Twists and Turns

It’s been a common theme throughout this week.

From conversations commenting on ‘the old me,’ to thoughts on how my life might have gone, I’ve spent a lot of time thinking about how chronic illness has affected me.

I think a big part of it is that I am about to embark on a journey to London. When I was very young I lived there with my family, but I haven’t been back to visit since we moved away approximately 15 years ago.

I have been waiting for this trip, planning and orchestrating it for years, and it’s finally here. We leave tomorrow.

But the thing is, there’s so much that I want to do and see there. So many plans and lists and dreams that have accumulated over the years. And now I’m going in a wheelchair, with a neck brace, unsure of how the flight will affect me, and only anticipating being able to leave the apartment that we’re renting once a day if I’m lucky.

I won’t be able to explore the city myself, as an adult. Everywhere I go I will need a companion, I will need accommodation. And even that might not be enough.

But what should that matter, when I’m going to London? I’ll still be there. I’ll still see a couple of things. I’ll still be having an adventure with my family.

It’s just not the way I thought it would happen. It’s not the trip I’ve been dreaming about. It’s not how it might have been, how it should have been.

The trip isn’t the only thing making me yearn for my past self.

This weekend, my old classmates and friends from the UBC Opera Ensemble put on a fabulous show. I watched in on the live stream and was completely blown away by how much they have grown, how talented and professional they have become.

In the week leading up to the opera, however, I couldn’t help but feel a bit miserable when I thought of the upcoming show. It wasn’t exactly that I was jealous of my classmates opportunity. It was that I felt I would have been on that stage too. That I should be backstage, taking pictures in costume with them all.

These events combined with a couple of mentions of ‘the old me’ in conversation, or ‘back to normal,’ have had me thinking about myself in some very strange ways.

I have felt separate from a ‘previous’ life. I have seen two paths distinctly, the one that my life would, or even should have gone, and the path that has resulted from chronic illness.

And, while I have come to terms with my current life, while there are plenty of things that I enjoy and that make me happy, I have felt a bit mournful over the life that I feel was lost. That was taken from me.

But that whole idea is a bit strange, the idea that a life can be lost, or taken. Because if chronic illness has destroyed a previous path, then so have many other things. When my parents decided to move our family to London, my childhood was altered dramatically from what it might have been. When I began voice lessons at the age of 10, my whole future was shifted as I traded a social life for rehearsal, practice, and rest.

There have been so many pivotal moments in my life, some only visible in retrospect, but I have never thought of them as eliminating the life I was living and forcing me to live a new one.

They have simply been the twists and turns of my path, shaping my experience and contributing to who I am today.

So why can’t my experience with chronic illness be the same?

Just because my illness is physically destructive doesn’t mean that it is destructive to my life.

I have not been destroyed. I don’t want to go back. I like who I am right now.

If I yearn for the ‘old me,’ it is with an occasional nostalgia, wishing for the body I once had while knowing, deep within my heart, that I would not go back even if I could.

I mean, really, who wants to be 17 again?

And so I am excited for my trip to London. It may not be what I dreamt about, but it’s real, and that’s so much better.

Watching my friends perform brought tears of happiness to my eyes. I still can’t stop talking about how wonderful they all were. I never thought I’d be watching their final year in the program on a screen, but it’s what happened, and it was beautiful.

I can spend my time thinking of what my life might have been, or even what I imagine it ‘should’ have been, but when it comes down to it those thoughts are mere fantasy. Because life is never predictable. There are always twists and turns.

And as Dumbledore says, “it does not do to dwell on dreams, and forget to live”.


Professional Patient

“So, what are you up to these days?”

The question comes packaged in different wordings, with varying degrees of interest. Sometimes it is asked outright by older acquaintances at social gatherings. Sometimes it’s asked by a friend, looking to catch up. Sometimes the question is not actually spoken. It simply hangs there, waiting to be addressed, as chit chat over the chilly weather trails off into awkwardness.

We like to know each other’s occupation. It gives us some firm knowledge about the other person and a potential way to relate to them. For example, a lawyer clearly went to law school – maybe they know our second cousin once removed! A journalist must be well informed on current events and might hold an exciting debate with us. A doctor can give us free medical advice on that weird rash we have, because it’s totally acceptable to ask them about it at a party. A musician can talk about their favourite composers and even provide the entertainment – again, for free, because they can!

Sometimes, relating to each other on occupation alone can be damaging. Sometimes, someone might want to have some time off work to get to be themselves. We tend to associate a fair bit with specific professions, and that’s not at all fair to the individual we are talking to. A lawyer doesn’t necessarily have tough skin. A used car salesperson isn’t necessarily sleazy.

But it’s better than nothing. It’s a way to start a conversation, to get to know a bit about the other person – at least what they spend a fair amount of their time doing. And as long as it’s not followed up by requests or assumptions, it’s a pretty harmless question.

Except for when it isn’t.

Currently, my peers are in a state of flux. Just graduating, unsure of what they want to do, unsure of what their options are. And questioning what they are up to and what their plans are should be officially banned from public discourse.

It’s simply not fair to ask. It provides all sorts of pressure, and the assumption that they do, in fact, have a plan. Or that they should. A rare occurrence for someone in their early 20s.

But at least most of my peers can say that they’re a student. Or working as a barista while they look for something else. Or travelling. Or applying to graduate programs.

When someone asks me what I’m up to or what my plans are, I have absolutely no idea what to say.

I generally admit upfront that my health is not so good, but I’m quick to emphasize the fact that I’m tutoring a few students, and that I’m writing and working on some new projects. I try to give the questioner something to latch on to – something that can be seen as productive and can qualify under the category of school/work/parenting, otherwise known as an occupation.

And I do tutor. I am writing. I have been working on projects.

But they aren’t really how I spend the majority of my time. If I’m to be perfectly honest, they feel like extra-curricular activities. More than a hobby, but not the main course.

No, I spend my time another way. I have another position. An all consuming job that is the main source of my stress, that eats up most of my time, and that I have become remarkably good at.

I think it’s about time I admit it.

I am a professional patient.

As a professional patient, I have a very flexible schedule. I have to. I can be called in for tests or appointments with very little notice, and must be able to travel back and forth to a variety of locations at the ring of my phone.

I spend a fair amount of time doing administrative work, although admittedly, when things get overwhelming I do delegate (thanks mom). Calling to book and confirm appointments, faxing medical notes to various physicians, compiling my test results into a binder filled with colour-coded tabs and updating my medical history requires an immense attention to detail.

Research is also an important skill in the Professional Patient field. Whether it’s looking up medical professionals (from specialists to therapists), crafting the perfect exercise and dietary regimen, or becoming informed about a diagnosis and it’s various complications, it is important to become comfortable with medical terminology and be able to sort through chaos online. It is also a frequent job requirement to gather copious notes in the form of a pain, food, sleep, exercise, heart rate, temperature, blood sugar and/or blood pressure journal, chronicling fluctuations at regular intervals throughout the day in order to ascertain a pattern.

This job is best suited for someone open to a bit of experimentation in the form of mind and body altering substances. It can be uncertain and stressful at times, and is guaranteed to put a strain on your relationships.

It is best filled by someone comfortable enough with their bodies to disrobe in front of complete strangers and be poked and prodded and asked to touch their fingers to their nose repeatedly, followed by squatting. A fine line must be toed, however, as they must also be sufficiently self-conscious to avoid eye contact when the physician is getting up close and personal.

This fine line also crops up in the balance of assertion and humility. Self-advocacy is extremely important, however arrogance can be unappreciated by someone who has gone through rather a lot of training to gain the privilege of managing your healthcare.

Communication under pressure is an important asset. The requirements of the job can occasionally demand answers to rapid fire questions or a condensed, but detail rich history of the past several years. Organization and preparation are the determinants of success in these cases.

As one progresses through the ranks of this occupation, an ability to travel can be a highly valued asset. Flying across the continent to meet a specialist can really advance your career.

This job is so all-consuming that it really is more of a lifestyle. It’s filled with uncertainty, is personal and precarious, and there is no orientation or guidebook to help you out. Some people might devalue it, and tell you that you should go and get a ‘real’ job, but you will learn to brush this off with class as you develop your self-advocacy skills.

Unfortunately, this job is unpaid. In fact, it tends to be quite the financial drain. Some people are required to work second and even third jobs to support themselves while others rely on family or the government.

It can offer some perks, however, depending on your rank and division. Free parking and skipping the line for roller coasters are among the benefits that you may be eligible for, as long as you can independently afford a car or a trip to Disneyland. It also gives you the wonderful gift of giving as you know that you are providing educational experience to future physicians as they take turns examining your sensitive eyes with a bright light and discussing your body with each other using code words while you sit there in a flimsy and extremely revealing paper gown.

This is what I do. I am full-time professional patient. It’s not for everyone, and certainly not what I aspired to be as a child.

But as a wise and creepy old man once said ‘the job chooses the wizard, Harry’. Or something along those lines.

So the next time someone asks me what I’m up to these days, I will be ready with my answer. Because I work way too hard not to get to whine and brag and do all those things people with jobs do.

I am a professional patient.

And I’m damn good at it.

So, what do you do? What are your plans?

What are you up to these days?