New York

My feet hurt. My joints ache. My eyes droop.

And I feel great.

This past week, I went to New York. It had been quite nerve-wracking to contemplate – the 8 hour drive, the unfamiliar environment, the challenges in food and sleep.

I knew that I could get through the week, but given all of the potential disasters looming, I wasn’t so sure that I would enjoy it.

As the trip began, it seemed like my nightmares were being realized. On the drive down we struggled to find food that I could eat, and my difficulty ended up delaying everyone else’s dinner by over an hour.

It was bad enough that I had to suffer, but it felt monumentally worse to know that I was negatively effecting the vacation of others.

I hoped desperately that it wasn’t a sign of things to come.

The next day, after a few more bumps on the road, we arrived at out hotel. And I was exhausted. But I couldn’t bear the thought of being in NYC, and waiting 15 hours to see it. I decided to go for a walk around Times Square with my family.

And by the time we returned to the hotel, I was finished. I could barely convince my brain to put one foot in front of the other. I collapsed in a chair, unable to speak above a murmur, and waited as the waves of exhaustion crashed over me, causing irregularities in my heart rate and nervous system.

And I was so angry. If I had had any energy, I would have most likely thrown a tantrum.

I knew that I couldn’t go through that every day. My body wouldn’t be able to handle it. I would have to take it easy for the rest of the vacation. To be smart. To be be careful.

And I didn’t want to. I wanted to go out with my family that night. I wanted to go out early the next morning. I wanted to take advantage of every minute in that fantastic city. It just wasn’t fair.

But I had no choice. The next morning, I slept in. I spent all morning slowly waking up, hanging out in my hotel room, close to tears.

Then, I went for a walk through Central Park. And after, I got to see a cousin that I haven’t seen in years.

Later, I went back to my hotel room and had a nap.

But that evening, I went to a show. A show so achingly beautiful it shattered my heart. A show featuring one of my most loved performers, childhood idols, and musical inspiration.

And slowly, things began to make sense.

Over the mere 4 days I spent in the city, I had the chance to visit with friends that feel like family, and family that feel like friends.

I saw 4 Broadways shows that intrigued my mind, warmed my heart and touched my soul.

I walked around the city, and had the chance to see some of the beautiful pockets of nature nestled within.

And I looked after myself. I did no harm. I took breaks between activities and slept in.

And sometimes my family went and did things without me.

But that was okay. Because I was having a great time. I was able to actually enjoy everything that I did. I wasn’t in pain during the shows, or shying away from the sound of laughter.

I was glad and so relieved that my family was also enjoying their vacation.

Now I’m home, and feeling the repercussions of the trip. I am exhausted, truly exhausted, to my very core.

But I have already unpacked my suitcase. I have already gotten a haircut and gone for a walk through the forrest. I have already cooked my meals for the week.

I had several wonderful experiences, new experiences, exciting experiences, and what I didn’t do is completely irrelevant because I was able to fully experience everything that I did.

I had a great vacation. 

I had the perfect vacation for me.

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Spot

I feel like I’m spinning. The world is flying by quickly, too quickly, and everything’s a blur. I feel out of control. The world around me feels out of control.

I have bounced from activity to activity all week, barely able to catch my breath. And as I look ahead at my calendar, my days only seem to get more crowded with so many things to accomplish before I begin class in a mere two weeks. Before I take on a commitment, to be in a certain place at a certain time, three days a week, regardless of how I feel.

I must say, I hate it. I hate feeling out of control. I hate knowing that if I need extra rest, it will be difficult to take it. That I will have to sacrifice a commitment.

And I’m scared. Terrified. I fear the speed. I fear twirling myself backwards. I fear tiring myself, when I have such delicate resources. I fear falling. I fear making the wrong decisions.

I haven’t been sleeping well. I find myself growing anxious through the day. I have bristled at the slightest comment.

Yesterday, I went for a walk. It was raining slightly, and cold, but nothing overly dramatic. I made it about 400m before I started to feel ill. My head pounded, the sounds around me were amplified, my body ached, and I was short of breath.

I couldn’t believe how awful I felt, especially considering the fact that the previous weekend I had hiked 6km and only really felt it on a steep hill towards the end.

But I couldn’t just give up. I had made a plan to walk.

And so I did. I moved incredibly slowly. But about a kilometre in, I started to feel a bit better. And as I kept walking my body started to ache in the right places. I started to feel tired in the right way.

I had lots of things on my list for the rest of the day. I accomplished a fair number of them. But I needed to take some time to rest. So I rearranged my plans, shifting activities.

And I’m okay.

I had an overwhelming day. I had been dreading it all week. But I made it through, no worse for wear. I actually enjoyed parts of it.

When I first attempted a pirouette in dance class, I lost my balance every time before completing the turn. My teachers told me that it was all about focus. I had to ‘spot’. To choose something to look at, and to keep my eyes on it as I turned. To let myself turn, without letting the world turn around me. 

I was also told that I had to trust myself. To trust in by ability to execute the turn, despite the blurred walls around me.

And maybe there’s a lesson there.

Maybe I need to choose something to focus on.

Maybe I can learn to move quickly and gracefully through my days without becoming dizzy.

Maybe my days can be steady.

Maybe my world can be steady.

Maybe it comes down to trust.

Baby Steps

I have always had big dreams.

I used to spend hours making lists of what I wanted to do. Mapping out ideas. Making plans.

Some of them were acted upon. Some slipped away. And still others remain, floating and evolving, for future use.

I still lose myself in my imagination. Although that word feels wrong. ‘Imagination’ seems to imply a fantastical nature to my musings. And that’s not true.

Each idea that I seize upon gets treated to a rigorous and detailed examination. I study exactly what would have to be done in order for the idea to come to fruition. I map out potential problems, and possibilities. I take my dreams and subject them to harsh reality. But still, many survive with the thought of actions- hard work and patience.

And I have never seen this as a fault. Because often, my grand plans do come into being.

But lately, I find myself feeling guilty and ashamed. I still make plans, but I feel conflicted about sharing them.

Because for the past several years, I have shared many dreams, and none of them have become a reality.

And when I hear myself, all excited about yet another idea, I cringe. I sound as though I have lost touch with reality. That I simply live in a fantasy mindset.

I see my family and friends humouring me, nodding their heads indulgently, not wanting to discourage my excitement, but not truly believing in the possibility.

And I don’t blame them. After all, I have come up with countless exciting ideas over the past several years that have been silenced.

Yet, if I search, I can come up with many opposing stories.

In the winter of last year, when I was barely able to walk 300m, I decided that I would be ready to attend school again this September. And while I recognized that I may have to do it with mobility assistance, I was confident that no matter the state my body was in, I would have developed enough control over myself that I would be able to take on a commitment.

And now I am watching the date that marks the beginning of classes swoop upon me, as I study my university timetable for the Fall term.

I also dreamt of writing a blog. I was so incredibly excited about the name, the colour scheme, and the subject matter. I told everyone I met about that particular dream.

And now I type up my 33rd post, with full confidence that it will be read.

Other dreams I did not share. I did not talk about my dream to be capable of strolling through a museum or store, able to appreciate the display, not searching for a chair. I did not talk about my dream of hiking. I did not talk about my dream of singing.

But I did work hard towards all of those dreams. They became goals. Goals with a certain element of luck and chance, but projects nonetheless.

And after months of steady work, those dreams have all been achieved.

There are still the others. The ones that grew silent. But they have not disappeared. They still exist, waiting for their time, knowing that it may be years, or decades, but sticking around nonetheless.

Now when I speak of my dreams, I speak of business plans, of travelling, and of graduate school.

I research and write and plan.

But I understand the steps that it will take to get there. I understand that my path might change.

I was asked this week, after sharing a far off hope, whether I understood the concept of baby steps.

And I think I do. I know that it takes time. I know that it takes effort. I know that I will trip numerous times.

But when learning to walk, I believe that it is essential to have a destination in mind. It might change. The person calling you might move, or you may become interested with an object in a different direction.

But why walk, why take any steps at all, if there is nowhere you wish to go?

Better

For a while now, I have been dogged by compliments. Compliments about how good I look. Compliments on how strong I seem. But above all, compliments on how much better I appear.

And I want to appreciate it. I want to feel pride in my immense accomplishments, or at the very least joy in the chance that have been given to me. I know that these words are only meant positively. But for some reason, all I feel is discomfort. An instinct to protest, to evade the label of ‘better’.

And that doesn’t make any sense. After all, in many ways, I am better. I am better at managing my energy. Better at managing my medications. I am stronger. I look more fit.

I should take pride in that. After all, I have been working incredibly hard, for over a year, to bring my body to this state of relative balance.

When I think of each individual achievement, I do feel a certain amount of pride. When I think of how, over a period of 7 months, I progressed from walking 100m to 5km. When I think of the endless hunt for medical care, working through countless doctors and drugs, creating diaries of side effects, pain levels, and triggers, finally landing on the correct medication. I feel as though I have worked hard for my recovery, and I feel good about that effort that I have invested.

But for some reason, I balk when someone tells me how much better I am.

And maybe it’s not simply the compliment. Maybe it’s the surrounding attitude.

For the past several weeks, I have noticed a distinct change in how others approach me. Those who did not meet my eyes now feel comfortable enough to joke at my expense. I am not given an easy out for a commitment anymore, and my needs are not a priority in the formation of plans.

And a big part of me loves it. Relishes it. Because it feels so normal. It feels like the past few years never really happened, like I’m the same person I always was. And everyone is happy about it, and willing to jump right back in where we left off.

It’s wonderful, it really is. But it’s also a lie.

The past few years did happen. They changed me in ways that I am only now beginning to appreciate, both physically and emotionally.

And while my physical condition and management have dramatically improved, I am not cured. I still live with chronic illness. There are still days when part of my body simply refuses to function, still mornings that I wake up unable to rise out of bed for hours. And there always will be.

Yes, I am better. I am astonishingly better. I am better at managing my condition, my time, my life. I am even physically stronger.

But I am also not. My condition has not disappeared. My work ethic has not changed.

To react to me differently now, now that my struggles have turned invisible once more, feels unfair. To gush about my current condition seems to darken the me that was, such a very short time ago.

And maybe that’s why I bristle at the kind words, meant only to please me. To encourage me.

Regardless of my physical condition, I am, and always have been, nothing more or less than myself.

I am strong, fighting just as hard as I did when I had nothing to show for it.

I am smart, rationing my energy just as precisely as I tracked my symptoms.

I am many things, and they have remained constant.

My outer layer, my appearance, my superficial abilities may be altered. May even be better.

But I’m not.

I’m not better.

I’m just me.

Liebster Award Nominee

I must admit, I was completely surprised as well as honoured to see that last week I was nominated for a Liebster Award. I had never heard of the award, but I read up on it, and it seems like such a lovely thing, although it does have some strings attached.This kind of explains what you have to do http://wordingwell.com/the-liebster-award-the-official-rules-my-first-blog-award-and-a-few-personal-secrets-revealed/.

So, first off I would like to thank Skylar for the nomination. She writes a wonderful blog that I would encourage everyone to go take a peak at. Thank you very much!

Secondly, as per the instructions, here is the image of the actual award!

Liebster Award

Next, I am required to answer 11 questions about myself. So here goes.

1.Three things you’re passionate about?

Music, Health Care, and Accessibility – in the broad sense of the word.

2.If you could relive a day or an event which would you choose and why?

I once sang to a monsoon in a rural village in India, and saw a man pause on his journey home, and listen through the sheets of rain. I’d like to feel that full again.

3.Coffee or Tea?

Tea. Without a doubt.

4.Coke/Pepsi?

Neither.

5.Earliest childhood memory?

Flying a kite in front of my house. Well, watching a kite being flown. I must have been 2 or 3.

6.Favourite pass time?

Closing my eyes and listening to music. Although I’m a fan of all sedentary activities- reading, movies, etc.

7.Most exciting place you’ve visited?

I would have to say India. There are few things more exciting than swerving through honking drivers and cows, alongside an Elephant.

8.The last thing you ate prior to answering these questions?

A fried egg over leftover roasted cauliflower.

9.What’s playing on the radio now?

Bach.

10.If you could change one thing about your life what would it be?

There’s many things that I wish for, but I honestly don’t think I’d change anything that already exists. Because even the awful things have taught me and shaped me, and I would hate to lose a part of myself.

Now for the next step. I’m supposed to provide 11 facts about myself.

  1. I used to have a British accent.
  2. I often flip to the end of a book, if I don’t have time to finish it all in one sitting.
  3. I like flowers.
  4. I am scared of insects.
  5. I refuse to let someone kill an insect in front of me.
  6. I love organization.
  7. I won the Governor General’s award, when graduating high school.
  8. My brother is my closest friend.
  9. I dance in the kitchen.
  10. I once went on a 7 hour hike.
  11. I am a complete and utter Harry Potter nerd.

And now, it’s my turn to pass it along! Here are my nominees for the award.

http://zebrahumor.wordpress.com

http://sickandsickofit.wordpress.com

http://chronicallycapable.wordpress.com

Questions for my nominees:

1) What is your favourite quote?

2) When did you first begin writing?

3) Where is your ideal next vacation?

4) Pizza or Wings?

5) What is the last movie you watched?

6) 50s, 60s, 70s, 80s, or 90s?

7) Favourite colour?

8) What is the last book you read?

9) What is your favourite thing to do on a rainy day?

10) What is your greatest achievement?

11) Morning/Night?