Wednesday, January 27, 2010


I have some very personal experience with Post Traumatic Stress Disorder (PTSD) that, even after successful treatment, sometimes impacts my life. Typically, PTSD develops after an individual survives a traumatizing experience and only afterward has a reaction to that event. Those who are raped and combat soldiers are most often thought of as people at risk for PTSD, but it is also widely recognized as a possible consequence of emotional, physical, or sexual abuse, neglect, violent crime, natural disaster, and the events of 9-11. Symptoms of the condition vary widely, but are generally depression, inappropriate fear response to specific situations, flashbacks, body memories, and nightmares. That was my experience of PTSD, at any rate.

MY PTSD was not a result of any of the circumstances I listed above. Instead, mine evolved about five years after I stopped having reconstructive surgery, and was a direct result of how I handled (or in this case didn't handle) what happened to me. (The entry "What My Classmates Never Knew" describes my medical history.) The PTSD exploded onto the scene when an interviewer asked me a simple question, "How did all that hospitalization effect who you are now?" My stomach fell into my shoes and a floodgate opened with memories pouring forth day and night.

Any little thing – word or even a specific texture of plastic – could trigger a swamping of my mind with events of the past. Body memories are a kind of flashback with which I became very familiar. It goes beyond remembering to actually experiencing the physical sensations associated with the memory. Some completely lose touch with their current reality and the remembrance is all they know, but I didn't have that experience. Instead, I recall making my hands into fists and focusing very hard on just breathing because somebody happened to mention needles. I avoided one specific plastic food storage container because of the shape of the rim evoking memories of oxygen masks held over my face. There was one January day where my roommate held me for a very long time because I couldn't stop the memories from coming one after another.

With therapy, I learned to control the memories and work through what I had experienced as a child. Ironically, an emergency appendectomy aided in my healing in ways I still do not fully understand. I guess it has something to do with going through a medical situation that was 100% necessary for survival and coming out the other side without experiencing the kind of trauma I did as a child. Whatever the case, one year after it all came pouring out I was getting better.

To be clear, better does not mean gone. I do not know anybody who has dealt with PTSD who does not from time to time have a disproportionate fear response to something or the occasional nightmare. Current life events can sometimes drag up old issues and things get "interesting" for a time. At the moment, that is the case for me. One of my eyes is misbehaving and, though it has no useful vision, it still lives in my head and can develop problems. Of course – and this happens to me a great deal of the time – the doctor has no idea what might be actually causing the symptoms, so I have been making rounds of experts, including a totally weird but incredibly brilliant ear, nose and throat specialist, to determine if my facial structure anomalies explain current symptoms. Fortunately his quirks were an intriguing distraction whereas the ophthalmic plastic surgeon was fear-invoking. At the best of times, this species of doctor makes me want to scream and this one found it necessary to start discussing how a "cap" on the eye not giving me trouble could be beneficial.

Now surgery looms on the horizon, filling me with instinctive fear. Some days I think my emotions are irrational and perhaps I should be declared the literal kind of insane. Other moments find me proud because I have managed to not have a single nightmare. Part of the problem is that I have no idea how freaked out a "normal" person would be about current circumstances. Am I just the usual amount of scared or something beyond that?

I know my childhood medical experiences and the resulting PTSD will be a part of me throughout my life. My appendectomy helped me realize I can manage a difficult situation without it resulting in trauma. Perhaps this surgery will be the time and place where I realize that the part missing from me being "better" is me declaring it to be so.

Wednesday, January 20, 2010

Doing it with Grace?

I've always wanted the word "graceful" to describe how I live through the Hard Things life throws my way. At its core, this desire is based not on how I perceive my own actions, but the subjective interpretations of others. In many ways this contradicts the stance I have taken that I care little for what others think. Guess what? I'm contradictory.

This desire to be seen as graceful during stressful events stems from more than one source. First, I do not want to disappoint anybody. The praise I receive for my strength feels like a burden that I must shoulder while fighting my way through troubled waters. It doesn't help that I am one of the above-mentioned "anybodies" who I am afraid of disappointing. When life gets hard, I feel like a newly blinded person walking an obstacle course, increasing my feelings of inadequacy--for who wants to feel as though they cannot manage to cope with their life without crashing into everything in proximity?

Oddly enough, I cannot actually articulate what it would look like to live through a Hard Thing with grace. Does that mean I don't complain? Am I supposed to avoid self-pity and always seem totally alright? Maybe I get to fall apart but only a little bit on alternate days. Perhaps I can cry but only if it doesn't make my eyes red? I want to behave in a manner I cannot even describe, which highlights the ludicrousness of the entire thing.

Turning to the dictionary for help proved to be rather useless. Abstract definitions of graceful, such as "characterized by elegance or beauty" offer nothing concrete. By whose yardstick do we measure elegant, and isn't beauty in the eye of the beholder?

Next, I tried talking to my yoga buddy to see if I could verbally express the state I wished to reach, coming up with things like "never fall apart," "never complain," "don't need anything," and "always be positive." As the words passed my lips, I heard their failings. Not showing others how I feel is a type of dishonesty I endeavor not to commit. Furthermore, I lack the ability to be entirely self-sufficient and my sense of humor, with its sarcastic tendencies, is not suited to perpetual sanguinity. If those phrases describe grace, I am not capable of exhibiting it.

TV and film offer a plethora of examples of people living through Hard Things with grace almost as if they pass through the experience protected by the emotional equivalent of Teflon. Whenever I watch such things, I feel judgment pouring out of the television directly at me, a dented frying pan with a surface so scratched that half the scrambled eggs stick to the bottom. There has to be some middle ground between damaged to the point of uselessness and so pristine that nothing has penetrated.

A friend observed that those who stoically live through tribulations are often praised because they make witnesses feel better. Not only are the observers spared from watching someone in pain, but they are comforted by the idea that should they have a similar trial in their lives it will be equally routine.

In the above I may have finally found some useful truth. Relentless optimism in the face of a difficult situation ignores part of the experience life is offering. Life's Hard Things are meant to make us feel a myriad of emotions, and relentlessly wallowing in the negative is considered unhealthy. Perhaps it is equally destructive to remain determinedly positive, for there is no joy without sorrow and no sorrow without joy. Maybe, just maybe, allowing yourself to feel whatever happens to grow within your heart is true health. It's possible that truly living means you must fully experience every emotion. Could true grace be following a course through turbulent waters that zigs and zags while you maintain the certainty that you will reach your destination on the other side?

Now I don't have a word to describe the quality I wish to possess while I wend my way to the other side of a Hard Thing, but I finally know its nature and that I possess the ability to engender it in my life. I want to embrace all the emotions that pass through me and express them without the clutter of self-judgment. Though mine might be sarcastic and ironic at times, I know humor must be a part of it. And through it all I will possess the bone-deep belief that I will get to the other side having lived all of it – the good, the bad and the comical.

All this is simply words on a screen that mean little unless I can actually do it in the face of a Hard Thing. Well, I am in the middle of such an experience, and in fact wrote this entry to try and sort out my feelings. One of my eyes has decided to use pain as its means of expressing a desire to no longer be of this earth. Removal in some form is on the horizon, and my attitude has not been what I would like. I now have a clarity about how I wish to live this next little part of my life. May clarity go further than the end of my nose.

Wednesday, January 13, 2010

Are Labels Bad?

More and more I hear about children who have diagnosed conditions such as Autism, Attention Deficit Hyperactivity Disorder, or learning disabilities who have been placed in the educational system without the diagnosis being known to teachers or administration. Parents feel that assumptions made about the label will harm their child far more than keeping the condition unknown. Bet you figured out that I find this approach to be problematic.

My label of blind is obvious to most upon meeting me and is no more escapable than others noting my gender. The assumptions people make about my visual status are often frustrating, insulting, or downright harmful. Still, even if it were possible, I would not have my visual status unknown to those who meet me. In fact, those times when my label eludes another's awareness often involve the most basic of problems, like being able to get my attention.

The word blind means that I am not able to perceive my surroundings with my eyes – a statement of fact. From this truth people attach significance and deduce implications beyond the literal. "If she can't see, then she can't use a computer." Not being able to see is a mere nuisance, whereas other's conclusions plague me endlessly. Rather than avoiding the descriptive label, I focus on stripping away the limitations people associate with it. Given that it's impossible for me to evade my blindness being known, my stance is not exactly all that principled.

Other labels that describe me, such as chronically ill, are not discernible by visual assessment. To be honest, I do not always bring them up upon first meeting another. While it would be awkward – "Hi, I'm Jen and I have Chronic Fatigue Syndrome" – that is not my primary reason for keeping the condition to myself. Rather, I hate the hassle that often results from people knowing of my health situation. "Wow, you don't look sick" or "I get tired, too" are just some of the possible responses I field. When it matters, such as with medical professionals or those who are relying upon me, I make my condition known because I find it inconceivable that I would deny others necessary information.

Moreover, I find it philosophically wrong to avoid a pragmatic descriptive label because others attach meaning to it. If I truly believe blindness is not a negative or positive state but simply a fact, then I need to live accordingly. Hiding my labels implies there is something about them requiring concealment – something bad. I cannot and will not substantiate others' negative perceptions of my labels.

In my non-parent opinion, I believe divorcing a child from their condition does the child a disservice. Yes, teachers will have some wrong-headed beliefs, but they may also have a better idea of how to teach the child. Rather than avoiding a statement of fact, parents have an opportunity to debunk assumptions by insisting their child not be pigeonholed by preconceived notions. And, when another student comes along with the same condition, that teacher will be better able to handle it with an open mind.

I also wonder what it teaches a child when their condition is concealed. One possible message is that when others react badly to a presented fact, the proper course of action is to hide the fact. Another possible lesson is that the label is something shameful. Even if a parent can avoid conveying both those ideas, the child could still learn that they should not openly address their diagnosis. How could any of these be in the long term best interests of a child?

I realize making labels known and then dealing with the consequences is difficult, but so too is keeping labels hidden. What must you do to keep a condition hidden, especially if teachers are actively suggesting the possibility? Also, while benefits of concealment are limited to an individual, debunking misconceptions helps others. I want the world experienced by future blind, chronically ill, facially different children to be better than the one I now inhabit, so I cope with the detrimental aspects whenever possible. It does make my life harder, but it also means I'm living what I believe rather than allowing others to shape my actions.

Wednesday, January 6, 2010

When is Amazing Insulting?

Sometimes people tell me I'm amazing. Such a compliment should flood me with pride, right? Nope, not me. My internal reaction is more akin to somebody who has been insulted. Few understand this response, and my explanations do not elucidate. Perhaps what cannot come out of my mouth persuasively will pour from my fingers convincingly.

First, let's get one thing very clear: I am amazing – smart, funny, creative, a great friend, and sometimes wise. The real problem is the single word that sooner or later is attached to most accolades. "Wow, Jen, I don't know how you do that. If I were blind..." or "Jen, I'm so amazed at how you "x" because you're blind." Now replace the word blind with woman. "Sally, it's so amazing that you can build a bookcase because you're a woman." Feminists everywhere would protest. In the case of any disability, however, it's somehow not only acceptable but flattering to say this.

In our minds, we all have a collection of others' actions we consider typical/average/ordinary/normal in any given set of circumstances. The behaviors usually are not fixed but represent a range of possible acts. For example, typical responses to coming upon a burning building could be anything from calling 911 to turning a hose on the flames, or even smashing in a window to enable a trapped person to escape. Both walking by doing nothing or running into the structure are outside this range. We judge one of these acts to be worthy of praise, and the other deserving of condemnation. Assumptions abound in this highly subjective process that is fundamentally about internalized social norms, cultural expectations, and stereotypes. These behavioral norms and evaluative processes function as social lubricant and have a definite place amongst humanity, but sometimes they can go a wee bit awry.

In order for somebody to find my actions admirable, they must determine that these acts fall outside the range of ordinary behavior in a positive manner. Rather than evaluating me based on what is typical for any person, they use the category of expectations they have for blind people, which are often substantially lower. I do not find it flattering to be told I have surpassed low expectations. Furthermore I find it insulting to expect less of a blind person simply because they are blind.

Most people tell me that "If I were blind, I'd have trouble doing 'x'." Their expectations of blind people are engendered by what they think it would be like and how that would impact what they could do. To me, there is a difference between my perceptual abilities and what I can accomplish. In baking a cake, I cannot see if the measuring cup is full. Is my cake somehow better because I felt instead of saw my way through the task? TABs reason from what a disabled person cannot do directly to how that impacts achievements without taking into consideration adaptive techniques and assistive technology. Skipping the middle part makes miraculous what is in actuality, commonplace.

Not convinced yet? Well, I have another reason to loathe such praise. Those we label as amazing are separated from "average folks" by their accomplishments. Being up on a pedestal to be admired creates more barriers between me and my goal of being seen as different without being alien. Nothing would make me happier than to just be Jen, not that amazing blind person who can live all by herself. It strips my individuality while further distancing me from those with whom I should be socially integrated. In fact, it is my experience that friendship is only possible after people stop continually seeing me as an amazing blind person and admire me simply as a person.