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!


Health and happiness and peanut butter

I love Christmas (you’re all shocked, I know). I would give up birthdays for the rest of my life for one Christmas season. I have always loved Christmas, but the last few holiday seasons have come when I needed it most, when I really don’t know how I would have made it through if I didn’t have Christmas to look forward to.

Now, as much as I love Christmas, and as much as it’s helped me through those otherwise very bleak times in my life, Christmas has also brought with it some big letdowns…I mean come on, is a pony really too much to ask for? No but seriously, for the last few years, Christmas was also the time of year for facing up to the fact that despite how earnestly I had wished that by next Christmas I would be healthy, I still wasn’t.

Christmas is the time of year when the whole world sort of turns into a greeting card. I love a good dose of cheesiness as much as the next person. Actually, that’s a lie; I love a good dose of cheesiness more than the next person, but one type of holiday wish always contributed to the letdown…

Wishes for a healthy and happy new year!

Health and happiness to you and your loved ones this holiday season!

Blah blah blah healthy and happy blah blah blah!

Health and happiness join forces as a very common wish this time of year. They are kind of the peanut butter and jelly of the Christmas card world. Heck, I’m sure I’ve wished the pair countless times in the past. I’m a sucker for alliteration so I can’t help liking how they sound together, especially when you add the word holiday to the mix.

Yet, each year when I would write Christmas cards and wish people health and happiness, and each year when I would open Christmas cards wishing me the same, I was faced with the disappointment that another year had gone by and I still wasn’t healthy. And then I would once again spend the next year wishing and waiting for that magical holiday combination of health and happiness to find me. Basically, I was waiting for my life to turn into one of the made-for-TV Christmas movies I spent all day watching. But all that wishing and waiting and disappointment? It was exhausting.

I was really sick last Christmas. Well guess what? I’m still really sick. Sure I’m better in some ways, but I’m also worse in some ways. Mostly I’m just more used to everything so I’m a lot better at faking my way through it.

Bummer, I know.

But wait, it gets better.

This is the first year since I was first sick six Christmases ago that I’m not disappointed to not be healthier than I am. I spent all those years wishing and waiting to be healthier because I thought that I needed better health to make me happy. Here’s what I’ve come to learn, though – one does not depend on the other. Don’t get me wrong, being healthy and happy at the same time is wonderful! However, there are a lot of people in the world who are healthy and not happy. And there are a lot of people in the world who are happy even though they aren’t healthy.

I know because I’m one of them.

I’m not waiting to be healthy anymore. All that waiting was actually getting in the way of me being happy. I don’t need to be healthy; I can be happy anyway.

I am happy anyway.

Of course I would love to be healthy, too! Who doesn’t like peanut butter and jelly? And being healthy is definitely something to be happy about. But it’s not the only thing.

Now, don’t get the wrong idea here and think that being sick sounds like a good way to find happiness. It’s not like that. And it drives me crazy when people don’t appreciate their health and don’t take care of themselves, so if you start to throw your health away I will probably hit your head against the wall…except not actually because what if you got a concussion? Then I would be the one contributing to your compromised health and I wouldn’t want that. No heads against the wall then…instead I’ll just stare you down and I don’t want to brag or anything, but I do a pretty good stare down. But this is off topic…

Anyway, health is not the only thing to be happy about. Today I’m happy that my sister gave me some rolls of life savers. I’m also happy that I had enough energy to drive myself to go drop off a Christmas present for my favourite doctor. I’m happy that I got to spend some time catching up with one of my friends via text this morning. I’m happy that my cousin Nicole helped me pick colours for my next crochet project. Oh, and I’m happy that my favourite sweater was clean so I could wear it.

Happiness is about making all those little things you’ve got count for more than the big things you don’t. It’s about loving what have, not having it all.

Yes, peanut butter and jelly are a classic combination, and health and happiness together are lovely, but let’s be honest here, peanut butter tastes pretty damn good all on its own.

So to all of you wonderful people reading this, you make me happy. From the bottom of my heart, thank you for following along and being part of this with me. Wishing you a Merry Christmas and may your holiday be full of…

Peanut butter 🙂

P.S. No I didn’t eat the peanut butter! Yikes. The temptation was worth the photo opportunity!

Dear new doctor…actually scratch that formal dear business

You can read an updated, more universal version of this piece over at The Mighty.

I read this article written from a doctor’s perspective earlier this week and while none of it was a surprise to read, it really resonated with me. Since having recently learned that my family doctor of 23 years is retiring at the end of this year (with no one to replace her…eek!), I’ve been thinking a lot about the whole dynamic between doctors and chronic illness patients. So, of course, I put those thoughts into words.

Dear new doctor,

…Actually scratch that formal “dear” business. I tend to use a more familiar greeting when writing letters to anyone who is privy to the inner workings of my intestines and my ovaries…because of course I write a lot of letters to people about those very topics and thus have determined that a more familiar greeting is appropriate…

You don’t know me yet, so let me just clarify that I’m kidding. I don’t actually write letters to people about such things.

So anyway!

Hi new family doctor!

I am sincerely pleased to meet you. Even though I’ve seen a lot of doctors before you, I’m excited by the possibility that you might have ideas and options for me that no one has ever mentioned.

I’ve got to say, though, I’m also rather apprehensive.

You’ve probably noticed by now that my chart is fairly…uh…lengthy…and you might be wondering what you are getting yourself into by accepting me as your patient. I’m not the kind of patient that can be easily fixed and I know that can be really disheartening and frustrating. I get disheartened and frustrated, too. Look at that! We have something in common!

Here’s what I want you to know about being my doctor.

I don’t expect you to already know much about my illnesses, and actually it’s very possible that right now I know more about them than you do. Please be okay with that. Consult the internet or talk to other doctors to learn more if you want, but when it comes to understanding how my illnesses affect my life, talk to me. And even if you are already familiar with managing these conditions, don’t forget that my body didn’t read the textbook chapter on “how to have gastroparesis, POTS and EDS” before it decided to get sick so it might not follow all the rules.

Keep in mind that the 10 minutes in which you see me is just a snapshot of my life. You might see me at my best or you might see me at my worst, but most of the time you’ll probably see me somewhere in between. Please don’t make assumptions about how I am doing based on whatever snapshot you happen to capture that day. Just as my frown does not imply the presence of depression or defeat, my smile does not imply the absence of worry or pain. I smile a lot. I laugh a lot. But I still understand my reality, and I need you to understand it, too.

You might be scared of me because I have a chronic illness, but you should know I’m scared of you for the same reason, because I have a chronic illness. I’m scared you won’t trust my instincts and will treat my concerns as overreactions. I’m scared you might confuse not being able to fix me with not being able to help me at all and then give up. I’m scared you will think I’m lazy or just not trying hard enough. You see, I can be as well-informed, empowered and proactive as I want, but I have no power. I can’t prescribe meds, order tests or make referrals. I need you for that. I have the day-to-day-living-in-this-body experience thing going for me, while you have the foundation and education, and you have the years of experience treating other patients. I know that you can see things I can’t because you are not living it day to day, and I respect that. I hope you will try to see things through my eyes, too.

I know that you are human and I promise not to hold that against you. I know you make mistakes and I’m okay with that. Sometimes I’ll catch your oversight, but that doesn’t mean you aren’t doing your job as my doctor, it just means that I’m doing my job as a well-informed patient. I know you won’t always have the answers and I’m okay with that, too. I don’t expect you to know everything, but please be honest with me about it instead of giving me a confusing and round-about answer. I also know that you won’t always be able to help me. Sometimes at the end of an appointment you will feel helpless. That’s okay. The next appointment will be better.

But I’m human, too, and sometimes I get defeated. Because I know that things could be worse, sometimes I forget that I’m allowed to wish things were better. And sometimes I stop fighting for them to be better. I lose hope. I need you to fight for me when that happens. Remind me what determination and perseverance look like.

Please know that I will always appreciate you giving your time to help me. I know it’s your job, but I’m grateful all the same. I see a lot of doctors, but I know that you are the one with the most comprehensive view. You are the one looking at the big picture and you are the one keeping me from falling through the cracks. I know there will be lots of trial and error, confusion, and paperwork…and I’m really sorry about the paperwork…but there will also be successes and milestones. And joy. No matter what is happening, no matter how sick or healthy I am, I promise you there will still be joy.

That doesn’t sound so bad, right?

Oh, and just in case it helps, I also come with a free supply of dishcloths, hats and scarves.