New Year’s

Well, I guess we’re at the end of 2014.

It’s funny how significant that feels.

After all, it’s not like anything changes beside a number. It’s just another day with 24 hours.

Really, any day could mark a new year. We could begin our calendar in May and celebrate New Year’s on the 18th just for kicks.

But somehow, January 1st has become our marker, telling us that 365 days have passed.

We have made it another year.

And it’s hard not to get a bit contemplative, when dealing with the prospect of time. To think of the things that went well and the things that didn’t. To marvel at all that has happened and to make future plans.

We celebrate New Year’s Eve with parties and champagne. We stop our ordinarily lives for a day to mark the event. We list New Year’s resolutions. Now, even Facebook is joining in the fun, creating our ‘year in review’.

It’s a time to take stock of where we are, what we have done, and the things we still hope to achieve.

I used to love New Year’s. Not the actual celebration – I always panicked about what I would do on the Eve itself (friends or family – the teenage dilemma), but I loved the concept.

I loved looking back over my year, and I always got so excited about what the next would bring.

Unfortunately, I haven’t been feeling that way this year.

This New Year marks the 4th anniversary of my experience with severe chronic illness.

That dampens my excitement for the date itself, but it is fully surmountable. Chronic illness has not destroyed my life. It destroyed part of the life I had been living, the life of an aspiring opera singer working towards a music degree in Vancouver, but it did not leave me bereft. I have been living, each and every day since that New Year’s Eve 4 years ago.

And I am actually quite excited for my New Year’s plans. I am looking forwards to the date itself.

No, my problem this year is not about the date of ‘December 31st’ or ‘January 1st’.

My problem lies on the conceptual side.

It lies in the area of taking stock, looking at what I have done over this past year, and thinking of my hopes for the future.

If you had asked me at the start of this past year what I thought my 2014 would look like, I would have had two very firm answers.

I was planning to head back to school come September. I thought that by the end of the year, I would have completed one semester of my new program.

And I thought that my medical situation would either continue to improve, or settle.

At that point I had just spent about a year in a kind of holding pattern. Early in February 2013 I had received a concussion that resulted in me having to move back home with my parents. The rest of that year was devoted to figuring out what exactly was going on with me medically, and to adjusting, aiming to make my days the best they could possibly be within the markers of reality.

In May I finally received a diagnosis of Postural Orthostatic Tachycardia Syndrome, along with a list of pharmacological and lifestyle measures that could be taken to improve my condition. And I put my head down and got to work.

At the start of 2014 I had just begun weaning myself off of a mobility scooter using walking poles, and things were looking up. I was on a medication regime that worked, and while the progress was slow, it was definitely moving in the right direction. With a whole year ahead to continue strengthening and fine-tuning a routine, I thought that by this coming January I would be unrecognizable from the girl on walking poles with funny glasses. I expected it.

I also wanted to have top marks in all of my courses, I wanted to make new friends in my program, I wanted to work, I wanted to volunteer. I wanted to sing again, and, more than anything, I wanted to be strong enough to take a dance class.

But I didn’t expect any of that. I knew better.

The two things that I did expect seemed almost inevitable. I was applying for schools, and my medical situation was already improving. I was confident that things would only get better as a result of the passing of time and the enormous amount of effort that I was investing each day.

And yet, here I sit, a year later, with my head resting on the top of my couch due to my inability to hold it up.

I am not in school. I did not even last a full month.

When I am able to walk, I am doing so with the help of a walker.

I am back to the drawing board for medications.

I have investigative appointments booked for the beginning of 2015 just to try to figure out what’s going on, not even close to the possibility of treatment.

I am afraid to leave my apartment by myself, because I am not sure that I will be capable to get back or communicate my needs to those around me.

In short, I feel as if this entire year of effort has not occurred. I am back in a holding pattern. Holding on until something changes. Hoping desperately for a breakthrough. Living day by day. Unsure of how to look ahead, to plan ahead.

Looking at this past year feels demoralizing. I have worked so hard. And I have nothing to show for it.

And I wish that I could find a way to make that untrue. To find a way to turn it around, to make it positive.

But I can’t. I can’t escape or twist this reality. It is what it is, and it’s something that I have to grapple with. To live with.

Still, it’s not the only thing I have to live with.

This past year has done terribly in the measurements I had set for it.

Physically, I have worked hard, but my body refused to cooperate.

As a result, my academic and social life have suffered, have dropped from my expectations.

But those aren’t the only things in my life.

My relationships with many members of my family have improved and grown stronger over the past year. My relationship with my parents has transformed from loving, but tense, to loving, supportive, and happy. They understand my mumbles when I find speech difficult, and they laugh with me almost every day, constantly making my life easier and more enjoyable in so many ways.

I spend so many more days happy than sad. I laugh far more often than I cry.

And I still dream. In fact, I dream more than ever.

It was last January that I first began this blog. I had never used writing as a form of communication before, and I wasn’t even sure what I wanted to say or what I hoped to accomplish. But I decided to start anyways and see what happened.

Since then, I have not missed a single week.

And as I have written, I have connected with so many different people, from old friends to strangers around the world.

I feel so honoured, every time my words seem to resonate with someone.

And through taking the time to write, through looking back at my thoughts, I have learnt so much about myself.

I have learnt what I care about. I have learnt what makes me happy.

And, most astonishingly, I have found a sense of purpose. I have learnt what kind of an impact I hope to leave on those I touch, what I wish to pursue.

I don’t have all the answers. Not even close. And I don’t have a life plan – after all, my body is making all types of planning rather challenging.

But I know who I am. I know what matters to me.

And I’d say that’s kind of impressive for a 21 year old.

A good year’s work, all in all.

And if I’ve managed all of that in one year, who knows what this next one will bring?

I can’t wait to find out.

Happy New Year!

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Lately, I’ve been doing a lot of reading. I have been researching historical figures and examining literary characters, focusing on one theme. I’ve been searching for information about their health, their physique, their habits, and their overall physical state.

That may seem like a strange thing to be doing, but I can assure you that I do have my reasons, curiosity being only one of them.

I myself thought it was a bit strange. But it turns out that I am not alone in my curiosity. Many other people have searched for the same tiny and often ignored details.

And it’s so interesting to read the discussions that they have. Arguments over whether Queen Elizabeth I really did have a poor appetite, and whether it was due to illness, stress, or any number of other reasons. Demands for sourcing on claims of King Louis XIV’s shivering fits.

But the most common argument doesn’t actually seem to be over the symptoms that each individual exhibited. The most common argument seems to be over diagnosis.

The discussion threads which I have found about this topic all seem to centre around diagnoses. Postmortem diagnoses.

The thought seems to be that at the time these symptoms may not have appeared indicative of any known condition, but now, with our impressive knowledge, we can see things that they could not. We can understand, and neatly categorize.

It certainly is an interesting exercise. And perhaps there could even be gain from it. The suspicion that Alexander the Great was epileptic, for example. How exciting, to be able to put the famous conqueror’s face to a condition that invisibly affects so many. How bolstering, to know that his condition was so irrelevant to his achievements that his legacy barely remarks on it.

But the thing is, at the time that he was experiencing seizures they were actually seen as ‘the sacred disease,’ a sign that he had been possessed by evil spirits or touched by the gods. He was not seen as a patient. He was seen as a mystical being.

He lived in a different world from us, and the only element of his condition that we can try to relate to are his, for lack of a better word, symptoms. The things which his body did. His physical state of being.

And maybe it’s better that way.

We are so quick to label ourselves and each other. From a young age there are the smart kids, the popular kids, and the clowns. We group together based off of common interests, religion, and background.

And that’s not necessarily a bad thing. It gives us a community, other people who have at least a few experiences in common with us. Who we can relate to.

But sometimes, I worry. I worry that in banding together, we lose sight of the world around us. I worry that we isolate ourselves.

As I have mentioned in my past couple of posts, my health has recently taken a turn for the worse. I have had a series of tests, have seen multiple doctors, and have been desperately searching for the cause.

So far, I haven’t made any miraculous discoveries. I need to keep looking and trying new things.

I have called it a rough patch, a downwards slope, and many other things. And I have hunkered down to weather the storm, not going out, trying to conserve my energy.

But yesterday, I managed to have a lovely visit with a friend. And today, I went to a party complete with wonderful people, barking dogs, a tiny prodigy banging on the keyboard, a gift swap and latkes.

I didn’t think that I’d be able to do it. I planned escape routes, and rehearsed refusals.

But I went. And I did struggle.

Still, I had fun. A lot of fun. I even impressed myself with how well I managed the noise and sensory overload.

And there were moments when I really didn’t feel all that bad. Where I almost felt normal.

And right there, in that thought of ‘almost normal’ was the trap. The trap that I hadn’t seen coming, the trap of my own creation.

I had labelled myself as being unwell. A true label. But a label nonetheless.

And in my desire to make the best of being unwell, I put myself into a box, limiting my potential. I thought that I could only do things that unwell people can do. That I couldn’t do what they couldn’t.

But I am an individual, with my own unique set of abilities and issues. Each day is different. Each hour is different. And they are different for me as they are from anyone else.

I am not an unwell person, although I might be unwell.

I am not a person in a rough patch or downwards slide, although I might be experiencing both.

I am a person.

Simply a person. Filled with complexities.

And we’ll see what tomorrow brings.

Happy Holidays!

Relationships, Friends, and Stuff

I remember when my friends first began dating. Everything was so exciting. We’d talk all the time, analyze every comment and gesture. I felt central to the drama, so involved.

And then, the relationship would steady. And all of the sudden I wasn’t needed, to analyze, to talk things out with, to cheerlead. In fact, I was barely talked to at all. Even in group settings, I was ignored by that friend.

Of course, all of that would change when the relationship grew rocky – typically under 3 months in – oh, the joys of high school.

Then I was needed. Then my company was sought out. Then we were close again, like nothing had happened.

But sometimes, too much time had passed. Sometimes, that friend wouldn’t come to me, or I wouldn’t go to them. Sometimes we simply drifted apart.

That situation doesn’t happen much anymore. Occasionally, and often for the first few weeks of dating it does still occur, but friendship is generally viewed as much more special, much more valuable, much easier to lose, than it was in those teenage years.

It is acknowledged as being a priority.

We know that it’s important to be there for the good times as well as the bad. We know that there is value both in excitement and normalcy. We know that maintenance is key to any kind of relationship. We know that we have to invest effort. We have learned this the hard way.

And yet, it is so easy to forget.

I have to say, I have some of the greatest friends in the world. They truly are spectacular human beings. The friends I have today have stuck with me across the country, through times when I have been unable to stand up and give them a hug. I have friends who have cooked me dinner in my own kitchen, because I was simply too tired. Friends who have picked me up from my apartment and driven me around, just for a change of scenery and some time together. Friends who have sent me beautiful care packages. Friends who can, with one conversation, make me smile for an entire week.

I love my friends. And I would hope, that if anything was wrong, that they would tell me. Even if there was nothing I could do, I would want them to let me share a bit of the burden, to let me sit on the phone with them, silent if necessary, just to be there.

I feel that with 100% certainty. In fact, I would be extremely upset if there were something wrong that a friend felt they couldn’t tell me. I want to know the good and bad news, and all the bits in the middle. More than to know, I want to experience it along with them. To me, that’s what friendship is.

And yet, I am a hypocrite. A complete and utter hypocrite.

I don’t lie to my friends. But I do avoid telling them the truth.

Lately I have been having a really terrible time medically. I went through over a week being unable to sit upright for more than 20 minutes at a time. I was, and still am, experiencing sleep disturbances, or hallucinations- events which terrify me. I had been getting worse, day by day, and I was beginning to feel overwhelmed.

I am pleased to say that this past week has been a little better. I’m still in a scary place, but the downwards trajectory seems to have been halted. I have a list of possible investigations to be done. I have plans to latch on to.

Overall, however, things have been rough. I have felt scared and adrift.

And yet, I have not reached out to a single friend. Not only have I not reached out, but I have avoided social contact, not replying to messages and emails. I have retreated, hunkering down, with the mindset that I just have to get through this, and then I’ll deal with everything else. This just have to get figured out first.

It makes sense. There are so many reasons why I have isolated myself. I mean, it’s not like this is the first time that things have gotten scary, nor do I believe it will be the last. Why burden my friends when there is nothing at all that they can do? Especially around exams, when they really don’t have time to talk anyways? Why make them upset or uncomfortable? And on a whole other note, I have been struggling to keep up a conversation, both in focus and speech. I would be a mess on the phone or Skype, a side that I never enjoy portraying. Furthermore, it feels so wrong to contact someone for the sole purpose of them making me feel better. It feels presumptuous and unfair.

My reasoning makes sense. It’s entirely rational. And yet it holds no weight.

Because I wouldn’t think it presumptuous or unfair for a friend to call because they were upset. I haven’t. I don’t.

I would not feel it as a burden.

I would be glad that they called.

I might feel helpless, and I might feel upset. It might even come at a bad time.

But I would feel honoured, to be trusted.

I want those calls. I expect those calls.

I want and expect to be leant on, once in a while, by the people in my life.

And I would feel terrible, to know that someone was rationalizing not calling me. That someone was, perhaps, avoiding me, because they felt they weren’t at their best.

No one is always at their best. No one has only good news to share.

Positivity is important. It is important personally, in life, and in friendships. It keeps us going, it allows us to hope and dream, and it draws us to each other.

But honestly is also important.

And, above all that, maintenance is key.

Of all the various friendships that have passed through my life, few have ended in a dramatic fight. The rest have faded, drifting apart through lack of contact, lack of care.

What we say is certainly important. How we see each other, how we treat each other, that all matters a great deal.

But first we have to speak.

Go to bed

But I’m not tired!

Just 15 more minutes!

I’m hungry!

I have to finish the chapter!

These phrases were a cornerstone of my childhood. From me to my parents, protesting the highly unjust phenomenon of bedtime, to the children I babysat, avoiding their comforters with the skill and dedication of trained operatives.

It seems to be a universal phenomenon that children do not like going to bed.

And there are many explanations. Maybe we were afraid of the dark. Maybe we had nightmares. Maybe we didn’t want to miss out on anything. Maybe going to bed felt childish. Maybe we were just having too good a time awake.

Lately, I have been feeling a lot like my childhood self. I have found myself looking for excuses to avoid going to sleep. I think that one more hour won’t make a difference. I think that I really should empty the dishwasher. I think that I should see if my brother’s online, and available to talk.

When I finally do crawl into bed, far past the time that my eyelids began to droop, I drag my computer with me, huddling under my covers as I used to with a book, postponing that moment when I simply have to lie there in the dark, alone.

It’s unusual for me. I tend to love that special, uninterrupted time to think before drifting off to sleep. I love to go to bed early. I love to wake up slowly, to stay in bed as long as I can, to fall back asleep if I can.

But that’s no longer the case. I am avoiding sleep as much as humanely possible for someone with extreme fatigue.

And it’s understandable. Lately, I have been having terrible nights. I lie there, immobilized, shaking from the cold and pouring sweat. I slip between levels of consciousness, the lines of dream and reality blurring, frightening me. I wake up to severe pain, to overwhelming fatigue in my limbs, and to fuzzy memory with great confusion about what actually happened during the night.

Sleep has not been restful. It has not been rejuvenating. It has become a dreaded experience, that comes around at least twice a day.

And so, I have reverted to childhood. To dismissing the lure of a cozy bed despite rubbing my eyes and yawning.

Yet, there’s something a bit reassuring about all of this.

Because as I dread sleep, I cling to something else.

I cling to the state I prefer to be in, the level of alertness that I enjoy.

I stay up late talking and reading and watching and learning. And even when I finally turn off the lights and lie in bed, I spend hours thinking and dreaming and planning.

I like it.

I like being aware.

I like being awake.

Dark Corners

I’ve always loved fantasy.

From fairytales and books to movies and TV series, I have always been drawn to the fantastical. To alternate universes. To magic.

There’s something so exciting about slipping into another world, a world filled with possibility.

I’ve always loved fantasy. I still do.

But I have never really believed in it.

Well, that’s not quite true. When I lost my first tooth I swore that I saw the tooth fairy land on my pillow. She was so tiny, I had no idea how she managed to carry the big coin I found under my pillow the next morning. Even at the age of 5 I questioned the mechanics, and imagined a coin carrying device that was just out of my sightline. But still, I stuck to my story. I saw the tooth fairy and no, she was not a bug.

So maybe a small part of me does believe in magic. Or wants to at least.

Maybe that’s what draws me to the genre. A faint hope, or desire to hope, that maybe, somewhere, there is something different. Something more.

But the majority of me lives firmly within the world of ‘reason’. I believe in what I see. What I can understand. I struggle to look beyond that and I generally prefer not to.

There is so much information available in the world today. If I’m wondering about something, I can simply type it into google and get pages upon pages of answers.

It makes me feel confident. It makes me feel powerful.

But that was all challenged this past week.

This past week, I was told by a doctor that he could not offer a single suggestion for what to do about my steadily worsening medical condition. He said he didn’t believe that in 2014 the tools to understand my medical difficulties exist.

It startled me.

In the past, I have been told that my condition must be caused by my weight despite symptoms not improving with weight loss, linked to anxiety despite being assessed with an opposing conclusion and any number of, for lack of a better word, ‘cop-outs’.

These doctors have not known or understood what was happening within my body, and so they latched on to an explanation, any explanation.

But still, they always had something to offer.

This was the first time that I had been told by a medical professional, directly, that there was nothing he could do for me.

Of course, he might be wrong.

After all, it’s not like he searched all that hard. I only saw him twice, briefly, when he popped in to confer with the Resident examining me.

But he must have believed in what he was saying. He felt sorry for me, and sympathized with the position I was in, the frustration I must be feeling. But he did not believe that there was anything that could be done about it.

As he spoke, a tiny voice in my head whispered – what if he’s right?

In that simple question, a bit of my world crumbled around me.

I am so used to answers, to explanations. I expect them, even when they’re hard to find. I cling to them, even when they’re wrong. They are the ultimate goal in any question I may have.

The possibility that I am living with something unknown is frustrating. The possibility that I am living with something that cannot be known is overwhelming.

After the appointment, I spent a few hours trying to process, to come up with a plan, to figure out what to do next.

At first, I felt paralysed. I had no idea where to look, what I was even looking for.

Gradually though, my thoughts cleared up.

First of all, this was one man’s opinion. There are many other doctors, many other tests to be run, theories to hatch and rule out.

But regardless of that, does it really matter?

We like to think that we have answers. At least I do. But there is always an element of uncertainty, even if we choose to ignore it.

After all, the state of pregnancy has never been a mystery to diagnose, yet well into the 20th century women were encouraged to drink alcohol as a cure for morning sickness and fortification for labour. Next it was deemed dangerous and potentially harmful, and today there are studies challenging even that.

It’s nice to think that there is a reason, an explanation. It makes the world more comfortable, to feel that there are no dark corners.

But really, this world is full of mysteries. And all that we can do is keep track of them and try our best to adjust to them. Try our best to live with them.

The unknown can be scary. It is hard, or rather impossible to make sense of.

And so we avoid the dark, and flood our streets with light.

Still, I think it’s important to remember that dark corners can be full of possibility, Of potential.

A bit of my world crumbled this week.

But it’s kind of nice to get a glimpse of the sky.