Pretty Sick

I thought it was just me. That some irritable, pessimistic aspect of myself had fixated on a probably erroneous idea. But then my youngest son asked me, “What’s up with all these movies making being sick look so glamorous?” A day later, his brother leveled a similar charge; “Why are they making movies that make it seem like people with horrible illnesses don’t have any bad effects from it?”

Really?? Because I was just asking myself the same, the very same, question. Then, while browsing my facebook page, I found that a very dear friend of mine posted a picture of a woman’s skeleton, damaged due to the corsets she wore, so popular in the 1800s. Women often had fainting spells back then. A practice that was portrayed quite delicately and prettily, the lady in question would wilt with one lovely hand to her perfect forehead. And sometimes the portrayal had to be taken with a grain of salt. It was often a given that the lass was not seriously ill, or that she may even be overdoing it, playacting in the attempt to gain attention. But even if the female in question was truly ill (think Beth in Little Women) she was still entirely palatable. At any rate, the fainting phenomenon, along with a variety of other ailments including breathing problems, severe damage to the ribcage and displacement of the uterus, was a result of the corset and very real.

I took this as A Sign, because the corset and its attendant problems was the very reference I’d made when thinking about the possible roots of palatable, or glamorized, disease. One pictures the elegant female, softly fainting without making a single clumsy move or wrinkling her dress. While underneath, the truth at its source is quite horrifying.

Remember Love Story? Okay, not everyone does, but those that didn’t experience it can google it. Wiki will feature the assertion that the American Film Institute decreed it the “most romantic movie of all time.” But that doesn’t do the real deal justice. It was a watershed film. It was 1970, and I was at a perfectly impressionable age for the sort of hype dished out for this movie. It was meant to be “real,” and daring; it portrayed a “real” live sick person. Who falls in love. It was groundbreaking. It had taken a tremendous leap and talked about a painful part of life that people must sometimes endure.

Except when you get to the movie itself, you are given such an innocent version of what “being sick” looks like, the notion itself, of being ill, is very nearly irresistibly attractive. Though chronically, lethally, ill, the female (Ali MacGraw) star’s hair shines like the sun on the water, her complexion remains porcelain, she’s already stick thin, so that doesn’t change, and nothing ugly ever happens. Until she very prettily dies.

Because, as those of us with chronic illnesses and/or physical disabilities know, the single ugly point in that movie is in reality just one aspect of a whole spectrum of unpleasant truths. Dying happens, but it isn’t all that happens. There’s a whole bunch of unsavory stuff in between. It can be ugly, overwhelmingly undignified, inconvenient, irritating, tiresome, draining and frightening. And I guess that’s all I’m saying. If you want to lay the claim that you are portraying it, then portray it accurately, all of it.

I guess I just feel that if you are in any position where a seriousness illness has touched your life, it’s going to be awfully hard to feel an affinity for the glammed up version the media and “polite society” might present. 40 + years later, we’re still getting Love Story (The Fault in Our Stars). But movies like 50/50, that show throwing up and hair loss and scars (big scars) that aren’t yet healed, don’t seem to get nearly as much attention. And even there, the star gets better, has a successful surgery, goes into remission and gets the girl. None of this ongoing muck that can last for years before the afflicted finally dies, nothing that represents the never ending tedium that goes hand in hand with chronic illness. In general, we get watered down painted up versions that bear little recognition to the real thing.

The whole of this thorn in my side may not be as significant as I think it is. But I just think it’s an awful lot to have to live up to. And more’s the pity for people who think that the ill person in their life, particularly if they are female, is going to be a delicate willowy lily, gently and prettily fading in the sunlight. In the interest of accuracy, you’re metaphorically more likely to get a sturdy stubborn vine with than one or two gashes in it, any maybe a few leaves missing. Because most of the sick people I know, including myself, are tough, resilient and strong willed. And most of us bear some manner or other of evidence of our struggle, whether it be our hair falling out, a physical device to accommodate a disability or an actual scar. Not to mention, for some of us, the puking.

So, the next time someone tries to spotlight something that for a great many of us has nothing to do with anything weak or pretty, throw your proverbial popcorn at the screen, boo and hiss. Let them know it’s unacceptable, and that their efforts have helped no real person in any real way. I don’t have the energy to try to look pretty all the time when in the midst of my disease and disability, and I resent the implication that I should. This is not to say I’ve stopped being a girly girl. I still love my cosmetics and hair jewelry and things that smell good. Just don’t expect me to be too pretty when I’m feeling pretty sick. Because if you do, you’re in for a bit of a shock.

Sometimes, You Get What You Get

We are all familiar with the notion of karma. In our present day world, it has reached beyond its Hindu/Buddhist origins to become a part of our popular culture. And why not? There is something both just and comforting about the idea of the cosmos making it its business that we get back what we give.

The truth is, though, karma is much more complicated than we often give it credit for. Few of us have access to the details of our past lives, and that is what karma is fully involved in. On a casual level, we often attribute a very obvious cause and effect phenomenon to karma; “instant” karma is perhaps the most reassuring and entertaining of our more casual take on the subject. A guy kicks his dog, then finds a parking ticket on his windshield five minutes later. Instant karma, and we’re all happy (except for the guy who kicked his dog).

But as we all know, bad things happen to good people, and we can’t for the life of us justify much of it in any sensible way. I suppose this is a good enough clue that the gears of karma are far more complex than we suspect. In particular, many of my friends have more than their fair share of illnesses, disabilities and physical ailments.

And it isn’t anywhere near as glamorous as the movies would have you believe. In fact, being chronically ill or disabled is undignified and at times downright ugly. Yet we are bombarded with images and ideals that assert the opposite. From the prettily fainting ladies of the 1800s (however downplayed, this was usually a result of the tightly laced corsets that caused women to be, at best, out of breath, at worst, to endure displacement of the uterus from the constant pressure) to movies like Love Story, where the female protagonist remained attractive and lovely throughout the entire picture, to its modern day equivalent, The Fault in Our Stars, where, at least in the previews of the movie, both featured actors appear adorable and nearly symptom free. So, if you haven’t any personal familiarity with the nature of illness and disease, let me assure you, it isn’t anything like the movies.

While I would never wish any illness or disability on my friends, family, or anyone else, I have to say, it does actually have some positive value. Apart from the occasional tough customer, the majority of people I know who are dealing with chronic illness have something in common. Each of them have the propensity for a stunning depth of empathy and care regarding other people. While most people had this attribute before they became sick or disabled, the nature of being so seems to have increased this feature of their personalities tenfold.

As far as I can tell, none of us deserved to get sick, nor earned any disability in direct proportion to their actions in this life. Sometimes, you don’t get what you give, you just get what you get. But their ability to manage life toting this particular burden goes beyond admirable. It actually becomes a tool used to better understand our fellow human beings. And when you say, “I’m having a crappy day of it,” they know that what you really mean is that your condition is kicking your ass, or that everything you’ve tried to do this day has been hampered or thwarted by the sheer barriers your condition puts before you. They remind you that tomorrow will be better, that even if it isn’t, they truly know how you feel. They remind you that in spite of your condition, you continue to refine your craft, whether it be writing, raising your children, being a spectacular grandparent or superlative guardian to the animals in your care. And that the fact that you are able to do this, is both awe inspiring and remarkable.

Another tenet of Buddhism, and something the Four Noble Truths are wholly taken up with, is the fact that being human means that suffering on one level or another is inevitable. If suffering can be utilized to better understand our fellows, or to place value on the everyday joys and human connections that can so be taken for granted, then the affliction is turned on its head, inverted to place its negative effects far below the positive. So, when we get what we get, rather than what we give, we can, with a knowing wink to the Universe, graciously accept our lot. And on those days when when graciousness feels out of reach and foreign, we can always find comfort in a friend, who knows exactly what we mean.