Purpose

Nothing dramatic happened. I didn’t have an episode of any kind. I had no need to rush to the ER. No serious injuries or urgent calls to my doctor.

My body simply revolted this week.

And it was so subtle, it took me a couple of days to notice.

From waking up in the morning feeling like a weight, sculpted to the shape of my body, pinned me down, refusing to let me rise from bed, or even turn over to take my medicine, to watching hours pass, aware only of the increasing pain creeping up the back of my neck, waiting for a signal of some kind to push me to activity- my body simply has not wanted to move.

And that happens. After all, I do have a chronic illness. I used to spend every day in that haze, the hours ticking by as I debated the merits of standing to bring my dishes to the dishwasher. I love that it now seems wrong to feel that way.

But, while I struggled through each day of this past week, the mornings beginning with impossibly leaden limbs, there were two distinct days which I experienced, repeated, throughout the week.

Both involved copious amounts of napping.

On one of the days I managed to push through the barriers, to exercise, smile, laugh, and enjoy myself. I found myself reaching out to friends, and I was able to bring my dishes to the dishwasher without excessive debate.

And on the other, I simply made it through the day. I did a little bit of exercise, I made myself meals. And I waited for it to be nighttime.

The key difference between the two days was that on the first, I had plans. I had preexisting commitments, that I did not want to let down. After all, it’s not like I’m experiencing a medical emergency. The incline of my life simply tilted upwards for a while. Nothing that hasn’t happened before, nothing that won’t happen again.

And when I had a reason to get out of bed, a set time to be presentable for, I rose to the challenge. I was able to lift the crushing weight and carry it with me. I even got in visits to the gym before preparing to leave.

And once I was out, or Skyping with a friend, or doing whatever my plan that day was – I enjoyed myself. Yes, the weight was heavy on my shoulders. I was achey and got tired faster than usual. But I felt so much better having accomplished something. Being distracted. Living.

But when I had no one waiting for me, no purpose to my day, it was very easy to let the time pass. Because I was feeling awful. And why should I further exhaust myself when I’m already sore and tired, if I don’t actually have to do anything? Any of my tentative plans for the day could wait, and it would make no difference.

And on those days I found myself withdrawing. I ignored texts from friends, and as my boredom increased I grew lonely and miserable.

I fed myself. I exercised. But I did not live.

And I so desperately wish, now that I have identified the cause for those days of lethargy, that I could simply decide to push myself through them.

Maybe when I’m feeling better I’ll make a pact to do just that.

And on some days, I can. On some days, I can manage the weight myself. My own internal motivation is enough to push me through the day.

But sometimes, the weight simply feels too heavy.

And I can struggle against it. I can push with all the strength that I possess.

But sometimes, I need something to push towards.

Sometimes, I just can’t manage it alone.

Sometimes it’s transformative, to have an event to look forwards to, a friend to see, a deadline to meet.

Sometimes, it helps to have a reason.

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Optimism/Pessimism

I am stressed. I can feel it in the stiffness of my neck, the ache behind my eyes. It makes my breaths feel more shallow, and it keeps me up at night.

I am stressed, and I am trying to deal with it.

Along with various breathing and meditation exercises, I am trying to identify what exactly is causing me this anxiety, and to work through it.

It’s not overly difficult to come up with a list.

Along with the vast amount of change that I have recently experienced, I am currently waiting on a response to an application for a school program for next year. As the date for registration is tomorrow, I am extremely concerned not to know which program I will actually be enrolled in, concerned about how my schedule will be affected, and feeling generally stranded in the unknown – a place that I have never been comfortable.

These worries have brought others into the light, competing with each other for company. Thoughts about the future plague me, and all the while I miss my friends, the people who help it all make sense, so many of them a country away.

So I have identified the problem. Perhaps not in it’s entirety, but enough of it. I know that there are various stressors in my life, and I know that they are affecting me.

But as I look at each issue individually, it becomes difficult to see why I am growing upset over it. Not because the issues aren’t legitimately stressful, but simply due to my usual approach to them.

I used to consider myself an optimist. I skipped through the world, looking for and finding the good in every situation. And I still do see silver linings. But when I take an online quiz and it asks whether I am an optimist or pessimist, I now click the latter. Because, while I work to make the best of every situation, I find myself expecting more bad than good.

And that’s something that I had just accepted as a part of myself. But right now, that label doesn’t seem to fit.

Because if I truly expect disappointment, then I wouldn’t feel so let down and frustrated when things don’t seem to be working out. It wouldn’t cause stress, to contemplate a future that isn’t quite what I had hoped for, it would merely cause resignation.

Clearly, there is a seed, buried deep beneath the cynicism, of optimism. A part of me must still believe that everything will work out somehow, if I work hard enough, if I hang in there for long enough, and that everything will make sense again. It will all have been meant to be.

And that part of me feels let down, when everything feels like it’s a struggle.

But I must say, there’s something reassuring about knowing that that part of me still exists. That I do still have faith. That I believe that things will work out.

As difficult as the stress is, and as much as I dislike feeling stalled, I’ll gladly take the occasional physical and emotional aches as proof of that rose tinted kernel inside of me.

Because it is what allows me to conjure such fantastic dreams, and find beauty and meaning in the most ordinary situations.

It gives me something to look forwards to.

It gives me hope.

 

Normalcy

Small, aggravating, annoyances have been plaguing me all week.

Despite layering my skin with SPF 45, I developed a horrendous sunburn that ached to the touch and eventually bubbled and peeled, necessitating long sleeves and constant attention.

A blister appeared at the back of my foot, constantly rubbing up against my shoe, and making every step painful.

Even the weather conspired against me, dripping water all over my plans with a wonderful friend visiting from out of town.

Scheduling conflicts, miscommunications, interrupted sleeping – tiny thorns, biting into my patience and frustrating my days.

And yet, looking back on the week, I feel strangely proud.

Some of the pride makes sense. While a sunburn often indicates a lack of preparation, and I certainly was unimpressed with its emergence, it marked a bit of a milestone for me.

I used to love the sun. I would rush outside, trailing binders of music and homework in my wake the minute it peeked out of the clouds, and I would sit, enjoying its beams for hours. But for the past several years the sun had become my enemy, too hot and too bright, making my skin crawl, my head ache, and my eyes burn.

This sunburn was a mark that I had managed to stay out in the sun long enough for it to effect me. And I enjoyed it. I enjoyed the warmth, from beneath the shade of my broad rimmed hat. I relished the light, dancing on the water in front of me. I had a lovely summer’s day, and my sunburn was a souvenir.

The blister too, was a source of explicable pride. I created the blister after I missed the bus to visit a friend. I was far too excited to see this particular person to wait for the next bus, so I decided to start walking. I ended up walking almost 4 kilometres, regrettably in inappropriate shoes, thereby creating the blister.

But I was able to walk that far. Missing the bus was frustrating, but it did not destroy my day. Because I had the ability to walk. And I did. With a blister to prove it.

I can understand why I feel a hint of pride at those particular annoyances. After all, they are results of things that I have accomplished, the sunburn and blister were created by my efforts – efforts that I am only newly capable of performing.

But the rest of my frustrations this week were completely out of my control. They sprung up, deterring my plans. The weather, 6:30 AM construction, difficulties scheduling – my activities played no part in creating these monsters. It makes no sense for me to feel pride when I think of them.

But maybe it’s not the annoyance itself that is spurring my pride. I felt upset as each arrived, and it is only in looking back that I feel a surge of positive emotion.

The events themselves were frustrating. They ruined my plans. But I was able to handle them. I was able to be flexible enough to adjust to the roadblocks.

And more than that, it all felt so normal. I must say it was a little exciting. The things that held me back from my plans were so incredibly mundane. Such everyday annoyances. Part of life.

I had to adjust my plans because of the weather. It was not because I had a flare. And the reason I was tired was that I had been woken up by early morning construction. Nothing complicated, nothing scary.

Sometimes, it’s kind of nice to be thwarted by normalcy.

At Ease

Earlier this week, I was told by three separate people that my life is sad.

They were all understanding, kind people. They simply recognized how much I had loved what I can no longer do and, knowing that I did not choose or earn this path, they feel for me. They find it sad.

The minute those words were spoken, I found myself itching with discomfort. Each time, I hastened to steer the conversation towards the future, providing a floatation device which was latched on to with desperation, clinging to the hope that my future will be less sad.

And I couldn’t understand why I felt so uncomfortable. These were not the first times that I have encountered a reaction that is different from my own. But this time, I couldn’t work through the conversation. This time, I felt a sense of urgency, to steer away, to escape.

I think it was starting to sound a little too true. Right now, I am undergoing a lot of change. A new city, a new school, a new field. And with these new experiences has come a sense of loss for the past.

But even pushing past those creeping thoughts, I had been feeling discontent. On edge.

I had been feeling like my past didn’t fit with my present anymore. I found myself wondering whether I should try to stop thinking about it, to make a clean break, and move forwards with a fresh start.

Then, I spent the weekend on a lake to celebrate a beautiful wedding.

I was extremely nervous. I didn’t know very many of the guests, and I was concerned that I might need to miss certain events, or show up to some with some obvious accommodation, leading to awkward assumptions.

And I was nervous about meeting new people, and reconnecting with those I hadn’t seen in years.

Of the few people who knew me at the event, the majority knew me as a singer. If my past was no longer applicable, was something to be forgotten in the hopes of reducing the pain and recovery time, then what exactly did I have to offer?

Driving up the swirling road to the inn, I announced aloud that I would have a good time. And it echoed of a battle cry.

Maybe it was the nature, gentle and serene apart from an army of mosquitoes. Maybe it was the stars, reaching into infinity. Maybe it was the overwhelming sense of love, certainty, and ease, originating from the bride and groom and radiating throughout the entire guest list. Maybe it was the remarkably kind and laid back nature of those present.

But I had a wonderful time. And more than that, I felt relaxed among a sea comprised of mostly strangers.

Yes, I needed some accommodation. I had to slip outside, go lie down, and end the nights earlier than I would have chosen to. I increased the dosage of my medications, brought my own food along with blocks to raise the head of the bed, and wore tinted glasses or contacts the entire weekend.

But I was so happy.

I met new and fascinating people, caught up with other, wonderful individuals, and spent some time alone, soaking up the sun beneath my wide brimmed hat.

And I talked to some people about my medical situation. Some others heard about it through the grapevine. And I talked to still others about music. And some about television shows. Cynicism came up in conversation, as did the possibility of alien life forms. Travel, studies, relationships, childhood, dancing, temperature regulation – the list goes on. 

I didn’t feel the need to hide any part of my life, any path it has taken. I didn’t feel self conscious at all.

In fact, I felt extremely at ease. More than that, I felt strong. Within the twists and turns that my life has taken, that have shaped me, and will continue to do so.

I am a work in progress. Compiled of the experiences I have lived, the emotions I have felt, the stories I now have to tell, with plenty of space for more.

And I have a wide repertoire. The vastness of my experience is an extraordinary gift, not something to hide and forget. It is a part of me, and therefore will always be applicable.

This weekend I met and re-met a variety of wonderful and fascinating people.

And I discovered another, within myself.

Adventure

I’m craving adventure. 

I go on Facebook, and my newsfeed is filled with pictures of friends all over the world, of beautiful nature, iconic structures, and radiant joy. Statuses about booking flights and concerts and tours, moving somewhere new, travelling for weeks, heading up to a cabin overnight, or going for a hike out in the mountains.

And I sit on my couch, looking at these pictures, hearing this news, and try to convince myself to cook lunch, even though it’s 4pm.

It’s almost amusing, that my desire for something new and exciting seems to grow at a pace directly related to my listlessness.

This week began as I battled the worst days of a cold. Just a normal cold, but for me it meant that my body was weakened and my other symptoms came out to play.

So I didn’t search out activities. I tried to attend my essential appointments, and use the rest of my time to recover.

And it would be nice to say that this cold, this flare of symptoms, was the reason that I sat for hours, convincing myself to do the most basic tasks. And maybe it was, at least in part.

But I have had flares before. And usually, the one thing that gets me through, is thinking about what I want to do. Pushing for my dreams. Coming up with endless lists of short and long term goals and feeling that burst of energy, of excitement, that comes with having motivation.

Yet this week, as I looked at my friends’ pictures, as I tried to come up with my own lists, I felt no inspiration. I merely felt frustrated.

Yes, I want to travel. But I can barely handle a 5 hour flight – how am I supposed to make it over an ocean? And if I do manage to get somewhere, where can I sleep when I require a firm mattress raised on a 4 inch tilt to keep my joints in place and my blood pressure steady? How can I handle the time change? How can I handle a different climate when my body is struggling so much to adjust to the temperature here, where I’ve been living for a month? And after all of that, how much will I even enjoy the trip, how much will I be able to see and do, with my severely limited energy?

These questions have plagued me, and as I try to address them, I slip more and more into a sense of apathy. After all, everything is hard. So much harder than it was. So is it really worth it to put so much effort into organizing something that I will then have to struggle through? Will there be any crumbs left for me to enjoy?

And then I come full circle, sitting on the couch with no motivation to stir me, nothing to look forwards to, to work towards.

But then, yesterday, I went for a walk with my dad. Just a walk. It was a beautiful day, and I thought it would be too hot, but he promised that we’d stick to the shade.

As it turned out, there was no shade. But there were lots of stairs. And again I was worried. Worried that the walk would turn into a disaster, that it would ravage my precious store of energy.

But it was such a beautiful day. And then we saw a beaver. Right up close. And later, we saw a bear, lumbering quickly across the road.

We had an adventure. And it was exhausting. Afterwards I had to sit down for a while. But it was wonderful. I’m so glad that we went.

And it was unexpected, unplanned as all the best adventures are.

I’ve spent so long carefully rationing my limited resources, being constantly afraid of making a mistake that could send my body into a flare. And that’s important. 

But maybe I’ve gotten too careful. After all, my flares are not even moderately within my own control. They will come, and I have learned to cope with them. But maybe my carefully hoarded physical strength is not the only thing that can nourish me through the roller coaster.

Maybe it’s not about energy lost, but memories and experiences gained. Maybe it’s about going ahead, responsibly, but forging ahead nonetheless and creating adventures.

Maybe it’s about living.