A Chronic Euphemist

I’ve recently gotten in touch with a number of people from my past life. The life before Vancouver. And the life before my body became an anarchist.

The reunion always starts with the same request for an update. I stare at the flickering line inviting me to type, stumped. I don’t know why. Maybe it’s because I’ve been in a bit of a haze for the last few years, not reaching out to anyone new. My circle has shrunk around me as the winds picked up intensity. But things seem to be settling and perhaps the world is sensing it, because while I reach out to certain people from the past, others are suddenly reaching out for me.

Beginning to type, I use words like roller coaster, bit of a blur, and crazy. I fill the message with emoticons. I don’t know how much to say, whether it would be easier to write it all out, like a timeline, or to merely acknowledge that my life has changed and wait for prompting to continue. I don’t fear them knowing my secrets. I don’t fear exposure. I fear seeing the words, typed out in black and white, able to be read over and over again at leisure.

Part of the problem is that the words are clinical, leaving no room for personality. ‘Sick’ and ‘illness’- they carve into my humanity, sculpting me into a sad story, a story of loss. And that’s just not true. My life is greater than the sum of my symptoms and limitations. I am so much more than a medical term.

In conversation I can alter and expand the picture created by these words. I can quickly sweep away instinctive reactions and prove that I’m still me, still whole. But in a short Facebook message I don’t have that luxury. I have a limited word count, dictated by the sacred rules of social media, with only so much that I can say before waiting for the recipient to absorb my words and come up with a response. And with this pause, the connotations lurking behind the text can grow, taking over the message and weaving their way into the perception of the reader. There is nothing I can do but wait, and hope for a chance to explain.

Of course, this experience isn’t unique to my situation. It occurs whenever extreme effort is required to integrate the salt that has shaken your life. After spending so much time balancing on an emotional, and sometimes physical, tightrope, it is never pleasant to write out an explanation. You know that the person on the other end of the message will not see your progress. It is no one’s fault, simply the reality of distance and written communication. Their expressions of sadness, their words of comfort and encouragement, pull you right back to the unsteady beginning. They themselves are teetering as they process the knowledge. Their instinct shouts that the batter is ruined and, no matter how settled we are, it is difficult to separate ourselves from their reaction. Especially when it is expressed with love and care.

Thankfully, I have discovered a solution– euphemisms. Other, softer, words are needed to explain the change. Phrases equivalent to the likes of ‘bun in the oven’, and ‘tossing their cookies’ – although a baking theme is not a prerequisite. Something light. Something that leaves an open door, allowing for gradual additions to the picture.

Alas, in my case, it would appear that not a single established phrase exists. I have spent hours combing the internet, haven for all knowledge. The only synonym for chronic illness listed is chronic disease which, in my case, conjures up images of fleas for reasons that I’d rather not investigate. Our vocabulary has so much capacity for expansion, but expressions are borne out of dialogue. We are the ones with the power to alter our rhetoric.

That is my challenge to you this week. It really is a call to arms. Talk about it. Think about it. Channel your creative inner genius. And come back with some euphemisms for chronic illness.

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Movie Genres and Sick Days

This past week has been a bit rough on me. Maybe it was the weather, maybe I overexerted myself. Maybe my body was in a malicious mood. I’ve mostly given up trying to identify one precise trigger as there are just too many variables to keep track of. Whatever the reason, I have spent the majority of these last few days hobbling from my couch to my bed.

For some of us, days like these may come around once every couple of months. For others, like me, they may be a fairly regular occurrence. But we’ve all had sick days and will experience them again. And while we may dream of days off, spent cuddled up in front of the television with a cup of tea, the reality is never quite so pleasant. You see, to achieve a day completely devoid of responsibility you, generally speaking, must be incapable of handling said responsibility. Meaning that you are quite sick. Body shaking, sweat pouring, teeth clenched in pain kind of sick. And when you are in this state, trying desperately to hold on to your sanity and force yourself to heal, you face one of life’s most difficult challenges. You must decide what movie to watch. Now, there are some situations where a movie is not the ideal choice, but most of the time a movie will be your salvation, transporting you away from your aching body while allowing an opportunity for rest and recuperation. The problem is, not just any movie will do. Some will serve only to exacerbate your misfortune and the perfect decision is different for each situation. I will discuss a variety of movie genres here, but, when the time comes, it will be up to you to make the ultimate choice.

I am unabashed to admit that my instinctive first pick is usually a Rom-Com. There is something so fulfilling about knowing exactly how the movie is going to end. From the first glimpse of two strangers going about their morning routines you can be assured that by the time the credits roll, all of the loose ends will be tied with perfect bows. This comfort is ideal for sick days in many ways, as it allows you to relax and even nap, while never being completely out of your depth with the plot line. Unfortunately this very attribute of predictability can be this genre’s downfall as you may find yourself focusing more on your malaise as you become bored with the story. There can also be a situational problem where, if you are feeling a mixture of misery and frustration at your current state of being, you may begin to get angry at the shallow nature of the characters and plot.

Slapstick Comedy can avoid that problem as the major plot points are supposed to be ridiculous. It is also constructed to make you smile and is therefore ideally suited to bring your spirits up. The biggest problem with this genre is the laugh track. On a normal day those sounds of mirth barely register, only serving as punctuation to the script. But on a sick day you may find yourself becoming increasingly aware of the repetition of the track, that one voice that is practically screaming, and it’s criminal overuse. The unrelenting manufactured laughter will slowly work its way into your psyche, perhaps leading to you launching nearby objects in the direction of the television.

Opposite of this light and frivolous humour are Movies That Make You Think. I consider most foreign movies, documentaries, and historical films that aim for accuracy to be a part of this category. The only positive trait that I can ascribe to this genre is that you may, if in possession of an adequate amount of brain power while viewing, learn something new. A false sense of productivity can be created. In my experience, however, if you are able to think clearly enough to wade through and absorb subtitles, stuttering interviews, and cold hard facts without the cushion of an overarching story line built on character, you are probably also capable of something much more productive. And while I encourage movie watching for every state of being, ill or otherwise, a ‘just because’ movie choice involves a completely separate thought process that is not applicable to the subject at hand.

A commonly chosen genre for a sick day is that of the Tear Jerker. Movies that inspire watery eyes or, depending on the individual, full blown weeping. The best part of these movies is that you will most likely care about the characters, empathize with their struggles, and become immersed in the story. This process will allow you to forget your own troubles for a while. The issue, however, is right in the title itself. Tears. Depending on what you are sick with, you may be congested, your blood pressure may be high, you may be dehydrated, or possibly have a headache. And tears are the enemy of all of these conditions. When you cry, it increases the pressure it your head, causing all of the aforementioned problems to worsen dramatically. Furthermore, due to the fact that you are already in a fragile state, your weepiness levels will most likely be heightened leading to positively painful bawling. For this reason tear jerkers are most appropriate for injuries, joint pain, and anything as far removed from your head as possible.

By contrast, a severely underrated movie genre for sick days is that of Action and Adventure. The problems with this genre are obvious. The jerky camera, flashing lights, and loud noises can all be extremely difficult for those with migraines, or anyone trying to relax. There is, however, a wonderfully cathartic aspect to watching apocalypses and battles of all kinds while unwell. When you feel like your world must be ending it is sometimes nice to see your emotions mirrored on the screen. Moreover, you really don’t have to think to keep up with the story, which is always a good thing in these situations.

This brings us to the last genre of the list and my personal favorite: Disney Movies. I am quite favorably biased towards this category as it has been my salvation on numerous occasions. These movies are filled with childhood memories, solid morals, clever lines that used to slide right over our heads, straightforward plots, and happy endings. Unfortunately, I must admit that if you are in need of something strong to pull you out of your misery, these movies may not be the best choice for you. While they are created with the goal of holding a child’s attention, that power is somewhat lessened when you know exactly what is going to happen. Disney movies are akin to a cup of  chamomile tea or a glass of wine. Perhaps not the most exciting and not all that strong, but they will make you feel nice and warm inside which is sometimes all you need.

I hope that this helps when the time comes and I sincerely hope that you won’t be facing this intimidating movie decision for a while. When a sick day does arrive, I wish you the best of luck, from my couch to yours, in both your recovery and choice of entertainment. The good news is, if your first selection doesn’t end up being perfect, you can always choose a second one. And another one after that. After all, you have all day!

Stages of the ER

Recently a number of people in my life have been spending time in the Emergency Room. I happen to be quite well acquainted with the hell located behind those constantly sliding doors (an occupational hazard of the chronic illness life), but it was interesting to hear tales from a new perspective. While their reasons varied from sprains and head injuries to appendicitis and chest pain, their experiences had quite a bit in common. They all went through a harrowing emotional journey, cyclical in nature and unique to the ER experience. I have come to realize that this experience is universal to all those who dare approach the triage desk, and have compiled a list of the five stages that occur in a constant, never ending loop.

Stage 1: Denial

Whether or not we have had prior experience with emergency care, the automatic reaction to a serious injury or ailment is to insist that we’re fine. There is a knowledge buried deep inside of us that warns us away from the ER at all costs. It is only after an extended period of dealing with pain or malaise coupled with the incessant demands of family and friends that we finally concede defeat and, forgetting to pack our phone charger, arrange for transportation. This stage can vary in length from a maximum of two weeks as our symptoms worsen to a fleeting thought if an ambulance is called when we are unconscious. The average time span, however, is 4 hours.

Stage 2: Panic

We may have convinced ourself that there really wasn’t anything to worry about and we are just here to get ourself checked out and appease those nags around us, but the minute we walk into the ER all of that changes. As the doors close behind us we are overcome with panic. We stumble to the triage desk, trying to control our breathing as we choke out what is wrong, desperately trying to communicate the urgency. When we are told to sit and wait we can hardly sit still and focus on calming ourself while wondering what our rapid heart rate means. We are called to the triage desk much sooner than expected and, uttering a hurried goodbye to whoever accompanied us, we rush over, positive that the short wait means bad news. We can barely get through the administrative questions, mixing up our phone number and address and dropping our health card twice. As the blood pressure cuff is placed around our arm and the thermometer under our tongue we hold our breath, letting it out only when the smooth plastic of the hospital bracelet is circled around our wrist.

Stage 3: Frustration

As we are sent back to wait on the wrong side of those dreaded sliding doors we grow confused. We thought that once we passed the doors we wouldn’t be coming back without some information. We feel a flash of anger and make a cutting remark to our poor companion. We sit down, but are on the edge of our seat. Pulling out our phone we make a Facebook status about how much we hate hospitals, and start complaining to about 8 people at once. Or we direct whoever is with us to do it and give us a play by play. Whenever we hear the crack of the intercom announcing that someone’s name is about to be called we quickly gather our things together and half rise every time the first syllable is the same as ours. This is followed by an exasperated huff as we look around the room to check if anyone was watching us. As time goes on these reactions become less and less energized.

Stage 4: Boredom

The phone is almost out of charge. We cannot bear to say another word to the person who accompanied us. We become increasingly aware of the cacophony of beeping that grows louder every time the doors separating the waiting room from the rest of the hospital open. Our eyes have adjusted to the fluorescent lighting that transports us to a dream world where everything is at once sharply focused and horribly muted. As we stare around at our fellow comrades in the waiting room we forget our earlier discomfort when we wondered whether they were contagious in any way, and we vaguely notice the same glassy eyed look on every face. We react to the intercom with only a slight turn of our head, our boredom overcoming any thoughts about why we are there in the first place.

Stage 5: Relief

The intercom crackles and a name is announced. We think we misheard it until our faithful companion nudges us out of our stupor. Our name has been called! We move slowly, limbs aching from lack of use, as we frantically try to make eye contact lest they call another name. In that moment we are flooded with relief, and when we are led to our very own cot we almost cry with joy.

Alas, this sense of happiness is short lived. As we change into our hospital gown, we start to slip back into denial. We wonder if we perhaps imagined the symptoms or were exaggerating. And we would hate for the doctor to come by and say that there’s nothing they can do. Maybe we’ve wasted everyone’s time by coming and we should just go. As we start to argue with ourself we are reminded of whatever convinced us to come in the first place. We then slip once more into panic mode as we wonder what the doctor will do and say. As the clock ticks on bringing no knock to the door, our frustration mounts as we wait for the doctor. The cycle continues as we wait endlessly for the doctor to arrive. The process is then repeated for every test and specialist, and appears to end only with the final relief of being released. As we feel the cool night air on our face at last many of us are seized with the realization that this trip hasn’t actually solved our primary issue. The panic of that thought gives way to a burst of frustration as we realize that we wasted an entire day, probably lowering out immune system in the process. We vow to never go to the emergency room again. But we will. We know we will. The cycle never ends.

Here goes

Wow, first blog post. You know, I’ve actually been thinking about what to write as my entry to the online world for months now. I have created a very long list of subjects for later posts, but I’ve struggled over this one rather a lot. Some may call that procrastination. I prefer to think of it as a delay due to potentially flimsy reasoning. But anyways, here we go. I guess I should start by explaining the name.

A brownie is a stand alone dessert. It doesn’t call for anything extra. Now imagine. You’re mixing your batter, and go to put that dash of salt in. To your horror, the top of your salt shaker hadn’t been screwed on properly, and as you rush to righten the shaker you notice that far too much salt has made it’s way in. Now at this point it would be tempting to give up on the batter as it’s clearly been ruined and will probably only serve as a solid representation of your tears of frustration. But you have no choice. You can’t show up to the bake sale empty handed and you don’t have enough eggs to start a fresh batch. As you begin to experiment with the dough it slowly dawns on you. With careful attention to the balance of flavours, making sure not to overdo anything, you can end up with something fantastic. An unexpectedly delicious treat with a twist.

That’s pretty much how I see life with chronic illness- a heavy dose of something that is not wanted, needed, or expected; a need to be extremely careful, playing a delicate balancing act at all times and the potential for something wonderful to come out of it. Something that couldn’t have happened without it. But here’s the thing. You don’t need to have a chronic illness to have experienced a dump of salt in your life. We all have some and there are so many different kinds, from table salt to kosher salt with each grain being unique. And in a way, that’s kind of great because we’re all special, but we are all together in that.

This blog will focus on the realities of life with a chronic illness because that’s a salt I know well and I believe it’s a salt that people are particularly afraid of talking about. But it is not just for people who have experienced chronic illness. It’s for everyone to learn about each other, to understand some of the things that can go on behind a smile and to get comfortable discussing them. We all have our salt, and it doesn’t help to tiptoe around it. But if we can acknowledge and work with it both within ourselves and each other – well, I don’t actually know what will happen, but hopefully something good. The plan is to find out.

That’s my not-so-well-hidden agenda. Now all that’s left is for you to find out how I’m going to accomplish it. Fasten your seat belts… it’s going to be a bumpy ride!

Oh, and for future reference, I go by ‘specially abled’. While I may currently be dealing with paperwork that says ‘disability’ at the top, I would like to clarify that I am not bereft of ability. I have lost a number of my previous skills, such as walking in a consistently straight line, but I am discovering and developing a unique skill set that comes from my experience and body itself. It’s special. I’m special. And now it’s on the internet so you should probably believe it.