For over two years I have been striving towards a single ideal. Stability. When I was first diagnosed I was told that my greatest challenge would lie in the battle to get my condition under control. Once my body settled into a state that could be considered stable, everything would get a little simpler. A little more predictable. And longterm planning would no longer be a laughable activity.

I have been chasing after this ideal for so long that my imagination has blurred the line between dreams and reality. For the past year or so, whenever I have thought of the word ‘stable’ my mind has conjured images of a mythical land filled with laughter – soft music playing, a pastel color scheme, and gently floating transportation devices.  A life of ease and happiness.

I suppose it’s only natural to fantasize when something seems unattainable. After all, I have been living with what can be categorized as an unstable condition for over two years now. Approximately 800 days of life made predictable only by the constant struggle to complete basic, every day tasks.

But suddenly, or perhaps in a manner so gradual I have only now begun to notice, my life is changing. I have had two good weeks in a row. Not perfect. Not healthy. But I have managed to stay in control for their entirety.

I have found myself wondering when precisely one can be deemed ‘stable’. Is there a certain amount of time that must pass without incident? A certain level of stamina to be achieved? Does it all come down to predictability? Or is it strictly a medical term determined by fluctuations in heart rate, blood pressure, and brain activity?

On Thursday I rested on my couch after walking over 1.5 km. I listened to my dishwasher chug away as my eyes travelled over my freshly vacuumed floor and piles of neatly folded laundry. I found myself wondering – is this what stability feels like? Is this what it feels like to be normal? To be in control?

And for a moment I just sat there, filled with contentment. Simultaneously thankful and very proud.

But then the moment passed. My smile faded and I couldn’t figure out why. After all, I had been working towards this moment for the past two years. But then I realized – I was bored. Not because I had energy to spare. I didn’t. I was exhausted. But I had achieved my goal, and was left feeling empty. Feeling restless.

And since then I have plotted and I have dreamed. I have come up with ideas, plans, and so many goals. I have made lists. I have been searching for a new purpose with excitement and a strange hint of desperation.

Perhaps my only marker of stability is a need for change.


The Impact of Observation

I struggled to find a topic for this post. I thought that with so much going on in the world this week I would have a wealth of material to draw upon. The Olympics and Valentine’s Day both provide plenty of opportunity for reflection and opinion, yet I must say, this year I have barely noticed their occurrence.

I love the Olympics, truly I do. I feel proud when I hear the Canadian national anthem and I enjoy hearing stories of sportsmanship. But this year, the games really haven’t impacted my life. I missed the opening ceremonies. I watched a couple of events while sorting my laundry and was perhaps inspired to persevere despite my aching arms as I witnessed our athletes pushing their bodies to the limit, racing down snow covered mountains. But so far, the games haven’t ignited any strong opinions or emotions within me – the Olympics have made my week no less ordinary.

Moreover, Valentine’s Day, an extremely controversial holiday that tends to inspire alarmingly high rates of chocolate consumption, passed almost entirely unnoticed in my life. In fact, I had actually mixed up the date and been under the impression that the 14th was on Thursday. I realized my mistake on Friday itself when I saw a number of bouquets pass beneath my window and watched my Facebook newsfeed fill with a variety of statuses ranging between sarcastic, entertaining, sickly sweet, and touching. I did get a couple of laughs from some Buzzfeed articles, but other than that, there was nothing special about the day.

And yet, I must say, I had a great week. It was better than great. It was extraordinary. This week, I made a sizeable dent in the laundry pile that has been steadily growing for over a month. This week, I went for a walk and managed to make it all the way to the water by myself. This week I discovered some new dreams and made plans to achieve them. This week, I sang, and when I stopped it was not because I was forced to by pain. This week, I applied for university programs.

All week I have tried to figure out why. What was it about this week that enabled me to push that little bit further? Because if I can find the special ingredient, maybe I can incorporate it into every week. Maybe, just maybe, I can make this my new norm.

Pharmacologically, I can perhaps explain this sudden upswing in energy. I recently reintroduced a medication back into my daily line-up. A perfect explanation. Yet for some reason, I find it lacking.

I do think that the medication is helping. The specific intention of the drug is to help reduce my chronic migraines as they have recently become more of an issue. Since restarting the medication I have been experiencing less migraine headaches, although they have certainly not been eliminated. And that’s wonderful. After constant, intense pain, any lightening of the load feels heavenly. But I have experienced similar situations before. And I have not felt the same inspiration and motivation that I have felt this week.

Maybe it’s a coincidence. Maybe it’s simply the right time. But I can’t help noticing that my extraordinary week has arrived just as the Olympics transcend their current location and spark international messages of equality, pride, and love – perhaps the very words that can be used to define Olympic spirit itself. As the #neknominations on my Facebook newsfeed are gradually outnumbered by #feedthedeed videos. It was Valentine’s Day on Friday, and to borrow a line from one of my favorite movies, love actually is all around – for now at any rate.

I haven’t directly taken part in any of these acts of love. But witnessing them from a distance has not isolated me. It has not made me feel lonely or prompted me to bury my woes in chocolate. It has warmed me. And I have had an extraordinary week.

Achievement Level Unlocked – Restaurant Style

This week I did something daring. I took on a challenge and succeeded- achievement level unlocked. This week, I made plans to see a friend and I followed through.

Now, this may not seem like a big deal. After all, despite my constant declarations, I have not become a complete hermit since the beginning of my physical apocalypse. I have gone out, and friends have come over to my apartment. But this time was different. I didn’t merely offer a vague suggestion that we should meet up at some point. I didn’t agree to an existing plan. I myself suggested to a friend that we go to a restaurant. I even chose the restaurant. And I did this while caught in the grip of possibly the world’s most vengeful migraine.

The second I made this decision, I became a war general. Strategy was the first order of business as I rushed to create a schedule. I lined up my medications like troops, timing their entrance into my system perfectly, ensuring that their maximum impact would occur when I needed it most. I feverishly researched menus and maps online, and debated over my armor, trying to decide whether walking poles and braces would be necessary or cumbersome.

All things considered, I put as much effort into a simple dinner with a very understanding friend as I would into a first date. Probably more.

There are a number of similarities between an outing on a rough day and a first date. Generally speaking, one of the main elements of both of these events involves an attempt to come across as in control. Perhaps more so than one may actually feel. This requires an immense amount of strategy to be successful.

For either of these situations, the choice of venue is of the utmost importance. Where you are going will influence all future decisions. It is the foundation of your carefully constructed house of cards. As I happened to go to a restaurant this week I will focus my observations on that particular setting.

When choosing a restaurant there are a number of factors to be cognizant of. The first, and most important, is the atmosphere. The atmosphere of a restaurant can include many variables including the lighting, size, decor, and entertainment. On a date you may choose a romantic setting with close quarters and candlelight, but when your skull and brain are locked in combat that setting may not be the best choice. Yes, dimmed lighting goes well with a headache, but when a room is dark every light appears exponentially brighter. Which makes candlelight akin to a flickering monster, constantly stabbing you in the eye. A spacious and evenly lit restaurant may be the way to go.

The next item to consider is the restaurant’s popularity. Reservations are often made for a first date. Perhaps they are made to create a classy first impression as you to waltz in and get served immediately, or maybe the motive is to avoid potential awkwardness while waiting side by side in line. Whatever the reason, this pressure to avoid the wait is intensified for someone who is unwell. It is my belief that torture is defined as dragging yourself to a restaurant while your body begs to return to bed, and then having to stand and wait for 40 minutes, perhaps with a screaming toddler latched to your side, planted directly in the line of fire from the kitchen to the dining room. And then, when you are finally offered a table, having to eat amidst so-called chatter reminiscent of the sound Habs fans generate over the course of a game. Prior research is integral to success in this category. When trying a new restaurant, I suggest going so far as to call in advance.

Finally, the menu. Astonishing as it may seem, the menu is of the least importance when choosing a restaurant. With such varied selections and the ability to doctor meals, you should be able to find something satisfactory wherever you end up. If you’re like me and agonize over simple decisions, checking the menu before a date may be a very good idea for the sake of ease and comfort. If you’re like me in other ways though, and have a severely restrictive diet, checking the menu in advance is quite important as it allows you to plan and adjust your food for the rest of the day accordingly.

After the restaurant itself is chosen there are numerous other decisions to face. Clothing, accessories, transportation, timing – the list goes on. The fight for social interaction is long and hard, with many battles to be waged. But I must say, this particular battle was well worth it. I had a wonderful evening with a wonderful friend. And I would do it again in a heartbeat. Or in 24 hours. After all, I need some time to strategize.

Doctor-Patient’s Anatomy

I just marathoned the first few seasons of Grey’s Anatomy. I wasn’t feeling well and I used to really love the show, so I figured it might be interesting to watch with my newly developed understanding of medicine and hospitals. And if the medicine aspect was really terrible, I could always inflate my ego by spotting the inconsistencies.

As it turned out, the medicine was not what drew my attention. It was the attitude of the doctors towards their practice. They thrill over the possibility of car accidents and gunshot wounds, the more drastic the injury, the happier they are. Furthermore, the patients are portrayed as being so much less than the doctors, from both the show and character’s perspectives. They are painted as unreasonable, unintelligent, and overly emotional. Maybe, if they are lucky, they get to be a vessel through which the doctors can discover or understand something new. They are nicknamed and ridiculed.

Now, I understand that this is a TV show. Most hospitals are not filled with incredibly attractive doctors working in the same ward, entangled in various incestuous relationships (which just so happens to be the main reason that I continued to watch). But if this dismissive perspective towards the humanity of a patient was strictly fantasy, it would not have made me so uncomfortable and upset.

I, in the medical world, am known as a zebra. My hoofbeats have a more exotic cause than expected. As a result, when I go to the hospital students are called in to look at me. I am extremely photo sensitive, but still, at least 5 different sets of eyes must peer into mine with a bright little light for the sake of learning. Then, they proceed to debate what they see, talking literally over my head.

When a doctor delivers me news, on the rare occasion that they actually have something new to say, they tell me the medicine. Nothing more. No acknowledgment that this may have a drastic affect on my life. And if I have any questions I had better ask quickly because I’m pretty sure doctor’s offices are equipped with time bombs that go off if the rooms are occupied for even a minute after the scheduled end of the appointment.

It’s dehumanizing. It’s frustrating. It makes me want to scream that this could happen to them too, their child, their spouse, their parent. I want them to want me to get better, to fight for me, to care about me. I mean, I’m not looking for friends. Friends don’t give friends rectal exams, or at least I really hope they don’t. But I would like to know that they are on my team, actively rooting for me. Because how are they going to help me, if the answer isn’t simple and they aren’t feeling motivated to find it?

Then again, even though it’s my life, it is also their workplace. And I have yet to encounter a workplace free of gossip and competition. The Residents, fighting so hard for a chance to prove themselves, are not so different from young singers, desperate for a role. And every performer I know gets excited about their first big role, sometimes going a little crazy in an effort to get there. Is it so different, celebrating the chance to examine a rare medical phenomenon? Or feeling let down when you have put in years of sleepless nights and are given a surgery you have performed so often it has become routine?

That doesn’t fully account, however, for the complete dehumanization of patients, both in the real world and on the television screen. One character outlines the situation perfectly when, after updating the families of crash victims, he bursts out, ‘I’m not good with people. They should just let me stick to patients’.

It’s easy to be affronted by this. I know I was, and a part of me still is. After all I, through no fault of my own, I am stuck passing the time sitting on crackling paper in a tied up blue gown, being examined as a collection of body parts. I do not deserve to feel so objectified, no one does. Especially not when I am at my most vulnerable, afraid and in pain.

Moreover, the show portrays the doctors who care about their patients, the ones who get emotionally involved, to be in the wrong. From an incredulous raised eyebrow to official chastisement, it is clear that the doctors must make every effort to remain detached. At first I didn’t understand it. Isn’t it better to get to know the patient? To understand their life, to gain their trust, to put them at ease and get them comfortable sharing with you?

But then I realized. Being accountable for someone’s health is an immense responsibility. It is a weight, a burden to carry. And if you care, if you also bear the burden of that person’s comfort and happiness, that adds to the weight. And if you do the same for their family, and then multiply that by the hundreds of patients that you will see throughout your career, you will be crushed. No human can carry that much weight. And I need my doctor to stand tall. More than that, I need them to tower.

Doctor-Patient care is a minefield. The system isn’t perfect. I don’t even think it’s all that good. But I do understand it. And, strange as it may seem, Grey’s Anatomy has helped me do that.