Monthly Archives: March 2015

Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife.

After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound exam eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and that beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. Furthermore I believed, whether intuitively or superstitiously, I would lose the baby if I had an amnio. That’s because my grandma, who mothered me unlike anyone else, had four boys because her only daughter died at birth. Grandma had a negative blood type and the blood of her baby girl, her second child, was positive. At the birth of her first child, Grandma’s blood had created antibodies against his positive blood type, which remained in her body and later killed her daughter. Since the 1970s there has been a remedy for this. After each of my babies’ births, for I too have negative blood, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but only boys came. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” I saw a bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was bi-lateral cataracts. All of which left me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first days of Lyra’s life were filled with appointments: pediatricians, a geneticist, a genetics counselor, two ophthalmologists, and several lab technicians. I did not cry when Lyra’s diagnoses of Down syndrome and cataracts were explained to us, her father and I just pragmatically, if not numbly, proceeded with what we needed to do for our infant. On the weekend after Lyra’s birth, we finally stayed home. Our midwife came to check on us and during her visit my partner drolly mentioned that he had to change all the diapers while I just lazed about. After she left, I told him how embarrassed his stupid diaper joke had made me feel, how I could not believe after a week of traipsing from one specialist to another when I had just given birth that he would call me lazy, even in jest. Anger suffused with pain until hot tears rolled down my face when my rational brain stopped driving my mouth, “And I don’t even have a daughter who will want to do the things mothers and daughters do, like, like go shopping! And what about a wedding? And all those things, school, books, what will we have?”

Right then, just days after her birth, I did not know how having Down syndrome would affect Lyra and nobody could tell me because people with Down syndrome have a wide range of abilities. But only after my bubble of grief had popped open and spilled all over our bedroom could I look at the contents. First of all, what were all these sexist stereotypes I suddenly felt were taken from me? I don’t even like shopping. I’m what I call a “surgical shopper,” I’m in and out, zip-zap, going to the same stores where I know things fit my family. The idea of spending a day shopping makes me glaze over with catatonia. Why did I care about a wedding? I never thought about weddings when my four sons were born. That episode in our bedroom was the first of many installments in which I would question whether I felt a certain way or, later, if Lyra behaved a certain way because (unlike all my other children) she is a girl or because (unlike all my other children) she has Down syndrome. If Lyra had 46 chromosomes, would I have thought, shortly after her birth, about shopping and a wedding? I will never know.

What I do know is that with each newborn a family is reinvented and there is a period of adjustment for all its members. First, a couple becomes parents of an only child. If they carry on and have a second child, the family has an adult to child ratio of 1:1. Should they continue further and have three or more children, the parents are outnumbered and in a whole different league of parenting. Also, with each baby the sibling order is reconfigured. But as both our first girl and a child with multiple diagnoses, I questioned things with Lyra that I had not encountered with my previous newborns. How would having an extra chromosome affect her? How could we make sure any disadvantages or discrimination Lyra might face, as a woman with Down syndrome, not be compounded by the limitations of her vision? The truth is, we have no way of predicting the long-term significance of Down syndrome or bi-lateral cataracts on Lyra’s abilities. In some ways, that has been more unnerving than the diagnoses themselves, a sentiment echoed in one of the first books I read on Down syndrome in which a mother of an older child writes, “I wish I had worried less about who my daughter would become and enjoyed the baby she was.”

Our first two years with Lyra were as though I woke up to find myself unexpectedly enrolled in a graduate program on Down syndrome and, to a lesser degree, vision impairment. Lyra’s father and I have read (often not the same) many books, articles, and blogs on Down syndrome. We began attending different meetings of local support groups, as well as the annual conventions of the National Down Syndrome Congress, conventions that function much like academic conferences. But as a writer, I process life by writing. So, when Lyra was three months old, I began a blog about our entire family, with Lyra as the inevitable focus of most essays. There are now more than fifty of these essays and when I read back I see not just a record of Lyra’s first years, but also my own evolution in understanding Down syndrome.

In one of the first essays, I describe learning about Lyra’s diagnoses and, while we loved her immediately and perhaps with even more ferocity than with our other children, feeling unsettled about how her diagnoses, especially her Down syndrome, would manifest. Months later, I re-read that essay and cringed at two terms I had used, one of which I promptly removed. It was the word “healthy,” which I had used to describe what I had wanted my daughter, in fact all my children, to be. Webster’s defines healthy as “enjoying health and vigor,” with “ill” as the antonym. Webster’s also defines health as “the condition of being sound in body,” with the antonym of “illness.” It is true that anywhere from 40% to 60% of children born with Down syndrome also have heart disease, ranging from holes that close on their own to multiple, severe defects, and we have known far too many children Lyra’s age who have died in their third year of life due to heart conditions. But most children with Down syndrome who have heart disease do not die and instead their hearts are permanently repaired either naturally or surgically. Fortunately for us, the pediatric cardiologist who performed Lyra’s fetal echocardiogram was correct: Lyra’s heart is beautiful and beautiful is better than good. She had a post-natal echocardiogram that once again revealed a perfectly healthy heart.

The other term I cringed at, but left in that early essay, was “milder symptoms,” which I had used to describe what I wished for Lyra. “Milder symptoms” is a legacy of the terms “mildly retarded” and “severely retarded,” both of which were commonly used to discuss people with Down syndrome when I was growing up in the 1970s. Rather than remove the words “milder symptoms” I left them as an example, which I discuss in a separate essay, of how the language regarding Down syndrome has changed rapidly in my lifetime, paralleling all the other changes surrounding the housing, health care, education and integration of people with Down syndrome. In the past twenty years, the word “retarded” has been deemed derogatory in any context. The same needs to happen to the words milder/mildly and severe/severely, comparative words that are routinely assigned to the symptoms of illness including fever, pain, nausea, and rashes (just look to the previous paragraph for an example). They are also used to describe outbreaks such as the annual flu and epidemics of disease. But having a mild or severe case of an extra chromosome is akin to having a mild or severe case of pregnancy. You either do or you don’t; you either are or you aren’t. There is no degree of Down syndrome, just a wide range of abilities exhibited by people with three twenty-first chromosomes. And really, how is that any different than the wide range of abilities exhibited in the population with two twenty-first chromosomes, i.e., “typical” people?

Yes, my daughter has an extra twenty-first chromosome, which certainly has causal impact on who she is, but my daughter is not ill; she is one of the most robustly healthy children I know. At two-and-a-half years of age, Lyra had never needed antibiotics, never had an ear infection, though she had contracted a reasonable number of snotty-nosed colds. She eats, sleeps and energetically plays. When left to her own devices for even a minute, Lyra gets into cupboards, the dog water bowl and, her personal favorite, the bag of paper to be recycled. Just like any toddler. Furthermore, the Ohio government does not consider Down syndrome to be an illness. Since birth, Lyra has had six eye operations (three on each eye). She wears highly specialized contact lenses (charitably made by Bausch + Lomb who make no profit on her rare lenses) for aphakia, or eyes without natural lenses. Her natural lenses were removed when she was six weeks old to eliminate the cataracts and allow her brain to develop as a sighted person. She sees an ophthalmologist on a regular basis and presumably will do so for the entirety of her life. The Ohio Bureau of Children with Medical Handicaps (BCMH) has helped us with the costs related to Lyra’s vision, but they do not cover any expenses related to Lyra’s Down syndrome specifically because it is a condition that can be remediated with interventions. While I can argue that it is in the state’s best interest to insure that early interventions for children Down syndrome, including physical, occupational and speech therapies, occur regularly and with accredited providers, the state has categorized Down syndrome as a disability, not an illness. While they do provide modest, at-home interventions in the first three years of a child’s life, the state primarily uses the public school system to provide services to children with Down syndrome up to the age of twenty-two.

Re-reading what I wrote two years ago, I see the subtle belief I held that Down syndrome was in essence a form of illness, a false belief that is pervasively held. While undeniably used to withhold the status of full humanity to both men and women, the false application of illness has a particularly misogynistic history. Certainly as far back as the Victorian era, illness has been used to depict an idealized form of an adult female. The consumptive woman with luminously pale skin shown reclining, her limp body nearly lifeless, was a mainstay of fin de siècle art and literature. How better to deny full humanity to half of the population than to enlist its complicity to behave as wan and powerless beings in order to attract the other, dominate, half of the population? Nor did that misogynistic cultural norm disappear as each and every wave of feminism washed over society. Like racism, today misogyny is often hidden from open conversation and behavior, only to be expressed in subtler ways. Seeing Lyra’s full humanity requires overcoming not just perceived medical limitations, but deeply rooted social and cultural perceptions too.

If Lyra is not ill, what is she? In the past two generations, children with Down syndrome are experiencing previously unknown levels of intervention, education and rich social lives. This has resulted in an explosion of new statistics. One of the most dramatic is that life expectancy has increased in the past thirty years from 25 to 61 (and continues to rise). Meanwhile, life for people with Down syndrome is radically different than it was in the 1970s. Today, children with Down syndrome go to school, graduate, and some continue on to college or other post-secondary programs. Many adults with Down syndrome are successfully employed, an ever-increasing number are getting married and even, the most surprising to me, driving cars. Living independently as an adult with Down syndrome is now the norm, not the exception.

IMG_1954So are people with Down syndrome different from the rest of us with just 46 chromosomes? Yes, and no. What I have observed in my own child, who is two-and-a-half years old at this writing, is her development is delayed, but in consistent measure. Due to hypotonia, or low muscle tone, a hallmark condition of Down syndrome that is entirely unrelated to cognitive function, Lyra first sat up when she was ten months old. Her brothers all sat up at about six months. She also crawled, and later walked, when she was a year older than her brothers when they achieved these milestones. Hypotonia can also affect the muscles of the mouth. Not unlike trying to speak after being shot up with Novocain, so too can the speech of some people with Down syndrome be harder to understand. And because people commonly assume that poorly articulated speech signifies low cognitive function, it is important to us that Lyra work with a speech therapist, which she has done since she was three months old. An extroverted child who loves to talk, everyone in our family understands Lyra’s speech while other people understand most of what she says, which, again, is little different than most two-year-olds. As Lyra has acquired, one-by-one, the basic skills of living, my fears about my daughter’s abilities have, in equal measure, begun to dissipate. With time, I have come to see that she will get there—“there” being a fully autonomous person—at her own pace, but she will get there.

Yet no matter the successes of Lyra and others liker her, she lives in a society that overwhelmingly treats Down syndrome as an illness, which many people believe should be avoided at all costs. The pervasiveness of this false belief was driven home in the summer of 2014 when evolutionary biologist and ethicist Richard Dawkins tweeted his response to a mother who had asked him what he thought she should do if she discovered the baby she was carrying had Down syndrome: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He later defended his tweet by saying to do so would avoid suffering, revealing his utter lack of knowledge about Down syndrome. Clearly Dawkins not only sees Down syndrome as an illness, but he holds the view that people who have an extra twenty-first chromosome are less than fully human. Exposing the tremendous amount of work that needs to be done to educate, well, basically the world. For if an eminent researcher like Richard Dawkins is unaware of the scientific evidence regarding Down syndrome, it troubles me to think what is required to disseminate these facts within the general population.

And, yet, Dawkins’ ignorant tweet was a gift. The response was thunderous and substantial and, as a result, the controversy that ensued reached people who previously knew little or nothing about Down syndrome. Op-ed pieces appeared in newspapers and bloggers wrote about “The Down Syndrome Advantage,” a phrase coined to describe not anecdotal stories, but the scientific evidence regarding Down syndrome, including the following facts:

  • The divorce rate in families with a child with Down syndrome is lower than in families with a child with other congenital abnormalities and in those with a non-disabled child.
  • In a sibling study, 88 percent of the respondents reported feeling that they themselves were better people for having siblings with Down syndrome.
  • Researchers have found that people with Down syndrome have significantly higher “adaptive” skills than their low I.Q. scores might suggest.
  • 99 percent of people surveyed with Down syndrome (284 respondents), including people who are categorized as “medically fragile,” stated that they were personally happy with their own lives.
  • 96 percent of people surveyed with Down syndrome liked the way they looked.

Before I had Lyra, there were things I planned to do if I ever had a daughter. Unlike my own upbringing, which implicitly stressed marrying a financially successful man over all other considerations, I would urge my daughter to find a career path that brought her joy, a sense of fulfillment and financial security. That making a commitment to someone who is financially successful is fine so long as that person truly loves her and makes her happy. To never let someone tell her she could not do something she wanted to do because she is female. That true beauty is derived from respecting and nourishing our bodies, minds and spirits and not to let anything cripple any part of her beautiful being.

The realization I have come to since the early days after Lyra’s birth is that her diagnoses need not change how I have long planned to raise a daughter because there is little, if anything, that Lyra will not be able to do or have simply because she has an extra twenty-first chromosome. What needs to change is the pervasive and radically false notions about Down syndrome that prevent my daughter, and others with Down syndrome, from being treated as fully human.

Hiking, Dogs, and Fading Angels

“Oh, Lily, someone else is in our park!” I told my bi-black sheltie after a woman attempting to jog on the icy path startled me from my thoughts. Winter’s grip is finally weakening here in northern Ohio, evidenced by emerging populations. Last week I was awakened by the cheer-eeee of a red-winged blackbird announcing his return, causing me to smile before opening my eyes. Later that day, I did not smile at all as I saw ribbons of tiny ants marching on our kitchen countertops and around the trashcan. The Ant Spring Ball occurring inside our dishwasher was abruptly concluded with what must have seemed to the participants like a previously unpredicted tsunami.

10926241_10152923121570660_93094696278365792_oAnd now the humans have returned to our park. My life thus far contains two constants: hiking and dogs. Our side of Akron is nestled into an expansive county park system that rolls into the even larger Cuyahoga Valley National Park. I have several favorite trails I hike a couple of times a year, including those in O’Neil and Hampton Woods, but day in and day out, I hit the same trail in the same park. And for the better part of three months, when the temperatures are well below freezing, I rarely see another person on the trail, which I curmudgeonly feel is my reward for being undeterred by the cold or as the Germans say, “There is no bad weather, only bad clothing.” A forest muffled by deep snow where even the animals are quiet is a stark reprieve from the sensory clutter of modern life.

I am not as good at getting my butt on my meditation cushion each day as I am at getting my feet on the trail. In sitting meditation the focus is on the breath, training the mind to stay put, both in the moment and in the room, with the practioner. On the cushion, my mind wanders and bolts like a feral mustang refusing to be captured. And while not exactly a trained Clydesdale when hiking, repeating the same steps on the same path over and over I observe the same plants, the same ravines, the same coves and, thus, notice the slightest changes. Lately, I’ve been working on a list of things to stop beating myself up about. One is my poor attendance on the cushion. Instead of I really should sit everyday for at least 15 minutes I now think I am cultivating my mindfulness training with each step I take on my hikes. Check. And carry on.

As I hike the same path, most days I am preoccupied with things that have happened or things I need to do. Somewhere along the way, however, the chatter in my head often stops, if only briefly. Creatures capture my attention, be they large deer springing up the hillside, their white tails bopping with each leap, worms coating the leaves after a fall rain or those intrepid little spiders on the vast slicks of ice. And for a moment, I am in the moment. And that is all there is.

The first two months of this year, the mercury never rose above freezing. Each of the many deliveries of snow was stacked upon the previous one. I start my hikes by crossing an open field, which was easier when I could find my boot prints from the previous day. But many times either new snow had filled up my prints or the wind had covered them over. Like walking through wet concrete, trailblazing in knee-deep snow is hard work. “Yeah, but you get a better work out,” I’d hear in my head. It was the voice of my eldest son, Claude, a distance runner, who accordingly dismissed my complaints on a hike several winters ago.

Fading AngelsOn the weekends, Max joins me and my hikes are different because we talk. But as the snow grew deeper and deeper, the trail narrowed like a river valley, forcing us to march one-by-one and speak less. In late January, in the middle of the open field, Max stopped, turned and threw himself back onto the soft, fresh snow. Sliding his arms up and down and his legs in and out, he made a snow angel. With temperatures struggling to reach 20 degrees, his snow angel lasted for weeks. Every few days I photographed the outline as it became muted, while the peaks pushed up by his arm movements rounded into what looked like the globes of a soft bosom. When most sections of the angel’s outline finally disappeared, only I recognized the few remaining ripples in the otherwise flat snowscape as lingering evidence of my man’s body.

Yesterday, the fourth day in of our first thaw in months, the snow had compressed down in the daily melt, which then hardened into ice at night. But as I had all winter, before starting my hike, I slipped over the soles of my boots the unfortunately named “crampons.” A slipper’s skeleton made of silicon, crampons suddenly make any shoe or boot like the adult punch at a holiday party: spiked. Helpful all winter, right now they are essential. Without them, going down the ice-slick hills would be dangerous while going up them would be impossible. And yet, ice be damned, spring is certainly coming for the spiders have joined me, as they always do in early spring, on the frozen trail, their dark, spindly bodies high-contrast and out of context on the snow banks. I wonder where they erupt from as the ground is still seemingly sealed in the white snow and grey ice as though restricting for just a little bit longer the advent of mud season, when I will also need my crampons to keep from sliding into ravines.

I used to bring both our shelties, Hoover and Lily, with me on my hikes, but stopped the year we moved into our house. It was a wet summer and the long hair of the dogs, who resemble small collies, would get so muddy I had to bathe them, or at least hose them off, when we got home. Besides, at about an acre, our back yard is big enough that the dogs seemed to get plenty of exercise chasing each other and the squirrels. Then this past November Hoover nearly died from pancreatitis and though, at nearly 14 years old, his recovery was remarkable (thank you Metropolitan Veterinary Hospital), Hoover’s energy has not fully returned. He has instead slid into his old dog days, preferring sleep to all else other than food and affection. While that’s fine for Hoover, Lily is only four and not at all interested in a geriatric lifestyle. And so Lily has joined me and for the better part of the past three months, and on most days she and I have had the park all to ourselves. For Hoover’s sake, I sneak Lily into the car, which is not terribly hard. The silver lining of Hoover’s now near-complete deafness is that he does not hear me call for Lily when we leave, so there are no hard feelings.

Before Lily, there was Greta, a shepherd mix who loved best of all long hikes. Unlike the shelties, Greta hunted on our hikes. When she was young, she could pick off a squirrel or chipmunk running up the side of a tree and shake it dead before I could even holler for her to stop. Even when she was past her prime and no longer a rodent-killing machine, Greta followed along on hikes, darting after creatures then returning to me over and again. As the years passed, our hikes became walks as Greta moved more slowly. At the end of my daily hike is a steep hill and one summer as I slowly made my way up I noticed only Hoover was with me. Turning to call her, I saw that Greta had lain down on the trail a good 25 yards behind me. I called her and she looked at me. She was a smart dog and if you have ever had a truly smart dog, you know they look at you differently than other dogs do; they look at you knowingly. I hiked down to Greta and helped her up. She ambled a few paces before dropping back to the ground. Not as heavy as she’d been in her prime, she was still easily 40 pounds. I picked her up like a calf, my arms around the tops of her four legs, her body on my chest. I walked as far as I could and set her down, she walked as far as she could and then I picked her back up. We repeated our turns until we crested the hill. Though she lived another year that was her last big hike. From then on, Hoover alone went with me. And now he is the old one, staying home on his bed in the kitchen, happy in the warm fray of the family.

While spring, of all seasons, heralds birth and beginnings, death never withdraws. For one thing, as the temperatures rise and the snow melts, all the carcasses created in the winter thaw too, a dog’s delight. Until Greta was so old she no longer darted off, I kept her on leash for weeks after the big thaw began, lest she come back smelling of carrion. People also die and on the second day of spring a few years back when the peepers were in high concert season, I received a text message that a friend had succumbed to cancer the day before. The death of that friend, whose youngest children are twins just three years older than Claude, seems to be the first of many people around my age to die at the hand of the Emperor of All Maladies. Tomorrow my son Jules, who is fourteen, and I will be attending the funeral of a classmate’s mother, the second parent in his small Waldorf class to die of cancer. His classmate is the oldest of five children. As a Buddhist, I have no god to rail against for the existence of cancer and its affliction of people who have so much life left to live. And even if I did, what would that change?