One with the trees

Here we are in a new year and so it’s time for a new One Word!

Last year I started by just picking my one word for one month at a time. Everything about my life felt very up in the air last January so I wasn’t ready to think ahead further than that. As it turned out, though, a few months into the year the word advocate came forward as my focus. While the word advocate can be applied in many different settings, I meant it in a health-centered way. And it worked out well for me! I made a lot of really important health-centered steps forward last year. I got a POTS diagnosis. I finally got my EDS diagnosis. I got a new family doctor. Those were the big ones, but there were a lot of small successes throughout the year, too.

I will never stop needing to be an advocate for myself. That said, I don’t need it to be my only focus right now. This year, I am going to be one with trees. Yup, that’s right, I’m dying my hair green and wearing a tree shaped car air freshener around my neck.

Not quite. I am going to be one with trees though, because my one word for 2016 is Branch.

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And now I am going to make my high school English teachers proud (Hi Miss Triveri!) by walking you through an extended metaphor.

When I got sick I was uprooted. I had been on steady ground, I had been thriving, and then it was as if someone pulled me out of the life I knew and tossed me aside. It didn’t matter how hard I had worked, how many connections I had made or how many goals I had set for myself, all of a sudden I found myself on unfamiliar and unfriendly terrain. I couldn’t thrive there. I lost all of my leaves, on the outside but on the inside, too.

I spent the next couple of years desperately attempting to find my way back to where I had been. I didn’t spend much time trying to figure out this new ground beneath me because why bother putting down roots when I was determined not to be there very long? My eyes remained on my old turf. I enviously watched all those other trees continue to thrive while I, from a distance, continued to shrivel away.

But then something changed. I took a look around me and realized that maybe I could find a way to grow right where I was. In a lot of ways this new terrain was less welcoming, but in some ways it was more forgiving. It wasn’t strictly better or worse, it was just different. It took a lot of hard work, but I was able to establish some roots. That’s what I was doing all last year while advocating for myself, I was putting down roots.

And now? Now I’m ready to branch. Now I’m ready to see how see how far I can reach right from where I am. I don’t know exactly what this will look like yet but I do know that I will be able to weave it into a lot of different areas of my life.

In terms of my health, my diagnoses are my roots. Now that I know what I’m dealing and now that the big things are being treated and managed, my new doctor and I can start to take a look at the little things, the better quality of life things. Now that I have a better understanding of what my limitations are, I’m learning how to be mindful of them instead of doing more harm than good by ignoring them. I’m working with my physiotherapist to improve my strength and stamina in a way that protects my zebra joints.

I also have roots in this blog. I started putting my words out there a little more last year which gave me the chance to connect and form friendships with a lot of really awesome people. I hope to branch out even more in my writing this year.

And perhaps one of the hardest things for me will be to branch out when things are not going well and reach out to other people when I need help. I have roots in the form of incredible people in my life, family and friends who never stop letting me know I am loved, but I tend to hide away when things are tough and wait until I feel in control again before letting them in. I’m going to try to let them see me and support me even when I’m losing leaves.IMG_0971

I’m going to be one with the trees. I’m ready now to figure out how to thrive within this new terrain, not against it. There will still be times when I lose my leaves faster than I can grow new ones and there will still be times when I feel left behind by all the other trees, but I hope to surprise myself by how much I am able to grow.

I’m going to make like a tree and leave now. You’re probably groaning, I’m sorry, but what can I say I’m a sap when it comes to puns. Don’t worry though, I can’t think of any more. I guess I’m stumped.

Okay. NOW I’m done.

Happy New Year Tutu You

I used to have this whole other life. I try not to think about it all that much because I don’t find it particularly helpful or productive to long for the life I loved and lost, but bits and pieces of this other life just pop up now and again.

Sometimes, these bits and pieces take me by surprise and it feels like they belong to someone else. Like yesterday, when in the middle of an organization overhaul I came across a big fat binder labelled “Genetics, Stats and Cell Metabolism” followed by another one labelled “Physiology 1, 2 and Anatomy.” Were those my binders?! Did I really used to know all that stuff?! Weird.

Other times these bits and pieces bring with them memories that are much more heart achingly familiar. Again like yesterday, when amidst the same organization overhaul I opened up a box with a few pairs of old pointe shoes. I should add that in addition to being full of heart achingly familiar memories, this box is also kind of smelly. Even still, those smelly old dance shoes always make me sad because dance was such a huge part of my life for so many years and I really miss it.

Yesterday, though, I felt a little less sad than usual. I actually even smiled!

But of course, before I tell you why I smiled I shall ramble on for a while with some back story. Pretty sure you know the drill by now!

I grew up dancing. I started taking ballet classes when I was four years old with my best buddy.

I am third from the left with the jellybean tummy and hyper-extended knee…hello early signs of EDS! We were frogs, by the way. A few years later we were bluebirds…I would like to note that I have very clear memories of our mothers posing us for that picture and I’m not sure what they were thinking either.

The older I got the more classes I took…and the more brightly coloured spandex costumes I acquired. As a teenager I started teaching dance. I seriously loved my job, and one of my favourite classes to teach was baby ballet for 3 and 4 year olds. Baby ballet is all about imagination. It was chaotic but also a lot of fun! Plus the little ones always wore the cutest outfits and said the silliest things.

Now, you probably already know this, but I love to crochet. I love it because I’m fairly certain that it keeps me sane, but also for many other reasons that I will write about another time. I don’t have a favourite thing to make, though one thing I always enjoy making is a tutu! Why yes, you can crochet a tutu. Every time I make one I spend a few minutes just bouncing the skirt up and down and watching the ruffles dance. Following this delight, I always say that if I still taught baby ballet I would make tutus for all my little ballerinas as well as one for myself because how much fun would that be? And then I follow that up by thinking about how sad I am that I can’t teach dance anymore and thus have no need for a tutu.

Last time I made a tutu, though, I had a new thought…I thought well why not? Why do I have to be a ballet teacher to wear a tutu? Why can’t I still make myself one?

And so I did! I made a Catherine-sized tutu!


Safety warning: Make-shift self-timer photo shoots may cause tachycardia, dizziness and shortness of breath. Attempt with caution.

Besides being fun, my tutu is also very wise. When things aren’t going my way, my tutu tells me that I can make my own magic. When I’m worn out and tired of this life, it reminds me that I can still sparkle. When I feel powerless, it encourages me to stand up for myself, even if it means ruffling a few feathers. And when I feel like I’m 24 going on 80, trapped inside this falling apart body, my tutu assures me that there is still a silly, whimsical little girl inside of me.

So when I came across my old dance shoes yesterday I smiled because now I have a tutu. It doesn’t make up for the fact that I can’t dance anymore, but when I miss the whole other life I used to have, the whole other me I used to be, it reminds me that I can still make the best of the life that I have now. Even though nothing around me changes, life just seems a little bit brighter when I put on my tutu. “Ahhh young whippersnapper,” my tutu says, “the way you see the world is up to you.”

And isn’t that such a great reminder as we find ourselves at the start of brand New Year?

We can’t change the past, we have no idea what is going to happen in the future, and we can’t even control everything that is going on right now. We can, however, control how we deal with right now. We have the power to choose to see the best in things and to make the best of things. We can sparkle. We can make magic for ourselves. We can sparkle and make magic for each other, too.

So whether you make grand resolutions or not, whether the end of 2015 finds you struggling or succeeding, and whether you’re hopeful or hesitant about the year to come, my New Year’s wish for you is that now and again in 2016 you make time for a little silliness and whimsy, and that you let yourself sparkle because I believe the world is a better place with your magic in it.

Happy New Year tutu you!


Hugs from a cloud with a touch of life perspective

This post is inspired by my new towels.

You might be thinking, “Alright she has really lost her marbles this time,” but that’s just not the case. First of all, I don’t think I’ve ever owned any marbles thus I have no marbles to lose. And if it’s my sanity you are worried about, does this really look like the face of someone who’s going a little crazy?

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I didn’t think so.

Sooo where was I?

New towels.

I got some new towels for my birthday last week. I didn’t ask for towels, not because I didn’t want them but because I didn’t know what I wanted. It turns out that new towels ended up being one of the most exciting gifts I’ve ever received!

Unlike the old, mismatched and slightly scratchy towels I’d been using, these new towels are awesome! I was feeling very grown up as I started pulling towels out of the gift bag…hand towel, face cloth, bath mat, larger-than-a-hand-towel-but-not-too-large-perfect-for-wrapping-up-wet-hair towel…and then there was one more. I held a large towel in my hands and became very confused.

”What is this one for?”

“It’s a bath sheet.”

“But what do I do with it?”

“It’s a towel. Like a towel-towel. Like for showers.”

Before you start to think that I’m just the most clued out person ever, you should know that I’ve never had my own ‘bath sheet’ before. (Side note: who knew that those large towels were even called bath sheets?) You see, for as long as I can remember I’ve used beach towels. When I was growing up we all used beach towels for showers because you could buy large, inexpensive and relatively sturdy beach towels at Costco in a variety of fun patterns, perfect for three kids who shared a bathroom and didn’t want to get their towels mixed up.

That’s just how we did it. I so clearly remember being the first kid home one day when my mom had bought us all new towels and getting first pick (I am the youngest child so getting first pick was very exciting)! In fact, just a few weeks ago I noticed that my towel was getting scratchy and I’ve been meaning to ask my mom to pick me up a new one next time she was at Costco. As I said, beach towels are just what I know.

So when I pulled out the bath sheet I didn’t know what to do with it. It seems silly now but it never occurred to me that I could use anything other than a beach towel.

It never occurred to me that there was another way.

Before I continue I just want to say that my new towels are absolutely delightful! It’s like being hugged by a cloud. I’m not talking about real clouds…the large collections of tiny droplets of water or ice crystals…I’m talking about fluffy and trampoline-like clouds, the kind that I dreamed about jumping on as a kid. My old towel has a fun pattern, but look how sophisticated my new bath sheet is! (By the way the wine glass is just to emphasize the level of sophistication.)

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Energized by the awesomeness of my new towels, I started to wonder about my routines and my habits…how many times have I done something a certain way just because it never occurred to me there was another way to do it? I love a good routine as much as the next person. Truthfully, I probably love a good routine more than the next person; I’m a big fan of tradition and not a big fan of change.

But sometimes change is a good thing! Sometimes an open mind or a willingness to try something new is worth it.

When my sister graduated from a crib to a real bed (and just in case there is any confusion this is not a recent event but one that happened before I was even born!) she didn’t know she could get out of it on her own. After she woke up she would call for my mom to come take her out of bed because she just assumed she was stuck in bed like she had been stuck in her crib.


Aside from Natasha being a cute toddler and aside from this being a cute anecdote, this story has a point. She was stuck in bed because of boundaries that didn’t even exist. How often do we limit ourselves by never bothering to find out if the barriers holding us back are even real or not? My first word was “uh-oh” and my nickname is Careful so I’m all for being cautious, but sometimes taking a chance and venturing over the edge of the bed is worth it.

I don’t want to be stuck in bed and I don’t want to go through the rest of my life using a beach towel instead of a bath sheet. Literally and figuratively.

In case I haven’t said it enough times already, my new towels are awesome. And I want as much awesomeness in my life as possible which means keeping an open mind and being willing to do some things differently from how I’ve always done them. I’m grateful for my new cloud-hugging towels, but I’m also really appreciative for the reminder and encouragement to let go of what I know and try something new. Different isn’t always scary. Sometimes it’s fun. Sometimes it’s eye-opening. Sometimes it’s freeing.

And sometimes it’s awesome.

You know what else is awesome? My new towels. Alright I’m done now!