“Blackbird singing in the dead of night,
Take those broken wings, and learn to fly.”
The Beatles, “Blackbird.”
I know that I am not without prejudice. Although I would like to consider every human as equal to every other human, I recognize that I both consciously and subconsciously ascribe to stereotypes about people of certain sexes, races, ages, classes, professions, appearances, and so forth. Most of the time, these preconceived notions do not jump out at me, and I can lull myself into thinking that I am doing a decent job of keeping my -isms at bay. Today, however, one of those prejudices punched me in the stomach and knocked the wind right out of me.
I met a man today who had been burned extensively over his entire body. The skin of his face was pulled so tightly that his light blue eyes were permanently red-rimmed, and his skin colour was unnaturally white. He had almost no hair on his head, or on his face; one of his legs was made of metal below the knee. I had seen this man, and noted his burns, from a distance a couple of times previously– once at a playground, and once in a cafe– but I had never been close enough to see him clearly. When he walked through the door at work today, he was perhaps two meters from me, and I was in a position where to avoid him would have been exceedingly rude. I forced myself to look at him, in a way that I hoped very much was similar to the way I would look at anyone I had just met, and I said hello to him and to his daughter.
It is possible that on the surface my face seemed open, but given the aversion that lay just below, I am doubtful that my expression was as neutral as I would have hoped. The man, who had likely seen similar reactions countless times, carried on chatting amiably with the woman standing next to me, giving me time to regain my composure. By the end of the morning, I had glanced at the man often enough to become familiar with his appearance; my goodbye was better than my hello, but was still tentative.
During the morning, the question that bubbled up repeatedly in my head was, “What happened?” How had this man been burned to within an inch of his life? What terrible accident had taken place, and how long had this man fought for his survival afterwards? Had the man’s daughter been born before or after her father’s near-death event, and how did the daughter feel about what her dad looked like? The answers to these questions, I knew, were absolutely none of my business, but my mind refused to stop asking for them. When the man left, I had to bite my tongue not to ask my friend, who had greeted the man and his daughter warmly by name, if she knew his back story.
We all have invisible scars. I do not know a single human who has not been damaged by life. Just being born is itself a traumatic experience. As adults, some of these unseen scars are just minor scratches, caused perhaps by the relative who made an insulting comment about your child, the dentist that banned you for missing too many appointments, or the wife who forgot Valentine’s Day three years ago. But some psychological wounds go far deeper, cutting into the muscle, or even taking limbs. I have watched one friend, Kevin, who suffered extreme abuse as a child, battle to remain functional. Usually he stays upright, but sometimes the pain is too much for him, and Kevin falls, figuratively, and even literally. My father had a friend, Ray, who engaged in a battle similar to Kevin’s for a very long time; Ray’s wife found Ray hanging just above a chair, a silk tie around his neck, several years ago.
To expose the right scars, at the right time, to the right people, seems to be an advanced social skill. During my first year at graduate school, I worked part-time in the office of a workshop for adults with developmental disabilities. The case workers sometimes came to the front office, the only space in the building where the windows were low enough to see outside, to chat and have a change of scenery. After several break-time conversations, I became friendly enough with one of the case workers, Mindy, to suggest meeting for coffee. I had no car at that point, but Mindy did, and she offered to pick me up. During that very first ride, while Mindy drove easily through the notorious traffic of Boston, Mindy mentioned that she was a recovered heroin and alcohol addict, and she added nonchalantly that she had participated in several robberies during her junkie years to acquire money for drugs. Burglars had figured high on my list of childhood baddies, and when Mindy told me of her breaking and entering adventures, my mind reeled as I struggled to quickly reconcile my innate fear of felons with my fondness for my friend. After a brief conversational hiatus on my part, which Mindy allowed me, my heart won and I accepted that I now had a friend with a significant criminal record. Mindy was a natural talker, and driving seemed to elicit an additional openness; as a passenger in Mindy’s small, blue American car, I sometimes revisited that initial feeling of soaring, when my intellect needed a time-out to come to grips with stories from Mindy’s past of experiences so painful that I would not wish them on anyone.
It is possible that Mindy revealed more to me than what would be considered healthy. But by telling me her history so freely, Mindy gave me hope that I could rise above my own background and aspire to the kind of life Mindy was living. Despite her intermittently horrific past, Mindy had a full-time job, a steady girlfriend, a cosy home, and a car; she was, by all measures, a successful adult. If someone much further to the left on the bell curve of invisible damage could achieve such respectability, it stood to reason that I could too.
Some people, like my dad, hold their cards much closer to their chest than Mindy. I learned early on that my father had spent the first year of my life as an Air Force officer in the Vietnam War. As soon as I had a vague idea of what war entailed, I understood that my father’s service in Vietnam had cut deeply into his psyche. My parents divorced when I was five, and I saw my dad every four to six weeks. I remember two serious talks my dad had with me and my siblings; the first was about puberty and included the unwrapping of a tampon, much to my embarrassment as the oldest daughter and the only daughter that would need such a thing, and the second, held when I was maybe fifteen, was about Vietnam. Dad set up a screen, turned on the slide projector, and quietly described twenty or thirty slides. I remember seeing pictures of barbed wire, planes, and buildings; I remember listening to my dad’s voice crack, falter, and then fall silent while the projector displayed an image of one particular young man in uniform. The man, a friend of my father’s, had lost his life during his service in Vietnam. While my father paused at his picture, my siblings and I sat, hushed and uncharacteristically still, like interns observing an open-heart surgery for the first time. I never saw those slides again, but once sufficed to help me see more clearly the contours of the scar my father carried from his service in the war.
My dad let us in once, but I have known people who, whether consciously or subconsciously, never open the gates to their own gardens of Gethsemane. I had a friend, Joanna, many years ago, who had a secret. Joanna sometimes referred to the pain the secret had caused her, and it was clear to me that her wounds had been deep. While I sometimes thought Joanna was trying to give me clues about what lay in her past, she never told me outright what had hurt her so profoundly. In the absence of knowledge, my imagination provided possibilities: perhaps Joanna had recovered from gambling, childhood abuse, or eating disorders. Maybe she had been raped, or even kidnapped. Sometimes, in conversations, I wondered if I had touched a sore spot, but I never knew for sure, and the uncertainty left me uneasy.
On the spectrum of self-disclosure, I fall somewhere closer to Mindy than to my father or Joanna. I prefer, in theory, to share, but I am also aware of the vulnerability that comes from exposure. One salient fact about my current existence is that my husband, Håkan, was diagnosed with Multiple Sclerosis (MS) three years ago. He has been comparatively lucky so far— the MS has not obviously affected his movement, at least not more than a slight increase in clumsiness. It has, however, caused considerable, and sometimes insurmountable, fatigue, and the disease has also necessitated drug regimes that have noticeable, and occasionally unpleasant, side effects. While I don’t announce to people upon introduction that my husband has MS, I also don’t keep the diagnosis to myself. I do, though, loosely keep track of who knows and who doesn’t. Those who do know can be roughly divided into empathetic askers, non-askers, and informational askers.
Of these, the most straightforward for me to deal with are the informational askers—the people who ask very matter-of-factly how Håkan is doing and seem satisfied with whatever answer I provide. The informational askers tend to be either people I know extremely well, like my sister, or people I don’t know well at all. The non-askers, surprisingly, pose more problems than the informational askers. My suspicion is that the non-askers, who are often people I know reasonably well, feel that it would be intrusive to inquire about such a sensitive topic; they would prefer to let me volunteer whatever I feel comfortable sharing. However, because they don’t ask, I sometimes wonder if they would rather not know. When I do talk about difficult aspects of living with MS with non-askers, I sometimes feel a twinge of panic, akin to the sensation the emperor likely felt in the fable, that I have bared more than I should have while the non-askers remain fully dressed.
Yet most challenging of all are the empathetic askers. This group can be further subdivided into empathetic, yet dutiful, and straight-up empathetic. Members of the first set do honestly care, but they also feel that they should ask, regardless of whether they are in the mood to truly listen or not. While I appreciate their concern, and I am grateful for the chance to describe my husband’s issues with, for example, daily versus weekly injections, the tone of these questioners sometimes raises my hackles, particularly if it teeters precariously on the verge of pity. The second set, the purely empathetic, are often people who have just learned of Håkan’s diagnosis after having known me for some time. They are often caught off-guard, and it is their sympathy that I find hardest to take; their surprise, and their genuine concern, pulls off the disguise of familiarity and routine and reminds me that MS is an armed robber of a disease that I am powerless to apprehend. I sometimes have to pause, when answering this group’s well-meaning questions, to maintain a semblance of composure.
I choose who, and how much, to tell about Håkan’s illness. There is little about my appearance that would lead a casual acquaintance to wonder what damage I have lived through, or am living with. This is not the case for people like the burn survivor that I met; only people who have not seen him in person could be unaware that he has suffered great trauma. Last summer, my family was fortunate enough to attend two sessions of the London Paralympic Games. During the athletics session, we were seated within shouting distance of the women’s long jump event for women who had lost some or all of one or both legs. As I watched these extremely fit women leap across the starting line, my mind ran through lists of ways they may have lost their legs: car crash, birth defect, boating accident. How did they feel about taking part in the Paralympics; did they wonder about whether or not they would have qualified for the Olympics had their bodies been typical? As woman after woman soared through the air, my eyes welled up with tears of admiration for the physical and mental strength of these athletes. Through choice and ability, they had triumphed spectacularly over their additional physical challenges. By doing so, they had also put themselves in a position where they would be asked, over and over, about how and why their bodies were different.
My dear friend Vera told me about a blog she had started to follow written by Stephanie Nielson (“NieNie”), a woman who had survived a plane crash but been badly burnt over most of her body.
“She’s very into her religion… I can’t always go there with her… and her lifestyle is completely unlike mine, but she is so inspirational. It’s amazing that she was able to recover from her accident. Her appearance changed completely, but she is still so positive,” Vera explained.
“I’ll check it out,” I promised.
I visited the blog (http://nieniedialogues.blogspot.co.uk), and I saw exactly what Vera meant. I soon found an entry that included photos of NieNie from both before and after her accident (see post from 12/12/12). To share those photos with her large audience required bravery, as did writing, in that same post, about her post-accident visit to a store she had frequented regularly prior to the crash. While she recognized members of the staff, they had no idea who she was, and it hurt. Despite her struggles, NieNie refused, in post after post, to succumb to self-pity, and instead stayed steadfastly focussed on gratitude.
As someone whose own hurt is largely hidden, I find the openness of the Paralympians and NieNie in exposing their physical scars courageous. What would happen if I allowed more of my own damage to show—would I encourage others to let light into their dark rooms as well? How would I feel about making myself more vulnerable? Because that is the catch—vulnerability. While I have enormous respect for the athletes and swimmers I saw at the Paralympics, I would be lying if I said that respect did not sometimes cross the line into pity, and similarly, alongside my admiration of NieNie the blogger, I am ashamed to admit to a pang of shock at her appearance. Listening to Mindy, my friend who shared more of her hidden wounds with me than anyone before or since, I sometimes found myself thinking, “Poor Mindy.” Still worse, occasionally I had the nerve to judge Mindy, and to issue the verdict, albeit fleeting, that I was morally superior. I would prefer not to be pitied, and I would be insulted should someone deem herself intrinsically better than me; the less others know, the less either of those responses are likely to occur. But at the same time, the less others know about me, the further I feel from them.
A couple weeks ago, I happened upon a couple friends at the local cafe. I’ve known both women for several years, and whenever I’ve had the chance to sit down with them, the conversation has flowed freely and been punctuated by laughter. I know neither of the women well enough to call for a chat, and I haven’t ever been round to either of their homes, nor has either of them been home to mine, but I am always happy to see them both. That morning at the cafe, the two women brought up a topic that is particularly sensitive for me. Often, when this particular subject is on the table, I skirt it completely, or if cornered, opt for an easy out. But that morning I was feeling courageous, and rather than skittishly moving the conversation to safer ground, I told my friends a bit of truth. The women were surprised, but they recovered quickly; after a few minutes of kindly question-and-answer, they added my stance on that topic to their picture of me, and we moved on. No ill came of my honesty. On the contrary, both women, when I’ve bumped into them since that morning, have greeted me even more warmly than before.
I will see the man who survived the burns again, and when I do, this is what I want to remember: we are all broken. Some of us are more broken on the inside, some on the outside, some are broken all over. There are people, like my friend Joanna and my father, who will keep their invisible pain mostly to themselves. Others, like me, will tread the line between concealing and revealing hidden scars, while the Mindys of the world will not hesitate to tell their full story. All of us will reckon with the consequences of whichever choice we make. Those with visible damage may be less able to opt out of exposing past or current pain, but they too have alternatives. A talkative cashier at the supermarket, one morning when there were few shoppers, happened to tell me about her son, who had an artificial leg below the knee.
“He used to keep it covered up all the time, you know, put on regular trousers and shoes over it. When he did that, he looked just like any other bloke. But as he got older, he got fed up with keeping it under wraps. When we went on holiday last year, we were on the beach, and someone was just staring at him, and wouldn’t stop staring, you know?”
“Oh, that must have been annoying,” I said, while bagging my groceries.
“Well, William thought he’d show the lad what for, so he took his metal leg right off, and started polishing it.” The cashier chortled. “Ah, you should have seen the look on the lad’s face, his jaw just dropped, and William said to him, ‘Maybe you should think twice about staring next time.’ I felt a bit sorry for the lad, but my William had a point, you know, and I’m guessing that lad changed his ways after that.”
“I’m sure he did,” I agreed.
Very few will rise, phoenix-like, and transform pain into accomplishment before a wide audience, as the Paralympians and NieNie the blogger have done. But those who do provide an example for the rest of us, who are merely attempting to transcend physical or mental hurt in our personal spheres. Stephanie Nielson—NieNie—has written a book about her accident and the aftermath, and customer review after customer review includes the words “beautiful,” “blessing,” and, most frequent by a large margin, “inspiring.”
The man that came to my workplace seemed to lean neither towards anger, like the cashier’s son, nor towards publicity, like NieNie. The day I met him, and the times I had seen him previously, he was going about the routines of daily life in this part of London: spending the morning at the playground with his wife and daughter, enjoying a cup of coffee with friends, bringing his daughter to a playgroup. Like any other person, regardless of sex, colour, or appearance, when he came through the door, he deserved eye contact, a smile, and a warm “good morning.” I could not give him that greeting the first time I met him properly. Next time, I hope that I can.