Perspective

Friday afternoon, I sat on my couch, looked around the apartment, and marvelled.

I had just returned home from running an errand which had been tacked on to my return after meeting a friend for lunch. Before that I had gone to the gym, and run another errand. 

As I looked around the apartment, I beamed at the clean surfaces and floor. I looked over to the front hall and knew it was free of drying clothes as I had put them all away the day earlier. I looked to the kitchen and knew that my dinner for the evening was already prepared.

I felt completely in control. And I felt proud.

I was also not quite sure what to do. I debated working on an online course, but it did not feel pressing. I knew I had the whole next day available, and the day after that.

In the end, I settled on to my couch and started watching Netflix.

And that was how the first message found me.

It was a completely innocent message, an invitation, a request for a relatively small commitment of my time.

I stared at it for a while, and sighed to myself, thinking that it was not a possibility. I was doing so well, I would hate to ruin it. I needed to be smart. To be careful. I could not take on more than I could handle.

And then the second message arrived.

This one was an email, offering only a meeting, but with the potential to lead to a bigger investment. It was from someone I had wanted to talk to, from a place with which I wanted to be involved.

But while I felt tempted, I already felt a determined disappointment. It would be irresponsible for me to overload myself, as I have done in the past. It would be foolish to let my desires topple the house of cards I have so diligently been building.

I turned back to the television screen, but soon found myself preoccupied and unable to focus.

I couldn’t help but be aware of how quickly I had dismissed the possibilities those two messages had presented. No real thought or debate went into it, only a kind of wishful thinking floating above a certainty of impossibility.

I started to look back in time, to the previous days and weeks, and was alarmed to see the formation of a habit. The habit of saying no. I had refused dinner invitations that provided logistical challenges like food and transportation, I had let time expire without travelling where I had planned, and I had frequently altered outings to revolve around my neighbourhood.

I had begun to overcompensate for my years of single minded recklessness. I had become safe. Safe, and scared.

Throughout my life I have always trusted my instincts. But they seem to have become gun shy.

And while there is nothing wrong with safety, nothing wrong with predictability, it is not the life I want. I would rather make mistakes, taking chances that could lead to the rainbow, than live in a world of neutral tones. 

I received a third message, the most daring by far of the three, the most outrageous.

It was an offer to hop in to the car of a stranger, a friend of a friend, travelling to Toronto the very next morning, and arriving back home that night.

After a moment of panic, and thinking of all of the reasons why I shouldn’t go, I said yes on a spur of the moment decision.

And when I arrived back home from the adventure I collapsed in bed, exhausted.

But I woke up the following morning filled with inspiration. I had a wonderful time, met wonderful people, and had wonderful conversations.

And these people, this trip, gave me such a gift. As stories were traded over a 14 hour period of driving, lunch, shopping, and coffee, I couldn’t help but be struck by the immense amount of experiences these people had lived through in the decade that separated us. The completely unexpected challenges and joys that seemed to form the curves of their years.

Even if I tried, my life will never be neutral. Not merely because I live with an unpredictable body, but because no life is.

And that’s kind of a relief. It’s kind of freeing.

Because it means that there is an entire universe of possibilities, waiting for me. And I can take risks, or I can avoid them, but I can’t hide from life any more than I can rush it.

I cannot control the shape my life will take. And I cannot predict it.

But I can sit back, and enjoy the ride.

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Stranger

I went to see a show and sat alone, amongst strangers.

As I shuffled through the row to get to my seat, I found myself hoping against hope for an empty seat beside me, not because I wanted to use the physical space, but because it would afford me an illusion of privacy, it would mean that there wouldn’t be a human being, a stranger, literally rubbing elbows with me.

But as I arrived at my seat I saw that my hopes were to remain unfulfilled. A lady in her senior years with an accent sat, solitary herself, in the seat beside mine. She welcomed me, and expressed her excitement about the upcoming show, and I merely smiled in reply, effectively and, I hope, politely, cutting of any potential for further conversation.

After all, I didn’t know her. Why would I engage in conversation with a complete stranger? It’s not as though we had a mutual acquaintance, I could see no reason to be anything more than polite.

Finally, the lights grew dim. I watched the first act of the show, laughing aloud, as did she. When intermission arrived, I thought that she’d filter out to the lobby like the majority of the audience. But she did not. She remained seated beside me, and commented on how funny the show was.

And at first I just smiled back. But then I decided to answer. I simply said, ‘yes, it really is’.

And she left it at that. I could have too. But now, I was engaged. The silence no longer felt comfortable. So I asked her a vague question about whether she had seen a musical by that company before. And we began to talk.

As it turned out, she was a lovely, kind, and fascinating woman. She had travelled the world with a friend when she was my age, and worked as a bartender in South Africa for a year and a half in the 70s. She goes on adventures with friends that she has kept from grade school, and they still seem to get into the same scrapes that they used to. In fact, just that day she had travelled in with a group from Quebec to see the show.

As she asked me a bit about myself, I noticed that I was growing uncomfortable. I had mentioned that I recently moved from Vancouver, and she asked why I was there in the first place. I told her that I had been studying opera performance, which prompted her to ask if I would be performing in Ottawa at all.

Rather than explain what led to my having to leave Vancouver and the program, to say that I live with chronic illness, that I am not currently performing and I don’t know what the future will bring, but I certainly hope to sing again in whatever capacity – I heard myself reshaping the truth.

I said that I had been injured. That I had received a concussion, and wasn’t currently able to perform, but that I was working to get back to it.

And it was not strictly a lie. I had been concussed, and that did dramatically worsen my medical condition.

But it felt like a lie. And it felt especially like a lie, because earlier that day I had talked with a friend about how so much of the world seems to be unaware of the reality of chronic illness. Or, more specifically, the reality that there are people in this world who get sick and don’t get better, and it can take years to come up with a reason why. And even then, there may be no treatment.

I wasn’t aware that a person could drift through medical uncertainty before I myself was thrust in the midst of no man’s land. I was aware of illness, but I had always experienced it as a relatively definite thing. Either you had a condition, or not. There were tests and names, and symptoms to expect. I certainly wasn’t aware of how common it was to remain undiagnosed, or have the title of a vague syndrome with no plan for treatment.

And in our conversation my friend and I hunted for who to blame for this lack of awareness, coming up empty. It seemed to be perpetuated by a cycle of fear and discomfort, with no obvious instigator. 

But as I heard myself avoid the truth, the complete truth, I felt a small measure of guilt settle onto my shoulders.

Small, because this woman had been a complete stranger to me only moments ago. I would probably never see her again, and did not owe her any part of me. I was simply making friendly conversation.

And I had been honest about the concussion. The crux of my story was the same, just in a more user friendly package. Injuries are easier to understand, less overwhelming, less unnerving, than a longterm, inexplicable, unavoidable condition.

But the guilt was still there. I felt like I had taken the easy way out, and it felt wrong.

Of course, there is probably a valid reason that I avoided bringing it up. Multiple, I would imagine. 

I was afraid of making her uncomfortable. I didn’t want to put a damper on the conversation. I didn’t want to think about it right then. I didn’t want to deal with her expressing pity for me. And so many more.

It is not my fault that illness is painted as something that detracts. Something a bit shameful, not polite conversation. It is not my fault that it can make situations awkward and that many people worry over what to say.

But it is my choice whether I talk about it, or not.

And if I want to stop feeling uncomfortable about something that is here to stay, then the subject has to become less taboo. And if I want the subject to become less taboo, then I have to talk about it, and not just to the people who already know me, who I already trust.

A little later in the conversation, I came clean to the lady sitting next to me. I told her that I had been dealing with a pre-existing condition, before the concussion, and that I was still grappling with it, but doing much better.

She didn’t withdraw. She didn’t react negatively at all. She asked a little bit about how I had managed for so long by myself. And then we watched the second half of the show.

And after we both gave a standing ovation and gathered our things, she told me she would think about me. She told me she was sure I would do great things. Because I already had.

In the end, this woman wasn’t a stranger. She wasn’t some unknown creature to be wary of, that I could try to generalize about, that I should try to shut out.

She was just another person, out to see a show. As was I.

And now we know a bit more about each other.

And I think we are both the better for it.

Powerful

It’s been coming on for weeks. Weeks of fatigue steadily creeping up on me, coupled with a decrease in activity.

I finally gave in.

I took two days.

I stayed in bed, I watched movies, and I napped.

And it was such a relief. It had been so exhausting, struggling to hold on to the last vestiges of routine, of normality- cooking, cleaning, and exercise – it was so easy, so wonderful, to let go, just for two days.

I told myself that I needed the rest. That taking the time off would help me regain my strength, and end my slow downwards spiral.

Because that’s what people do. When their bodies start to shut down, they turn them off their lives for a while, let themselves recharge.

Yet even while I burrowed deeper into my nest of pillows, I felt guilt. I felt fear. I feared what this rest would cost me.

But I was tired. I had a sore throat and burning eyes, my limbs were weak and aching. My head hurt. I didn’t want to push anymore. I wanted a day off.

So I took one.

And throughout the day, I noticed no obvious repercussions. My symptoms didn’t worsen dramatically, in fact, my sore throat improved, and my eyes returned to normal.

I started to think that maybe I was wrong. Maybe I can take days off. 

So I took another one.

But then, on the evening of that second day, the aching in my body changed. All of the sudden, I noticed swelling, of the likes that I hadn’t seen for months. I shifted around trying to ease the pain, and was greeted with a symphony of cracking and popping, without any relief.

As I went to bed that night I knew that my days off had come to and end. I vowed to fight back stronger in the morning.

And I did. I forced myself to go to the gym, but it was so much harder than usual. I tried listening to music to distract me from my rapid heart rate, my creaking joints, my weakened muscles, but it exacerbated my already pounding headache.

Instead, I passed the time feeling ashamed and angry at what I had let happen.

Yes, I had felt like I was at the end of my resources, that I needed the rest. But I have a chronic condition. There are no days off. By not exercising, even for a day or two, by missing a dose of medication, by not wearing my compression garments, I do not only effect that particular day, but those that follow.

And it is horrible to suffer, and know that I could have prevented it.

But as I pushed myself through that first workout, and those that have followed, I also felt a bit of awe.

Awe, that the enormous daily effort I exert can be so easily trampled, yes.

But, primarily, awe at myself.

For two days, I did nothing. I did nothing helpful, but I also committed no damaging actions – I did not get injured, I did not stay up late. I simply rested, neutrally, for 48 hours.

And just that made a significant dent in the progress that I have made. Hopefully an easily and quickly repairable dent, but a dent nonetheless.

Yet for the past year, I have not merely maintained an equilibrium with my condition, but made sizeable gains. I have plateaued, certainly, and experienced multiple backslides, but overall I have been slowly but steadily treading towards a life with a condition that is fully under control.

And that is incredible.

I am not proud of the two days I designated as ‘sick days’.

But I am immensely proud of every other day that I drag myself out of bed, and defy something that needs no trigger to destroy.

I am not weak for slipping up. I am human. I make mistakes, and ideally I will learn from them.

But I am powerful. I am strong. I challenge nature and instinct every day. 

And every day that I do not lose, I win.

I am a champion.

Carving Routines

I think I’ve been looking at things the wrong way.

All week, I have felt a keen sense of dejectedness. I have been trying so hard, working so hard, and yet I feel as though I am constantly getting dragged down. There seems to be no reward for my effort, only continuing struggle.

And it’s not horrible. There are beautiful elements to each struggle, things worth fighting for, but I must say, it is exhausting.

But this week, I was more than tired. I was unhappy. In fact, I was miserable.

And pushing towards something, working hard, has never made me miserable. It usually has the opposite effect.

This week, I didn’t feel like I was working towards a goal. I felt like I had failed. Or as if I was in the midst of fighting a losing battle. Finding the inspiration to continue was excruciatingly difficult.

Looking objectively, however, I can’t quite figure out which battle has been making me so miserable.

Without a doubt, these past few weeks have been rough on my body. But I never intended to champion that battle. The ups and downs of my condition are outside of my control. All that I can control are my responses to them, and my day to day management. And I have been excelling on all of those fronts.

It is also true that I do not currently have an exciting and well rounded life in this city. I do not have events to attend, responsibilities to uphold, or people to see on a daily or even weekly basis. I have some wonderful friends and family here, however I still spend the majority of my time alone, hiding from the heat and humidity. But I had anticipated that.

I planned to spend the summer creating a foundation. And that foundation extends beyond simply setting up a medical team.

I moved to this city 4 months before classes begin in order to develop and solidify habits. To find the best way to get my groceries, and become accustomed to the walk. To get into a comfortable cleaning schedule with my roommate. To grow used to a new gym, and get in the practice of using it daily. To create routines for cooking and laundry.

And none of those things are exciting. They are the most basic and mundane aspects of day to day living. But they are essential for success.

Just three months ago, any one of those activities was an achievement within itself. It was worthy of a bragging call to a friend or family member.

Now, I am physically capable of completing these tasks on a regular basis. But they still require effort. It’s much easier to let them slide.

If I am to be able to add on all of the exciting things that I someday hope to accomplish, I have to first make sure that I have a solid foundation. That I am not stuck eating takeout until I feel up to getting to the store. That my apartment can remain clean, even if I’m not at my best. That exercise, one of the tools in the management of my condition, is not an extra for when I have time, but part of my daily routine.

I may not be fighting an exhilarating battle. There is no enemy to conquer, no prize to be won. But I am working. I am working successfully.

And that, in itself, is exciting.