less confident that I can overcome massive, blinding bias in my efforts to know myself and my relationships, and so I’ve become a lot less confident about what, exactly, personal writing is good for.”

    Personal writing is good for finding the words to make something of experience. Public personal writing (like this) is good for giving others the chance to make something of your experience, something that might enable them to make something of their experiences. Also, public personal writing becomes experience in the reading of it. Especially if said writing has feeling for its audience.

    I’m not sure what you mean by “massive, blinding bias.” Sounds like you’re worried, maybe even aggravated by, the prospect of being wrong about … something. Personally, I no longer worry about this. Of course I’m wrong. Got irony? http://www.motleyvision.org/?p=222 and http://www.motleyvision.org/?p=240

    Apparently I have a lot more confidence in language than some people have. I find language to be a more than adequate boundary crosser, being bound up as it is with consciousness, a.k.a awareness.

    “I think you were getting at something like the answer to that question when you wrote ‘Because what the world needs, I think, is more storylines to choose from and adapt to their own circumstances, not less.’ What do you mean by this?”

    Barre Toelken reports the following conversation with Navajo storyteller Yellowman: “Why tell the stories? “If my children hear the stories, they will grow up to be good people, if they don’t hear them, they will turn out to be bad.” Why tell them to adults? “Through the stories everything is made possible.”

    That’s kinda what I meant, too.

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