Failure to thrive

I suppose it was inevitable. Sharifo’s baby died, after a year of barely staying alive. The baby underwent three surgeries for a congenital heart defect, and then spent most of his life in the neonatal critical care unit at Children’s Hospital. In the first ten months of his life, the baby had the best medical care available, yet failed to thrive.

When I first met Sharifo a few weeks ago, she told me about her "American baby," the son who had been born in the United States. I commented that she knew a lot of English for someone who hadn't taken classes, and she let me know that she had learned much of her English in the hospital. How foreign that hospital must have seemed to her with its bright lights, incubators, machines and alarms. Sharifo herself is Somali Bantu , a group that had little exposure or access to technology before relocating to the United States.

On that late afternoon, sitting in Sharifo’s cluttered living room a few weeks ago, I noticed an African straw mat placed under the circa 1975 coffee table, the torn window screen, sheets covering the windows and sofas, and a small hospital crib in the corner. Next to the crib there was an IV stand with digital controls; two green oxygen canisters had been haphazardly shoved under a chair. Sharifo knew how to change the IV, how to change the dressings on her son’s surgical incisions, and how to swap out the oxygen bottles. She was a long, long way from a mud hut in an impossibly dusty refugee camp in Kenya.

Sharifo told me that her son often needed to be rushed to the hospital when his condition became unstable. Despite the fact that she has three other children, Sharifo spent night after night at her son’s side. She had hope. The very nature of the hospital, the technology, and the doctors and nurses who doggedly worked to keep the baby alive all gave Sharifo the impression that her son would undoubtedly survive and live to be a healthy child.

The reality is that had Sharifo’s son been born in either the Dadaab or Kakuma refugee camps—Sharifo’s home prior to living in the States—the baby would have died within days of being born. Sharifo knew that, and while seeing the centuries of difference in the kind of care available, she had no reason to believe that this baby, the one born in the US, would not respond to the doctors, the technology, and the vast sums of money being focused on her son.

What must it be like to believe you are functioning within a world of hope and possibility, to think that you have no reason to doubt these educated people and their technology, only to find out that the outcome, although protracted, is no different than it would have been on a dusty plain in Kenya? I cannot fathom the depth of Sharifo’s sense of loss, her grief, and her profound disappointment in a situation that showed such promise.

Sharifo is not alone. The Bantu community has rallied around her, filling her house with love, support, and comfort. In Bantu culture, there are no visiting hours; community members come and they stay in the house for days, physically filling the space so the grief can be absorbed among many, and not allowed to grow to fill the empty places of a quiet house.

Sharifo and her family have no money. Sharifo was never able to work because she had small children and then the son who was so sick. Her husband works, but doesn’t really make enough to support the family. They live in public housing and make the most of what little public assistance they receive. Who will pay for the funeral? Where will the baby be buried? Do Sharifo and her husband understand the death practices that are the cultural norm in this country?

It breaks my heart to know that Sharifo—so focused, so tired, and so hopeful about her son—has suffered this loss. I know that the other Bantu families will do what they can to soothe her grief. Still, how do you move on after you’ve lost your home, your homeland, a big piece of your culture, and then the most precious thing of all, the child who you had hoped would be the start of your family’s second generation—a new life within your new life?

I cannot imagine.

The conundrum of emotional independence

In the course of managing my illness, I had to make some difficult choices about restructuring the relationships in my life. Some relationships I kept because they were fulfilling and enriching; others had become if not stale, then definitely more of a habit than an actual friendship. When you have a limited amount of energy and focus available to you, you need to cull from your life the things that no longer enhance that energy.

I do not regret my decision to trim down the number of people in my life. It was a healthy and necessary decision. In addition, I’ve also found it necessary to dramatically cut back on how much interaction I have with coworkers and other peripheral people in my life. I can’t pretend that these are true friendships anymore. My doctor once told me that friends are friends and coworkers are coworkers, and it would benefit me to not confuse the two. In other words, the friendships you have at work are actually nothing more than surface relationships, and to go further, you run a hazardous risk of exposing your most personal secrets in a much more public arena.

Again, it’s OK. I am comfortable enough with myself that I don’t need to validate my worth by way of the number of people who are close to me or vice versa. Here’s the thing, though. When you partition off the different parts of your life with such severity, it becomes hard to talk to anyone at all. If I tell you about my sleepy weekend or mention that I have blood work scheduled for today, you’ll probably want to know the details, but I’m not comfortable talking about more.

I’m a good listener, but hard-pressed lately to feign interest in people with whom I have no real emotional connection. That kind of relationship should be a two-way arrangement, but I’ve found that very, very few people are willing to give as they get.

I am lonely and I feel emotionally isolated. I have nobody to talk to anymore. I have no right to complain, I understand that. This is a situation I created around myself when I fired my former friends; now, I have to live with the consequences. Since I’m not interested in finding new friends, there seems to be no solution.

All too often, we only skim the surface of people. The surface is safe. Superficiality entails no risk, be it emotional or in challenging thought. If you really go deep with people, you might be exposed to ideas and realities that are just too intimidating and uncomfortable to cozy up to. I’m not willing to go either way on that two-way street right now. Not only can’t you come in (although I’m sure you weren’t planning to try), I can’t listen to you, either, if it means I might have to expose myself in the process.

Is there a solution to this conundrum? If I stop talking, can I stop feeling, as well? I think that’s the only way this is going to work for me. If I can eliminate emotion from myself, then I won’t have anything left to say beyond facts—information, nothing more. Actually, a lack of mood, a lack of emotion would take care of a whole pile of life’s snags for me.

Mr. Spock. Data. Witty, insightful...emotionally unendowed. Perfect.

Suicide may or may not be painless, but if it's not yours, stay out of it

Have you ever reached a point in your life where you felt like the only reasonable option for you was to end your life? Maybe it was a wisp of a thought, flitting through a troubled mind; maybe you were truly desperate. Then again, maybe you realized that killing yourself was not only possible, but just one of several viable and completely valid avenues available to you.

We are culturally programmed to find the very thought of suicide--our or anyone else's--abhorrent. For some, the stigma is enough to hold off from committing suicide. For others, religious conviction keeps the desire in check. Then there are the 30,000 Americans per year who go ahead and get it over with. Who are we to argue about that extremely personal choice? For the past couple of years, thoughts of my own possible suicide have come and gone with unnerving frequency. I have spent countless hours trying to understand the psychological and biological factors that cause these thoughts, as well as the things that keep the impulse contained. At the end of all of my reading and questioning, I learned that the decision is ultimately a choice to end unbearable pain or to avoid a future of hopelessness or suffering. Why anyone thinks that these feelings are so invalid that they have the right to interfere with another person's end-of-life decisions is a mystery to me.

Several years ago, a coworker lost his wife in a tragic car accident. My coworker's son had been at the wheel, and in a split-second of poor judgment, he made what turned out to be a fatal left turn at an intersection. My coworker's wife was killed instantly, and my coworker himself was seriously injured, his body a collection of shattered bones and bruised organs. The driver, the son, had no physical injuries, but the psychological trauma caused him to suffer without relief until just a few days ago. After years of unmitigated guilt, loss, and emotional devastation, he reached his breaking point and took his own life. Having been strong in his conviction, he made sure to do it right on the first try. At work, everyone was shocked and deeply rattled, deeming this event a tragedy, a tragedy of the worst kind. I'm inclined not to agree. My coworker--the father of the young man who died--is suffering this loss terribly, and that is understandable. Still, his son was obviously not recovering from the accident, even years later. Where were all of the people who are now mourning him? Why did they feel he needed to be strong and move forward, yet nobody was there to comfort him along the way? Why is it considered the right thing to "live with what you did," but so wrong to die when that very event causes intolerable emotional pain? America hates a quitter is my take on this paradox.

When my coworker's wife died in the car accident, there were cards, phone calls, cooking, and a barrage of condolences for the surviving members of the family. This time, people have been avoiding my coworker with their eyes downcast, mumbling mundane greetings as they hurry by in the hall. It's as if people perceive a suicide as a shameful act even more than a tragic one. They whisper about it as if the young man died while engaged in a sordid activity. Death is death. There is no shame in death. I'll concede tragedy, maybe. Kids get killed by drunk drivers, innocents are murdered, a baby falls from a balcony; that's tragedy. Death is inevitable and has many causes. Suicide is only one of them, and it is a decision, a personal choice, no different than the cancer patient who forgoes treatment, or the heavy smoker who gets lung cancer, or the morbidly obese man who just keeps rolling on his bed, eating and waiting for congestive heart failure to claim him at last. Unhealthy choices, yes. Shameful? No. The end of something unpleasant? What's the problem with that? Why would you have us stay alive with no end to the suffering? What's the benefit?

I don't think there's anything wrong with a person who makes a conscious choice to stop the madness and pain in his or her life. I would be furious and flat-out hostile if someone interrupted me that way. Suicide ideation, planning, or completion do not necessarily indicate the presence of severe mental illness. That's an arrogant and irrational assumption based on one's views about their own preferences for end-of-life decisions. Being comfortable with death--even welcoming it--may show an inner peace and wisdom that most people can't understand. Probably because they shut down at the mere mention of death and because they can't imagine their own demise, they assume you are mistaken in planning for your own.

Can 30,000 Americans per year all be wrong and irrational?

But it’s not all in my head

How many ways do you know to say that someone is mentally ill? Crazy. Whacko. Nuts. Nut job. Loony. Bonkers. Batty. Cracked. Cuckoo. Demented. Deranged. Insane. Mental. Unbalanced. Mad. Psycho. Unhinged. To name a few.

How many ways do you say that someone has diabetes? How about to say that someone has epilepsy? Lupus? Arthritis? Cerebral palsy? Psoriasis? Asthma?

I detest the term mental illness. It is filled not only with stigma, but with the implication that no matter what a person’s symptoms, the MI diagnosis immediately negates any credibility of the person having an actual illness. Why have we semantically and culturally separated illness into two classes, one containing conditions of so-called legitimate health and the other being a collection of maladies considered to be shameful, willful, and self-induced?

Most mental illness is very much biological in nature; a clear genetic link also exists in many cases. Yet, if you say that diabetes runs in your family, you are likely to be met with a response that embodies sympathy and concern. Try the same approach with schizophrenia or bipolar disorder, and the recipient of that news is more likely to be horrified than anything else. It is a type of cultural cooties best kept to ourselves.

If you tell someone you are very sick with a neurological disorder, as I often do, you will probably have the opportunity to answer plenty of questions about brain function and malfunction, medications, lifestyle implications, and more. If you change it up and say you are very ill with a brain malfunction and then continue on and say you have bipolar disorder, get ready for the eye roll and shrug accompanied by, “Oh, is that all? I thought you were actually sick.”

Comedian Richard Jeni died recently. It was no secret that he committed suicide as his family was very frank about releasing this fact to the public. His parents wanted people to know that their son had suffered terribly and that they were not ashamed of his death. Instead, they saw it as the tragic result of treatment that didn’t work—at least, not fast enough. This week, for whatever reason, the coroner’s report came out. Jeni blew half his head off with a gun. The cause of death seemed pretty obvious. Still, the report was made public, and on CNN’s Website, the headline read simply, “Jeni had severe mental illness.” As if that just explains everything. That’s all you need to know. He was mentally ill, so he killed himself.

What if they had said, “Jeni suffered from chronic illness and could no longer tolerate the symptoms and depression it caused.” No such semantic finesse happened anywhere in the press in this case. There is no drama in illness, but the underlying implications of mental illness are fraught with sordidness. We mentally ill are sordid people.

We are second-class citizens in the health world. Insurance companies don’t feel they need to treat us (lack of mental health care parity is just an extra slap in the face). Employers have no impetus to cut us any slack or make accommodation. Culturally, it is perfectly OK to mock us. Mental illness is the stuff of sitcoms and stand-up routines, shocking news reports, and Law and Order-type dramas.

Why are those of us who have “mental” illness held to a different level of behavioral accountability than someone who, for example, suffers from an insulin reaction that causes erratic behavior? A couple of weeks ago, a man was kicked off of an Amtrak train in a rural area. He was disoriented and talking to himself. The conductors concluded he must be drunk or on drugs, and they removed him from the train. The outcry was swift when the story hit the press. “That poor man! He is diabetic! How could you?”

I wonder if the compassionate reaction would have been the same had the man had bipolar disorder or schizophrenia as his diagnosis instead.

I am not crazy, whacko, nuts, a nut job, loony, bonkers, batty, cracked, cuckoo, demented, deranged, insane, mental, unbalanced, mad, psycho, or unhinged. I am ill and I did nothing to cause my condition.

I can’t control the short circuits and chemical mix-ups in my brain, desperately as I wish I could. I didn’t ask to have BP, and I’ve certainly learned firsthand how awful and insidious an illness it is. It is doubly cruel in that it affects me with both physical limitations and cognitive/behavioral ones, as well.

I propose that we eradicate the term “mental illness” from all languages. I have an illness, plain and simple. It requires medication and lifestyle changes if it is to be managed. It is not a defect of thinking; it is a malfunction of the brain.

I vote for Neurobehavioral Illness.

Bliss

Refugee kids are amazing. They come here with their parents after living in dangerous and often squalid conditions, and then, without missing a beat, they thrive. Their parents struggle with the cultural and lifestyle adjustments, but the kids hit the ground running.

Yesterday I had an appointment to meet with a Somali Bantu woman who had requested help learning English. The volunteer tutor and I arrived at about 5:30 only to find that Sharifo, the student, wasn’t home.

Sharifo and her family live in the projects. I suppose the politically correct term is “public housing,” but that’s just semantics. The complex is a sprawling maze of brick-front, two-story units, ten homes to a block. There used to be grass on the front lawn, but it has, for the most part, given up its struggle to grow. Too many feet stray from the sidewalk, and too many children run across the dusty patches of gravelly soil.

While the volunteer and I stood at Sharifo’s door, children playing on the swing set next door stared at us. Eventually, three Somali kids—all under the age of ten—came over to investigate.

“He’s not home,” a waif-thin girl of about declared. “He’s not here now.”

I told her I was looking for a “she,” for Sharifo. A boy of about six piped up, “Maybe she’s, um, she’s down there.” He pointed down the impossibly long row of identical units. He may have been indicating that Sharifo was on the next block, but he couldn’t remember which house he was talking about. He tilted his head and rolled his eyes back. His eyes came forward again, but his lids remained at half-mast. “Buddy,” I said, “You look drunk.”

The tutor laughed nervously, and the boy grabbed her hand and pulled himself against her. “Why are you here?” he asked her.

“I’m here to help Sharifo learn English, but she’s not home.”

The oldest girl leaned across from the front stoop and poked her hand through the torn and disconnected window screen of Sharifo’s front room window. On tiptoes, the girl, Amina, peered in the window and said, “I can’t see anybody. Did you knock?”

By now, we were attracting attention, and at least a half-dozen kids had abandoned the playground area so they could get a closer look at us. I asked the tutor if she wanted to wait for awhile, and she said it was no problem. One of the kids took off to ask her mother if she had information about Sharifo’s whereabouts.

A little girl, who appeared to be about four years old, slid up against me and held my hand. Her hair was haphazardly braided into lumpy cornrows. “What’s your name? I asked. “Binti.” It was almost a whisper. “Binti? I think that means daughter.” She pressed her weight against my side, and then stepped back to stare at us some more.

I looked at the tutor, and another little girl was trying to look through the woman’s purse. She looked at me and said with mild panic, “I’m not sure what to do. I never babysat when I was a teenager.” I laughed. “Watch,” I said. "I know how to get everyone’s attention."

I pulled out my cell phone and flipped it open. I pushed the button for the camera feature and hoped that I could remember how to use it. I took Binti’s picture, and showed it to her. For the next twenty minutes, Jessica and I snapped pictures with our cell phones. We took pictures of kids laughing, dancing, jumping, smiling, posing, being silly, and much to my horror, flashing gang symbols.

Next door, a group of teenagers played with firecrackers. I jumped every time a firecracker snapped on the tired lawn. The kids didn’t care for the noise much, either.

At some point, I gave piggyback rides, held hands and moved in a circle without any recitation of Ring Around the Rosie, and took more pictures. We tickled, we cuddled, we spun. There was a moment, a crystalized moment, when I looked at the kids and realized that they were totally lacking in self-consciousness. They hadn’t yet been made aware that they were poor, that they were immigrants, or that they were living in a very bad neighborhood. For now, they are the embodiment of pure happiness. Bliss. And dirt. Every one of these kids, in their mismatched outfits and sporting bare, callused feet, was filthy. Their clothes looked as if they could never be laundered clean again, and as a group, they looked like the “before” scenario for some kind of extreme Tide commercial. They had no idea, and in the early July heat, it just didn't matter.

The littlest boy’s short-sleeved, plaid shirt was completely unbuttoned and inside out. I told him, but he misunderstood. He took off the shirt and turned it around so the buttons were in the back. I tried to help him, but once his shirt was off completely, he squealed with laughter and refused to let me work his left arm back into the sleeve. I had the advantage of size, and eventually I won the struggle.

The wind picked up and large swirls of dust made us squint and turn toward the building. Fat raindrops started to freckle the sidewalk, and I decided we had waited for Sharifo long enough. She has a critically ill infant, and I assumed she was once again spending the evening at Children’s Hospital.

Just as Jessica and I started to walk away—amid loud protests from our new friends—a chubby Mexican girl (the bossiest of the bunch) ran over to us, out of breath from the effort. “They’re here! They’re home! Look!” She pointed toward the back of the building where a white mini-van was surrounded by very small children. A tiny girl wearing a dark hijab was struggling with a jumbo-pack of paper towels. Another boy, barely out of the toddler stage, was carrying a 24-pack of ramen noodles. Sharifo had apparently been made aware of our presence, and she came around the side of the building to see what we wanted.

I introduced myself and reminded her we had spoken on the phone—about English. She looked exhausted, but in a flash her demeanor went from all business to delight. “Ooooo. Yes, my teacher! Come in, come in!”

As we entered the front door, our audience of pintsize onlookers gathered at the window to see what we were up to. Necks craned, teetering off the concrete platform at the front step, it turned out nobody was tall enough to see through that tattered window screen after all.

I wrote earlier that I don’t have kids, but while I waited for Sharifo, I was able to connect—if only for an hour—with the Somali kids and with the part of myself that remembered how to be silly, how to spin, and how to enjoy just playing on the dirt-mottled lawn without even considering what anybody thought about me. What a relief.

It was fun.

Because I said so, that's why.

I don’t have children, and let me be clear: It’s because I never wanted any. It took a lot of tries before I found a man who felt the same way, but find him I did, and we live contentedly child-free.

I don’t dislike children on principle, but I know my limits both emotionally and organizationally, and it would have been grossly irresponsible on my part to have attempted parenthood. This is a sentiment that, when expressed openly, immediately makes other people (usually parents themselves) insist that I would have been a wonderful mother, an excellent parent, and the producer of very smart offspring. This only proves to what degree they don’t really know me. Some people were never meant to be parents, and I am one of them.

This wasn’t a decision I came to late in life; in fact, it was something I knew in my early teens. At that time, I babysat a lot. By “a lot,” I mean I babysat in what seemed like every waking moment that I wasn’t in school. I loved the money, but couldn’t relate to the kids. I didn’t tell stories or play games mostly because it never occurred to me that this is what one does in the presence of small children. There was just no connection for me whatsoever—a fact that never changed with exposure or with age. It’s possible I couldn’t entertain children because I never thought like one myself, even when I was a child.

Of course, by my late teens, I knew there was something terribly wrong with me as a human being, and although I didn’t know the source of my defect, I knew it should never, ever be passed onto another person. It was a conviction I could not be talked out of then and never could going forward. I have great respect for genetics, and I do not harbor the kind of hubris that would have me procreate to continue my lineage rather than not procreate in the name of preventing more suffering in the world. Have I made worthwhile contributions to the world? Maybe. Small ones here and there, I’m sure. Don’t we all do that? I am average—just as average as about, say 33% of the population (the other 66% being above or below average, in case your math skills didn’t kick in while reading that). I am so average that I do not see and never have identified anything so extraordinary in myself that reproduction would be a positive contribution to the world.

I don’t know how people with BP manage families. Maybe they end up with terribly broken or dysfunctional families. A good portion of my life has been skewered by the warped perceptions and erratic moods inherent to BP. I honestly believe that had I opted for parenthood, any children I had would have been forcibly taken from my home years ago. In the end, I prefer to be criticized for not having children than to be vilified for having unwanted children I could not care for. There is no social demon quite like the woman who is accused of failing in motherhood.

Why do people feel they must argue the point of another person’s decision to remain childless? Do they doubt their own choice to have children and need validation by seeing others choose likewise? Do they honestly believe we have a biological mandate to reproduce? Do they just want to see somebody suffer through an unwanted experience? I don’t know the answer, but for the past 20 years, I have had to defend my decision, and frankly, I’m tired of it.

I don’t have kids because I didn’t want any. I don’t regret my decision and I never have, not for a second. It doesn’t mean I’m selfish. Selfish is having children to satisfy your own egotistical need to pass on your DNA. Selfish is having children because you think you should and not because raising a family is something you are passionate about. Selfish is having a child you aren’t all that interested in. I could say it’s selfish to have a kid even though you know you have a genetic defect that could be passed on and it could cause untold pain and suffering for that child, but that’s not really selfish; that’s irresponsible. End of argument.