Warning: To write this post, Iâ€™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 donâ€™t represent everything I will think; Iâ€™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 lifeâ€™s been like is impossible for a blog post. Furthermore, Iâ€™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 Iâ€™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 doctorsâ€™ 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. Sheâ€™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 wonâ€™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 Matteaâ€™s challenges came to light, medical professionals waved the â€œquality of lifeâ€ banner before us, not just in reference to Matteaâ€™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 â€œdeath with dignityâ€ and other catchphrases, â€œquality of lifeâ€ 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: â€œBe all that you can be.â€ â€œItâ€™s the real thing.â€ And how about those tripartite mottos: â€œEin Volk! Ein Reich! Ein Fuhrer!â€
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 somethingâ€”say, a product or idea or even a planned communityâ€”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 crookâ€™s proclivities and double as marks of societyâ€™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, â€œThis is ours.â€ But in the case of stigmatizing, branding announces, â€œThis is not oursâ€ or â€œYou are not one of us.â€
When doctors applied â€œquality of lifeâ€ 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 â€œneeding a host of interventionsâ€ talk rendered that judgment hard to misinterpret. Now we belonged to the medical communityâ€”and, we didnâ€™t belong, because we presented scores of problems it didnâ€™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, Iâ€™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 aâ€”talk about a loaded wordâ€”â€œstigmaâ€; truly impressive birthmarks like the one I sport are called port wine stains. â€œStainâ€â€”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 â€œself-esteemâ€ 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. Iâ€™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 somethingâ€”anything.
Nearly every doctor I saw for concerns unrelated to birthmarks, including routine checkups, asked me The Question: â€œDoes that thing inhibit your social life?â€ For years The Question baffled then bored me, till one unfortunate doctor asked it on a day I felt feisty. I said, â€œMm, 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.â€ He lurched back in his seat then said, â€œThatâ€™s not fair!â€
Outside of a few side-trips into personal experiments, Iâ€™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, â€œI know how you can get rid of that thing.â€ A woman Iâ€™d never met pulled her car alongside me as I walked down Provoâ€™s University Avenue. â€œGet in,â€ 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 Iâ€™m still not sure what that was all about. Another stranger stopped me as I strolled through a park with my children. â€œI have a friend like you,â€ he said. â€œHe wonâ€™t leave his house because heâ€™s afraid of what others will do.â€ A dermatologist I consulted about a rash on my arms ignored my arms completely. Without so much as a â€œMay I?â€ he went straight for the PWS, tipping my head this way and that. â€œToo bad we donâ€™t have a program going right now or we could get that taken care of for free,â€ he said. A professor told me once, â€œI donâ€™t know what to do when I get a student like you in my class.â€ As my thoughts fumbled to understand what he meant by â€œa student like you,â€ he added, â€œI tend to condescend to them.â€
This is a Whitmanâ€™s Sampler of my adventures. I donâ€™t tell these stories to persecute but to demonstrate the quickness with which we (myself included) rush to judgment about other peoplesâ€™ (and sometimes our own) quality of life. Plenty of people assumed that I suffered, that I was miserable and that I must be â€¦ well, the polite word for it is â€œunintelligent.â€ Miserable? Self-esteem is a non-issue; I donâ€™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 Iâ€™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 couldnâ€™t name. Over the last decade Iâ€™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 Matteaâ€™s birth, the PWS took on a more general role as my colorful, hard to miss argument against leaps to judgment about other peoplesâ€™ quality of life, though youâ€™d have to hang around me a while to see how that works.
Over the course of Matteaâ€™s frequent doctor and specialist consultations, the professional rhetoric changed from â€œSheâ€™s blind, deaf, quadriplegicâ€ and the compelling â€œSheâ€™ll never â€¦â€ mantra to â€œWow, we donâ€™t know what youâ€™re doing, but keep doing it.â€
What did I do? I donâ€™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, Iâ€™d gotten plenty of ideas about intelligence. That it wasnâ€™t as bound by physiology as I had been taught. That human agency is intelligenceâ€™s most active ingredient. That intelligenceâ€™s depth and development, or lack thereof, is proportional to a personâ€™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 Matteaâ€™s head circumference curve flattened, the doctorâ€™s assertion that â€œThereâ€™s a direct correspondence between head size and intelligenceâ€ and his â€œseverely developmentally delayedâ€ speeches didnâ€™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 thatâ€™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 wasnâ€™t sure she would, but she did; then my confinement lightened. Despite our doctorâ€™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 donâ€™t sing well. When youâ€™re trapped by a cave-in, like Mattea was, aesthetic excellence abides in the quality of the singerâ€™s desire to reach you. I read to her as well; Iâ€™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.
Slowlyâ€”and, if we are to believe the doctors, against all oddsâ€”Mattea emerged, blinking, into the light, accomplishing far more than her doctors thought possible. This isnâ€™t a fairytale, though. Iâ€™m painfully aware Mattea hasnâ€™t achieved fullness of potential. Part of the reason she hasnâ€™t is that years of sleep deprivation and stress can drain your personal reservoirs so you arenâ€™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 weâ€™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 husbandâ€”he could use a little R&R on a Caribbean island, but he stepped up and solved many of Matteaâ€™s difficulties, like the severe reflux problem she suffered with for years. He took Mattea to most of her doctorâ€™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 scienceâ€”and on the more intimate level, the childrenâ€™s family membersâ€”to explore the boundaries of whatâ€™s possible and enter the creative whirlwinds that can carry them up and over. But apparently, society at large hasnâ€™t developed enough consciousness itself yet to be able to look at someone like Mattea, say, â€œWow, cool, letâ€™s see what she can tell us,â€ 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.