Passing Time

Time has been slipping away from me. At night, I glance up at the clock and see 4 AM glowing back at me. I arrange to meet a friend, and realize that it’s been over a year since we last spoke. I look to the future and see that my time here in Vancouver is dwindling, almost gone. And somehow, I didn’t notice it happening.

I think this warped sense of time has something to do with an overarching feeling of static. I often look back to the past couple of years and feel that my life has been put on pause. That I’ve been treading water, waiting. Waiting for the waves to still, for my strength to return, for intervention of any kind.

I have worked hard, certainly, I have fought, but it has felt as though I’m fighting to keep breathing. Not fighting forwards. Not moving forwards.

And now, I see an end date in site. I am planning to enter a university program next year. A life. Commitments.

I feel ready. Well, that’s not quite true. I feel confident that I have learned what I can from my current set up. I have learned how to manage flares, I have learned important steps to incorporate into my daily routine. I have learned the skills to manage my condition.

I also feel terrified. I want to move forward with my life. But once I press the start button, there will be no chance to regroup. Deadlines, responsibilities, and schedules will once more become regulating features in my life. And I am desperately trying to prepare myself, to create a life that I can succeed in, before beginning.

These thoughts have been floating in my mind all week as I wrestle with time. Part of me wants to stop the clock, and another part is waiting impatiently in the future. And so the hours, months, years tick by, unnoticed, constantly surprising me.

But then, a few nights ago, as I splashed water over my face, I glanced up at the mirror. I saw a line across my forehead. I immediately paused and relaxed my facial muscles, wondering if it would disappear. It didn’t. I brought my fingers up, stretching the skin, but the thin dark line remained, staring back at me.

And I must say, seeing this wrinkle on my forehead made me incredibly relieved. Because wrinkles are created by life. By emotion. Wrinkles are created when one’s face moves over and over creating an emotional map. Wrinkles are scrawled markings from life itself, certifying that one has indeed, lived.

And while it feels like I have been stationary these past few years, my body tells a different story. My skin proves that I have lived. That I have felt so much, my emotions were carved out onto my forehead.

I have experienced these past few years. I have lived a different life. An unexpected life. But I have lived every day of every year since I began my adventure with chronic illness.

Maybe it feels like treading water because I have been out in the middle of the ocean, where everything looks the same. Maybe it’s an optical illusion. Or maybe not. Maybe I’m just tired.

Regardless, I guess I don’t have to worry about restarting. There never was a pause. I am simply entering a new passage. A chance to learn something new, to add to the fold in my skin.

And I’m almost there.

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Exposure

A wonderful friend sent me a link to a TEDx talk by Dr. Rita Charon. The talk focused on narrative medicine, rephrasing a physician as an absorber of stories. I found the talk, and the speaker herself, fascinating, and have been slowly digesting the various concepts and ideas she touched upon over the past few days. One phrase in particular has been haunting my thoughts.

‘Illness exposes… You’re down to the floor of who you are.’

The minute those words passed her lips, I paused the video, rewound, and listened to them again. Exposed. Such a precise and perfect word choice for something so difficult to grasp.

I’ve heard a lot of people express a similar idea, in different ways. Some speak of feeling part of themselves stripped away. There is a violence to the language – an unwilling and painful loss. I’ve certainly felt that way, used those words. When I am brusquely examined, when I wake up one morning with new pain and spend hours convincing myself to get out of bed. When an old friend averts their eyes. I feel stripped. I feel that something has been taken from me. And it feels violent.

At other times, the word vulnerable springs to mind. Perched on a hospital bed, fidgeting with the thin covering of communal fabric that doesn’t quite reach my knees, sharing personal details with an impersonal stranger, and hoping desperately that they can offer some reassurance. All of my hopes and dreams, my secrets, are laid out in someone else’s hands. There is no privacy.

After thinking about this for a while, I began to wonder what my own illness revealed. Personality quizzes rank high on my list of guilty pleasures, and I couldn’t help but feel a little excited. Perhaps this was an opportunity to learn more about myself.

This week, I stumbled. No, truly, this month I stumbled. This week I crashed. While my strength has been improving overall, this month ushered in a bit of a setback. I was prepared, knowing that no recovery is linear, and did my best to keep focused on my goals despite my body’s reluctance, but I would be lying if I didn’t admit to a few days of minimally diluted misery this past week.

Overall, however, I was amazed at how easily I integrated the flare into my life. I only spent three of the days completely glued to my couch, the rest I managed to balance with the addition of daily naps, adjusted therapies, precise planning, and sheer perseverance.

I was quite ill. I was in pain, and extremely fatigued. I still am. I had no energy to spare on pretense – I was at the point were I had to bribe myself to get up and make myself food. Or shower. The ideal opportunity to learn more about myself, practically gift-wrapped.

And perhaps I did. Perhaps I was enlightened by examining what I chose to do compared to what I forced myself to do. Maybe the fact that I received surges of energy when faced with the prospect of company, allowing my body to leap off of the couch and hurriedly cleaning either myself or my apartment – maybe that’s a sign that I am externally motivated. Or maybe that’s just human nature. A watered down protective instinct. I really don’t know.

I do know that I was exposed this week. While I was largely successful in keeping my struggle from impeding on my life, it was simply too exhausting to hold all of my barriers in place. So those who saw me this past week, saw me. They heard what I was truly thinking, they experienced my unfiltered self. They heard my fears, my frustrations, and my instinctive reactions to their conversation. I was at my most bare.

But then something special happened. One friend brought over some bath bombs, after I whined about wanting to reward myself after completing the arduous task of living through the day. Another brought me some books from the library and dinner. Yet another picked up some cleaning supplies for me. And I had amazing conversations with all of them, and many others for that matter, talking for hours, leaping through topics with no segues or explicable progressions of thought. And it was wonderful.

Being laid bare sounds terrifying. But when we are faced with our own fragility, our lack of control over our bodies, there is no choice – we are exposed. But sometimes, maybe that’s not so terrible. Maybe it doesn’t always go hand in hand with violence or vulnerability. Maybe sometimes, the removal of pretense and expectations- our metaphorical clothing, can give us a rare opportunity to connect with honesty. Maybe simply being ourselves is not so terrible after all.

Visibility

Visible or invisible – which do you prefer?

I once saw this question asked in an interview directed towards a specially abled individual. It refers, not to a cloak (disappointingly), but to the visibility of a medical ailment. Someone with a broken leg encased in a cast sports a visible injury. A skin disorder is visible. Paralysis is visual, as are spasms and tremors. But there are many conditions that leave no external mark. Mental illness, chronic pain and disease can be entirely internal. You may not appear sick at all.

At first glance the line between a visible and invisible condition is quite clear. You fall under either one category or another. But someone with no physical markers for their medical state may use a wheelchair, making their condition visible. Braces bring visibility as do walkers and canes. Hearing aides can be visible or invisible, depending on the situation. And many people can fluctuate between the two categories, depending on which tools they need to get through the day.

My condition is invisible. Well, it is invisible to a stranger. Those who know me well might notice my drooping facial muscles, my unsteady gait, and my slurred speech. But even on my worst days, a passerby will most likely assume that I’m drunk as I stumble along.

My condition is invisible. But it has been forced to reveal itself for the past year. While my tinted glasses may masquerade as a somewhat questionable fashion statement, my mobility scooter and wheelchair do not. For the past year, my personal struggles have become overwhelmingly public.

At first I hated it. I felt so exposed. But then I got used to it. And while there are times that I crave to meet someone new without my literal baggage preceding me, I am generally at peace with the visibility. Because there are times when it’s really quite useful. Times when I get to skip the line, times when I get offered a seat on the bus. And these moments are bittersweet. The kindness that I receive from strangers come at a cost. But I have adjusted to paying the toll.

This week, when I left to go to the gym, I decided not to bring my walking poles. I figured that I didn’t have very far to walk, and it would give me an opportunity to work on my balance. So I arrived at the gym. There were a couple of people there, and none of them glanced twice in my direction. As I began cycling, I became aware that my eyes were burning. For some reason, I was close to tears.

In that flash of a moment, I felt so small. I knew what I looked like from the outside. Just a person. Strange, perhaps, wearing sunglasses indoors, but it was a sunny day. Someone walking slowly. Someone cycling for a relatively short amount of time, then getting off and slowly walking back to the elevator. No one of consequence, no one to remember. I felt invisible.

Later, when I realized why I had felt so upset, I grew appalled. Why should I care what impression I left on a couple of strangers? Am I really that self-centered? Do I crave the attention?

I decided to experiment. I was meeting a friend for an evening out, and I dressed up. I styled my hair, carefully donned make up, and wore my tinted contacts. I did not look sick. Not in the slightest.

I still had to bring my walking poles. I debated bringing only one, or perhaps not bringing them at all. But unfortunately, I am simply not strong enough for that at this point. I use the poles for balance, and by the end of an outing I often lean on them for support. But I still felt wonderful. I felt normal.

After wandering around for a while, we arrived at our destination. And faced three flights of stairs. There was an elevator, but someone had to come down from the third floor with a key in order for it to be used.

I stood there, waiting, as my friend ran up to fetch the key and others passed by on their way upstairs. Everyone that walked past smiled sympathetically, and most said hello, but that feeling of being small crept back. I was stuck at the foot of the stairs. Waiting.

There are differences between a visible illness and an invisible illness. Invisibility means that I can first make a friend, and later explain my medical situation. It means that strangers won’t give me sad smiles. But it also means that when I step on a bus, fatigued and in pain, but young with a healthy appearance, no one will offer me a seat. It means that when I attend a ceremony and am asked to rise, remaining seated will earn me eyes shoving against the back of my head.

That being said, it seems that ultimately, whether visible or not, the results are the same. First impressions may vary, but not how I feel observing them. I felt small because I am still new to this life. Not because I missed my ‘crutches’, or because strangers were overly sympathetic. I felt out of my depth in a new situation. And it scared me.

But that has nothing to do with appearance, nor with how others perceive me. Whether it is shown on the outside or brewing within, if it exists, it is a challenge. The same challenge with different packaging.

Visible or invisible? Kind of a trick question.

Evasion

It all started with a tiny lie. Really, more of an evasion. I was sitting in a cab, quite late at night on my way home, and the driver asked me if I had to go to work the next morning. I said no, and then it happened. He asked me where I worked that I was able to get a Monday morning off.

This was my opportunity to explain that I didn’t actually have a job. It was my chance to raise awareness, however minute, for the reality of chronic illness and to be open and honest with a stranger. It was my chance, and yet I sat there mute for a full 10 seconds. And then I stuttered out that I worked in music.

Immediately, a wave of guilt crashed over my head. I pride myself on being an honest person, if not completely open. I do not like to tell outright falsehoods. I quickly assuaged my guilt by convincing myself that this was a singular event. He was probably just being polite, as was I – it was too much to get into so late at night. And, truthfully, my work experience does lie in the field of music.

I thought that was the end of it, and I chose to avoid thinking about it. I had big plans for the week. I was planning to attend the recital of two wonderful friends and performers, which meant that I would be returning to my old home for the first time in months.

Wednesday rolled around and after layering on make-up and packing up my medication, I was ready to go. I arrived at the music building and experienced the welcome that I have come to expect. A mixture of open arms and averted eyes.

I had worked very hard to prepare myself, both emotionally and physically, for this reunion. And for the most part, it worked. I had a wonderful time. I caught up with friends, and enjoyed some truly spectacular music. But there was one question that I was asked over and over again that I had not adequately prepared for. Such a simple, well intentioned question, but the minute it was voiced I felt myself shrink, caught in a spotlight, staring at my reflection, and hating it.

‘What are you up to these days?’

I know, it’s ridiculous. I mean, I write about it. I think about it. It’s one of the most natural questions in the world to ask someone that you haven’t seen in a while. I have no problem with the question itself.

My problem is that I struggle to find an answer. Lately, I have been making great strides in my physical rehabilitation. I have increased my strength and endurance, which makes me immensely proud and happy. But in my day to day life, that translates from me struggling to make myself a meal once every couple of days, to being able to cook for myself on a fairly regular basis. It means that my kitchen is cleaned more frequently. It means that I have started reading again as the words don’t blur out of site before I get a chance to become invested in the story. And these small victories are monumental to me. Worthy of being written about. But for some reason, I struggle to speak the words. They stick in my throat and feel like inadequate when I’m facing someone that I used to conquer mountains with.

And so, on Wednesday, I found myself embellishing. I emphasized the online course that I am taking, even though it’s really just a certificate. Even though I only look at it every couple of days.

I talked about this blog as well, even though I could see smiles falter as I tried to stretch what they already knew.

And as discomfort grew on all sides of the conversation, I would rush to change the subject, to become the questioner myself. And I found myself imaging what I could have responded.

I could be participating in a study of the effect of TV on young adults.

I could be writing a novel.

I could be training a group of monkeys for the circus.

I could be getting flown around the world as a tester for accessible travel.

I could be starting my own company selling bumper stickers with witty slogans.

I could be the inspiration for a new Disney princess, currently in discussions as to whether I’ll play the role myself.

My imagination grew as I sat there. After all, there are so many things that I could be. So many possibilities, so many lives that I could be living. But, while it’s fun to dream, the reality is that I’m not that girl. Not right now, anyways. My days are simple and oh so complicated. And as tempting as it is to lie, or to evade, the problem isn’t that my answer sounds hollow. The problem is that I am reluctant voice it.

So now, I apologize. I’m so sorry. I’m sorry to the cab driver that I deceived. I’m sorry to my friends. I’m sorry that I tried to alter the picture.

I may not be doing anything spectacular, but I am living a life. My life. And that is enough.

Social Discomfort

Throughout this past week, I have found myself continually surprised during social interactions. The surprise has been mild, shocking only in it’s frequency.

On Monday I went swimming. I had been completely alone, but as I was finishing up a man walked into the pool area. I stalled, hoping that he’d use the sauna or steam room which would allow me to exit the pool without an audience, but to my dismay he sat in a chair directly opposite from the stairs. Now I should be clear that in my case the change from water to land is not remotely graceful. My limbs may resemble human anatomy, but when I am in the water I’m pretty sure they become fins, and when I emerge it is without Ursula’s magical, if manipulative, abilities. Unfortunately I could not stay in the pool indefinitely and, essentially crawling, I emerged from the water. Turning around on shaking legs I plastered a smile on my face with my chin raised, only to find that the man had deliberately turned his head away, giving me privacy. He did not turn back until I was gone.

On Tuesday I went to the gym. After I finished my workout I slowly got off of the machine, a little unsteady. As I leaned against the wall for a minute, finishing my water before bending down to pick up my walking poles, a lady on another machine asked if I needed any help. I smiled and thanked her, but refused, saying that I just needed a minute. I then slowly reached down, only to hear her exclaim in frustration ‘I can’t watch this!’, and she leaped off of the elliptical, grabbed my bag and poles, and cleared a wide path for me through the gym.

These two situations were not isolated incidents. Multiple times this past week, strangers and old friends have acted differently than I expected them to, sometimes in acts of kindness, sometimes not, and sometimes following another category entirely such as a stranger who performed magic tricks for my friend and I as we sat catching up at Granville Island this afternoon.

And that’s wonderful. After all, in my last post I claimed that I wanted change. Is that not what the unexpected is?

And yet, after most of these encounters I found myself feeling a little strange, a little despondent. It took me a long time to figure out why. At first I thought it was because these interactions magnified my condition and its reach, how it snaked its way even into my engagement with strangers. I used to feel quite confident in my ability to gage a social situation, however, this week I have made a number of mistakes. And it upset me. But can I really fault someone for an unpredictable response to this new presentation? And can I fault myself for my sensitivity to these different reactions?

Perhaps there is no blame. Perhaps no one is at fault. Perhaps there is simply discomfort. After all, I have been essentially removed from the world for over a year, taking taxis and socializing only with my close friends and family. I am out of step with the world. And the world is out of step with me.

I think movies tend to give a slightly unrealistic expectation of a come-back. On screen, the world stands in awe and slight intimidation for 24 hours as it witnesses what was previously thought to be impossible, and then by the next day everything has settled back to normal. But life, or at least my life, doesn’t seem to work like that. It is a slow and gradual process. I feel a layer of rust covering me that squeaks and masks simultaneously, and I’m not sure that I can scrub it off.

But maybe it’s not about turning back time, or making things feel like they once did. Maybe it’s about learning from copper. Maybe it’s about the process. Maybe it’s about transformation.