A Paradox

I don’t quite know what to think.

This past week has been quite an adventure. Yesterday, I woke up unable to move my legs. When I was finally able to get out of bed, I immediately fell back down. When I was finally able to walk or, realistically, waddle, I was unable to carry my purse.

My health is the worst it’s been in over a year.

I don’t know why and I don’t know what to do about it. But I do know that this is not okay. Something is very wrong.

And yet, I’ve found myself astonishing calm all week. I’ve worried, I’ve had moments of panic. But I’ve also felt quite content.

I’ve had some truly wonderful moments. Moments squeezed between naps and shivering under piles of blankets.

I went out for dinner with my family, ate and laughed, and actually felt pretty normal.

I was sensitive. I was weak. I was tired. But I wasn’t overly aware of it. I was having fun.

I taught multiple lessons today, and felt incredibly proud of my students.

At some points their voices were just too loud. At some points I couldn’t control my shivering.

But I made it through each lesson, feeling relatively fine.

It wasn’t until I was travelling home, until the students left, until I was alone, that the waves swept over me and I collapsed on the couch, spending hours doing nothing but a cost-benefit analysis of the act of standing and getting myself a glass of water.

It makes me wonder.

Why is it that I can distract myself in front of an audience, but in private or in front of very close family I collapse?

Of course, I sometimes collapse in public too. Today, I was walking so slowly that it was obvious to everyone who saw me. Today, I could not hold my head upright in a cafe and had to slouch in my seat, resting against the wall behind me.

But I still managed to laugh and smile, and to periodically perk myself up.

It was a vast improvement over how I had been just an hour before, alone, drifting in and out of consciousness on my couch. A vast improvement over how I was, 3 hours later, fighting to sit upright.

But why?

Shouldn’t it be harder, more fatiguing, to be out and about with so much stimulus, having to focus for extended periods of time?

Is it just that I feel more comfortable in my own space, more able to let my guard down?

Am I working harder to put on a show when I’m in public?

Is it the prospect of an end, the opportunity to rest and recover, that allows me to unlock the last dregs of my resources?

Could I feel better all the time, if only I was properly distracted or put in enough effort?

Try as I might, I cannot come up with a satisfactory answer to any of these questions.

All I know with certainty is that I feel as though I am trying just as hard whether I’m alone or not.

I certainly am more likely to lie down if there is no one around to see me, but there is never a time that I wish to feel weak, to struggle for breath, to feel intense pain. It is never acceptable. I do everything I can to avoid it.

And yet, I seem to be more successful in this effort during my limited social escapades.

This afternoon I had the wonderful opportunity to meet a group of friends, some of whom I hadn’t spoken to in years.

We sat at a table in a cafe and chatted for a while, we laughed together, and we shared snippets of our lives.

We were carefree. Just a group of young adults meeting up on a Sunday afternoon.

Except that, upon close examination, we weren’t. Over the past few years since we had last all been together, each of us has had our lives altered in ways that we are still attempting to understand. We have all experienced grief in some manner or other. We have all changed. We are all still changing.

And we talked about some of it. Other parts, we didn’t.

But still, we were all smiling, laughing, and, I believe, genuinely enjoying ourselves.

It wasn’t that we were distracted. It wasn’t that we forgot.

It was so much more simple.

We were a group of friends, enjoying each other’s company. Enjoying the day.

And maybe that’s all there is to it.

I may be struggling. I may even be falling apart.

But that doesn’t mean that I can’t enjoy myself.

That doesn’t mean that I can’t still feel good.

Maybe I’ve just had a good week. Maybe some nice things have happened.

I have felt terrible, without a doubt.

I have felt confused, overwhelmed, distracted, and strange.

But I have also felt happy. Genuinely happy.

And that’s kind of incredible.

Advertisements

Showing Up

I’ve been hearing it quite a lot over the past several weeks.

The idea has taken on many different forms, the words expressing it have changed, but it boils down to the same thing.

Sometimes, you just have to show up. Take that first step. Start before you’re ready.

Apparently, that’s the key to success. Or at least, an essential aspect.

Because you’re never ready. Not really. There will always be something to learn, something to improve upon.

And so you have to take a leap. To go outside of your comfort zone.

Of course, you don’t actually have to. You can stay within the borders of familiarity and be perfectly happy. Maybe people are.

But if you want to achieve something new, something beyond your current existence, then the consensus seems to be that you must, at some point, push yourself out of the nest to see if you can fly.

I’ve been hearing this idea for several weeks, and every time I hear it, it resonates within me.

I agree.

I agree that the only way for change to occur is to do something differently. To make it occur.

I agree that it will never feel like the right time.

I agree that it is necessary to show up in spite of that.

And as I have thought about this concept, I have thought about what I, myself, should do. What I want and the steps I should take to achieve it.

I have made plans, great plans, with immediate action at the forefront of my mind.

And as of yet I have failed to carry through with any of them.

There are a myriad of reasons for this.

The medical: My health has been particularly irritating over the past several weeks. I have barely left my apartment, barely managed to feed myself regularly, never mind embarking on new adventures. I am also somewhat in limbo with possible medication changes looming over me, tests, appointments, and buckets full of uncertainty.

The vain: I have been steadily losing weight over the past year and have almost reached the end of my journey. It seems to make much more sense to wait until I have arrived at a weight I am comfortable with before showcasing myself to the public.

The perfectionist: I have been struggling with where exactly to begin. I have so many ideas, but they all seem connected to each other, all reliant upon each other, and it’s overwhelming.

I could go on. There are countless explanations for my lack of action.

But the thing is, they all amount to the same thing.

They all centre upon the notion that now isn’t the ‘right’ time. My energy is too low. It’s too much for me to take on. I will be more capable and confident in the future. Once I’m feeling a bit better, once things aren’t so busy, once I feel more secure in my plans – then I will start.

I am waiting, because I don’t feel ready.

And all the while I have been nodding along to that expression of ‘starting before you’re ready,’ fully and wilfully ignorant of my hypocrisy.

So now, at midnight as I write this post, I am taking a step. I do not know if it is the right time or the best time. I do not know if I am ready.

But I’m going for it anyways.

I have a dream. I dream of reaching people, many people, with messages of openness and accessibility.

I dream of expanding my writing.

I dream of speaking in public about adjusting to the salt in your life, about my experience with chronic illness and disability, and about social perception and its significance.

I dream of creating art and music that explores those issues.

I dream of learning about other people, their stories, and sharing those things that we usually keep silent.

And that’s where I’m going to begin.

I am creating a new feature on this blog. A feature that will share snippets of strangers, and give the opportunity to think about ourselves in new ways. It’s called ‘Body Quirks,’ and it will address our thoughts about our bodies – the uniqueness and universality of them.

All too often, we think of health as a switch. Either a person is healthy, or they are not.

As a result, it becomes all too easy to see someone who is categorized as ‘unhealthy’ to be different. To be other.

Not only is that vastly unhelpful to all parties, causing feelings of isolation and discomfort, but it also happens to be untrue.

Our bodies exist on a spectrum that is constantly shifting. We have all, and will all, experience many segments of the turning wheel of health throughout our lifetime.

Whether we are home sick with the flu, we’ve just run a marathon, our eyesight is failing, we’ve given birth, or we’ve been diagnosed with a medical condition – we all have bodies.

Sometimes, those bodies don’t work properly. Sometimes, they are incredible. Sometimes, they’re amusing.

But we all have them. And we may as well talk about them.

Because something so universal should not be stigmatized. And something so personal should not be shameful.

For this feature I have created a survey. I would be eternally appreciative if you would fill it out, and pass it along as far and wide as possible.

The survey is entirely anonymous. I will have no idea who the responses come from. They could be anyone’s words.

And I think that’s kind of beautiful. Because whatever thoughts emerge through this feature will not be the thoughts of a young adult female living with chronic illness. Nor will they be the thoughts of a school age boy, a working woman in her 50s, or an elderly, housebound, man.

They will be our thoughts, collectively.

And I can’t wait to hear them and share them with you.

But then again, that’s the best part. I don’t have to.

Because I’m done waiting. I’m starting now. I’m showing up, and taking a leap.

I hope you join me for the ride.

Verb: To Reconcile

Reconciliation.

The word is a struggle to pronounce. It squeezes together so many sounds, similar, but not the same, tripping the tongue and confusing the mind.

And that makes sense. The act of reconciliation is the integration of differing elements. It itself is difficult. It is a struggle. If it were not, one would simply decide, match or agree. Simple words, straightforward actions. But to reconcile is more challenging. It takes effort. It takes time.

I feel as though there is a decision, looming over my head. It looks like an hourglass, with sand trickling through, dwindling away far too quickly. And yet I’m not sure what will happen when it ends, unsure of the actual decision I feel looming, never mind my choice.

I suppose it’s natural, especially at my age. Right now, my peers are all facing decisions. As they finish up degrees, many are faced with the terrifying prospect of having to create their own days. To chose how to fill them.

It actually sounds so silly when put like that. As children, didn’t we all dream of the day when we would be able to do whatever we wanted with our time?

“When I grow up, I’m going to _______”

Have dessert every night. Wear whatever I want. Speak 5 languages. Travel to Japan. Be a firefighter.

It sounded like such a dream. Being an adult was going to be so wonderful.

And yet, when the time finally comes, it doesn’t feel simple. It doesn’t feel exciting.

It feels terrifying.

What on earth are we going to do?

Of course, there are reasons for the fear. Along with this newfound freedom comes a great deal of responsibility. We are responsible for feeding ourselves, housing ourselves, clothing ourselves, transporting ourselves, and entertaining ourselves. We need money to do that. We need money to do almost everything.

So instead of feeling elated at the presence of wide open days, we feel panic. Because there are things we need to be doing. And if we aren’t, that’s really bad. If we aren’t, our future is looking pretty bleak.

And adjusting to that panic seems to be a cornerstone of the early-mid 20s experience.

I too feel the weight of that stress, nudging me as I lie in bed at night, prompting me, pushing me, pressuring me.

And sometimes, I acknowledge it. Sometimes, I research careers and schooling. Sometimes, I think about what kind of life I want to lead. Sometimes, I try to plan a map for getting there.

Because that’s what I’m supposed to do, right?

But there’s a slight problem. Since last August, my medical situation has been steadily getting worse. The progression has been so slight, it took me months to really notice. But lately, I have been having to make choices like whether to go to the gym or cook myself dinner. Whether to clean, or go out with my family. My upcoming month is filled with appointments, and everything hinges on how they go. What are my next steps? Will I be starting a new medication? If so, how long will it take to kick in? More importantly, how will I react to it?

I’ve been feeling a bit stuck. I feel this immense pressure to take strides towards organizing, essentially, my life. I hate the fact that I am not financially independent. I hate the fact that I don’t know when I will be. I hate the fact that I am not even in school, taking strides towards employability. I want to change all of that. I want to make decisions. I want to make commitments. I want to feel like an adult, or at least feel capable of performing a fleeting impression of one.

And yet I feel as though my body is preventing me from making any decisions. From making commitments. From being an independent adult.

I do not know what I will be physically capable of in a month, never mind a year. I do know that right this minute, I am not capable of going to school. Today, I could not have travelled to work. I tutored from home for two hours, and then I slept for five. And when I woke up, I ate leftovers for dinner.

Currently, I am taking things a day at a time. And some days are great. I cannot express how accomplished I felt earlier this week, after sorting through all of my laundry, washing my sheets and towels, cleaning the bathroom and kitchen, and cooking an exciting meal. And I did that all in one day.

But taking things a day at a time does not seem to satisfy the hourglass hanging over my head. It pushes for longterm answers. It calls for the future. It shouts.

As a result, I have sat for hours, trying to decide. Trying to make plans.

And in these plans I have built a window. A window of time to deal with this latest flare, before I start whatever it is I choose to pursue.

But really, that’s ridiculous. This isn’t going away. It might get better, I certainly expect it to, but it might also get worse. It is a constant in my life. It will need to be considered in every decision I make.

I should know that by now. I do know that by now. But it is so much easier to have 2 separate options.

Because really, that’s how I’ve been looking at things.

The first option is that I get better. Not cured, but better. I get better and then I can do wonderful, exciting things. I can go to school, I can get a job, I can volunteer, I can even learn to waltz if I so choose. And I have chosen, I have sketched out exactly what I want to do, how I want to live.

The other option is not an option. It is so not an option that I haven’t even considered it. But it involves me not getting any better. It involves me not being able to do those things.

Decisions can be scary. They can be hard. But it’s so much easier to make a choice, than attempt to blend two different options.

But I don’t think I have a choice to make.

My first option is a fantasy. I hope that it will come true, and it very well might, but it is not true right now.

My second option is less than reality. It is insubstantial. It is just as unrealistic as the first at this point and time.

Choosing is not an option.

But maybe, the hourglass over my head isn’t waiting to me to choose. Maybe, the pressure I feel is not guiding me towards a decision.

Maybe it’s a little more complicated.

Maybe it’s about taking my goals and dreams, taking my financial concerns, and merging them with my physical reality.

Maybe it’s about reconciliation.

Sticks and Stones

We all know the rhyme. I’m sure at some point it was chanted to us all in an attempt to bolster our confidence. To make us feel better. To make us feel strong.

‘Sticks and stones may break my bones, but words will never hurt me’.

It’s such a simple phrase. And, at first glance, so true. Words will leave no physical mark. When spoken, they vanish as quickly as they are formed. When written, they can be ignored, crossed out, or erased entirely.

But of course, physical injury is not the only measure of damage. Words have immense power, and they can leave deep scars of another sort. They can nestle into your mind and repeat, over and over, and they can shape the way you see both yourself and the surrounding world.

Words have power. And so do the people who speak them.

It seems so wrong to place a bully in a position of power. I was always taught that a bully only had as much power as I gave them. I was taught that if I remained unaffected, the person trying to make me miserable could not accomplish their goal. And even if their comments upset me, it was important not to let them know, not to show it, because otherwise it gave them power. Otherwise they’d think they won. Otherwise they did win. And then they would do it again.

I got very good at remaining emotionless at the whispers in the hallway. I got very good at eating my lunch alone without looking over my shoulder.

But I was affected. I cried later. I was hurt.

As time went on, I gradually found my way. I developed friendships, I no longer ate lunch alone. I didn’t have to block out any whispers, I was able to smile in the hallways and crack jokes without worrying about how my words could be twisted against me.

But I never fully escaped from bullies. They took on different forms, a teacher who used authority as catharsis, a competitor who spoke behind my back, and others, plenty of others, weaving in and out of my life, in varying degrees of importance.

There are always those who use harsh words. Always those who thrive off of pain. And sometimes, they succeed. Because words do hurt. They’re too powerful not to.

Tomorrow, I have a doctor’s appointment. And in preparation for that, I have organized my medical history into one binder.

It was a monumental task – the amount of paperwork was astounding. I spent hours buried amidst test results, doctor’s notes, scans, post-it-notes and dividers.

As I read through the notes, I couldn’t help but feel more and more upset.

From a gastroenterologist referring me to a phsychiatrist, to comments on how ‘the patients complaints were inconsistent with her cheerful demeanour,’ to the repeated claim that everything I was experiencing could be explained by, and fixed with weight loss, the words written on paper cut into me.

Seeing a record of symptoms that were often inaccurately recorded and not followed up due to the altogether more likely scenario of an anxiety riddled, obese young woman was incredibly painful.

Because I have now lost over 80 pounds. I am fifteen pounds away from having a healthy BMI. And those very symptoms that were dismissed when I was told to go to therapy and lose weight, have increased to the point where they have become urgent. Where they have landed me at the top of a triage list.

Three years worth of history. A history of being brushed aside due to my age, gender, and size.

It’s incredibly frustrating.

It hurts.

And now, I am gearing myself up for my appointment tomorrow. It’s an important appointment, an appointment to investigate those very symptoms, the ones that have been here all along, but never so obvious. Never so urgent.

And all that I can think of are back up plans. Even though I’ve lost so much weight, I am preparing for a directive to lose more. Even though I feel happy, more settled then I have in years, I am preparing for questions about the various stressors in my life.

I have been going through possible scenarios, trying to reassure myself. I think that even if the doctor is rude, it’s okay, as long as he believes me. And even if he doesn’t believe me, it’s okay, as long as he runs the tests. And even if he won’t run the tests, it’s okay, as long as he examines my medication list. And even if he doesn’t change my medications, it’s okay, because I can always look for another neurologist.

I feel as though I am preparing for battle. Strategizing, gathering my paperwork, and putting on my armour.

And maybe I’m being overly concerned. After all, this doctor examined me in the ER, and asked to see me in his clinic. He chose to follow up with me. Maybe it won’t be that bad. Maybe it will actually be incredibly helpful. Maybe he will have found something in one of my tests, or maybe he has ideas of his own. Maybe he genuinely wants to help me, or at least wants to discover what exactly is going on with my body.

But I have a binder full of words, along with years worth of memories that make me cautious. That put me on my guard.

I have been hurt, over and over again, in a doctor’s office.

And it has affected me, it has changed the way I enter an appointment, it has changed the way I understand medicine. At times, it has even changed the way I see myself.

I had been sitting here for hours, going over my notes, when all of the sudden my phone vibrated.

It was a text message from a friend across the country, completely unprompted, saying ‘good luck tomorrow lady’.

And after hours of tension, I felt a rush of warmth enter my system.

Because words hurt, yes.

They hurt because they have power.

But their power is not limited to pain.

Words can heal, they can build you up, and they can make you so, incredibly happy.

Words can shape you.

They can shape the way you see yourself.

They can shape the way you see the world.

And that can be beautiful.

Words can be beautiful.